ASCO Education: Recent Episodes

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Dr. Pedro Barata and Dr. Kathryn Schmitz discuss evidence-based exercise oncology programs, how to incorporate exercise into cancer care and connect the right patient to the right program, and ultimately build a culture of exercise in oncology.

TRANSCRIPT

Dr. Pedro Barata: Hello, and welcome to By the Book, a podcast series from ASCO that features compelling perspectives from authors and editors of the ASCO Educational Book. I'm Dr. Pedro Barata. I'm a medical oncologist and a clinical trialist at the University Hospital Seidman Cancer Center and an associate professor of medicine at Case Western Reserve University in Cleveland, Ohio. I'm also happy to serve as a deputy editor for the ASCO Educational Book.

Today, we'll be talking about exercise. We have plenty of evidence that exercise benefits symptoms, improves the quality of life of patients, and actually has been shown to reduce risk of recurrence of cancer but also improve survival. And I think that's increasingly clear as data emerges.

Today, I'm delighted to be speaking to Dr. Kathryn Schmitz. She's a leading expert on integrating exercise into cancer care. Dr. Schmitz serves as the deputy director of the University of Pittsburgh Hillman Cancer Center and also a professor of hematology-oncology at University of Pittsburgh Medical School. She's the senior author of a fantastic article in the ASCO Educational Book that's titled "Implementation Science as the Secret Sauce for Integrating Exercise Screening and Triage Pathways in Oncology." She also led a really compelling piece that just got published in JCO titled "If Exercise Were a Pill, We'd All Prescribe It to Patients With Cancer. But It's Not" So I'm thrilled to have Dr. Schmitz joining us today and helping us explore evidence-based exercise oncology programs, how to incorporate exercise into cancer care, and also how to connect the right patient to the right program.

So with that, welcome, Dr. Schmitz. Thank you so much for taking the time to chat with us.

Dr. Kathryn Schmitz: Thank you for the opportunity.

Dr. Pedro Barata: One of the highlights of ASCO last year and practice changing, in my opinion, data out of The New England [Journal of Medicine] is called the CHALLENGE trial. It did provide high level evidence that a structured, supervised exercise program could improve both disease-free survival and overall survival. This is a study in the GI world, but I think it got a lot of attraction and attention beyond the GI world, across solid tumors, really. Could you give us a little brief recap of that trial and what have you seen as being the impact in practices around oncology?

Dr. Kathryn Schmitz: So, CHALLENGE was very exciting. Prior to CHALLENGE, there were any number of observational studies that indicated that there was a relationship between being more physically active and reduced recurrence and improved overall survival for colon cancer in particular. You know, notably, in 2006, Jeff Meyerhardt published two papers in the same journal, of the same issue of JCO, showing very, very similar data from two very large studies. And those were studies number five and six in this area. You know, there's a lot of evidence observationally, but we don't generally change clinical practice on the basis of observational data. So, we were all waiting very impatiently for the results of the CHALLENGE trial. And it was very exciting to be in the front row when the results were reported out and to be part of the group with a standing ovation for the authors when it was presented.

To summarize, 889 colon cancer patients, stage II and III, were randomized into either a structured exercise program or a health education control comparison group and followed for an average of 7.9 years. And the structured exercise group had a 27% reduced risk of recurrence and a 38% improvement in overall survival.

One of the things that's really notable about this is that what we typically expect is that when we go from the observational literature to the clinical trial literature, that we expect effects to go down. We expect to see a larger effect in the observational than in the RCT land, and that did not happen here. We actually see an effect that matches what we've seen in observational literature, which is really, really exciting.

And, you know, one of the reasons why this has been so exciting across not just GI but other cancers is the notable finding of a reduced risk of second primaries. So, they only observed two breast cancer second primaries in the treatment group and 12 in the comparison group. And overall, they reduced the second primaries occurrence, hazard ratio was 0.5, a 50% reduction of second primaries, which is just remarkable. It really got everybody very, very excited. And now the big question, of course, is, all right, how do I do this? How do I make this happen?

The thing to note is that what they did in CHALLENGE is probably not doable in your clinic tomorrow. It's a heavy intervention. The number of touchpoints from staff is extensive, and the amount of time needed from staff for the coaching and supervised exercise is extensive as well. The criteria for getting people into the program required that people go through a series of blood tests and imaging tests that would just simply not be possible for the average community oncologist. So I'm guessing that you're going to ask me some questions about how we do this.

Dr. Pedro Barata: Right. That's a fantastic segue. That's exactly right. Walk us through maybe starting by, what does that mean?

Dr. Kathryn Schmitz: The first thing to say is I have to go back to the observational literature. And the observational literature shows really compellingly that we have a strong reduction of breast cancer recurrence and mortality from being more physically active, prostate cancer recurrence and mortality, and colon cancer recurrence and mortality. I find it very difficult to believe in this day and age, in our current environment, if you will, that we are ever going to have the equivalent of CHALLENGE for prostate or for breast cancer. There is an ongoing study in prostate that's led by some Australian researchers, but I just don't think that it's likely that we're going to mount something similar for another tumor site. We have tremendous correlative data that indicates that there are a number of biomarkers and biological pathways through which breast, colon, and prostate cancer would be reduced in recurrence if people were more physically active.

And so, there is really, from my thinking, very little to state that it would be just a colon cancer effect. And so this is something we probably can enact in more than just the colon cancer community, overall, which is great news, and it makes it easier for us to be able to enact this type of programming.

Dr. Pedro Barata: One of the things that comes up perhaps often is, if I were the leader of the cancer center and were to incentivize the different care teams to implement an exercise program at each level: GI team, GU, breast, thoracic, etc. How do we do that?

Dr. Kathryn Schmitz: So, I want to give you an analogy. You're a medical oncologist, and you prescribe your patients chemotherapy. Now, just imagine, if you will, what would happen and how likely it would be for your patients to get chemotherapy if there was no chemoinfusion suite. If the chemoinfusion suite disappeared tomorrow and you were to tell your patients, "Go get some chemotherapy," what proportion of those patients do you think would go find all of the equipment necessary and all of the drugs necessary and understand how to dose the chemotherapy for themselves and get that all done? Very few people would do it. So with exercise, why would we be surprised then that our patients don't actually do a whole lot if we just simply tell them to go get some exercise? Exercise is a medicine. It is effective like a medicine. We've shown this through the CHALLENGE trial and many other correlative studies and an ocean of observational data as well.

So the question is, how do we build the infrastructure that is necessary in order for your patients to do this? So the very first thing that has to happen is that somebody has to tell the patient to exercise. We currently do not have a culture of exercise in oncology. We do in heart disease. If you ask the average person on the street, "Is exercise good for your heart?" Anybody with an eighth-grade education is going to say, "Yes, of course," because the American Heart Association has done an amazing job telling everybody that exercise is good for your heart. But what has ASCO done, frankly? Can I be that bold? What has ASCO done to tell patients that they should be exercising during and after their cancer treatment? I'm not sure that I know more than a guideline. There is a guideline, and that's great. And the guideline is very helpful, but I'm not sure that patients know that there's a guideline. In fact, I can tell you that patients don't know that there is a guideline. So, you know, making sure that there's a paradigm shift in the country that says exercise is good for patients during and after their cancer treatment is the first step. The second step is getting a medical professional to say something to the patient about the exercise. And I'm very careful with the two words that I just chose: medical professional. I do understand medical oncologists are very busy. I understand that there's a whole lot to say in that 15 minutes when you're with the patient. And so maybe it isn't the medical oncologist. Ideally, it would be, but I get it that there's limited time. So it could be a nurse practitioner, it could be a nurse, there could be a social worker, it could be somebody else on the team that says, "Hey, you know, we want you to do an exercise program. We want to connect you to an exercise program."

And then there's what is the program itself? You know, I'm very interested in this happening across the entire country. And so I've been working with the leadership of the Commission on Cancer on the question of, well, how would you do this in community oncology? You know, it's not enough to do it in academic medicine, but how do you do this in community oncology? And you can't expect that every community hospital is going to build a gym for their cancer patients. That is just not reasonable to do. So, we start to try to figure out some phone counseling. Could we give people Fitbits and follow them? Could we use technology to help us? Are there telehealth opportunities for us to do? Are there apps that have been built? In fact, there is a [free] app called Cancer Exercise that's on, you know, all of the platforms and available to patients. So there are programs. I've developed a directory of over 2,000 programs that exist across the country for exercise oncology that patients can find, medical oncologists can find.

So there are a lot of people trying to figure out how best to get the information to medical oncologists and other medical professionals so that they can have an 'easy button' to be able to connect their patients to existing programming so that you don't feel like you have to build a whole new program.

Dr. Pedro Barata: If I don't have the resources around me, what would be your advice for the care team or for the providers that might not have that available at their site? Where do they start? Who do they reach out to? Who should they be looking at to get more information on how to set it up?

Dr. Kathryn Schmitz: I lead an international consortium called Moving Through Cancer. You can find us at movingthroughcancer.org. That's where you'll find the map of all of the programs across the country and the directory. We actually have a triage tool that sits at the front of the directory that allows people to discern what type of exercise they're safe to do. We do recognize that, you know, the 80-year-old that fell last week doesn't need the same program as the 35-year-old that was playing pickleball the day before diagnosis. So, you know, there are different kinds of programs for people at different levels of acuity. We're happy to be helpful to folks to help them set up programs.

But the number one thing is to really be very aware of the power of saying something about doing exercise, just simply the power of saying, "I want you to be moving." Because frankly, I don't think anybody listening to this would disagree, no one benefits from sitting on the couch all day, no one. No one, no one. It doesn't matter how acute their medical issues are. We get people out of bed. We try to move people even when they're in the hospital. So I think saying something is huge. And then, if you can, applying a triage tool, if you can get something embedded within your clinical flow so that you can understand who it is that needs to go to physical therapy as opposed to who's ready for an exercise program. Those are the two things. So triage and referral is kind of step one. And if you can get that done, the rest will fall into place.

Dr. Pedro Barata: This is really powerful message, where one, awareness of the care teams. Number two, bring it up to the patient. And then working on the referral, triage and referral process. That's fantastic.

Another aspect that comes up quite a bit is like, "Look, this is great, but we have a system that relies on payers to make things happen, or at least to get them approved." And that can be very different or heterogeneous. The coverage can be different. Sometimes already going through a system programs for interventions, therapeutic interventions, let alone probably the insurance is not going to cover that. Is that true? Is it not true? How do you walk through the different insurance supports, perhaps, depending on where you're practicing?

Dr. Kathryn Schmitz: You've just hit on the hot button. I've been working on this issue for about nine years now, trying to figure out using efforts to talk to CMS and see if we can get third party payer coverage going. We were making good progress there, and there was a change of administration and a new focus on "Make America Healthy Again," the MAHA movement. And, you know, CMS is really no longer interested in one-off national coverage determination. They instead, they want to know, "How do we make exercise happen for every American over 65?" And my question is, "Well, wait a minute, cancer patients are not just older patients. There's a lot going on there. They need something special." So I've been working on that. It's been working with accrediting bodies for policy with a little p. Very proud of the work that I've done in collaboration with the National Accreditation Program for Breast Centers, trying to get standards to get exercise referrals for breast patients. And I'm currently holding my breath to see whether the CoC is going to try to make some forward motion in this area as well, crossing all period appendages, waiting for news there.

So it's not paid for unless it's done by a physical therapist. And, you know, there's published evidence and I have plenty of evidence from UPMC as well, that people don't really want to go to the physical therapist for this. I'm not saying physical therapists aren't great. Physical therapists are great, and there are people who really need to go to physical therapy, and we try hard to get those patients connected. But for the patients that are ready for something more than physical therapy, we really have an uphill battle to try to figure out what insurers are willing to pay for and what the return on investment is.

One of the challenges with the return on investment is that the timeline, time course for return on investment for American insurers is about one year. And I'll remind you that the time course for return on investment for CHALLENGE was 7.9 years. So we have a mismatch there. So we're trying to figure out if we can produce the evidence to show that there is an improvement in unplanned health care utilization. We have documented that for breast cancer. We're working on it for other cancers. If we can document that it is worthwhile to the insurer to pay for these programs, then I believe that they will pay for them. You know, my conversations are very positive with UPMC, which is a very large insurer and a large health plan. We're slowly working our way towards the middle, where there's a program that they can pay for and a program that is efficacious. That's the puzzle we're trying to solve for right now.

Dr. Pedro Barata: This has been wonderful and super helpful. Before we wrap it up, is there anything else you would like to share with our listeners?

Dr. Kathryn Schmitz: I want to make sure that your audience is aware that there are a variety of ways that exercise oncology is practiced. The program that most oncologists will be familiar with is LIVESTRONG, which is a program at the YMCA. It's a free program. At one point, there were over 800 locations across the U.S. They have contracted since COVID, probably because of COVID. So they still do exist but imagine, if you will, telling your patients that chemo is only available Tuesdays and Thursdays at 7:00 p.m. It would be difficult for patients to get there and get the chemotherapy. The same thing is true for the LIVESTRONG program. It's a fantastic, fantastic program for people who are able to get there, but that's one option.

Another option for patients is there are a variety of online opportunities. I'll call out 2Unstoppable for women's cancers. It's literally the number 2Unstoppable.org. It's a free program available to women with cancer to have live, small group training programs. And they're based in Virginia, but they have programs all over the country.

And then finally, I just want to overemphasize the app, the Cancer Exercise app. It's literally called Cancer Exercise in the app store. And that is a super duper easy button, very comprehensive, developed by a nurse scientist, Anna Schwartz. And then there are a variety of books. I wrote a book called Moving Through Cancer. There's a new book out [MyExerciseMedicine for Cancer] by Dr. Rob Newton as well, who's an Australian author. And there are certifications for exercise professionals that folks can look into as well through the American College of Sports Medicine.

Dr. Pedro Barata: Dr. Schmitz, this is fantastic. Thank you for sharing those great insights with us. Super, super helpful. Thank you for taking the time.

Dr. Kathryn Schmitz: Thank you so much.

Dr. Pedro Barata: Thank you to our listeners for your time today. Remember, you'll find links to Dr. Schmitz's fantastic Educational Book as well as the JCO articles in the transcript of this episode. I'll invite all of you to go and read. And we'll also include a link to Dr. Schmitz's book titled Moving Through Cancer: An Exercise and Strength Program for the Fight of Your Life, which empowers patients and caregivers in simple five steps.

So with that, please join us again next month on By the Book for more insights on key advances and innovations that are shaping modern oncology. Thank you very much for your attention.

Disclaimer: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Disclosures:

Dr. Pedro Barata:

Stock and Other Ownership Interests: Luminate Medical

Honoraria: UroToday

Consulting or Advisory Role: Bayer, BMS, Pfizer, EMD Serono, Eisai, Caris Life Sciences, AstraZeneca, Exelixis, AVEO, Merck, Ipson, Astellas Medivation, Novartis, Dendreon

Speakers' Bureau: AstraZeneca, Merck, Caris Life Sciences, Bayer, Pfizer/Astellas

Research Funding (Inst.): Exelixis, Blue Earth, AVEO, Pfizer, Merck

Dr. Kathryn Schmitz:

Patents, Royalties, Other Intellectual Property: Fees from the educational program developed by Dr. Schmitz that is now offered through Klose Training and Consulting.

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Dr. Pedro Barata and Dr. Ugwuji Maduekwe discuss the evolving treatment landscape in gastroesophageal junction and gastric cancers, including the emergence of organ preservation as a selective therapeutic goal, as well as strategies to mitigate disparities in care. Dr. Maduekwe is the senior author of the article, "Organ Preservation for Gastroesophageal Junction and Gastric Cancers: Ready for Primetime?" in the 2026 ASCO Educational Book.

TRANSCRIPT

Dr. Pedro Barata: Hello, and welcome to By the Book, a podcast series from ASCO that features compelling perspectives from authors and editors of the ASCO Educational Book. I'm Dr. Pedro Barata. I'm a medical oncologist at University Hospitals Seidman Cancer Center and an associate professor of medicine at Case Western Reserve University in Cleveland, Ohio. I'm also the deputy editor of the ASCO Educational Book.

Gastric and gastroesophageal cancers are the fifth most common cancer worldwide and the fourth leading cause of cancer-related mortality. Over the last decade, the treatment landscape has evolved tremendously, and today, organ preservation is emerging as an attainable but still selective therapeutic goal.

Today, I'm delighted to be speaking with Dr. Ugwuji Maduekwe, an associate professor of surgery and the director of regional therapies in the Division of Surgical Oncology at the Medical College of Wisconsin. Dr. Maduekwe is also the last author of a fantastic paper in the 2026 ASCO Educational Book titled "Organ Preservation for Gastroesophageal Junction and Gastric Cancers: Ready for Prime Time?" We explore these questions in our conversations today.

Our full disclosures are available in the transcript of this episode as well.

Welcome. Thank you for joining us today.

Dr. Ugwuji Maduekwe: Thank you, Dr. Barata. I'm really, really glad to be here.

Dr. Pedro Barata: There's been a lot of progress in the treatment of gastric and gastroesophageal cancers. But before we actually dive into some of the key take-home points from your paper, can you just walk us through how systemic therapy has emerged and actually allowed you to start thinking about a curative framework and really informing surgery decision-making?

Dr. Ugwuji Maduekwe: Great, thank you. I'm really excited to be here and I love this topic because, I'm terrified to think of how long ago it was, but I remember in medical school, one of my formative experiences and why I got so interested in oncology was when the very first trials about imatinib were coming through, right? Looking at the effect, I remember so vividly having a lecture as a first-year or second-year medical student, and the professor saying, "This data about this particular kind of cancer is no longer accurate. They don't need bone marrow transplants anymore, they can just take a pill." And that just sounded insane.

And we don't have that yet for GI malignancies. But part of what is the promise of precision oncology has always been to me that framework. That framework we have for people with CML who don't have a bone marrow transplant, they take a pill. For people with GIST. And so when we talk about gastric cancers and gastroesophageal cancers, I think the short answer is that systemic therapy has forced surgeons to rethink what "necessary" really means, right? We have the old age saying, "a chance to cut is a chance to cure." And when I started out, the conversation was simple. We diagnose the cancer, we take it out. Surgery's the default. But what's changed really over the last decade and really over the last five years is that systemic therapy has gotten good enough to do what is probably real curative work before we ever enter the operating room.

So now when you see a patient whose tumor has essentially melted away on restaging, the question has to shift, right? It's no longer just, "Can I take this out?" It's "Has the biology already done the heavy lifting? Have we already given them systemic therapy, and can we prove it safely so that maybe we don't have to do what is a relatively morbid procedure?" And that shift is what has opened the door to organ preservation. Surgery doesn't disappear, but it becomes more discretionary. Necessary for the patients who need it, and within systems that can allow us to make sure that we're giving it to the right patients.

Dr. Pedro Barata: Right, no, that makes total sense. And going back to the outcomes that you get with these systemic therapies, I mean, big efforts to find effective regimens or cocktails of therapies that allow us to go to what we call "complete response," right? Pathologic complete response, or clinical complete response, or even molecular complete response. We're having these conversations across different tumors, hematologic malignancies as well as solid tumors, right? I certainly have those conversations in the GU arena as well.

So, when we think of pathologic CRs for GI malignancies, right? If I were to summarize the data, and please correct me if I'm wrong, because I'm not an expert in this area, the traditional perioperative chemo gives you pCRs, pathologic complete response, in the single digits. But then when you start getting smarter at identifying biologically distinct tumors such as microsatellite instability, for instance, now you start talking about pCRs over 50%. In other words, half of the patients' cancer goes away, it melts down by offering, in this case, immunotherapy as a backbone of that neoadjuvant. But first of all, this shift, right, from going from these traditional, "not smart" chemotherapy approaches to kind of biologically-driven approaches, and how important is pCR in the context of "Do I really need surgery afterwards?"

Dr. Ugwuji Maduekwe: That's really the crux of the entire conversation, right? We can't proceed and we wouldn't be able to have the conversation about whether organ preservation is even plausible if we hadn't been seeing these rates of pathologic complete response. If there's no viable tumor left at resection, did surgery add something? Are we sure?

The challenge before this was how frequently that happened. And then the next one is, as you've already raised, "Can we figure that out without operating?" In the traditional perioperative chemo era, pathologic complete response was relatively rare, like maybe one in twenty patients. When we go to more modern regimens like FLOT, it got closer to one in six. When you add immunotherapy in recent trials like MATTERHORN, it's nearly triple that rate.

And it's worth noting here, I'm a health services-health disparities researcher, so we'll just pause here and note that those all sound great, but these landmark trials have significant representation gaps that limit and should inform how confidently we generalize these findings.

But back to what you just said, right, the real inflection point is MSI-high disease where, with neoadjuvant dual-checkpoint blockade, trials like NEONIPIGAS and INFINITY show pCR rates that are approaching 50% to 60%. That's not incremental progress, that's a whole new different biological reality.

What does that mean? If we're saying that 50% to 60% of the people we take to the OR at the time of surgery will end up having no viable tumor, man, did we need to do a really big surgery? But the problem right now is the gold standard, I think we would mostly agree, the gold standard is pathologic complete response, and we only know that after surgery.

I currently tell my patients, right, because I don't want them to be like, "Wait, we did this whole thing." I'm like, "We're going to do this surgery, and my hope is that we're going to do the surgery and there will be no cancer left in your stomach after we take out your stomach." And they're like, "But we took out my stomach and you're saying it's a good thing that there's no cancer."

And yes, right now that is true because it's a measure of the efficacy of their systemic therapy. It's a measure of the biology of the disease. But should we be acting on this non-operatively? To do that, we have to find a surrogate. And the surrogate that we have to figure out is complete clinical response. And that's where we have issues with the stomach.

In esophageal cancer, the preSANO protocol, which we'll talk about a little bit, validated a structured clinical response evaluation. People got really high-quality endoscopies with bite-on biopsies. They got endoscopic ultrasounds. They got fine-needle aspirations and PET-CT, and adding all of those things together, the miss rate for substantial residual disease was about 10% to 15%. That's a number we can work with.

In the stomach, it's a lot more difficult anatomically just given the shape of people's stomachs. There's fibrosis, there's ulceration. A fair number of stomach and GEJ cancers have diffuse histology which makes it difficult to localize and they also have submucosal spread. Those all conceal residual disease.

I had a recent case where I scoped the patient during the case, and this person had had a 4 cm ulcer prior to surgery, and I scoped and there was nothing visible. And I was elated. And on the final pathology they had a 7 cm tumor still in place. It was just all submucosal. That's the problem. I'm not a gastroenterologist, but I would have said this was a great clinical response, but because it's gastric, there was a fair amount of submucosal disease that was still there.

And our imaging loses accuracy after treatment. So the gap between what looks clean clinically and what's actually there pathologically remains very wide. So I think that's why we're trying to figure it out and make it cleaner. And outside of biomarker-selected settings like MSI-high disease, in general, I'm going to skip to the end and our upshot for the paper, which is that organ preservation, I would say for gastric cancer particularly, should remain investigational. I think we're at the point where the biology is increasingly favorable, but our means of measurement is not there yet.

Dr. Pedro Barata: Gotcha. So, this is a perfect segue because you did mention the SANO, just to spell it out, "Surgery As Needed for Oesophageal" trial, so SANO, perfect, I love the abbreviation. It's really catchy. It's fantastic, it's actually a well-put-together perspective effort or program applying to patients. And can you tell us how was that put together and how does that work out for patients?

Dr. Ugwuji Maduekwe: Yeah, I think for those of us in the GI space, we have SANO and then we also have the OPRA for rectum. SANO for the upper GI is what takes organ preservation from theory to something that's clinically credible.

The trial asked a very simple question. If a patient with a GEJ adenocarcinoma or esophageal adenocarcinoma achieved what was felt to be a clinical complete response after chemoradiation, would they actually benefit from immediate surgery? And the question was, "Can you safely observe?" And the answer was 'yes'. You could safely observe, but only if you do it right. And what does that mean? At two years, survival with active surveillance was not inferior to those who received an immediate esophagectomy. And those patients had a better early quality of life. Makes sense, right? Your quality of life with an esophagectomy versus not is going to be different.

That matters a lot when you consider what the long-term metabolic and functional consequences of an esophagectomy are. The weight loss, nutritional deficiencies that can persist for years. But SANO worked because it was very, very disciplined and not permissive. You mentioned rigor. They were very elegant in their approach and there was a fair amount of rigor.

So there were two main principles. The first was that surveillance was front-loaded and intentional. So they had endoscopies with biopsies and imaging every three to four months in the first year and then they progressively spaced it out with explicit criteria for what constituted failure. And then salvage surgery was pre-planned. So, the return-to-surgery pathway was already rehearsed ahead of time. If disease reappeared, take the patient to the OR within weeks. Not sit, figure out what that means, think about it a little bit and debate next steps. They were very clear about what the plan was going to be.

So they've given us this blueprint for, like, watching people safely. I think what's remarkable is that if you don't do that, if you don't have that infrastructure, then organ preservation isn't really careful. It's really hopeful. And that's what I really liked about the SANO trial, aside from, I agree, the name is pretty cool.

Dr. Pedro Barata: Yeah, no, that's a fantastic point. And that description is spot on. I am thinking as we go through this, where can this be adopted, right? Because, not surprisingly, patients are telling you they're doing a lot better, right, when you don't get the esophagus out or the stomach out. I mean, that makes total sense.

So the question is, you know, how do you see those issues related to the logistics, right? Getting the multi-disciplinary team, getting the different assessments of CR. I guess PETs, a lot of people are getting access to imaging these days. How close do you think this is, this kind of program, to be implemented? And maybe I would assume it might need to be validated in different settings, right, including the community. How close or how far do you think you see that being applied out there versus continuing to be a niche program, watch and wait program, in dedicated academic centers?

Dr. Ugwuji Maduekwe: I love this question. So I said at the top of this, I'm a health equity/health disparities researcher, and this is where I worry the most. I love the science of this. I'm really excited about the science. I'm very optimistic. I don't think this is a question of "if," I think it's a question of "when." We are going to get to a point where these conversations will be very, very reasonable and will be options.

One of the things I worry about is: who is it going to be an option for? Organ preservation is not just a treatment choice, and I think what you're pointing out very rightly is it's a systems-level intervention. Look at what we just said for SANO. Someone needs to be able to do advanced endoscopy, get the patients back. We have to have the time and space to come back every three to four months. We have to do molecular testing. There needs to be multi-disciplinary review. There needs to be intensive surveillance, and you need to have rapid access to salvage surgery.

Where is that infrastructure? In this country, it's mostly in academic centers. I think about the panel we had at ASCO GI, which was fantastic. And as we were having the conversation, you know, we set it up as a debate. So folks were debating either pro-surveillance or pro-surgery. But both groups, both people, were presenting outcomes based on their centers. And it was folks who were fantastic. Dr. Molena, for example, from Memorial Sloan Kettering was talking about their outcomes in esophagectomies [during our session at GI26], but they do hundreds of these cases there per year.

What's the reality in this country? 70% to 80% to 90%, depending on which data you look at, of the gastrectomies in the United States occur at low-volume hospitals. Most of the patients at those hospitals are disproportionately uninsured or on government insurance, have lower income and from racial and ethnic minority groups.

So if we diffuse organ preservations without the system to support it, we're going to create a two-tiered system of care where whether you have the ability to preserve your organs, to preserve bodily integrity, depends on where you live and where you're treated.

The other piece of this is the biomarker testing gap. One of the things that, as you pointed out at the beginning, that's really exciting is for MSI-high tumors. Those are the patients that are most likely to benefit from immunotherapy-based organ preservation. But here's the problem. If the patient isn't tested at time of initial diagnosis before they ever see me as a surgeon, the door to organ preservation is closed before it's ever open. And testing access remains very inconsistent across academic networks.

And then there's the financial toxicity piece where, for gastrectomy, pancreatectomy, I do peritoneal malignancies, more than half of those patients experience significant financial toxicity related to their cancer treatment. We're now proposing adding at least two years, that's the preliminary information, right? It's probably going to be longer. At least a couple of years of surveillance visits, repeated endoscopies, immunotherapy costs. How are we going to support patients through that? We're going to have to think about setting up navigation support, geographic solutions, what financial counseling looks like. My patient for clinic yesterday was driving to see me, and they were talking about how they were sliding because it was snowing. And they were sliding for the entire three-hour drive down here.

Are we going to tell people like that that they need to drive down to, right, I work at a high-volume center, they're going to need to come here every three months, come rain or snow, to get scoped as opposed to the one-time having a surgery and not needing to have the scopes as frequently? My concern, like I said, I'm an optimist, I think it is going to work. I think we're going to figure out how to make it work. I'm worried about whether when we deploy it, we widen the already existing disparities.

Dr. Pedro Barata: Gotcha, and that's a fantastic summary. And as I'm thinking also of what we've been talking in other solid tumors, which one of the following do you think is going to evolve first? So we are starting to use more MRD-based assays, which are based on blood test, whether it's a tumor-informed ctDNA or non-informed. We are also trying to get around or trying to get more information response to systemic therapies out of RNA-seq through gene expression signatures, or development of novel therapeutics which also can help you there. Which one of these areas you think you're going to help this SANO-like approach move forward, or you actually think it's actually all of the above, which makes it even more complicated perhaps?

Dr. Ugwuji Maduekwe: I think it's going to be all of the above for a couple of reasons. I would say if I had to pick just one right now, I think ctDNA is probably the most promising and potentially the missing piece that can help us close the gap between clinical and pathologic response.

If you achieve clinical complete response and your ctDNA is negative, so you have clinical and molecular evidence of clearance, maybe that's a low-risk patient for surveillance. If you have clinical complete response but your ctDNA remains positive, I would say you have occult molecular disease and we probably need intensified therapy, closer monitoring, not observation. I think the INFINITY trial is already incorporating ctDNA into its algorithm, so we'll know. I don't think we're at the point where it alone can drive surgical decisions. I think it's going to be a good complement to clinical response evaluation, not a replacement.

The issue of where I think it's probably going to be multi-dimensional is the evidence base: who are we testing? Like, what is the diversity, what is the ancestral diversity of these databases that we're using for all of these tests? How do we know that ctDNA levels and RNA-seq expression arrays are the same across different ancestral groups, across different disease types?

So I think it's probably going to be an amalgam and we're going to have to figure out some sort of algorithm to help us define it based on the patient characteristics. Like, I think it's probably different, some of this stuff is going to be a little bit different depending on where in the stomach the cancer is. And it's going to be a little bit more difficult to figure out if you have a complete clinical response in the antrum and closer to the pylorus, for example. That might be a little bit more difficult. So maybe the threshold for defining what a clinical complete response needs to be is higher because the therapeutic approach there is not quite as onerous as for something at the GE-junction.

Dr. Pedro Barata: Wonderful. And I'm sure AI, whether it's digitization of the pathology from the biopsies and putting all this together, probably might play a role as well in the future.

Dr. Maduekwe, it's been fantastic. Thank you so much for sharing your insights with us and also congrats again for the really well-done review published.

For our listeners, thank you for staying with us. Thank you for your time. We will post a link to this fantastic article we discussed today in the transcript of this episode. And of course, please join us again next month on the By the Book Podcast for more insights on key advances and innovations that are shaping modern oncology. Thank you, everyone.

Dr. Ugwuji Maduekwe: Thank you. Thank you for having me.

Watch the ASCO GI26 session: Organ Preservation for Gastroesophageal and Gastric Cancers: Ready for Primetime?

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Follow today's speakers:

Dr. Pedro Barata

@PBarataMD

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@umaduekwemd

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Disclosures:

Dr. Pedro Barata:

Stock and Other Ownership Interests: Luminate Medical

Honoraria: UroToday

Consulting or Advisory Role: Bayer, BMS, Pfizer, EMD Serono, Eisai, Caris Life Sciences, AstraZeneca, Exelixis, AVEO, Merck, Ipson, Astellas Medivation, Novartis, Dendreon

Speakers' Bureau: AstraZeneca, Merck, Caris Life Sciences, Bayer, Pfizer/Astellas

Research Funding (Inst.): Exelixis, Blue Earth, AVEO, Pfizer, Merck

Dr. Ugwuji Maduekwe:

Leadership: Medica Health

Research Funding: Cigna

View Details

Dr. Hope Rugo and Dr. Vivek Subbiah discuss innovative trial designs to enable robust studies for smaller patient populations, as well as the promise of precision medicine, novel therapeutic approaches, and global partnerships to advance rare cancer research and improve patient outcomes.

TRANSCRIPT

Dr. Hope Rugo: Hello and welcome to By the Book, a podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I am your host, Dr. Hope Rugo. I am the director of the Women's Cancers Program and division chief of breast medical oncology at the City of Hope Cancer Center [in Los Angeles].

The field of rare cancer research is rapidly transforming thanks to progress in clinical trials and treatment strategies, as well as improvements in precision medicine and next-generation sequencing that enable biomarker identification. According to the National Cancer Institute, rare cancers occur in fewer than 150 cases per million each year, but collectively, they represent a significant portion of all cancer diagnoses. And we struggle with the appropriate treatment for these rare cancers in clinical practice.

Today, I am delighted to be joined by Dr. Vivek Subbiah, a medical oncologist and the chief of early-phase drug development at the Sarah Cannon Research Institute in Nashville, Tennessee. Dr. Subbiah is the lead author of a paper in the ASCO Educational Book titled "Designing Clinical Trials for Patients with Rare Cancers: Connecting the Zebras," a great title for this topic. He will be telling us about innovative trial designs to enable robust studies for small patient populations, the promise of precision medicine, and novel therapeutic approaches to improve outcomes, and how we can leverage AI now to enroll more patients with rare cancers in clinical trials.

Our full disclosures are available in the transcript of this episode.

Dr. Subbiah, it is great to have you on the podcast today. Thanks so much for being here.

Dr. Vivek Subbiah: Thank you so much, Dr. Rugo, and it is an honor and pleasure being here. And thank you for doing this podcast for rare cancers.

Dr. Hope Rugo: Absolutely. We are excited to talk to you. And congratulations on this fantastic paper. It is such a great resource for our community to better understand what is new in the field of rare cancer research. Of course, rare cancers are complex and multifaceted diseases. And this is a huge challenge for clinical oncologists. You know, our clinics, of course, cannot be designed as we are being very uni-cancer focused to just be for one cancer that is very rare. So, oncologists have to be a jack of all trades in this area.

Your paper notes that there are approximately 200 distinct types of rare and ultra-rare cancers. And, by definition, all pediatric cancers are rare cancers. Of course, clinical trials are essential for developing new treatment strategies and improving patient outcomes, and in your paper, you highlight some unique challenges in conducting trials in this rare cancer space. Can you tell us about the challenges and how really innovative trial designs, I think a key issue, are being tailored to the specific needs of patients with rare cancer and, importantly, for these trials?

Dr. Vivek Subbiah: Rare cancers present a perfect storm of challenges. First, the patient populations are very small, which makes it really hard to recruit enough participants for traditional type trials. Second, these patients are often geographically dispersed across multiple cities, across multiple states, across multiple countries, across multiple zip codes. So, logistics become complicated.

Third, there is often limited awareness among clinicians, which delays referrals and diagnosis. Add to that regulatory hurdles, funding constraints, and you can see why rare cancer trials are so tough to execute. To overcome these barriers, we are seeing some really creative novel trial designs. And there are four different types of trial designs that are helping with enrolling patients with rare cancers.

The first one is the basket trial. So let us talk about what basket studies are. Basket studies group patients based on shared genetic biomarkers or shared genetic mutations rather than tumor type. So instead of running separate 20 to 30 to 40 trials, you can study one therapy across multiple cancers.

The second type of trial is the umbrella trial. The umbrella trials flip that concept of basket studies. They focus on one cancer type but test multiple targeted therapies within it.

The third category of innovative trials are the platform studies. Platform trials are another exciting innovation. They allow new treatment arms to be added or removed as the data matures and as the data evolves, making trials more adaptive and efficient.

The final category are decentralized tools in traditional trials, which are helping patients participate closer to where they are so that they can sleep in their own bed, which is, I think, a game changer for accessibility.

These designs maximize efficiency and feasibility for rare cancer research and rare cancer clinical trials.

Dr. Hope Rugo: I love the idea of the platform trials that are decentralized. And I know that there is a trial being worked on with ARPA-H (Advanced Research Projects Agency for Health) funding in triple-negative breast cancer as well as in lung cancer, I think, and others with this idea of a platform trial. But it is challenged, I think, by precision medicine and next-generation sequencing where some patients do not have targetable markers, or there isn't a drug to target the marker. I think those are almost the same thing.

We have really seen that these precision medicine ideas and NGS have moved the needle in helping to identify genetic alterations. This helps us to be more personalized. It actually helps with platform studies to customize trial enrollment. And we hope that this will result in better outcomes. It also allows us, I think, to study drugs even in the early stage setting more effectively. How can these advances be best applied to the future of rare cancers, as well as the challenges of not finding a marker or not having a drug?

Dr. Vivek Subbiah: Thank you so much for that question. I think precision medicine and next-gen sequencing, or NGS, are truly the backbone of modern precision oncology. They have transformed how we think about cancer treatment. Instead of treating based on where the tumor originated or where the tumor started, we now look at the genetic blueprint of cancer. The NGS or next-gen sequencing allows us to sequence millions of DNA fragments quickly.

Twenty, 30 years ago, they said we cannot sequence a human genome. Then it took almost a decade to sequence the first human genome. Right now, we have academic centers and commercial sequencing companies that are really democratizing NGS across all sites, not just in academic centers, across all the community sites, so that NGS is now accessible. This means that we can identify these actionable alterations like picking needles in haystacks, like NTRK fusions, RET fusions, or BRAF V600E alterations, high tumor mutational burden. This might occur across not one tumor type, across several different tumor types.

So for rare cancers, this is critical because some of these mutations often define the best treatment option. Here is why this matters. Personalized therapy, right? Instead of a one-size-fits-all approach, we can tailor treatment to the patient's unique molecular profile. For trial enrollment, this can definitely help because patients can join biomarker-driven trials even if their cancer type is rare or ultra-rare.

NGS technology has also helped us in designing rational studies. Many times monotherapy does not work in these cancers. So we are thinking about rational combination strategies. So NGS technology is helping us. Looking ahead, I see NGS becoming routine in clinical practice, not just at major niche academic centers, but everywhere. We will see more tumor-agnostic approvals, more molecular tumor boards guiding treatment decisions in real time. And I think we are seeing an expanded biomarker setup.

Previously, we used to have only a few drugs and a handful of mutations. Now with homologous recombination defects, BRCA1/2 mutation, and expanding the HRD and also immunohistochemistry, we are expanding the biomarker portfolio. So again, I personally believe that the future is precision. What I mean by precision is delivering the right drug to the right patient at the right time. And for rare cancers, this isn't just progress. It is survival. And it is maybe the only way that they can have access to these cutting-edge precision medicines.

Dr. Hope Rugo: That is so important. You mentioned an important area we will get to in a moment, the tumor-agnostic therapies. But as part of talking about that, do you think that the trials should also include just standard therapies? You know, who do you give an ADC to and when with these rare cancers? Because some of them do not have biomarkers to target and it is so disappointing for patients and providers where you are trying to screen a patient for a trial or a platform trial where you have one arm with this mutation, one arm with that, and they do not qualify because they only have a p53 loss, you know? They just do not have the marker that helps them. But we see this in breast cancer all the time. And it is tough because we don't have good information on the sequencing. So I wonder, you know, just because for some of these rare cancers it is not even clear what to use when with standard treatments.

And then that kind of gets into this idea of the tumor-agnostic therapies that you mentioned. There are a lot of new treatments that are being evaluated. We have seen approval of some treatments in the last few years that are tumor-agnostic and based on a biomarker. Is that the best approach as we go forward for rare cancers? And what new treatment options are most exciting to you right now?

Dr. Vivek Subbiah: Tumor-agnostic therapies, really close to my heart, are real breakthrough therapies and represent a major paradigm shift in oncology. Traditionally, for the broad listeners here, we are used to thinking about designing clinical trials and therapy like where the cancer originated, breast cancer, kidney cancer, prostate cancer, lung cancer. A tumor-agnostic therapy flips that model. Instead of focusing on the organ, they target the specific genetic alteration or biomarker that drives cancer growth regardless of where the tumor started, regardless of the location of the tumor, regardless of the zip code of the tumor.

So why is this so important for rare cancers? Because many rare cancers share molecular features with more common cancers. For instance, NTRK fusion might occur in pediatric sarcoma, a salivary gland tumor, or a thyroid cancer. Historically, each of these would require separate trials, which is nearly impossible, unfeasible to conduct in these ultra-rare cancers like salivary gland cancer or pediatric sarcomas. Tumor-agnostic therapies allow us to treat all those cancers with the same targeted drug if they share that biomarker.

Again, we are in 2025. The first tissue-agnostic approval, the historic precedent, was in fact an immunotherapy. Pembrolizumab was approved in 2017, May 2017, as the first immunotherapy to be approved in a tumor-agnostic way for a genomic biomarker, for MSI-High and dMMR cancers. Then came the NTRK inhibitors. So today we have not one, not two, but three different NTRK inhibitors: larotrectinib, entrectinib, and repotrectinib, which show response rates of nearly more than 60 to 75% across a handful of dozens and dozens of cancer types. Then, of course, we have RET inhibitors like selpercatinib, which is approved tissue-agnostic, and pralsetinib, which also shows tissue-agnostic activity across multiple cancers.

And more recently, combination therapy with a BRAF and MEK combination, dabrafenib and trametinib, received tumor-agnostic approval for all BRAF V600E tumors with the exception of colorectal cancer. And even recently, you mentioned about antibody drug conjugates. Again, I think we live in an era of antibody drug conjugates. And Enhertu, trastuzumab deruxtecan, which was used first in breast cancer, now it is approved in a histology-agnostic manner for all HER2-positive tumors defined by immunohistochemistry 3+.

So again, beyond NGS, now immunohistochemistry for HER2 is also becoming a biomarker. So again, for the broad listeners here, in addition to comprehensive NGS that may allow patients to find treatment options for these rare cancers for NTRK, RET, and BRAF, immunohistochemistry for HER2 positivity is also emerging as a biomarker given that we have a new FDA approval for this.

So I would say personally that these therapies are game changers because they open doors for patients who previously had no options. Instead of waiting for years for a trial in their specific cancer type, they can access a treatment based on their molecular profile. I think it is precision medicine at its finest and best.

Looking ahead, the third question you asked me is what is exciting going on? I think we will see more of these approvals. My hope is that today, I think we have nine to ten approvals. My hope is that within the next 25 to 50 years, we will have at least 50 to 100 drugs approved in this space based on a biomarker, not based on a location of the tumor type. Drug targeting rare alterations like FGFR2 fusions, FGFR amplifications, ALK fusions, and even complex signatures like high tumor mutational burden. I think we will be seeing hopefully more and more drugs approved. And as sequencing becomes routine, we will identify more patients for these therapies. I think for rare cancers, this is not just innovative approach. This is essential for them to access these novel precision medicines.

Dr. Hope Rugo: Yeah, that is such a good point. I do think it is critical. Interestingly in breast cancer, it hasn't been, you know, there is always like two patients in these tumor-agnostic trials, or if that. You know, I think I have seen one NTRK fusion ever. I think that highlights the importance for rare cancers. And you know, I am hoping that that will translate into some new directions for some of our rarer and impossible-to-treat subtypes of breast cancer. It is this kind of research that is really going to make a difference.

But what about those people who do not have biomarkers? What if you do not fit into that? Do you think there is a possibility of trying to do treatments for rare cancers in some prospective way that would help with that? You know, it is really a huge challenge.

Dr. Vivek Subbiah: Absolutely. I think, you know, you're right, usually many of these rare cancers are driven by specific biomarkers. And again, some of the pediatric salivary gland tumors or pediatric sarcomas like fibrosarcomas, they are pathognomonic with NTRK fusions. And again, given that we have a tumor-agnostic approval, now these patients have access to these therapies. And I do not think that we would have had a trial just for pediatric fibrosarcomas with NTRK fusions. So that is one way.

Another way is SWOG, right? The SWOG DART [1609] had this combination dual checkpoint, it was called the DART study dual combination chemotherapy with ipi/nivo. Now here the rare cancer subtype itself becomes a biomarker and they showed activity across multiple rare cancer subtypes. They didn't require a biomarker. As long as it was a rare or ultra-rare cancer, these patients were enrolled into the SWOG DART trial and multiple arms have read out. Angiosarcoma, Kaposi sarcoma, even gestational trophoblastic disease. Again, they have shown responses in these ultra-rare, rare cancers. Sometimes they might be seeing one or two cases a whole year. And I think this SWOG effort, this cooperative group effort, really highlighted the need for such studies without biomarkers as well.

Dr. Hope Rugo: That is such a fantastic example of how to try and treat patients in a collaborative way. And in the paper, you also emphasize the need for collaborative research efforts, you know, uniting resource expertise across different ways of doing research. So cooperative groups, advocacy organizations that can really help advance rare cancer research, improve access to new therapies, and I think importantly influence policy changes. I think this already happened with the agnostic approvals. Could you tell us more about that? How can we move forward with this most effectively?

Dr. Vivek Subbiah: Personally, I believe that collaboration is absolutely critical and essential for rare cancer research. No single institution, no single individual, or no single state or entity can tackle these challenges alone. The patient populations are small and dispersed. So pooling resources is the only way to run these meaningful trials. Again, it is not like singing, it is like putting a huge, huge, I would say, an opera piece together. It is not a solo, vocal therapy, but rather putting a huge opera piece like Turandot.

You know, you mentioned cooperative groups. Cooperative groups, as I mentioned earlier, the SWOG DART program, the ASCO [TAPUR study]. ASCO is doing a phenomenal work of the TAPUR study. Again, this ASCO TAPUR program has enrolled so many patients with rare cancers who otherwise would not have treatment options. NCI-MATCH, the global effort, right? NCI-MATCH and the ComboMATCH are great examples. They bring together hundreds of sites, thousands of clinicians to run large-scale trials that would be impossible for any individual center or institution. These trials have already changed practice. For instance, the DART demonstrated the power of immunotherapy in rare cancers and influenced NCCN guidelines.

One of the arms of the NCI-MATCH study from the BRAF V600E arm contributed towards the BRAF V600E tissue-agnostic approval. So, the BRAF V600E tissue-agnostic approval was by a pooled analysis of several studies. The ROAR study, the Rare Oncology Agnostic Research study, the NCI-MATCH dataset of tumor-agnostic cohort, and another pediatric trial, and also evidence from literature and evidence of case reports. And all this pooled analysis contributed to the tissue-agnostic approval of BRAF V600E across multiple rare cancers.

There are several patient advocacy organizations which are the real unsung heroes here. Groups like, for instance, we mentioned in the paper, Target Cancer Foundation, don't just raise awareness for rare cancer research, they actively connect patients to trials providing financial, emotional support, and even run their own studies like the TRACK trial. They also influence policy to make access easier.

On a global scale, initiatives like DRUP in the Netherlands, the ROME study in Italy, the PCM4EU in Europe are expanding precision medicine across these borders. These collaborations accelerate research, improve trial enrollment, and ensure patients everywhere can have access to these cutting-edge therapies. Again, it is truly a team effort, right? It is a multi-stakeholder approach. Researchers, clinicians, investigators, industry, regulators, academia, patients, patient advocates, and their caregivers all working together. And it takes a village.

Dr. Hope Rugo: Absolutely. I mean, what a nice response to that. And I think really exciting and it is great to see your passion about this as well. But it helps all of us, I think, getting discouraged in treating these cancers to understand what is happening moving forward. And I think it is also a fabulous opportunity for our junior colleagues as they rise up in academics to be involved in these international collaborative efforts which are further expanding.

One of the things that comes up for clinical trials for patients, and I think it is highlighted with rare cancers because, as you mentioned, people are all over the place, you know, they are so rare. They are all far away. Our patients are always saying to us, "Should I go here for a phase 1 trial?" Can you talk a little bit about how we can overcome these financial and geographic burdens for the patients? You talked about having trials locally, but it is a big financial and just social burden for patients.

Dr. Vivek Subbiah: Great point. Financial cost is a major barrier in rare cancer clinical trials. It is a major barrier not just in rare cancer clinical trials, but in clinical trials in general. The economics of rare cancer research are one of the toughest challenges we face. Developing a new drug is already expensive, often billions of dollars. On an average, it takes 2 billion dollars or 2.8 billion dollars according to some data from drug discovery to approval.

For rare cancers, the market is tiny, which means the pharmaceutical companies have really little financial incentive to invest. That is why initiatives like the Orphan Drug Act were created to provide tax credits, grants, and market exclusivity to encourage development for rare diseases.

Clinical trials themselves are expensive because the small patient populations mean longer recruitment times and higher per-patient costs. Geographic dispersion, as you mentioned, for the patients adds travel, coordination. That is why we need to think out of the box about decentralized trial infrastructure so that we can mitigate some of these expenses. Complex trial designs like basket or platform trials sometimes require sophisticated data systems and regulatory oversight. That is a challenge. And I think some of the pragmatic studies like ASCO TAPUR have overcome those challenges.

Advanced technologies like next-gen sequencing and molecular profiling also add significant upfront cost to this. Funding is also limited because rare cancers receive less attention compared to common cancers. Public funding and cooperative group trials help a lot, but I think they cannot cover everything. Patient advocacy organizations sometimes step in to bridge these gaps, but sustainable financing remains a huge challenge.

So, the bottom line is without financial incentives and collaborating funding models, many promising therapies for rare cancers would never make it to patients. That is why we need system-wide policy changes, global partnerships, and innovative, effective, seamless trial designs which are so critical so that they can help reduce the cost and make research feasible so that we can deliver the right drug to the right patient at the right time.

Dr. Hope Rugo: There is a lot of excitement about the future integration of AI in screening. Just at the San Antonio Breast Cancer meetings, we have a number of different presentations about AI to find markers, even like HER2, and using AI where you would screen and then match patients to clinical trials. Do you have any guidance for the rare cancer community on how to leverage this technology in order to optimize patient enrollment and, I think, identification of the best treatment matches?

Dr. Vivek Subbiah: I think artificial intelligence, AI, is a game-changer in the making. Right now, clinical trial is clunky. Matching patients to trial is often manual, time consuming, laborious. You need a lot of personnel to do that. AI can automate this process by analyzing genomic data, medical records, and trial eligibility criteria to find the best matches quickly, accurately, and effectively.

For the community, the key is to invest in data standardization and interoperability because AI needs clean, structured data to work effectively.

Dr. Hope Rugo: Thank you so much, Dr. Subbiah, for sharing these fantastic insights with us on the podcast today and for your excellent article.

Dr. Vivek Subbiah: Thank you so much.

Dr. Hope Rugo: We thank you, our listeners, for joining us today. You will find a link to Dr. Subbiah's Educational Book article in the transcript of this episode. And please join us again next month on By the Book for more insightful views on key issues and innovations that are shaping modern oncology.

Thank you.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Follow today's speakers:

Dr. Hope Rugo

@hoperugo

Dr. Vivek Subbiah

@VivekSubbiah

Follow ASCO on social media:

ASCO on X

ASCO on Bluesky

ASCO on Facebook

ASCO on LinkedIn

Disclosures:

Dr. Hope Rugo:

Honoraria: Mylan/Viatris, Chugai Pharma

Consulting/Advisory Role: Napo Pharmaceuticals, Sanofi, Bristol Myer

Research Funding (Inst.): OBI Pharma, Pfizer, Novartis, Lilly, Merck, Daiichi Sankyo, AstraZeneca, Gilead Sciences, Hoffman La-Roche AG/Genentech, In., Stemline Therapeutics, Ambryx

Dr. Vivek Subbiah:

Consulting/Advisory Role: Loxo/Lilly, Illumina, AADI, Foundation Medicine, Relay Therapeutics, Pfizer, Roche, Bayer, Incyte, Novartis, Pheon Therapeutics, Abbvie

Research Funding (Inst.): Novartis, GlaxoSmithKline, NanoCarrier, Northwest Biotherapeutics, Genentech/Roche, Berg Pharma, Bayer, Incyte, Fujifilm, PharmaMar, D3 Oncology Solutions, Pfizer, Amgen, Abbvie, Mutlivir, Blueprint Medicines, Loxo, Vegenics, Takeda, Alfasigma, Agensys, Idera, Boston Biomedical, Inhibrx, Exelixis, Amgen, Turningpoint Therapeutics, Relay Therapeutics

Other Relationship: Medscape, Clinical Care Options

View Details

Dr. Pedro Barata and Dr. Ravin Garg discuss strategies to increase trial representation, including leveraging trial navigators and prioritizing pragmatic trial models, as featured in the ASCO Educational Book article, "Practical Guide to Clinical Trial Accessibility: Making Trial Participation a Standard of Care."

TRANSCRIPT

Dr. Pedro Barata: Hello, and welcome to By the Book, a podcast from ASCO featuring compelling perspectives from authors and editors of the ASCO Educational Book. I'm Dr. Pedro Barata. I am a medical oncologist at University Hospital Seidman Cancer Center and an associate professor of medicine at Case Western Reserve University in Cleveland, Ohio. I am also the associate editor of the ASCO Educational Book.

We know that in recent years, the oncology community has increasingly prioritized the need to modernize clinical trial eligibility, reduce patient burden, and enhance diversity in trial participation. On that note, today we will be speaking about ways to enhance access to clinical trials with Dr. Ravin Garg. He is a hematologist oncologist at Maryland Oncology Hematology and also an assistant professor of oncology at Johns Hopkins Hospital in Baltimore. Dr. Garg is also the co-author of a fantastic paper in the ASCO Educational Book titled, "Practical Guide to Clinical Trial Accessibility: Making Trial Participation a Standard of Care."

Dr. Garg, welcome. Thanks for being here, and congrats on your paper.

Dr. Ravin Garg: Thank you for having me, Pedro. I am excited to be here.

Dr. Pedro Barata: [KI1] Your paper is a wonderful, multidisciplinary piece that actually features perspectives from the different stakeholders, right? The patient advocacy, industry, community practice, and academia about these challenges in making trials more available.

This podcast is a wonderful platform. It reaches out to a lot of folks within our community. So, I will start by asking you the obvious. Why do you think it is a must read for our community, for our listeners?

Dr. Ravin Garg: So Pedro, thanks again for inviting me. You do a great job with these podcasts.

So, I think first and foremost, oncologists right now are under a lot of stress, just in terms of clinical volume. There is concern for research money, and how we get the best care for our patients. So I think this article is very important because it helps bring together, as you had mentioned, the stakeholders throughout academic to community practice and everywhere in between, and try to find how, as a team with different oncologists who partake in different aspects of oncology, can come together to streamline the process to try to get our patients on trials, or certainly have them have availability of trials, just if they are interested in going on them. Being in practice, we have had several challenges that we can talk about throughout this podcast, but I think it is a very important paper because it recognizes that at the end of the day, it takes a team effort for all of us in academics, community, industry, and pharmaceuticals to really come together as a team to really help put forth the trials for our patients.

Dr. Pedro Barata: So, from the perspective of a community oncologist, how do you put together, or maybe you can describe some of the challenges that you see to increase trial participation in the community?

Dr. Ravin Garg: Yes, Pedro, that is a great question, and it is something that I keep on thinking about and trying to find ways to be better at it myself. But I will say some of the challenges as a community doctor that I have seen for myself and talking to other colleagues. Number one, I do think there is a lot of stress on doctors in the community in general, Pedro. Oftentimes we are tasked to see a wide smorgasbord of patients, so we may not have the luxury of being a specialist in any particular tumor subtype. Like oftentimes, we will have to see lung cancer, the next one will be breast cancer, the next one could be CML, the next one could be thrombocytopenia. And as you know better than I do, Pedro, the field in each one of these disciplines is changing so rapidly: molecular genomics, radioligand treatments, different imaging tests, MRD testing for some of our hematologic malignancies. And I think one challenge we have in community is just keeping up with the basics of Oncology 101. In the process of doing that, it can be very difficult to sometimes remember that we have very exciting trials available for our patients. So, I think a lot of it is the day in and day out of being an oncologist is so taxing at times that oftentimes a research trial is not the first thing in our head space when we see a patient.

I think number two, Pedro, at least in the community, and perhaps this is with academics too, is that we are bombarded, I would say, by a lot of messaging these days. We have in-baskets to go through, labs to go through, things of that nature. And in the process of a patient visit, seeing them, doing an exam, taking a history, trying to go over the NCCN guidelines on best practice for how to manage their care, at least for me at times, it is very hard to remember, "Hey, there might be a great trial available, whether within our network or maybe partnering with an academic center." So getting through a day can be fraught with a lot of peril and just difficulties, I would say.

And I would say number three, Pedro, at least as, you know, I am in a private practice where I do see a wide range of benign and malignant hematology and solid tumors, so I would not call myself a specialist. And I think the challenge with that, at least for trials, Pedro, is that when you are a specialist or perhaps you are focusing on a couple of disease subtypes, you become more of an authoritative voice in those types of tumors, and you might be more aware of the trials within your network or perhaps in proxy with an academic center that you can offer your patient. So I think when sometimes we spread ourselves too thin, it can be very hard to be a thought leader, if you will, in a particular subtype of a malignancy, let's say, and maybe not be aware of a trial that could be really well-suited for your patient.

In terms of ideas that myself and colleagues have had in terms of helping mitigate against some of these, I would say, setbacks or issues in the practice for trial enrollment, some of the things we have talked about, Pedro, is, number one, is we do partner with academic centers. So we live here in Maryland. We have several really fantastic academic centers. So, you know, oftentimes, not just within our practice of Maryland Oncology Hematology, we have a lot of great trials available here too, for certain, but in addition to that, we will often times work with doctors at Georgetown, Johns Hopkins, and Maryland if they have a compelling trial that we do not have within our network. It is really of the patient's interest, Pedro, to reach out to them in a collaborative manner to see if they have a trial that might be really compelling for your patient. So I do find myself collaborating a lot with colleagues in, like talented like yourself in academics. You know, I think you do a lot of GU malignancies. So as an example, like partnering with colleagues who are GU experts and say, "Hey, we have a patient with stage IV renal cell. These are the standard options I know, but are there any trials that you might have available?"

I think the other thing that has been very helpful for us is having navigators within research, Pedro. Like as an example, what has really helped the uptake of trial enrollment for our center in Annapolis is having a research navigator because often times what they can do is, a priori, Pedro, before you see the patient and you are kind of formulating a standard of care treatment plan perhaps, they might tug you on the shirt and say, "Hey, we have a great trial here through Sarah Cannon, or there might be something else out there." And being aware of that when you go into a patient's room really provides a nice arena, if you will, to go and say, "The standard of care is here, but hey, we have a trial option that might be well suited for you, maybe perhaps even better, that we can talk about, too." So having research support in the community is really a huge boon, I think, Pedro, for us to really increase our enrollment for patients onto trials.

Dr. Pedro Barata: Yes, I really love that, Ravin. So, let me switch gears a bit. I would love for you to talk a little bit about patient advocacy because they do play a huge role in cancer, and they address many barriers. How do you think we should leverage the patient advocacy groups to reduce patient burden and maybe have them really leverage patient advocacies to improve representation in clinical trials? What do we think we can do more?

Dr. Ravin Garg: Oh, Pedro, I think they are very critically important. As a clinical oncologist now, and I would say this is for anyone in the field of medicine, you are exactly right. I think patients are bombarded by information. There are a lot of things online, whether it be TikTok, Facebook, Google, Yahoo, and people really just have a lot of information given to them. And some of it is fact driven, and some of it is not, Pedro. And oftentimes, I do think there can be at times a mistrust with some medical personnel. I think we are in an era where we are seeing that to some degree with some attributes of medicine. And I think of it as an opportunity for education for the patient and for myself as a physician.

And I think patient advocates, to your point, which was well taken, serve as a bridge to both. And what I mean is that, you know, patient advocates are wonderful. They are, I think, outstanding communicators. They almost are a neutral party, Pedro, where many patients feel that they are an independent source of information that is free of bias, if you will. They are there to provide support, emotional support, scientific support for patients so they can make an informed decision.

So, in terms of our practice right now, patient advocates is something that we are evolving in that capacity, I would say, Pedro. I think now more than ever, having more people as bridges of communication with care providers along with patients is of critical importance. And I would venture a guess, and I think this has been published, where patient advocates really can help tremendously in familiarizing patients with trials and what they are all about and maybe clear up some misconceptions of what trials, what the mission of trials are. Because I do think some patients, at least I have had a few over the years, where when they hear the term trial, they almost think they are being experimented upon, when, in point of fact, they could really help advance their care. That messaging along the way for some can may be mixed up a little bit. And so I think patient advocates is a really great way to offer more information for patients with a source they find very independent and trustworthy, if you will. And it can really help expedite, and I think make a more fruitful conversation for care providers, whether academic or community, and they might be more open-minded in terms of enrolling onto a trial.

Dr. Pedro Barata: Wonderful. Yes, I agree. I agree with you completely.

So let's focus a little bit now on the folks designing the studies. We usually call them the sponsors. It might be an academic sponsorship, if you will, but we can also have pharma being the sponsor of a study. The angle from an academic design, it is not necessarily the same as what happens when we have pharma. And from that angle, how do you think a more inclusive research can be promoted?

Dr. Ravin Garg: Oftentimes with trials, I think keeping them simple, as simple as we can. And what I mean by that is, often times for trials, Pedro, even for care providers who are enrolling, it can be daunting when there are a lot of different things involved, particularly, let's say, for investigator sponsored, which are incredibly brilliant science, incredible, but it can be a little bit daunting for patients and even the referring physician to talk about getting translational specimens, imaging, traveling to certain centers to get scans and biopsies and even different diagnostic testing like PSMA testing for, you know, prostate cancer. And it can, I think, be very intimidating for patients in terms of what might be required of him or her to enter onto a trial. Like, "This is not what I signed up for. This is laborious. This is a full time job for me. Do I have to pay for parking to go to a city? Do I have to pay for these imaging tests? And do I have to stay in a place for my family to enroll onto a trial?" So I think keeping trials as simple as possible, but yet cull the data we need as investigators where we can really advance the care, hopefully get approval for a drug, but also learn more about the medication and how it works for our patients. So I think simplifying language for trial is very important. I know when I have gone over studies for patients, Pedro, if it is a voluminous amount of information, they can right away get very intimidated. "Like, oh my goodness, this is like a term paper for college again," you know? I am joking, but you know, keeping language simplified is very important, I think, number one.

And I feel that sometimes when they are asked to do a lot of different diagnostic testing, which is very important for translational work, I 100% understand, but I do think sometimes patients can get a little bit off put, if you will, and frustrated with the whole process of doing it.

The second thing for our patients, Pedro, that they have mentioned to us when we put them on trials, not just within our own site but elsewhere, is that it takes a lot of time in terms of collecting information, perhaps a washout period from their last standard of treatment prior to enrollment onto a study. Many patients, Pedro, as you know better than I do, are in maybe crisis in terms of their health and their cancer might be growing, promulgating out of control, and they worry about not being able to expeditiously start onto a treatment, onto a trial. So that can lead to a lot of frustration.

And one thing that you brought up, which was outstanding for me, is the enrollment criterion for some of our patients is felt to be somewhat strict. We have had some patients who may have had a remote history of a stage I malignancy that was by all accounts in remission, you know, let's say 4 or 5 years in the past, and the risk of recurrence at this point would be incredibly low, but they may not be able to enter onto a study because of some stringent criterion put forth. And that can be a little bit frustrating. In fact, I have had one or two patients who, as an example, with kidney issues, but the GFR was about 60, like right near a cutoff that oftentimes, as you know, we use where you can get into trial or not. And you know, if they are at 58, as an example, and otherwise they are a picture of health, a great candidate for a trial that will likely advance their care, and if the entry criterion is too stringent, that might be a lost opportunity for all parties involved, all stakeholders, if you will.

I do appreciate the criterion for entry onto studies cannot be too liberalized. You have to have a certain baseline, but there is a little bit of a gray area and tension, of sorts, if you will, where the patient has a comorbid illness that is a disqualifying offense, but in practicality, perhaps it shouldn't be, especially if they are motivated and there is an opportunity to really advance their care. We have run into, not often, but sometimes in the past, I should say, where patients have been very off put because we try to get them onto a study and there may have been a particular feature or attribute in their underlying care that they couldn't get onto it. So I think having a little bit more thoughtfulness, perhaps, in terms of entry criterion and practicality, if you will, I think would really help enrollment onto studies.

Dr. Pedro Barata: Really well said. Is there anything else that you would like to tell our listeners before we wrap up the podcast today?

Dr. Ravin Garg: I would say just macroscopically speaking, it is really an honor to be an oncologist. I think I speak for both of us. Anyone listening who is thinking about the field, it is tremendous. Just the research, the bravery of our patients, and the thoughtfulness of our scientists like Pedro and translationalists and clinical trialists is really awe inspiring. So I have really loved this field.

I will say from a trial perspective, we really need to enter as many patients as we can onto trials because the science is so brilliant now, the genomic underpinnings of the tumor, we are making great strides as a team of clinicians and scientists, translationalists. So the more that we can get people onto trials and get approved drugs, it is going to help them out in the end. So I think it is such an important time for all of us to come together as a community, find the best way to help our patients out. And clinical trials have to be at the forefront of how we can continue to advance care for our patients.

Dr. Pedro Barata: Yeah, no Ravin, I really agree with you. We really need to increase access to clinical studies, and actually your paper is a great step in that direction by raising awareness, bringing up solutions, and again, collaboration, collaboration, collaboration is really a multidisciplinary effort to accomplish that.

Thank you so much for sharing your fantastic thoughts and insights with us.

Dr. Ravin Garg: Thank you, Pedro. I am- you do a wonderful job with these podcasts. I am really honored to meet you and to be part of this.

Dr. Pedro Barata: And thank you to our listeners for your time today. I encourage you to check out Dr. Garg's article in the 2025 ASCO Educational Book. We will post a link to the paper in our show notes. And please join us again next month on By the Book for more insights on key advances and innovations that are shaping modern oncology. Thank you for your attention.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Disclosures:

Dr. Pedro Barata:

Stock and Other Ownership Interests: Luminate Medical

Honoraria: UroToday

Consulting or Advisory Role: Bayer, BMS, Pfizer, EMD Serono, Eisai, Caris Life Sciences, AstraZeneca, Exelixis, AVEO, Merck, Ipson, Astellas Medivation, Novartis, Dendreon

Speakers' Bureau: AstraZeneca, Merck, Caris Life Sciences, Bayer, Pfizer/Astellas

Research Funding (Inst.): Exelixis, Blue Earth, AVEO, Pfizer, Merck

Dr. Ravin Garg:

Patents, Royalties, Other Intellectual Property: Creator, editor, and writer of hemeoncquestions.com

View Details

Dr. Pedro Barata and Dr. Aditya Bagrodia discuss the evolving landscape of testicular cancer survivorship, the impact of treatment-related complications, and management strategies to optimize long-term outcomes and quality of life.

TRANSCRIPT:

Dr. Pedro Barata: Hello and welcome to By the Book, a podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I'm Dr. Pedro Barata. I'm a medical oncologist at University Hospitals Seidman Cancer Center and associate professor of medicine at Case Western Reserve University in Cleveland, Ohio. I'm also an associate editor of the ASCO Educational Book.

We all know that testicular cancer is a rare but highly curable malignancy that mainly affects young men. Multimodal advances in therapy have resulted in excellent cancer specific survival, but testicular cancer survivors face significant long term treatment related toxicities which affect their quality of life and require surveillance and management. With that, I'm very happy today to be joined by Dr. Aditya Bagrodia, a urologic oncologist, professor, and the GU Disease Team lead at UC San Diego[KI1] Health, and also the lead author of the recently published paper in the ASCO Educational Book titled, "Key Updates in Testicular Cancer: Optimizing Survivorship and Survival." And he's also the host of the world-renowned BackTable Urology Podcast.

Dr. Bagrodia, I'm so happy that you're joining us today. Welcome.

Dr. Aditya Bagrodia: Thanks, Pedro. Absolutely a pleasure to be here. Really appreciate the opportunity.

Dr. Pedro Barata: Absolutely.

So, just to say that our full disclosures are available in the transcript of this episode.

Let's get things started. I'm really excited to talk about this. I'm biased, I do treat testicular cancer among other GU malignancies and so it's a really, really important topic that we face every day, right? Fortunately, for most of these patients, we're able to cure them. But it always comes up the question, "What now? You know, scans, management, cardio oncology, what survivorship programs we have in place? Are we addressing the different survivorship piece, psychology, fertility, et cetera?" So, we'll try to capture all of that today.

Aditya, congrats again, you did a fantastic job putting together the insights and thoughts and what we know today about this important topic. And so, let's get focused specifically about what happens when patients get cured. So, many of us, in many centers, were fortunate enough to have these survivorship programs together, but I find that sometimes from talking to colleagues, they're not exactly the same thing and they don't mean the same thing to different people, to different institutions, right?

So, first things first. What do you tell a patient perhaps when they ask you, "What can happen to me now that I'm done with treatment for testicular cancer?" Whether it's chemotherapy or just surgery or even radiation therapy? "So, what about the long term? What should I expect, Doctor, that might happen to me in the long run?"

Dr. Aditya Bagrodia: Totally. I mean, I think that question's really front and center, Pedro, and really appreciate you all highlighting this topic. It was an absolute honor to work with true thought leaders and the survivorship bit of it is front and center, in my opinion.

It's really the focus, you know, we, generally speaking should be able to cure these young men, but it's the 10, 15, 20 years down the way that they're going to largely contend with. The conversation really begins at diagnosis, pre-education. Fortunately, the bulk of patients that present are those with stage one disease, and even very basic things like before orchiectomy, talking about a prosthetic; we know that that can impact body image and self esteem, whether or not they decide to receive it or not. Actually, just being offered a prosthetic is important and this is something, you know, for any urologist, it's kind of critical. To discussing fertility elements to this, taking your time to examine the contralateral testicle, ask about fertility problems, issues, concerns, offer sperm banking, even in the context of a completely normal contralateral testicle, I think these things are quite important.

So if it's somebody with stage one disease, you know, without going too far down discussing adjuvant therapy and so forth, I will start the conversation with, "You know, the testes do largely two things. They make testosterone and they make sperm." By and large, patients are going to be able to have acceptable levels of testosterone, adequate sperm parameters to maintain kind of a normal gonadal state and to naturally conceive, should that be something they're interested in. However, there's still going to be, depending on what resource you look at, somewhere in the order of 10-30% that are going to have issues.

Where I think for the stage one patients, it's really incumbent upon us is actually to not wait for them to discuss their concerns, particularly with testosterone, which many times can be a little bit vague, but to proactively ask about it every time. Libido, erectile quality, muscle mass maintenance, energy, fatigue. All of these are kind of associated symptoms of hypogonadism. But for a lot of kids 18-20 years old, it's going to be something insidious that they don't think about. So, for the stage one patients, it absolutely starts with gonadal function.

If they are stage two getting surgery, I think the counseling really needs to center around a possibility for ejaculatory dysfunction. Now, for a chemotherapy-naive, nerve-sparing RPLND, generally these days we should be able to preserve ejaculatory function at high volume centers, but you still want to bring that up and again kind of touch base on thinking about sperm banking and so forth before the operation, scars, those are things I think worth talking about, small risk of ascites.

Then, I think the intensity of potential long term adverse effects really ramps up when we're talking about systemic therapy, chemotherapy. And then there's of course some radiation therapy specific elements that come up. So, for the chemotherapy bits of it, I really think this is going to be something that can be a complete multi-system affected intervention. So, anxiety, depression, our group has actually shown using some population resources that even suicidality can be increased among patients that have been treated for germ cell tumor.

You know, really from the top down, tinnitus, hearing changes, those are things that we need to ask about at every appointment. Neuropathy, sexual health, that we kind of talked about, including ED (erectile dysfunction), vertigo, dizziness, Raynaud's phenomenon, these are kind of more the symptoms that I think we need to inquire about every time. And what we do here and I think at a lot of survivorship programs is use kind of a battery of validated instruments, germ cell tumor specific, platinum treated patient specific. So we use a combination of EORTC questions and PROMIS questions, which actually serves as like a review of systems for the patient, also as a research element. We review that and then depending on what might be going on, we can dig into that further, get them over to colleagues in audiology or psychology, et cetera.

And then of course, screening for the hypertension, hyperlipidemia, metabolic syndrome with basically you or myself or somebody kind of like us serving, many times it's the role of the PCP, just making sure we're checking out, you know, CBC, CMP, et cetera, lipid parameters to screen for those kind of cardiac associated issues along with secondary malignancies.

Dr. Pedro Barata: So that's super comprehensive and thorough. Thank you so much. Actually, I love how you break it down in a simple way. Two functions of the testes, produce testosterone and then, you know, the problem related to that is the hypogonadism, and then the second, as you mentioned, produce sperm and of course related to the fertility issues with that.

So, let's start with the first one that you mentioned. So, you do cite that in your paper, around 5-10% of men end up getting, developing hypogonadism, maybe clinical when they present with symptoms, maybe subclinical. So, I'm wondering, for our audience, what kind of recommendations we would give for addressing that or kind of thinking of that? How often are you ordering those tests? And then, when you're thinking about testosterone replacement therapy, is that something you do immediately or are there any guidelines into context that? How do you approach that?

Dr. Aditya Bagrodia: So, just a bit more on digging into it even in terms of the questions to ask, you know, "Do you have any decrease in sexual drive? Any erectile dysfunction? Are your morning erections still taking place? Has the ejaculate volume changed? Physically, muscle mass, strength? Have you been putting on weight? Have you noticed increase in body fat?" And sometimes this is complicated because there's some anxiety that comes along with a cancer diagnosis when you're 20, 30 years old, multifactorial, hair loss, hot flashes, irritability. Sometimes they'll, you know, literally they'll say, "You know, my significant other or partners noticed that I'm really just a little bit labile."

So I think, you know, there's the symptoms and then checking, usually kind of a gonadal panel, FSH, LH, free and total testosterone, sex hormone binding globulin, that's going to be typically pretty comprehensive. So if you've got symptoms plus some laboratory work, and ideally that pre-orchiectomy testosterone gives you some delta. If they started out at an 800, 900, now they're 400, that might be a big change for them.

And then, when you talk about TRT (Testosterone Replacement Therapy) recommendations, you know, Pedro, yourself, myself, we're kind of lucky to be at academic centers and we've got men's health colleagues that are ultra experts, but at a high level, I would say that a lot of the TRT options center around fertility goals. Exogenous testosterone treats the low T, but it does suppress gonadal function, including spermatogenesis.

So if that's not a priority, they can just get TRT. It should be done under the care of a urologist, a men's health, an endocrinologist, where we're checking liver chemistries and CBCs and a PSA and so forth. If they're interested in fertility preservation, then I would say engaging an endocrinologist, men's health expert is important. There's medications even like hCG, Clomid, which works centrally and stimulate the gonadal access. Niche scenarios where they might want standard TRT now, and then down the way, 5, 7 years, they're thinking about coming off of that for fertility purposes, I think that's really where you want to have an expert involved because there's quite a bit of nuance there in recovery of actual spermatogenesis and so forth.

To kind of summarize, you got to ask about it. Checking it is, is not overly complicated. We do a baseline pre-orchiectomy and at least once annually, you can tag it in with the tumor markers, so it's not an extra blood draw. And if they have symptoms of course, kind of developed, then we'll move that up in the evaluation.

Dr. Pedro Barata: Got it. And you also touch base on the fertility angle, which is truly important. And I'm just curious, you know, a lot of times many of us might see one, two patients a year, right, and we forget these protocols and what we've got to do about that.

And so I'm interested to hear your thoughts about when you think about fertility, and how proactive you get. In other words, who do you refer for the fertility clinic, for a fertility preservation program? You know, do all cases despite getting through orchiectomy or just the cases that you're going to, you know you're going to seek chemotherapy at some point? What kind of selection or it depends on the chemo, like how do you do that assessment about the referral for preservation program that you might have available at UCSD?

Dr. Aditya Bagrodia: Yeah, I mean I feel really fortunate to sit on the NCCN Testis Cancer Guidelines. It's in there that fertility counseling should be discussed prior to orchiectomy. So 100% bring it up. If there are risk factors, undescended testicles, previous history of fertility concerns, atrophic contralateral testicle, anything on the ultrasound like microlithiasis in the contralateral testicle, you kind of wanna get it there. And then again, there's kind of niche scenarios where you're really worried, maybe get a semen analysis and it doesn't look that good, arrange for the time of orchiectomy to have onco-testicular sperm extraction from the, quote unquote, "normal" testis parenchyma. You know, I think you have to be kind of prepared to go that route and really make sure you're doing this completely comprehensively.

So pre-orchiectomy all patients. Don't really push for it too hard if they've got a contralateral testicle, if they've had no issues having children. There's some cost associated with this, sperm banking still isn't kind of covered even in the context of men with cancer. If they've got risk factors, absolutely pre-orchiectomy.

Pre-RPLND, even though the rates of ejaculatory dysfunction at a high-volume center should be low single digits, I'll still offer it. That'd be a real catastrophe if they were in that small proportion of patients and now they're going to be reliant on things like intrauterine insemination, where it becomes quite expensive.

Pre-chemo, everybody. That's basically a standard these days where it should be discussed and it's kind of amazing currently, even if you don't have an accessible men's health fertility clinic, there are actually companies, I have no vested interest, Fellow is one such company where you can actually create an account, receive a FedEx semen analysis and cryopreservation kit, send it back in, and all CLIA certified, it's based out of California. The gentleman that runs it, is a urologist and very, very bright guy who's done a lot of great stuff for testis cancer. So, even for patients that are kind of in extremis at the hospital that kind of need to get going like yesterday, we still discuss it. We've got some mechanisms in place to either have them take a semen analysis over to our Men's Health clinic or send it off to Fellow, which I think is pretty cool and that even extends to some of our younger adolescent patients where going to a clinic and providing a sample might be tricky.

So, I think bringing it up every stage, anytime there's an intervention that might be offered, orchiectomy, chemo, surgery, radiation, it's kind of incumbent on us to discuss it.

Dr. Pedro Barata: Gotcha. That's super helpful. And you also touch base on another angle, which is the psychosocial angle around this. You mentioned suicidal rates, you mentioned anxiety, perhaps depression in some cases as well as chronic fatigue, not necessarily just because of the low testosterone that you can get, but also from a psychological perspective. I'm curious, what do the recommendations look like for that? Do these patients need to see a social worker or a psychologist, or do they need to answer a screening test every time they come to see us and then based on that, we kind of escalate, take the next steps according to that? Do they see a psychologist perhaps every so often? How should that be managed and addressed?

Dr. Aditya Bagrodia: It's an excellent question and again, these can be rather insidious symptoms where if you don't really dig in and inquire, they can be glossed over. I mean, how easy to say, "Your markers look okay, your scans look okay. See you in six months," and keep it kind of brief. First off, I think bringing it up proactively and normalizing it, that, "This may be something that you experience. Many people do, you're not alone, there's nothing kind of wrong with you."

I also think that this is an area where support groups can be incredibly useful. We host the Testicular Cancer Awareness Foundation support group here. They'll talk about chemo brain or just like a little bit of an adjustment disorder after their diagnosis. Support groups, I think are critical. As I mentioned, we have a survivorship program that's led by a combination of our med oncs, myself on the uro-onc side, as well as APPs, where we are systematically asking about essentially the whole litany of issues that may arise, including psychosocial, anxiety, depression, suicidality. And we've got a nice kind of fast path into our cancer center support services for these young men to meet with a psychologist. If that isn't going to be sufficient, they can actually see a psychiatrist to discuss medications and so forth.

I do think that we've got to screen for these because, as anticipated from diagnosis, those first 2 years, we see a rise. But even 10, 15 years out, we note, compared to controls, that there is an increased level of anxiety, depression, suicidality that might not just take place at that initial acute period of diagnosis and treatment.

Dr. Pedro Barata: Really well said. Super important.

So I guess if I were to put all these together, with these really amazing advances in technology, we all know AI, some of us might be more or less aware of biomarkers coming up, including microRNA for example, and others, like as I think of all these potential long term complications for these patients, look at the future, I guess, can we use this as a way to deescalate treatment where it's not really necessary, as a way to actually prevent some of these complications? Like, how do we see where we're heading? As we manage testicular cancer, let's say, within the next 5 or 10 years, do you think there's something coming up that's going to be different from what we're doing things today?

Dr. Aditya Bagrodia: Totally. I mean, I think it's as exciting as a time as there's ever been, you know, maybe notwithstanding circa 1970s when platinum was discovered. So microRNAs, which you mentioned, you know, there's a new candidate biomarker, microRNA-371. We are super excited here at UCSD. We actually have it CLIA-certified available in our lab and are ordering these tests for patients kind of in their acute stage, you know, stage one and surveillance, stage two, post-RPLND, receiving chemotherapy. And essentially this is a universal germ cell tumor specific biomarker, except for teratoma, suffice it to say 90% sensitive and specific. And I think it's going to change the way that we diagnose and manage patients. You know, pre-orchiectomy, that's pretty straightforward. Post-orchiectomy, maybe we can really decrease the number of CT scans that are done. Maybe we can identify those patients that basically have occult disease where we can intervene early, either with RPLND or single cycle chemo. Post-RPLND, identify the patients who are at higher risk of relapse that may benefit from some adjuvant therapy. In the advanced setting, look at marker decline for patients in addition to standard tumor markers. Can we modulate their systemic therapy?

So, the international interest is largely on modifying things. There's really cool clinical trials that we have for stage one patients, that treatment would be prescribed based on a post-orchiectomy microRNA. I think the microRNAs are really exciting. Teratoma remains an outstanding question. I think this is where maybe ctDNA, perhaps some radiomics and advanced imaging processing and incorporating AI may allow us to safely avoid a lot of these post-chemo RPLNDs. And then identification using SNPs and so forth of who might be most susceptible to some of the cardiac toxicity, autotoxicity and personalizing things in that way as well.

Dr. Pedro Barata: Super exciting, right, what's about to come? And I agree with you, I think it's going to change dramatically how we manage this disease.

This has been a pleasure sitting down with you. I guess before letting you go, anything else you'd like to add before we wrap it up?

Dr. Aditya Bagrodia: Yeah, first off, again, just want to thank you and ASCO for the opportunity. And it's easy enough to, I think, approach a patient with the testicular germ cell tumor as, "This is an easy case. We're just going to do whatever we've done. Go to the guidelines that says do X, Y, or Z." But there's so much more nuance to it than that. Getting it done perfectly, I think, is mandatory. Whatever we do is an impact on them for the next 50, 60, 70 years of their life. And I found the germ cell tumor community, people are really passionate about it. If you're ever uncertain, there's experts throughout the country and internationally. Ask somebody before you do something that you can't undo. I think we owe it to them to get it perfect so that we can really maximize the survivorship and the survival like we've been talking about.

Dr. Pedro Barata: Aditya, thanks for sharing your fantastic insights with us on this podcast.

Dr. Aditya Bagrodia: All right, Pedro. Fantastic. Appreciate the opportunity.

Dr. Pedro Barata: And also, thank you to our listeners for your time today. I actually encourage you to check out Dr. Bagrodia's article in the 2025 ASCO Educational Book. We'll post a link to the paper in the show notes. Remember, it's free access online, and you can actually download it as well as a PDF. You can also find on the website a wealth of other great papers from the ASCO Educational Book on key advances and novel approaches that are shaping modern oncology.

So with that, thank you everyone. Thank you, Aditya, one more time, for joining us. Thank you, have a good day.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Follow today's speakers:

Dr. Pedro Barata

@PBarataMD

Dr. Aditya Bagrodia

@AdityaBagrodia

Follow ASCO on social media:

@ASCO on X (formerly Twitter)

ASCO on Bluesky

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Disclosures:

Dr. Pedro Barata:

Stock and Other Ownership Interests: Luminate Medical

Honoraria: UroToday

Consulting or Advisory Role: Bayer, BMS, Pfizer, EMD Serono, Eisai, Caris Life Sciences, AstraZeneca, Exelixis, AVEO, Merck, Ipson, Astellas Medivation, Novartis, Dendreon

Speakers' Bureau: AstraZeneca, Merck, Caris Life Sciences, Bayer, Pfizer/Astellas

Research Funding (Inst.): Exelixis, Blue Earth, AVEO, Pfizer, Merck

Dr. Aditya Bagrodia:

Consulting or Advisory Role: Veracyte, Ferring

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Dr. Hope Rugo and Dr. Giuseppe Curigliano discuss recent developments in the field of bispecific antibodies for hematologic and solid tumors, including strategies to optimize the design and delivery of the immunotherapy.

TRANSCRIPT

Dr. Hope Rugo: Hello and welcome to By the Book, a podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I am your host, Dr. Hope Rugo. I am the director of the Women's Cancers Program and division chief of breast medical oncology at the City of Hope Cancer Center. I am also the editor-in-chief of the Educational Book.

Bispecific antibodies represent an innovative and advanced therapeutic platform in hematologic and solid tumors. And today, I am delighted to be joined by Dr. Giuseppe Curigliano to discuss the current landscape of bispecific antibodies and their potential to reshape the future of precision oncology.

Dr. Curigliano was the last author of an ASCO Educational Book piece for 2025 titled, "Bispecific Antibodies in Hematologic and Solid Tumors: Current Landscape and Therapeutic Advances." Dr. Curigliano is a breast medical oncologist and the director of the Early Drug Development Division and chair of the Experimental Therapeutics Program at the European Institute of Oncology in Milan. He is also a full professor of medical oncology at the University of Milan.

You can find our disclosures in the transcript of this episode.

Dr. Curigliano, Giuseppe, welcome and thanks for being here.

Dr. Giuseppe Curigliano: Thanks a lot for the invitation.

Dr. Hope Rugo: Giuseppe, I would like to first ask you to provide some context for our listeners on how these novel therapeutics work. And then perhaps you could tell us about recent developments in the field of bispecific antibodies for oncology. We are at a time when antibody-drug conjugates (ADCs) are all the rage and, trying to improve on the targeting of specific antigens, proteins, receptors in the field of oncology is certainly a hot and emerging topic.

Dr. Giuseppe Curigliano: So, thanks a lot. I believe really it was very challenging to try to summarize all the bispecific antibodies that are under development in multiple solid tumors. So, the first thing that I would like to highlight is the context and the mechanism of action of bispecific antibodies.

Bispecific antibodies represent a groundbreaking advancement in cancer immunotherapy, because these engineered molecules have the unique ability to target and simultaneously bind to two distinct antigens. That is why we call them bispecific. So typically, one antigen is expressed on the tumor cell and the other one is expressed on the immune effectors, like T-cell or natural killer cells. So this dual targeting mechanism offers several key advantages over conventional monoclonal antibodies because you can target at the same time the tumor antigen, downregulating the pathway of proliferation, and you can activate the immune system. So the primary mechanism through which bispecific antibodies exert their therapeutic effects are: First, T-cell redirecting. I mean, many bispecific antibodies are designed to engage tumor-associated antigens like epidermal growth factor receptor, HER2, on the cancer cell and a costimulatory molecule on the surface of T-cell. A typical target antigen on T-cell is CD3. So what does it mean? That you activate the immune system, immune cells will reach the tumor bed, and you have a dual effect. One is downregulating cell proliferation, the other one is activation of the immune system. This is really important in hematological malignancies, where we have a lot of bispecifics already approved, like acute lymphoblastic leukemia or non-Hodgkin lymphoma.

The second, in fact, is the engagement of the tumor microenvironment. So, if you engage immune effector cells like NK cells or macrophages, usually the bispecific antibodies can exploit the immune system's ability to recognize and kill the immune cells, even if there is a lack of optimal antigen presentation.

And finally, the last mechanism of action, this may have a role in the future, maybe in the early cancer setting, is overcoming immune evasion. So bispecific antibodies can overcome some of the immune evasion mechanisms that we see in cancer. For example, bispecific antibodies can target immune checkpoint receptors, like PD-L1 and CTLA-4. Actually, there is a bispecific under development in breast cancer that has a dual targeting on vascular endothelial growth factor receptor and on PD-L1. So you have a dual effect at the same time.

So, what is really important, as a comment, is we need to focus first on the optimal format of the bispecific, the optimal half-life, the stability, because of course even if they are very efficient in inducing a response, they may give also a lot of toxicities. So in clinical trials already, we have several bispecifics approved. In solid tumors, very few, specifically amivantamab for non-small cell lung cancer, but we have a pipeline of almost 40 to 50 bispecifics under development in multiple solid tumors, and some of them are in the context of prospective randomized trials.

Dr. Hope Rugo: So this is really a fascinating area and it's really exciting to see the expansion of the different targets for bispecific antibodies. One area that has intrigued me also is that some of the bispecifics actually will target different parts of the same receptor or the same protein, but presumably those will be used as a different strategy. It's interesting because we have seen that, for example, in targeting HER2.

Dr. Giuseppe Curigliano: Oh, yes, of course. You may consider some bispecifics like margetuximab, I suppose, in which you can target specifically two different epitopes of the same antigen. This is really an example of how a bispecific can potentially be more active and downregulating, let us say, a pathway, by targeting two different domains of a specific target antigen. This is an important point.

Of course, not all the bispecifics work this way, because some of the target antigen may dimerize, and so you have a family of target antigen; an example is epidermal growth factor receptor, in which you have HER1, HER2, HER3, and HER4. So some of them can inhibit the dimerization between one target antigen and the other one, in order to exert a more antiproliferative effect. But to be honest, the new generation of them are more targeting two different antigens, one on the tumor and one on the microenvironment, because according to the clinical data, this is a more efficient way to reduce proliferation and to activate the immune system.

Dr. Hope Rugo: Really interesting, and I think it brings us to the next topic, which is really where bispecific antibodies have already shown success, and that is in hematologic malignancies where we have seen very interesting efficacy and these are being used in the clinic already. But the expansion of bispecific antibodies into solid tumors faces some key challenges. It's interesting because the challenges come in different shapes and forms. Tell us about some of those challenges and strategies to optimize bispecific antibody design, delivery, patient selection, and how we are going to use these agents in the right kind of clinical trials.

Dr. Giuseppe Curigliano: This is really an excellent question because despite bispecific antibodies having shown a remarkable efficacy in hematological malignancies, their application in solid tumors may have some challenges. The first one is tumor heterogeneity. In hematological malignancy, you have a clear oncogene addiction. Let us say that 90% of the cells may express the same antigen. In solid tumors, it is not the same. Tumor heterogeneity is a typical characteristic of solid tumors, and you have high heterogeneity at the genetic, molecular, and phenotypic levels. So tumor cells can differ significantly from one another, even if within the same tumor. And this heterogeneity sometimes makes it difficult to identify a single target antigen that is universally expressed in an hematological malignancy. So furthermore, sometimes the antigen expressed on a tumor cell can be also present on the normal tissue. And so you may have a cross-targeting. So let's say, if you have a bispecific against epidermal growth factor receptor, this will target the tumor but will target also the skin with a lot of toxicity.

The second challenge is the tumor microenvironment. The solid tumor microenvironment is really complex and often immunosuppressive. It is characterized by the presence of immunosuppressor cells like the T regulators, myeloid derived suppressor cells, and of course the extracellular matrix. All these factors hinder immune cell infiltration and also may reduce dramatically the effectiveness of bispecific antibodies. And as you know, there is also an hypoxic condition in the tumor.

The other challenge is related to the poor tumor penetration. As you know also with antibody-drug conjugate, only 1 to 3% of the drug will arrive in the tumor bed. Unlike hematological malignancies where tumor cells are dispersed in the blood and easily accessible, the solid tumors have a lot of barriers, and so it means that tumor penetration can be very low. Finally, the vascularity also of the tumor can be different across solid tumors. That is why some bispecifics have a vascular endothelial growth factor receptor or vascular endothelial growth factor as a target.

Of course, what do we have to do to overcome these challenges? First, we have to select the optimal antigen. So knowing very well the biology of cancer and the tumor-associated antigens can really select a subgroup of epitopes that are specifically overexpressed in cancer cells. And so we need to design bispecifics according to the tumor type. Second, optimize the antibody format. So there are numerous bispecific antibody formats. We can consider the dual variable domain immunoglobulin, we specified this in our paper. The single chain variable fragments, so FC variable fragments, and the diabodies that can enhance both binding affinity and stability. And finally, the last point, combination therapies. Because bispecific antibodies targeting immune checkpoint, we have many targeting PD-1 or PD-L1 or CTLA-4, combined eventually with other immune checkpoint inhibitors. And so you may have more immunostimulating effect.

Dr. Hope Rugo: This is a fascinating field and it is certainly going to go far in the treatment of solid tumors. You know, I think there is some competition with what we have now for antibody-drug conjugates. Do you see that bispecifics will eventually become bispecific ADCs? Are we going to combine these bispecific antibodies with ADCs, with chemotherapy? What is the best combination strategy do you think looking forward?

Dr. Giuseppe Curigliano: So, yes, we have a bispecific ADC. We have actually some bispecifics that are conjugated with a payload of chemotherapy. Some others are conjugated with immunoactivation agents like IL-2. One of the most effective strategies for enhancing bispecific activity is the combination therapy. So which type of combination can we do? First, bispecific antibodies plus checkpoint inhibitors. If you combine a bispecific with an immune checkpoint, like anti-PD-1, anti-PD-L1, or anti-CTLA-4, you have more activity because you have activation of T-cells, reduction of immunosuppressive effect, and of course, the capability of this bispecific to potentiate the activity of the immune checkpoint inhibitor. So, in my opinion, in a non-small cell lung cancer with an expression of PD-L1 more than 50%, if you give pembrolizumab plus a bispecific targeting PD-L1, you can really improve both response rate and median progression-free survival.

Another combination is chemotherapy plus bispecific antibodies. Combining chemotherapy with bispecific can enhance the cytotoxic effect because chemotherapy induces immunogenic cell death, and then you boost with a bispecific in order to activate the immune system.

Bispecific and CAR T-cells, until now, we believe that these are in competition, but this is not correct. Because CAR T-cells are designed to deliver an activation of the immune system with the same lymphocytes engineered of the patients, with a long-term effect. So I really do not believe that bispecifics are in competition with CAR T-cells because when you have a complete remission induced by CAR T-cell, the effect of this complete remission can last for years. The activity of a bispecific is a little bit different. So there are some studies actually combining CAR T-cells with bispecifics. For example, bispecific antibodies can direct CAR T-cells in the tumor microenvironment, improving their specificity and enhancing their therapeutic effect.

And finally, monoclonal antibody plus bispecific is another next generation activity. Because if you use bispecific antibodies in combination with existing monoclonal antibodies like anti-HER2, you can potentially increase the immune response and enhance tumor cell targeting. In hematological malignancies, this has been already demonstrated and this approach has been particularly effective.

Dr. Hope Rugo: That's just so fascinating, the whole idea that we have these monoclonal antibodies and now we are going to add them to bispecifics that we could maybe attach on different toxins to try and improve this, or even give them with different approaches. I suppose giving an ADC with a bispecific would sort of be similar to that idea of giving a monoclonal antibody with the bispecific. So it is certainly intriguing. We also will need to understand the toxicity and cost overall and how we are going to use these, the duration of treatment, the assessment of biomarkers. There are just so many different aspects that still need to be explored.

And then with that idea, can you look ahead five or ten years from now, and tell us how you think bispecific antibodies will shape our next generation cancer therapies, how they will be incorporated into precision oncology, and the new combinations and approaches as we move forward that will help us tailor treatment for patients both with solid tumors and hematologic malignancies? Are we going to be giving these in early-stage disease in solid tumors? So far, the studies are primarily focusing on the metastatic setting, but obviously one of the goals when we have successful treatments is to move them into the early stage setting as quickly as possible.

Dr. Giuseppe Curigliano: Let us try to look ahead five years rather than ten years, to be more realistic. So, personally I believe some bispecifics can potentially replace current approaches in specifically T-cell selected population. As we gather more data from ongoing clinical trials and we adopt a deeper understanding of the tumor immuno microenvironment, of course we may have potentially new achievement. A few days ago, we heard that bispecifics in triple negative breast cancer targeting VEGF and PD-L1 demonstrated an improvement in median progression-free survival.

So, how to improve and to impact on clinical practice both in the metastatic and in the early breast cancer setting or solid tumor setting? First, personalized antigen selection. So we need to have the ability to tailor bispecific antibody therapy to the unique tumor profile of individual patients. So the more we understand the biology of cancers, the more we will be able to better target.

Second, bispecific antibodies should be combined. I can see in the future a potential trial in which you combine a bispecific anti-PD-L1 and VEGF with immune checkpoint inhibitor selected also to the level of expression of PD-L1, because integration of antibody bispecific with a range of immunotherapies, and this cannot be only immune checkpoint inhibitors, but can be CAR T-cells, oncolytic viruses, also targeted therapy, will likely be a dominant theme in the coming years. This combination will be based on the specific molecular and immuno feature of the cancer of the patient.

Then we need an enhanced delivery system. This is really important because you know now we have a next generation antibody. An example are the bicyclic. So you use FC fragment that are very short, with a low molecular weight, and this short fragment can be bispecific, so can target at the same time a target antigen and improving the immune system. And so the development of this novel delivery system, including also nanoparticles or engineered viral vectors, can enhance the penetration in the tumor bed and the bioavailability of bispecific antibodies.

Importantly, we need to reduce toxicity. Until now, bispecifics are very toxic. So the more we are efficient in delivering in the tumor bed, the more we will reduce the risk of toxicity. So it will be mandatory to reduce off-target effects and to minimize toxicity.

And finally, the expansion in new indication. So I really believe you raised an excellent point. We need to design studies in the neoadjuvant setting in order to better understand with multiple biopsies which is the effect on the tumor microenvironment and the tumor itself, and to generate hypotheses for potential trials or in the neoadjuvant setting or in those patients with residual disease.

So, in my opinion, as we refine design, optimize patient selection, and explore new combination, in the future we will have more opportunity to integrate bispecifics in the standard of care.

Dr. Hope Rugo: I think it is particularly helpful to hear what we are going to be looking for as we move forward to try and improve efficacy and reduce toxicity. And the ability to engineer these new antibodies and to more specifically target the right proteins and immune effectors is going to be critical, of course, moving forward, as well as individualizing therapy based on a specific tumor biology.

Hearing your insights has been great, and it really has opened up a whole area of insight into the field of bispecifics, together with your excellent contribution to the ASCO Educational Book. Thank you so much for sharing your thoughts and background, as well as what we might see in the future on this podcast today.

Dr. Giuseppe Curigliano: Thank you very much for the invitation and for this excellent interview.

Dr. Hope Rugo: And thanks to our listeners for joining us today. You will find a link to the Ed Book article we discussed today in the transcript of this episode. It is also, of course, on the ASCO website, as well as on PubMed. Please join us again next month on By the Book for more insightful views on the key issues and innovations that are shaping modern oncology.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Follow today's speakers:

Dr. Hope Rugo

@hope.rugo

Dr. Giuseppe Curigliano

@curijoey

Follow ASCO on social media:

@ASCO on X (formerly Twitter)

ASCO on Bluesky

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ASCO on LinkedIn

Disclosures:

Dr. Hope Rugo:

Honoraria: Mylan/Viatris, Chugai Pharma

Consulting/Advisory Role: Napo Pharmaceuticals, Sanofi, Bristol Myer

Research Funding (Inst.): OBI Pharma, Pfizer, Novartis, Lilly, Merck, Daiichi Sankyo, AstraZeneca, Gilead Sciences, Hoffman La-Roche AG/Genentech, In., Stemline Therapeutics, Ambryx

Dr. Giuseppe Curigliano:

Leadership: European Society for Medical Oncology, European Society of Breast Cancer Specialists, ESMO Open, European Society for Medical Oncology

Honoraria: Ellipses Pharma

Consulting or Advisory Role: Roche/Genentech, Pfizer, Novartis, Lilly, Foundation Medicine, Bristol-Myers Squibb, Samsung, AstraZeneca, Daiichi-Sankyo, Boerigher, GSK, Seattle Genetics, Guardant Health, Veracyte, Celcuity, Hengrui Therapeutics, Menarini, Merck, Exact Sciences, Blueprint Medicines, Gilead Sciences

Speakers' Bureau: Roche/Genentech, Novartis, Pfizer, Lilly, Foundation Medicine, Samsung, Daiichi Sankyo, Seagen, Menarini, Gilead Sciences, Exact Sciences

Research Funding: Merck

Travel, Accommodations, Expenses: Roche/Genentech, Pfizer, Daiichi Sankyo, AstraZeneca

View Details

Dr. Pedro Barata and Dr. Rana McKay discuss the integration of innovative advances in molecular imaging and therapeutics to personalize treatment for patients with renal cell and urothelial carcinomas.

TRANSCRIPT

Dr. Pedro Barata: Hello, I'm Dr. Pedro Barata, your guest host of By the Book, a podcast series featuring insightful conversations between authors and editors of the ASCO Educational Book. I'm a medical oncologist at University Hospitals Seidman Cancer Center and an associate professor of medicine at Case Western Reserve University in Cleveland, Ohio. I'm also an associate editor of the ASCO Educational Book.

Now, we all know the field of genitourinary cancers (GU) is evolving quite rapidly, and we have new innovations in molecular imaging as well as targeted therapeutics. Today's episode will be exploring novel approaches that are transforming the management of renal cell and urothelial carcinomas and also their potential to offer a more personalized treatment to patients.

For that, joining for today's discussion is Dr. Rana McKay, a GU medical oncologist and professor at University of California San Diego. Dr. McKay will discuss her recently published article titled, "Emerging Paradigms in Genitourinary Cancers: Integrating Molecular Imaging, Hypoxia-Inducible Factor-Targeted Therapies, and Antibody-Drug Conjugates in Renal Cell and Urothelial Carcinomas."

Our full disclosures are available in the transcript of this episode.

And with that, Rana McKay, great to have you on the podcast today.

Dr. Rana McKay: Oh, thank you so much, Dr. Barata. It's really wonderful to be here with you. So, thanks for hosting.

Dr. Pedro Barata: No, thanks for taking the time, and I'm looking forward to this conversation. And by the way, let me start by saying congrats on a great article in the Educational Book. Really super helpful paper. I'm recommending it to a lot of the residents and fellows at my own institution.

I would like to first ask you to kind of give our listeners some context of how novel approaches in the molecular imaging as well as targeted therapeutics are actually changing the way we're managing patients with GU, but specifically with renal cell carcinoma and urothelial carcinoma. So, what are the areas you would call out as like being big areas for innovation in this context, and why are they important?

Dr. Rana McKay: Very good question. And I think this is really what this article highlights. It highlights where are we going from an imaging diagnostics standpoint? Where are we going from a therapeutic standpoint? And I think if we have to step back, from the standpoint of diagnostics, we've seen PET imaging really transform diagnostics in prostate cancer with the advent of PSMA PET imaging, and now PSMA PET imaging is used as a biomarker for selection for theranostics therapy.

And so, we're starting to see that enter into the RCC landscape, enter into the urothelial cancer landscape to a lesser extent. And I think it's going to potentially be transformative as these tools get more refined. I think when we think about therapeutics, what's been transformative most recently in the renal cell carcinoma landscape has been the advent of HIF2α inhibition to improve outcomes for patients. And we have seen the approval of belzutifan most recently that has reshaped the landscape. And now there's other HIF2α inhibitors that are being developed that are going to be further important as they get refined.

And lastly, I think when we think about urothelial carcinoma, the greatest transformation to treatment in that context has been the displacement of cisplatin and platinum-based chemotherapy as a frontline standard with the combination of enfortumab vedotin plus pembrolizumab. And we've seen antibody-drug conjugates really reshape treatment and tremendously improve outcomes for patients. So, I think those are the three key areas of interest.

Dr. Pedro Barata: So with that, let's focus first on the imaging and then we'll get to the therapeutic area. So, we know there's been a paradigm shift, really, when prostate-specific targets emerged as tracers for PET scanning. And so, we now commonly use prostate-specific membrane antigen, or PSMA-based PET scanning, and really transform how we manage prostate cancer. Now, it appears that we're kind of seeing a similar wave in renal cell carcinoma with the new radiotracer against the target carbonic anhydrase IX. What can you tell us about this? And is this going to be available to us anytime soon? And how do you think that might potentially change the way we're managing patients with RCC today?

Dr. Rana McKay: First, I'll step back and say that in the context of PSMA PET imaging, we have actually been able to better understand RCC as well. So, we know that PSMA is expressed in the neovasculature of tumors, and it can actually be used to detect renal cell carcinoma tumors. It has a detection rate of about 84% when used for detection. And so, you know, I don't think it's just restricted to carbonic anhydrase IX, but we will talk about that. So, PSMA expressed in the neovasculature has a detection rate of around 84%, particularly if we're looking at clear cell RCC.

CAlX is overexpressed in clear cell RCC, and it's actually used in diagnosing renal cell carcinoma when we think of CAlX IHC for diagnosing clear cell RCC. And now there are CAlX PET tracers. The first foray was with the ZIRCON study that was actually an interestingly designed study because it was designed to detect the likelihood of PET imaging to identify clear cell RCC. So, it was actually used in the early diagnostics setting when somebody presents with a renal mass to discriminate that renal mass from a clear cell versus a non-clear cell, and it was a positive study.

But when I think about the potential application for these agents, you know, I think about the entire landscape of renal cell carcinoma. This is a disease that we do treat with metastasis-directed therapy. We have certainly seen patients who've undergone metastasectomy have long, durable remissions from such an approach. And I think if we can detect very early onset oligometastatic disease where a metastasis-directed therapy or SABR could be introduced - obviously tested in a trial to demonstrate its efficacy - I think it could potentially be transformative.

Dr. Pedro Barata: Wonderful. It's a great summary, and I should highlight you are involved in some of those ongoing studies testing the performance of this specific PET scanning for RCC against conventional imaging, right? And to remind the listeners, thus far, for the most part, we don't really do FDG-PET for RCC. There are some specific cases we do, but in general, they're not a standard scanning. But maybe that will change in the future. Maybe RCC will have their own PSMA-PET. And to your point, there's also emerging data about the role of PSMA-PET scanning in RCC as well, as you very elegantly summarized. Wonderful.

So, let me shift gears a little bit because you did, in your introduction, you did highlight a novel MOA that we have in renal cell carcinoma, approved for use, initially for VHL disease, and after that for sporadic clear cell renal cell carcinoma. We're talking about hypoxia-inducible factor 2-alpha inhibitors, or HIF2α inhibitors, such as belzutifan. But there's also others coming up.

So, as a way to kind of summarize that, what can you tell us about this breakthrough in terms of therapeutic class, this MOA that got to our toolbox of options for patients with advanced RCC? Tell us a little bit what is being utilized currently in the management of advanced RCC. And where do you see the future going, as far as, is it moving early on? Is it getting monotherapy versus combinations? Maybe other therapies? What are your thoughts about that? What can you tell us about it?

Dr. Rana McKay: Belzutifan is a first-in-class HIF2α inhibitor that really established clinical validation for HIF2α as a therapeutic target. When we think about the activity of this agent, the pivotal LITESPARK-005 trial really led to the approval of belzutifan in patients who were really heavily pretreated. It was patients who had received prior IO therapy, patients who had received prior VEGF-targeted therapy. And in the context of this study, we saw a median PFS of 5.6 months, and there did seem to be a tail on the curve when you looked at the 12-month PFS rate with belzutifan. It was 33.7% compared to 17.6% with everolimus. And then when we look at the response rate, it was higher with belzutifan on the order of 22-23%, and very low with everolimus, as we've previously seen.

I think one of the Achilles heels of this regimen is the primary PD rate, which was 34% when used in later line. There are multiple studies that are testing belzutifan in combination across the treatment landscape. So, we have LITESPARK-011, which is looking at the combination of belzutifan plus lenvatinib in the second-line setting. We've got the MK-012 [LITESPARK-012] study, which is looking at belzutifan in various combinations in the frontline setting. So there is a combination with IO plus belzutifan. And so this is also being looked at in that context. And then we also have the LITESPARK-022 study, which is looking at pembrolizumab with belzutifan in the adjuvant setting. So there's a series of studies that will be exploring belzutifan really across the treatment landscape. Many of these studies in combination.

Additionally, there are other HIF2α inhibitors that are being developed. We have casdatifan, which is another very potent HIF2α inhibitor. You know, I think pharmacologically, these are different agents. There's a different half-life, different dosing. What is going to be the recommended phase 3 dose for both agents, the EPO suppression levels, the degree of EPO suppression, and sustainability of EPO suppression is very different. So, I think we've seen data from casdatifan from the ARC-20 trial from monotherapy with a respectable response rate, over 30%, primary PD rate hovering just around 10%.

And then we've also seen data of the combination of casdatifan with cabozantinib as well that were recently presented this year. And that agent is also being tested across the spectrum of RCC. It's being looked at in combination with cabozantinib in the PEAK-1 study, and actually just at the KCRS (Kidney Cancer Research Summit), we saw the unveiling of the eVOLVE-RCC trial, which is going to be looking at a volrustomig, which is a PD-1/CTLA-4 inhibitor plus casdatifan compared to nivo-ipi in the frontline setting.

So, we're going to see some competition in this space of the HIF2α inhibitors. I think when we think of mechanism of action in that these are very potent, not a lot of off-target activity, and they target a driver mutation in the disease. And that driver mutation happens very early in the pathogenesis. These are going to be positioned much earlier in the treatment landscape.

Dr. Pedro Barata: All these studies, as you're saying, look really promising. And when we talk about them, you mentioned a lot of combinations. And to me, when I think of these agents, it makes a lot of sense to combine because there's not a lot of overlapping toxicities, if you will. But perhaps for some of our listeners, who have not used HIF2α inhibitors in practice yet, and they might be thinking about that, what can you tell us about the safety profile? How do you present it to your patients, and how do you handle things like hypoxia or anemia? How do you walk through the safety profile and tolerability profile of those agents like belzutifan?

Dr. Rana McKay: I think these drugs are very different than your traditional TKIs, and they don't cause the classic symptoms that are associated with traditional TKIs that many of us are very familiar with like the rash, hand-foot syndrome, hypertension, diarrhea. And honestly, these are very nuanced symptoms that patients really struggle with the chronicity of being on a chronic daily TKI. The three key side effects that I warn patients about with HIF2α inhibitors are: (1) fatigue; (2) anemia; and (3) hypoxia and dysregulation in the ability to sense oxygen levels.

And so, many of these side effects - actually, all of them - are very dose-dependent. They can be very well-managed. So, we can start off with the anemia. I think it's critically important before you even start somebody on belzutifan that you are optimizing their hemoglobin and bone marrow function. Make sure they don't have an underlying iron deficiency anemia. Make sure they don't have B12 or folate deficiency. Check for these parameters. Many patients who have kidney cancer may have some hematuria, other things where there could be some low-level blood loss. So, make sure that those are resolved or you're at least addressing them and supplementing people appropriately.

I monitor anemia very closely every 3 to 4 weeks, at least, when people start on these medications. And I do initiate EPO, erythropoietin, should the anemia start to worsen. And I typically use a threshold of around 10g/dL for implementing utilization of an EPO agent, and that's been done very safely in the context of the early studies and phase 3 studies as well.

Now, with regards to the hypoxia, I think it's also important to make sure that you're selecting the appropriate individual for this treatment. People who have underlying COPD, or even those individuals who have just a very high burden of disease in their lung, lymphangitic spread, pleural effusions, maybe they're already on oxygen - that's not an ideal candidate for belzutifan. Something that very easily can be done in the clinic before you think about initiating somebody on this treatment, and has certainly been integrated into some of the trials, is just a 6-minute walk test. You know, have the patient walk around the clinic with one of the MAs, one of the nurses, put the O2 sat on [measuring oxygen saturation], make sure they're doing okay. But these side effects, like I said, are very dose-dependent. Typically, if a patient requires, if the symptoms are severe, the therapy can be discontinued and dose reduced. The standing dose is 120 mg daily, and there's two dose reductions to 80 mg and 40 mg should somebody warrant that dose modification.

Dr. Pedro Barata: This is relatively new, right? Like, it was not that we're used to checking oxygen levels, right? In general, we're treating these patients, so I certainly think there's a learning curve there, and some of the points that you highlight are truly critical. And I do share many of those as well in our practice.

Since I have you, I want to make sure we touch base on antibody-drug conjugates as well. It's also been a hot area, a lot of developments there. When I think of urothelial carcinoma and renal cell carcinoma, I see it a little bit different. I think perhaps in urothelial carcinoma, antibody-drug conjugates, or ADCs, are somewhat established already. You already mentioned enfortumab vedotin. I might ask you to expand a little bit on that. And then in renal cell carcinoma, we have some ADCs as well that you include in your chapter, and that I would like you to tell us what's coming from that perspective. So, tell us a little bit about how do you see ADCs in general for GU tumors, particularly UC and RCC? Tell us a little bit about the complexity or perhaps the challenges you still see. At the same time, tell us about the successes.

Dr. Rana McKay: Stepping back, let's just talk about like the principles and design of ADCs. So, most ADCs have three components. There's a monoclonal antibody that typically targets a cell surface antigen, which is conjugated by a linker, which is the second component, to a payload drug. And typically, that payload drug has been chemotherapy, whether it be topoisomerase or whether it be MMAE or other chemotherapeutic.

We can start in the RCC space. There's been multiple antibody-drug conjugates that have been tested. There's antibody-drug conjugates to CD70, which is expressed on clear cell RCC. There's been antibody-drug conjugates to ENPP3, which is also expressed on RCC. There's antibody-drug conjugates to CDH6. And they have different payloads, like I said, whether it be topoisomerase I or other microtubule inhibitors.

Now, when we think about kidney cancer, we don't treat this disease with chemotherapy. This disease is treated with immunotherapy. It is treated with treatments that target the VEGF pathway and historically has not been sensitive to chemo. So, I think even though the targets have been very exciting, we've seen very underwhelming data regarding activity, and in some context, seen increased toxicity with the ADCs. So, I think we need to tread lightly in the context of the integration and the testing of ADCs in RCC.

We just came back from the KCRS meeting, and there was some very intriguing data about a c-Kit ADC that's being developed for chromophobe RCC, which is, you know, a huge unmet need, these variant tumors that really lack appropriate therapeutics. But I just caution us to tread lightly around how can we optimize the payload to make sure that the tumor that we're treating is actually sensitive to the agent that's targeting the cell kill. So, that's a little bit on the ADCs in RCC. I still think we have a long way to go and still in early testing.

Now, ADCs for UC are now the standard of care. I think the prototypical agent, enfortumab vedotin, is a nectin-4-directed ADC that's conjugated to an MMAE payload and was the first ADC approved for advanced urothelial, received accelerated approval following the EV-201 trial, which was basically a multicenter, single-arm study that was investigating EV in cisplatin-ineligible patients with advanced urothelial carcinoma, and then ultimately confirmed in the EV-301 study as well. And so, that study ended up demonstrating the support superiority of EV from an overall survival standpoint, even PFS standpoint. Building on that backbone is the EV-302 study, which tested EV in combination with pembrolizumab versus platinum-based chemotherapy in the frontline setting. And that was a pivotal, landmark study that, like I said, has displaced platinum therapy as a frontline treatment for people with advanced urothelial carcinoma. And when we think about that study and the median overall survival and just how far we've come in urothelial cancer, the median OS with EV-pembro from that trial was 31 and a half months. I mean, that's just incredible. The control arm survival was 16 and a half months. The hazard ratio for OS, 0.47. I mean this is why when this data was presented, it was literally a standing ovation that lasted for several minutes because we just haven't seen data that have looked that good.

And there are other antibody-drug conjugates that are being tested. We've all been involved in the saga with sacituzumab govitecan, which is a trophoblast cell surface antigen 2 (Trop-2) targeted ADC with a topoisomerase I payload. It was the second ADC to receive approval, but then that approval was subsequently withdrawn when the confirmatory phase 3 was negative, the TROPiCS-04 trial. So, approval was granted based off of the TROPHY-U-01, single-arm, phase 2 study, demonstrating a response rate of around 28% and a PFS of, you know, about 5 and a half months. But then failure to show any benefit from an OS standpoint. And I think there's a lot of controversy in the field around whether this agent still has a role in advanced urothelial carcinoma. And I think particularly for individuals who do not have molecular targets, like they're not HER2-amplified or have HER2-positivity or FGFR or other things like that.

Dr. Pedro Barata: Fantastic summary, Rana. You were talking about the EV, and it came to mind that it might not be over, right, for the number of ADCs we use in clinical practice in the near future. I mean, we've seen very promising data for ADC against the HER2, right, and over-expression. It also can create some challenges, right, in the clinics because we're asking to test for HER2 expression. It's almost like, it's not exactly the same to do it in breast cancer, but it looks one more time that we're a little bit behind the breast cancer field in a lot of angles. And also has vedotin as a payload. Of course, I'm referring to disitamab vedotin, and there's very elegant data described by you in your review chapter as well. And it's going to be very interesting to see how we sequence the different ADCs, to your point as well.

So, before we wrap it up, I just want to give you the opportunity to tell us if there's any area that we have not touched, any take-home points you'd like to bring up for our listeners before we call it a day.

Dr. Rana McKay: Thank you so much. I have to say, you know, I was so excited at ASCO this year looking at the GU program. It was fantastic to see the progress being made, novel therapeutics that really there's a tremendous excitement about, not just in RCC and in UC, but also in prostate cancer, thinking about the integration of therapies, not just for people with refractory disease that, even though our goal is to improve survival, our likelihood of cure is low, but also thinking about how do we integrate these therapies early in the treatment landscape to enhance cure rates for patients, which is just really spectacular. We're seeing many of these agents move into the perioperative setting or in combination with radiation for localized disease. And then the special symposium on biomarkers, I mean, we've really come a long, long way. And I think that we're going to continue to evolve over the next several years. I'm super excited about where the field is going in the treatment of genitourinary malignancies.

Dr. Pedro Barata: Oh, absolutely true. And I would say within the Annual Meeting, we have outstanding Educational Sessions. And just a reminder to the listeners that actually that's where the different teams or topics for the Educational Book chapters come from, from actually the educational sessions from ASCO. And your fantastic chapter is an example of that, right, focusing on advanced GU tumors. So, thank you so much, Rana, for taking the time, sharing your insights with us today on the podcast. It was a fantastic conversation as always.

Dr. Rana McKay: My pleasure. Thanks so much for having me, Dr. Barata.

Dr. Pedro Barata: Of course.

And thank you to our listeners for your time today. You will find the link to the article discussed today in the transcript of this episode. I also encourage you to check out the 2025 ASCO Educational Book. You'll find an incredible wealth of information there. It's free, available online, and you'll find, hopefully, super, super important information on the key science and issues that are shaping modern oncology, as we've heard from Dr. McKay and many other outstanding authors. So, thank you, everyone, and I hope to see you soon.

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Disclosures:

Dr. Pedro Barata:

Stock and Other Ownership Interests: Luminate Medical

Honoraria: UroToday

Consulting or Advisory Role: Bayer, BMS, Pfizer, EMD Serono, Eisai, Caris Life Sciences, AstraZeneca, Exelixis, AVEO, Merck, Ipson, Astellas Medivation, Novartis, Dendreon

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Dr. Rana McKay:

Consulting or Advisory Role: Janssen, Novartis, Tempus, Pfizer, Astellas Medivation, Dendreon, Bayer, Sanofi, Vividion, Calithera, Caris Life Sciences, Sorrento Therapeutics, AVEO, Seattle Genetics, Telix, Eli Lilly, Blue Earth Diagnostics, Ambrx, Sumitomo Pharma Oncology, Esiai, NeoMorph, Arcus Biosciences, Daiichi Sankyo, Exelixis, Bristol Myers Squibb, Merck, Astrazeneca, Myovant

Research Funding (Inst.): Bayer, Tempus, AstraZeneca, Exelixis, Bristol Myers Squibb, Oncternal Therapeutics, Artera

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Dr. Hope Rugo and Dr. Kamaria Lee discuss the prevalence of financial toxicity in cancer care in the United States and globally, focusing on breast cancer, and highlight key interventions to mitigate financial hardship.

TRANSCRIPT

Dr. Hope Rugo: Hello, and welcome to By the Book, a podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I'm your host, Dr. Hope Rugo. I'm the director of the Women's Cancer Program and division chief of breast medical oncology at the City of Hope Cancer Center, and I'm also the editor-in-chief of the Educational Book.

Rising healthcare costs are causing financial distress for patients and their families across the globe. Patients with cancer report financial toxicity as a major impediment to their quality of life, and its association with worse outcomes is well documented. Today, we'll be discussing how patients with breast cancer are uniquely at risk for financial toxicity. Joining me for this discussion is Dr. Kamaria Lee, a fourth-year radiation oncology resident and health equity researcher at MD Anderson Cancer Center and a co-author of the recently published article titled, "Financial Toxicity in Breast Cancer: Why Does It Matter, Who Is at Risk, and How Do We Intervene?"

Our full disclosures are available in the transcript of this episode.

Dr. Lee, it's great to have you on this podcast.

Dr. Kamaria Lee: Hey, Dr. Rugo. Thank you so much for having me. I'm excited to be here today. I also would like to recognize my co-authors, Dr. Alexandru Eniu, Dr. Christopher Booth, Molly MacDonald, and Dr. Fumiko Chino, who worked on this book chapter with me and did a fantastic presentation on the topic at ASCO this past year.

Dr. Hope Rugo: Thanks very much. We'll now just jump into the questions. We know that rising medical costs contribute to a growing financial burden on patients, which has [GC1] [JG2] been documented to contribute to lower quality-of-life, compromised clinical care, and worse health outcomes. How are patients with breast cancer uniquely at risk for financial toxicity? How does the problem vary within the breast cancer population in terms of age, racial and ethnic groups, and those who have metastatic disease?

Dr. Kamaria Lee: Breast cancer patients are uniquely at risk of financial toxicity for several reasons. Three key reasons are that breast cancer often requires multimodal treatment. So this means patients are receiving surgery, many receive systemic therapies, including hormonal therapies, as well as radiation. And so this requires care coordination and multiple visits that can increase costs.

Secondly, another key reason that patients with breast cancer are uniquely at risk for financial toxicity is that there's often a long survivorship period that includes long-term care for toxicities and continued follow-ups, and patients might also be involved in activities regarding advocacy, but also physical therapy and mental health appointments during their prolonged survivorship, which can also add costs.

And a third key reason that patients with breast cancer are uniquely at risk for financial toxicity is that the patient population is primarily women. And we know that women are more likely to have increased caregiver responsibilities while also potentially working and managing their treatments, and so this is another contributor.

Within the breast cancer population, those who are younger and those who are from marginalized racial/ethnic groups and those with metastatic disease have been shown to be at an increased risk. Those who are younger may be more likely to need childcare during treatment if they have kids, or they're more likely to be employed and not yet retired, which can be disrupted while receiving treatment. And those who are racial/ethnic minorities may have increased financial toxicity due to reasons that exist even after controlling for socioeconomic factors. And some of these reasons have been shown to be increased risk of job or income loss or transportation barriers during treatment. And lastly, for those with metastatic breast cancer, there can be ongoing financial distress due to the long-term care that is needed for treatment, and this can include parking, transportation, and medications while managing their metastatic disease.

Dr. Hope Rugo: I think it is really important to understand these issues as you just outlined. There has been a lot of focus on financial toxicity research in recent years, and that has led to novel approaches in screening for financial hardship. Can you tell us about the new screening tools and interventions and how you can easily apply that to clinical practice, keeping in mind that people aren't at MD Anderson with a bunch of support and information on this but are in clinical practice and seeing many, many patients a day with lots of different cancers?

Dr. Kamaria Lee: You're exactly right that there is incredible nuance needed in understanding how to best screen for financial hardship in different types of practices. There are multiple financial toxicity tools. The most commonly used tool is the Comprehensive Score for Financial Toxicity, also known as the COST tool. In its full form, it's an 11-item survey. There's also a summary question as well. And these questions look at objective and subjective financial burden, and it uses a five-point Likert scale. For example, one question on the full form is, "I know that I have enough money in savings, retirement, or assets to cover the cost of my treatment," and then patients are able to respond "not at all" to "very much" with a threshold score for financial toxicity risk.

Of course, as you noted, one critique of having an 11-item survey is that there's limited time in patient encounters with their providers. And so recently, Thom et al validated an abbreviated two-question version of the COST tool. This validation was done in an urban comprehensive cancer center, and it was found to have a high predictive value to the full measure. We note which two questions are specifically pulled from the full measure within the book chapter. And this is one way that it can be easier for clinicians who are in a busier setting to still screen for financial toxicity with fewer questions.

I also do recommend that clinicians who know their clinic's workflow the best, work with their team of nurses, financial navigators, and others to best integrate the tool into their workflow. For some, this may mean sending the two-item survey as a portal message so that patients can answer it before consults. Other times, it could mean having it on the tablet that can be done in the clinic waiting room. And so there are different ways that screening can be done, even in a busy setting, and acknowledging that different practices have different amounts of resources and time.

Dr. Hope Rugo: And where would people access that easily? I recognize that that information is in your chapter, or your article that's on PubMed that will be linked to this podcast, but it is nice to just know where people could easily access that online.

Dr. Kamaria Lee: Yes, and so you should be able to Google 'the COST measure', and then there is a website that also has the forms as well. So it's also beyond the book chapter, Googling 'the COST measure', and then online they would be able to find access to the form.

Dr. Hope Rugo: And how often would you do that screening?

Dr. Kamaria Lee: So, I think it's definitely important that we are as proactive as possible. And so initially, I recommend that the screening happens at the time of diagnosis, and so if it's done through the portal, it can be sent before the initial consult, or again, however, is best in the workflow. So at the time of diagnosis and then at regular intervals, so throughout the treatment process, but then also into the follow-up period as well to best understand if there's still a financial burden even after the treatments have been completed.

Dr. Hope Rugo: I wonder if in the metastatic setting, you could do it at the change of treatment, you know, a month after somebody's changed treatment, because people may not be as aware of the financial constraints when they first get prescribed a drug. It's more when you hear back from how much it's going to cost. And leading into that, I think it's, what do you do with this? So, you know, this cost conversation is really important. You're going to be talking to the patient about the cost considerations when you, for example, see that there are financial issues, you're prescribing treatments. How do we implement impactful structured cost conversations with our breast cancer patients, help identify financial issues, and intervene? How do we intervene? I mean, as physicians often we aren't really all that aware, or providers, of how to address the cost.

Dr. Kamaria Lee: Yes, I agree fully that another key time when to screen for financial toxicity is at that transition between treatments to best understand where they're at based off of what they've received previously for care, and then to anticipate needs when changing regimens, such as like you said in the metastatic setting. As we're collecting this information, you're right, we screen, we get this information, and what do we do? I do agree that there is a lack of knowledge among us clinicians of how do we manage this information. What is insurance? How do we manage insurance and help patients with insurance concerns? How do we help them navigate out-of-pocket costs or even the indirect costs of transportation? Those are a lot of things that are not covered in-depth in traditional medical training. And so it can be overwhelming for a lot of clinicians, not only due to time limitations in clinic, but also just having those conversations within their visit.

And so what I would say, a key thing to note, is that this is another area for multidisciplinary care. So just as we're treating patients in a multidisciplinary way within oncology as we work with our medical oncology, surgical colleagues across the board, it's knowing that this is another area for multidisciplinary care. So the team members include all of the different oncologists, but it also includes team members such as financial counselors and navigators and social workers and even understanding nonprofit partners who we have who have money that can be set aside to help reduce costs for certain different aspects of treatment.

Another thing I will note is that most patients with breast cancer often say they do want to have these conversations still with their clinicians. So they do still see a clinician as someone that can weigh in on the costs of their treatment or can weigh in on this other aspect of their care, even if it's not the actual medication or the radiation. And so patients do desire to hear from their clinicians about this topic, and so I think another way to make it feel less overwhelming for clinicians like ourselves is to know that even small conversations are helpful and then being knowledgeable about within your institution or, like I said, outside of it with nonprofits, being aware of who can I refer this patient to for continued follow-up and for more detailed information and resources.

Dr. Hope Rugo: Are those the successful interventions? It's really referring to financial navigators? How do people identify? You know, in an academic center, we often will sort of punt this to social workers or our nurse navigators. What about in the community? What's a successful intervention example of mitigating financial toxicity?

Dr. Kamaria Lee: I agree completely that the context at which people are practicing is important to note. So as you alluded to, in some bigger systems, we do have financial navigators and this has been seen to be successful in providing applications and assisting with applications for things such as pharmaceutical assistance, insurance applications, discount opportunities.

Another successful intervention are financial toxicity tumor boards, which I acknowledge might not be able to exist everywhere. But where this is possible, multidisciplinary tumor boards that include both doctors and nurses and social workers and any other members of the care team have been able to effectively decrease patients' personal spending on care costs and decrease co-pays through having a dedicated time to discuss concerns as they arise or even proactively.

Otherwise, I think in the community, there are other interventions in regards to understanding different aspects of government programs that might be available for patients that are not, you know, limited to an institution, but that are more nationally available, and then again, also having the nonprofit, you know, partnerships to see other resources that patients can have access to.

And then I would also say that the indirect costs are a significant burden for many patients. So by that, I mean even parking costs, transportation, childcare. And so even though those aren't interventions necessarily with someone who is a financial navigator, I would recommend that even if it's a community practice, they discuss ways that they can help offset those indirect costs with patients with parking or if there are ways to help offset transportation costs or at least educate patients on other centers that may be closer to them or they can still receive wonderful care, and then also making sure that patients are able to even have appointments scheduled in ways that are easier for them financially.

So even if someone's receiving care out in the community where there's not a financial navigator, as clinicians or our scheduling teams, sometimes there are options to make sure if a patient wants, visits are more so on one day than throughout the week or many hours apart that can really cause loss of income due to missed work. And so there are also kind of more nuanced interventions that can happen even without a financial navigation system in place.

Dr. Hope Rugo: I think that those are really good points and it is interesting when you think about financial toxicity. I mean, we worry a lot when patients can't take the drugs because they can't afford them, but there are obviously many other non-treatment, direct treatment-related issues that come up like the parking, childcare, tolls, you know, having a working car, all those kinds of things, and the unexpected things like school is out or something like that that really play a big role where they don't have alternatives.

And I think that if we think about just drug costs, I think those are a big issue in the global setting. And your article did address financial toxicity in the global setting. International financial toxicity rates range from 25% of patients with breast cancer in high-income countries to nearly 80% in low- and middle-income countries or LMICs. You had cited a recent meta-analysis of the global burnout from cancer, and that article found that over half of patients faced catastrophic health expenditures. And of course, I travel internationally and have a lot of colleagues who are working in oncology in many countries, and it is really often kind of shocking from our perspective to see what people can get coverage for and how much they have to pay out-of-pocket and how much that changes, that causes a lot of disparity in access to healthcare options, even those that improve survival. Can you comment on the global impact of this problem?

Dr. Kamaria Lee: I am glad that you brought this up for discussion as well. Financial toxicity is something that is a significant global issue. As you mentioned, as high as 80% of patients with breast cancer in low- and middle-income countries have had significant financial toxicity. And it's particularly notable that even when looking at breast cancer compared to other malignancies around the world, the burden appears to be worse. This has been seen even in countries with free universal healthcare. One example is Sri Lanka, where they saw high financial toxicity for their patients with breast cancer, even with this free universal healthcare. But there were also those travel costs and just additional out-of-hospital tests that were not covered. Also, literature in low- and middle-income countries shows that patients might also be borrowing money from their social networks, so from their family and their friends, to help cover their treatment costs, and in some cases, people are making daily food compromises to help offset the cost of their care. So there is a really large burden of financial toxicity generally for cancer globally, but also specifically in breast cancer, it warrants specific discussion.

In the meta-analysis that you mentioned, they identified key risk factors of financial toxicity globally that included people who had a larger family size, a lower income, a lack of insurance, longer disease duration, so again, the accumulation of visits and costs and co-pay over time, and those who had multiple treatments. And so in the global setting, there is this significant burden, but then I will also note that there is a lack of literature in low-income countries on financial toxicity. So where we suspect that there is a higher burden and where we need to better understand how it's distributed and what interventions can be applied, especially culturally specific interventions for each country and community, there's less research on this topic. So there is definitely an increased need for research in financial toxicity, particularly in the global setting.

Dr. Hope Rugo: Yes, and I think that goes on to how we hope that financial toxicity researchers will have approaches to large-scale multi-institutional interventions to improve financial toxicity. I think this is an enormous challenge, but one of the SWOG organizations has done some great work in this area, and a randomized trial addressing cancer-related financial hardship through the delivery of a proactive financial navigation intervention is one area that SWOG has focused on, which I think is really interesting. Of course, that's going to be US-based, which is how we might find our best paths starting. Do you think that's a good path forward, maybe that being able to provide something like that across institutions that are independent of being a cancer only academic center, or more general academic center, or a community practice? You know, is finding ways to help patients with breast cancer and their families understand and better manage financial aspects of cancer care on a national basis the next approach?

Dr. Kamaria Lee: Yes, I agree that that is a good approach, and I think the proactive component is also key. We know that patients that are coming to us with any cancer, but including breast cancer, some of them have already experienced a financial burden or have recently had a job loss before even coming to us and having the added distress of our direct costs and our indirect costs. So I think being proactive when they come to us in regards to the additional burden that their cancer treatments may cause is key to try to get ahead of things as much as we can, knowing that even before they've seen us, there might be many financial concerns that they've been navigating.

I think at the national level, that allows us to try to understand things at what might be a higher level of evidence and make sure that we're able to address this for a diverse cohort of patients. I know that sometimes the enrollment can be challenging at the national level when looking at financial toxicity, as then we're involving many different types of financial navigation partners and programs, and so that can maybe make it more complex to understand the best approaches, but I think that it can be done and can really bring our understanding of important financial toxicity interventions to the next level. And then the benefit to families with the proactive component is just allowing them to feel more informed, which can help decrease anticipation, anxiety related to anticipation, and allow them to help plan things moving forward for themselves and for the whole family.

Dr. Hope Rugo: Those are really good points and I wonder, I was just thinking as you were talking, that having some kind of a process where you could attach to the electronic health record, you could click on the financial toxicity survey questions that somebody filled out, and then there would be a drop-down menu for interventions or connecting you to people within your clinic or even more broadly that would be potential approaches to manage that toxicity issue so that it doesn't impact care, you know, that people aren't going to decide not to take their medication or not to come in or not to get their labs because of the cost or the transportation or the home care issues that often are a big problem, even parking, as you pointed out, at the cancer center. And actually, we had a philanthropic donor when I was at UCSF who donated a large sum of money for patient assistance, and it was interesting to then have these sequential meetings with all the stakeholders to try and decide how you would use that money. You need a big program, you need to have a way of assessing the things you can intervene with, which is really tough.

In that general vein, you know, what are the governmental, institutional, and provider-level actions that are required to help clinicians do our best to do no financial harm, given the fact that we're prescribing really expensive drugs that require a lot of visits when caring for our patients with breast cancer in the curative and in the metastatic setting?

Dr. Kamaria Lee: At the governmental level, there are patient assistant programs that do exist, and I think that those can continue and can become more robust. But I also think one element of those is oftentimes the programs that we have at the government level or even institutional levels might have a lot of paperwork or be harder for people with lower literacy levels to complete. And so I think the government can really try to make sure that the paperwork that is given, within reason, with all the information they need, but that the paperwork can be minimized and that there can be clear instructions, as well as increased health insurance options and, you know, medical debt forgiveness as more broad just overall interventions that are needed.

I think additionally, institutions that have clinical trials can help ensure that enrollment can be at geographically diverse locations. Some trials do reimburse for travel costs, of course, but sometimes then patients need the reimbursement sooner than it comes. And so I think there's also those considerations of more so upfront funds for patients involved in clinical trials if they're going to have to travel far to be enrolled in that type of care or trying to, again, make clinical trials more available at diverse locations.

I would also say that it's important that those who design clinical trials use what is known as the "Common Sense Oncology" approach of making sure that they're designed in minimizing the use of outcomes that might have a smaller clinical benefit but may have a high financial toxicity. And that also goes to what providers can do, of understanding what's most important to a particular patient in front of them, what outcomes and what benefit, or you know, how many additional months of progression-free survival or things like that might be important to a particular patient and then also educating them and discussing what the associated financial burden is just so that they have the full picture as they make an informed decision.

Dr. Hope Rugo: As much as we know. I mean, I think that that's one of the big challenges is that as we prescribe these expensive drugs and often require multiple visits, even, you know, really outside of the clinical trial setting, trying to balance the benefit versus the financial toxicity can be a huge challenge. And that's a big area, I think, that we still need help with, you know. As we have more drugs approved in the early-stage setting and treatments that could be expensive, oral medications, for example, in our Medicare population where the share of cost may be substantial upfront, you know, with an upfront cost, how do we balance the benefits versus the risk? And I think you make an important point that discussing this individually with patients after we found out what the cost is. I think warning patients about the potential for large out-of-pocket cost and asking them to contact us when they know is one way around this. You know, patients feeling like they're sort of out there with a prescription, a recommendation from their doctor, they're scared of their cancer, and they have this huge share of cost that we didn't know about. That's one challenge, and I don't know if there's any suggestions you have about how one should approach that communication with the patient.

Dr. Kamaria Lee: Yes, I think part of it is truly looking at each patient as an individual and asking how much they want to know, right? So we all know that patients, some who want more information, some want less, and so I think one way to approach that is asking them about how much information do they want to know, what is most helpful to them. And then also, knowing that if you're in a well-resourced setting that does have the social workers and financial navigators, also making sure it's integrated in the multidisciplinary setting and so that they know who they can go to for what, but also know that as a clinician, you're always happy for them to bring up their concerns and that if it's something that you're not aware of, that you will connect them to the correct multidisciplinary team members who can accurately provide that additional information.

Dr. Hope Rugo: Do you have any other additional comments that you'd like to mention that we haven't covered? I think the idea of a financial toxicity screen with two questions that could be implemented at change of therapy or just periodically throughout the course of treatment would be a really great thing, but I think we do need as much information on potential interventions as possible because that's really what challenges people. It's like finding out information that you can't handle. Your article provides a lot of strategies there, which I think are great and can be discussed on a practice and institutional level and applied.

Dr. Kamaria Lee: Yeah, I would just like to thank you for the opportunity to discuss such an important topic within oncology and specifically for our patients with breast cancer. I agree that it can feel overwhelming, both for clinicians and patients, to navigate this topic that many of us are not as familiar with, but I would just say that the area of financial toxicity is continuing to evolve as we gather more information on most successful interventions and that our patients can often inform us on, you know, what interventions are most needed as we see them. And so you can have your thinking about it as you see individual patients of, "This person mentioned this could be more useful to them." And so I think also learning from our patients in this space that can seem overwhelming and that maybe we weren't all trained on in medical school to best understand how to approach it and how to give our patients the best care, not just medically, but also financially.

Dr. Hope Rugo: Thank you, Dr. Lee, for sharing your insights with us today. Our listeners will find a link, as I mentioned earlier, to the Ed Book article we discussed today in the transcript of this episode. I think it's very useful, a useful resource, and not just for providers, but for clinic staff overall. I think this can be of great value and help open the discussion as well.

Dr. Kamaria Lee: Thank you so much, Dr. Rugo.

Dr. Hope Rugo: And thanks to our listeners for joining us today. Please join us again next month on By the Book for more insightful views on topics you'll be hearing at Education Sessions from ASCO meetings and our deep dives into new approaches that are shaping modern oncology. Thank you.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Disclosures:

Dr. Hope Rugo:

Honoraria: Mylan/Viatris, Chugai Pharma

Consulting/Advisory Role: Napo Pharmaceuticals, Sanofi, Bristol Myer

Research Funding (Inst.): OBI Pharma, Pfizer, Novartis, Lilly, Merck, Daiichi Sankyo, AstraZeneca, Gilead Sciences, Hoffman La-Roche AG/Genentech, In., Stemline Therapeutics, Ambryx

Dr. Kamaria Lee: No relationships to disclose

View Details

Drs. Hope Rugo, Sheri Brenner, and Mikolaj Slawkowski-Rode discuss the struggle that health care professionals experience when terminally ill patients are suffering and approaches to help clinicians understand and respond to suffering in a more patient-centered and therapeutic way.

TRANSCRIPT

Dr. Hope Rugo: Hello, and welcome to By the Book, a monthly podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I'm your host, Dr. Hope Rugo. I'm director of the Women's Cancers Program and division chief of breast medical oncology at the City of Hope Cancer Center, and I'm also the editor-in-chief of the Educational Book.

On today's episode, we'll be exploring the complexities of grief and oncology and the struggle we experience as healthcare professionals when terminally ill patients are suffering. Our guests will discuss approaches to help clinicians understand and respond to suffering in a more patient-centered and therapeutic way, as outlined in their recently published article titled, "Oncology and Suffering: Strategies on Coping With Grief for Healthcare Professionals."

I'm delighted today to welcome Dr. Keri Brenner, a clinical associate professor of medicine, palliative care attending, and psychiatrist at Stanford University, and Dr. Mikołaj Sławkowski-Rode, a senior research fellow in philosophy in the Humanities Research Institute at the University of Buckingham, where he also serves as director of graduate research in p hilosophy. He is also a research fellow in philosophy at Blackfriars Hall at the University of Oxford and associate professor at the University of Warsaw.

Our full disclosures are available in the transcript of this episode.

Dr. Brenner and Dr. Sławkowski-Rode, thanks for being on the podcast today.

Dr. Keri Brenner: Great to be here, Dr. Rugo. Thank you so much for that kind introduction.

Dr. Mikołaj Sławkowski-Rode: Thank you very much, Dr. Rugo. It's a pleasure and an honor.

Dr. Hope Rugo: So I'm going to start with some questions for both of you. I'll start with Dr. Brenner. You've spoken and written about the concept of suffering when there is no cure. For oncologists, what does it mean to attune to suffering, not just disease? And how might this impact the way they show up in difficult conversations with patients?

Dr. Keri Brenner: Suffering is something that's so omnipresent in the work of clinical oncology, and I like to begin by just thinking about what is suffering, because it's a word that we use so commonly, and yet, it's important to know what we're talking about. I think about the definition of Eric Cassell, who was a beloved mentor of mine for decades, and he defined suffering as the state of severe distress that's associated with events that threaten the intactness of a person. And my colleague here at Stanford, Tyler Tate, has been working on a definition of suffering that encompasses the experience of a gap between how things are versus how things ought to be.

Both of these definitions really touch upon suffering in a person-centered way that's relational about one's identity, meaning, autonomy, and connectedness with others. So these definitions alone remind us that suffering calls for a person-centered response, not the patient as a pathology, but the panoramic view of who the patient is as a person and their lived reality of illness. And in this light, the therapeutic alliance becomes one of our most active ingredients in care. The therapeutic alliance is that collaborative, trusting bond as persons that we have between clinician and patient, and it's actually one of the most powerful predictors of meaningful outcomes in our care, especially in oncologic care.

You know, I'll never forget my first day of internship at Massachusetts General Hospital. A faculty lecturer shared this really sage insight with us that left this indelible mark. She shared, "As physicians and healers, your very self is the primary instrument of healing. Our being is the median of the medicine." So, our very selves as embodied, relationally grounded people, that's the median of the medicine and the first most enduring medicine that we offer. That has really borne fruit in the evidence that we see around the therapeutic alliance. And we see this in oncologic care, that in advanced cancer, a strong alliance with one's oncologist truly improves a patient's quality of life, treatment adherence, emotional well-being, and even surpasses structured interventions like psychotherapeutic interventions.

Dr. Hope Rugo: That's just incredibly helpful information and actually terminology as well, and I think the concept of suffering differs so much. Suffering comes in many shapes and forms, and I think you really have highlighted that. But many oncologists struggle with knowing what to do when patients are suffering but can't be fixed, and I think a lot of times that has to do with oncologists when patients have pain or shortness of breath or issues like that. There are obviously many ways people suffer. But I think what's really challenging is how clinicians understand suffering and what the best approaches to respond to suffering are in the best patient-centered and therapeutic way.

Dr. Keri Brenner: I get that question a lot from my trainees in palliative care, not knowing what to do. And my first response is, this is about how to be, not about knowing what to do, but how to be. In our medical training, we're trained often how to think and treat, but rarely how to be, how to accompany others. And I often have this image that I tell my trainees of, instead of this hierarchical approach of a fix-it mentality of all we're going to do, when it comes to elements of unavoidable loss, mortality, unavoidable sufferings, I imagine something more like accompaniment, a patient walking through some dark caverns, and I am accompanying them, trying to walk beside them, shining a light as a guide throughout that darkness. So it's a spirit of being and walking with. And it's so tempting in medicine to either avoid the suffering altogether or potentially overidentify with it, where the suffering just becomes so all-consuming like it's our own. And we're taught to instead strike a balance of authentic accompaniment through it.

I often teach this key concept in my palli-psych work with my team about formulation. Formulation is a working hypothesis. It's taking a step back and asking, "Why? Why is this patient behaving in this manner? What might the patient's core inner struggle be?" Because asking that "why" and understanding the nuanced dimensions of a patient's core inner struggle will really help guide our therapeutic interactions and guide the way that we accompany them and where we choose to shine that light as we're walking with them. And oftentimes people think, "Well Keri, that sounds so sappy or oversentimental," and it's not. You know, I'm just thinking about a case that I had a couple months ago, and it was a 28-year-old man with gastric cancer, metastatic disease, and that 28-year-old man, he was actually a college Division I athlete, and his dad was an acclaimed Division I coach. And our typical open-ended palliative care questions, that approach, infuriated them. They needed to know that I was showing up confident, competent, and that I was ready, on my A-game, with a real plan for them to follow through. And so my formulation about them was they needed somebody to show up with that confidence and competence, like the Division I athletes that they were, to really meet them and accompany them where they were on how they were going to walk through that experience of illness.

Dr. Hope Rugo: These kinds of insights are so helpful to think about how we manage something that we face every day in oncology care. And I think that there are many ways to manage this.

Maybe I'll ask Dr. Sławkowski-Rode one question just that I think sequences nicely with what you're talking about. A lot of our patients are trying to think about sort of the bigger picture and how that might help clinicians understand and support patients. So, the whole concept of spirituality, you know, how can we really use that as oncology clinicians to better understand and support patients with advanced illness, and how can that help patients themselves? And we'll talk about that in two different ways, but we'll just start with this broader question.

Dr. Mikołaj Sławkowski-Rode: I think spirituality, and here, I usually refer to spirituality in terms of religious belief. Most people in the world are religious believers, and it is very intuitive and natural that religious beliefs would be a resource that people who help patients with a terminal diagnosis and healthcare professionals who work with those patients appeal to when they try to help them deal with the trauma and the stress of these situations.

Now, I think that the interesting thing there is that very often the benefit of appealing to a religious belief is misunderstood in terms of what it delivers. And there are many, many studies on how religious belief can be used to support therapy and to support patients in getting through the experience of suffering and defeating cancer or facing a terminal diagnosis. There's a wealth of literature on this. But most of the literature focuses on this idea that by appealing to religious belief, we help patients and healthcare practitioners who are working with them get over the fact and that there's a terminal diagnosis determining the course of someone's life and get on with our lives and engaging with whatever other pursuits we might have, with our job if we're healthcare practitioners, and with the other things that we might be passionate about in our lives. And the idea here is that this is what religion allows us to do because we sort of defer the need to worry about what's going to happen to us until the afterlife or some perspective beyond the horizon of our life here.

However, my view is – I have worked beyond philosophy also with theologians from many traditions, and my view here is that religion is something that does allow us to get on with our life but not because we're able to move on or move past the concerns that are being threatened by illness or death, but by forming stronger bonds with these things that we value in our life in a way and to have a sense of hope that these will be things that we will be able to keep an attachment to despite the threat to our life. So, in a sense, I think very many approaches in the field have the benefit of religion upside down, as it were, when it comes to helping patients and healthcare professionals who are engaged with their illness and treating it.

Dr. Hope Rugo: You know, it's really interesting the points that you make, and I think really important, but, you know, sometimes the oncologists are really struggling with their own emotional reactions, how they are reacting to patients, and dealing with sort of taking on the burden, which, Dr. Brenner, you were mentioning earlier. How can oncologists be aware of their own emotional reactions? You know, they're struggling with this patient who they're very attached to who's dying or whatever the situation is, but you want to avoid burnout as an oncologist but also understand the patient's inner world and support them.

Dr. Keri Brenner: I believe that these affective, emotional states, they're contagious. As we accompany patients through these tragic losses, it's very normal and expected that we ourselves will experience that full range of the human experience as we accompany the patients. And so the more that we can recognize that this is a normative dimension of our work, to have a nonjudgmental stance about the whole panoramic set of emotions that we'll experience as we accompany patients with curiosity and openness about that, the more sustainable the work will become.

And I often think about the concept of countertransference given to us by Sigmund Freud over 100 years ago. Countertransference is the clinician's response to the patient, the thoughts, feelings, associations that come up within us, shaped by our own history, our own life events, those unconscious processes that come to the foreground as we are accompanying patients with illness. And that is a natural part of the human experience. Historically, countertransference was viewed as something negative, and now it's actually seen as a key that can unlock and enlighten the formulation about what might be going on within the patient themselves even.

You know, I was with a patient a couple weeks ago, and I found myself feeling pretty helpless and hopeless in the encounter as I was trying to care for them. And I recognized that countertransference within myself that I was feeling demoralized. It was a prompt for me to take a step back, get on the balcony, and be curious about that because I normally don't feel helpless and hopeless caring for my patients. Well, ultimately, I discovered through processing it with my interdisciplinary team that the patient likely had demoralization as a clinical syndrome, and so it's natural many of us were feeling helpless and hopeless also accompanying them with their care. And it allowed us to have a greater interdisciplinary approach and a more therapeutic response and deeper empathy for the patient's plight.

And we can really be curious about our countertransferences. You know, a few months ago, I was feeling bored and distracted in a family meeting, which is quite atypical for me when I'm sharing serious illness news. And it was actually a key that allowed me to recognize that the patient was trying to distract all of us talking about inconsequential facts and details rather than the gravitas of her illness.

Being curious about these affective states really allows us to have greater sustainability within our own practice because it normalizes that human spectrum of emotions and also allows us to reduce unconscious bias and have greater inclusivity with our practice because what Freud also said is that what we can't recognize and say within our own selves, if we don't have that self-reflective capacity, it will come out in what we do. So really recognizing and having the self-awareness and naming some of these emotions with trusted colleagues or even within our own selves allows us to ensure that it doesn't come out in aberrant behaviors like avoiding the patient, staving off that patient till the end of the day, or overtreating, offering more chemotherapy or not having the goals of care, doing everything possible when we know that that might result in medically ineffective care.

Dr. Hope Rugo: Yeah, I love the comments that you made, sort of weaving in Freud, but also, I think the importance of talking to colleagues and to sharing some of these issues because I do think that oncologists suffer from the fact that no one else in your life wants to hear about dying people. They don't really want to hear about the tragic cases either. So, I think that using your community, your oncology community and greater community within medicine, is an important part of being able to sort of process.

Dr. Keri Brenner: Yes, and Dr. Rugo, this came up in our ASCO [Education] Session. I'd love to double click into some of those ways that we can do this that aren't too time consuming in our everyday practice. You know, within palliative care, we have interdisciplinary rounds where we process complex cases. Some of us do case supervision with a trusted mentor or colleague where we bring complex cases to them. My team and I offer process rounds virtually where we go through countertransference, formulation, and therapeutic responses on some tough cases.

You know, on a personal note, just last week when I left a family meeting feeling really depleted and stuck, I called one of my trusted colleagues and just for 3 minutes constructively, sort of cathartically vented what was coming up within me after that family meeting, which allowed me to have more of an enlightened stance on what to do next and how to be therapeutically helpful for the case. One of my colleagues calls this "friend-tors." They coined the phrase, and they actually wrote a paper about it. Who within your peer group of trusted colleagues can you utilize and phone in real time or have process opportunities with to get a pulse check on where what's coming up within us as we're doing this work?

Dr. Hope Rugo: Yeah, and it's an interesting question about how one does that and, you know, maintaining that as you move institutions or change places or become more senior, it's really important.

One of the, I think, the challenges sometimes is that we come from different places from our patients, and that can be an issue, I think when our patients are very religious and the provider is not, or the reverse, patients who don't have religious beliefs and you're trying to sort of focus on the spirituality, but it doesn't really ring true. So, Dr. Sławkowski-Rode, what resources can patients and practitioners draw on when they're facing death and loss in the absence of, or just different religious beliefs that don't fit into the standard model?

Dr. Mikołaj Sławkowski-Rode: You're absolutely right that this can be an extremely problematic situation to be in when there is that disconnect of religious belief or more generally spiritual engagement with the situation that we're in. But I just wanted to tie into what Dr. Brenner was saying just before. I couldn't agree more, and I think that a lot of healthcare practitioners, oncologists in particular who I've had the pleasure to talk to at ASCO and at other events as well, are very often quite skeptical about emotional engagement in their profession. They feel as though this is something to be managed, as it were, and something that gets in the way. And they can often be very critical of methods that help them understand the emotions and extend them towards patients because they feel that this will be an obstacle to doing their job and potentially an obstacle also to helping patients to their full ability if they focus on their own emotions or the burden that emotionally, spiritually, and in other ways the illness is for the patient. They feel that they should be focusing on the cancer rather than on the patient's emotions.

And I think that a useful comparison, although, you know, perhaps slightly drastic, is that of combat experience of soldiers. They also need to be up and running and can't be too emotionally invested in the situation that they're in. But there's a crucial difference, which is that soldiers are usually engaged in very short bursts of activity with the time to go back and rethink, and they often have a lot of support for this in between. Whereas doctors are in a profession where their exposure to the emotions of patients and their own emotions, the emotions of families of patients is constant. And I think that there's a great danger in thinking that this is something to be avoided and something to compartmentalize in order to avoid burnout. I think, in a way, burnout is more sure to happen if your emotions and your attachment to your patients goes ignored for too long. So that's just following up on Keri's absolutely excellent points.

As far as the disconnect is concerned, that's, in fact, an area in which I'm particularly interested in. That's where my research comes in. I'm interested in the kinds of connections that we have with other people, especially in terms of maintaining bonds when there is no spiritual belief, no spiritual backdrop to support this connection. In most religious traditions, we have the framework of the religious belief that tells us that the person who we've lost or the values that have become undermined in our life are something that hasn't been destroyed permanently but something that we can still believe we have a deep connection to despite its absence from our life. And how do you rebuild that sense of the existence of the things that you have perceivably lost without the appeal to some sort of transcendent realm which is defined by a given religion?

And that is a hard question. That's a question, I think, that can be answered partly by psychology but also partly by philosophy in terms of looking at who we are as human beings and our nature as people who are essentially, or as entities that are essentially connected to one another. That connection, I believe, is more direct than the mediation of religion might at first suggest. I think that we essentially share the world not only physically, it's not just the case that we're all here, but more importantly, the world that we live in is not just the physical world but the world of meanings and values that helps us orient ourselves in society and amongst one another as friends and foes. And it is that shared sense of the world that we can appeal to when we're thinking about retaining the value or retaining the connection with the people who we have lost or the people who are helping through, go through an experience of facing death.

And just to finish, there's a very interesting question, I think, something that we possibly don't have time to explore, about the degree of connection that we have with other people. So, what I've just been saying is something that rings more true or is more intuitive when we think about the connections that we have to our closest ones. We share a similar outlook onto the world, and our preferences and our moods and our emotions and our values are shaped by life with the other person. And so, appealing to these values can give us a sense of a continued presence. But what in those relationships where the connection isn't that close? For example, given the topic of this podcast, the connection that a patient has with their doctor and vice versa. In what sense can we talk about a shared world of experience? Well, I think, obviously, we should admit degrees to the kind of relationship that can sustain our connection with another person. But at the same time, I don't think there's a clear cutoff point. And I think part of emotional engagement in medical practice is finding yourself somewhere on that spectrum rather than thinking you're completely off of it. That's what I would say.

Dr. Hope Rugo: That's very helpful and I think a very helpful way of thinking about how to manage this challenging situation for all of us.

One of the things that really, I think, is a big question for all of us throughout our careers, is when to address the dying process and how to do that. Dr. Brenner, you know, I still struggle with this – what to do when patients refuse to discuss end-of-life but they're very close to end of life? They don't want to talk about it. It's very stressful for all of us, even where you're going to be, how you're going to manage this. They're just absolutely opposed to that discussion. How should we approach those kinds of discussions? How do we manage that? How do you address the code discussion, which is so important? You know, these patients are not able to stay at home at end-of-life in general, so you really do need to have a code discussion before you're admitting them. It actually ends up being kind of a challenge and a mess all around. You know, I would love your advice about how to manage those situations.

Dr. Keri Brenner: I think that's one of the most piercing and relevant inquiries we have within our clinical work and challenges. I often think of denial not as an all-or-nothing concept but rather as parts of self. There's a part of everyone's being where the unconscious believes it's immortal and will live on forever, and yet we all know intellectually that we all have mortality and finitude and transience, and that time will end. We often think of this work as more iterative and gradual and exposure based. There's potency to words. Saying, "You are dying within days," is a lot higher potency of a phrase to share than, "This is serious illness. This illness is incurable. Time might be shorter than we hoped." And so the earlier and more upstream we begin to have these conversations, even in small, subtle ways, it starts to begin to expose the patient to the concept so they can go from the head to the heart, not only knowing their prognosis intellectually but also affectively, to integrate it into who they are as a person because all patients are trying to live well while also we're gradually exposing them to this awareness of mortality within their own lived experience of illness. And that, ideally, happens gradually over time. Now, there are moments where the medical frame is very limited, and we might have short days, and we have to uptitrate those words and really accompany them more radically through those high-affective moments. And that's when we have to take a lot of more nuanced approaches, but I would say the more earlier and upstream the better.

And then the second piece to that question as well is coping with our own mortality. The more we can be comfortable with our own transience and finitude and limitations, the more we will be able to accompany others through that. And even within my own life, I've had to integrate losses in a way where before I go in to talk to one of my own palliative care patients, one mantra I often say to myself is, "I'm just a few steps behind you. I don't know if it's going to be 30 days or 30 years, but I'm just a few steps behind you on this finite, transient road of life that is the human experience." And that creates a stance of accompaniment that patients really can experience as they're traversing these tragedies.

Dr. Hope Rugo: That's great. And I think those are really important points and actually some pearls, which I think we can take into the clinic. I think being really concrete when really the expected life expectancy is a few days to a couple of weeks can be very, very helpful. And making sure the patients hear you, but also continuing to let them know that, as oncologists, we're here for them. We're not abandoning them. I think that's a big worry for many, certainly of my patients, is that somehow when they would go to hospice or be a 'no code', that we're not going to support them anymore or treat them anymore. That is a really important process of that as well. And of course, engaging the team makes a big difference because the whole oncology team can help to manage situations that are particularly challenging like that.

And just as we close, I wanted to ask one last question of you, Dr. Brenner, that suffering, grief, and burnout, you've really made the point that these are not problems to fix but dimensions that we want to attend to and acknowledge as part of our lives, the dying process is part of all of our lives. It's just dealing with this in the unexpected and the, I think, unpredictability of life, you know, that people take on a lot of guilt and all sorts of things about, all sorts of emotions. And the question is now, people have listened to this podcast, what can they take back to their oncology teams to build a culture that supports clinicians and their team at large to engage with these realities in a meaningful and sustainable way? I really feel like if we could build the whole team approach where we're supporting each other and supporting the patients together, that that will help this process immeasurably.

Dr. Keri Brenner: Yes, and I'm thinking about Dr. Sławkowski-Rode's observation about the combat analogy, and it made me recognize this distinction between suppression and repression. Repression is this unconscious process, and this is what we're taught to do in medical training all the time, to just involuntarily shove that tragedy under the rug, just forget about it and see the next patient and move on. And we know that if we keep unconsciously shoving things under the rug, that it will lead to burnout and lack of sustainability for our clinical teams.

Suppression is a more conscious process. That deliberate effort to say, "This was a tragedy that I bore witness to. I know I need to put that in a box on the shelf for now because I have 10 other patients I have to see." And yet, do I work in a culture where I can take that off the shelf during particular moments and process it with my interdisciplinary team, phone a friend, talk to a trusted colleague, have some trusted case supervision around it, or process rounds around it, talk to my social worker? And I think the more that we model this type of self-reflective capacity as attendings, folks who have been in the field for decades, the more we create that ethos and culture that is sustainable because clinician self-reflection is never a weakness, rather it's a silent strength. Clinician self-reflection is this portal for wisdom, connectedness, sustainability, and ultimately transformative growth within ourselves.

Dr. Hope Rugo: That's such a great point, and I think this whole discussion has been so helpful for me and I hope for our audience that we really can take these points and bring them to our practice. I think, "Wow, this is such a great conversation. I'd like to have the team as a whole listen to this as ways to sort of strategize talking about the process, our patients, and being supportive as a team, understanding how we manage spirituality when it connects and when it doesn't." All of these points, they're bringing in how we process these issues and the whole idea of suppressing versus sort of deciding that it never happened at all is, I think, very important because that's just a tool for managing our daily lives, our busy clinics, and everything we manage.

Dr. Keri Brenner: And Dr. Rugo, it's reminding me at Stanford, you know, we have this weekly practice that's just a ritual where every Friday morning for 30 minutes, our social worker leads a process rounds with us as a team, where we talk about how the work that we're doing clinically is affecting us in our lives in ways that have joy and greater meaning and connectedness and other ways that might be depleting. And that kind of authentic vulnerability with one another allows us to show up more authentically for our patients. So those rituals, that small 30 minutes once a week, goes a long way. And it reminds me that sometimes slowing things down with those rituals can really get us to more meaningful, transformative places ultimately.

Dr. Hope Rugo: It's a great idea, and I think, you know, making time for that in everybody's busy days where they just don't have any time anymore is important. And you don't have to do it weekly, you could even do something monthly. I think there's a lot of options, and that's a great suggestion.

I want to thank you both for taking your time out for this enriching and incredibly helpful conversation. Our listeners will find a link to the Ed Book article we discussed today, which is excellent, in the transcript of this episode. I want to thank you again, Dr. Brenner and Dr. Sławkowski-Rode, for your time and for your excellent thoughts and advice and direction.

Dr. Mikołaj Sławkowski-Rode: Thank you very much, Dr. Rugo.

Dr. Keri Brenner: Thank you.

Dr. Hope Rugo: And thanks to our listeners for joining us today. Please join us again next month on By the Book for more insightful views on topics you'll be hearing at the education sessions from ASCO meetings and our deep dives on new approaches that are shaping modern oncology.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Follow today's speakers:

Dr. Hope Rugo

@hope.rugo

Dr. Keri Brenner

@keri_brenner

Dr. Mikolaj Slawkowski-Rode

@MikolajRode

Follow ASCO on social media:

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Disclosures:

Dr. Hope Rugo:

Honoraria: Mylan/Viatris, Chugai Pharma

Consulting/Advisory Role: Napo Pharmaceuticals, Sanofi, Bristol Myer

Research Funding (Inst.): OBI Pharma, Pfizer, Novartis, Lilly, Merck, Daiichi Sankyo, AstraZeneca, Gilead Sciences, Hoffman La-Roche AG/Genentech, In., Stemline Therapeutics, Ambryx

Dr. Keri Brenner: No relationships to disclose

Dr. Mikolaj Slawkowski-Rode: No relationships to disclose

View Details

Dr. Nathan Pennell and Dr. Cheryl Czerlanis discuss challenges in lung cancer screening and potential solutions to increase screening rates, including the use of AI to enhance risk prediction and screening processes.

Transcript Dr. Nate Pennell: Hello, and welcome to By the Book, a monthly podcast series for ASCO Education that features engaging discussions between editors and authors from the ASCO Educational Book. I'm Dr. Nate Pennell, the co-director of the Cleveland Clinic Lung Cancer Program and vice chair of clinical research for the Taussig Cancer Center. I'm also the editor-in-chief for the ASCO Educational Book.

Lung cancer is one of the leading causes of cancer-related mortality worldwide, and most cases are diagnosed at advanced stages where curative treatment options are limited. On the opposite end, early-stage lung cancers are very curable. If only we could find more patients at that early stage, an approach that has revolutionized survival for other cancer types such as colorectal and breast cancer.

On today's episode, I'm delighted to be joined by Dr. Cheryl Czerlanis, a professor of medicine and thoracic medical oncologist at the University of Wisconsin Carbone Cancer Center, to discuss her article titled, "Broadening the Net: Overcoming Challenges and Embracing Novel Technologies in Lung Cancer Screening." The article was recently published in the ASCO Educational Book and featured in an Education Session at the 2025 ASCO Annual Meeting. Our full disclosures are available in the transcript of this episode.

Cheryl, it's great to have you on the podcast today. Thanks for being here.

Dr. Cheryl Czerlanis: Thanks, Nate. It’s great to be here with you.

Dr. Nate Pennell: So, I'd like to just start by asking you a little bit about the importance of lung cancer screening and what evidence is there that lung cancer screening is beneficial.

Dr. Cheryl Czerlanis: Thank you. Lung cancer screening is extremely important because we know that lung cancer survival is closely tied to stage at diagnosis. We have made significant progress in the treatment of lung cancer, especially over the past decade, with the introduction of immunotherapies and targeted therapies based on personalized evaluation of genomic alterations. But the reality is that outside of a lung screening program, most patients with lung cancer present with symptoms related to advanced cancer, where our ability to cure the disease is more limited.

While lung cancer screening has been studied for years, the National Lung Screening Trial, or the NLST, first reported in 2011 a significant reduction in lung cancer deaths through screening. Annual low-dose CT scans were performed in a high-risk population for lung cancer in comparison to chest X-ray. The study population was comprised of asymptomatic persons aged 55 to 74 with a 30-pack-year history of smoking who were either active smokers or had quit within 15 years. The low-dose CT screening was associated with a 20% relative risk reduction in lung cancer-related mortality. A similar magnitude of benefit was also reported in the NELSON trial, which was a large European randomized trial comparing low-dose CT with a control group receiving no screening.

Dr. Nate Pennell: So, this led, of course, to approval from CMS (Centers for Medicare and Medicaid Services) for lung cancer screening in the Medicare population, probably about 10 years ago now, I think. And there are now two major trials showing an unequivocal reduction in lung cancer-related mortality and even evidence that it reduces overall mortality with lung cancer screening. But despite this, lung cancer screening rates are very low in the United States. So, first of all, what's going on? Why are we not seeing the kinds of screening rates that we see with mammography and colonoscopy? And what are the barriers to that here?

Dr. Cheryl Czerlanis: That's a great question. Thank you, Nate. In the United States, recruitment for lung cancer screening programs has faced numerous challenges, including those related to socioeconomic, cultural, logistical, and even racial disparities. Our current lung cancer screening guidelines are somewhat imprecise and often fail to address differences that we know exist in sex, smoking history, socioeconomic status, and ethnicity. We also see underrepresentation in certain groups, including African Americans and other minorities, and special populations, including individuals with HIV. And even where lung cancer screening is readily available and we have evidence of its efficacy, uptake can be low due to both provider and patient factors. On the provider side, barriers include having insufficient time in a clinic visit for shared decision-making, fear of missed test results, lack of awareness about current guidelines, concerns about cost, potential harms, and evaluating both true and false-positive test results.

And then on the patient side, barriers include concerns about cost, fear of getting a cancer diagnosis, stigma associated with tobacco smoking, and misconceptions about the treatability of lung cancer.

Dr. Nate Pennell: I think those last two are really what make lung cancer unique compared to, say, for example, breast cancer, where there really is a public acceptance of the value of mammography and that breast cancer is no one's fault and that it really is embraced as an active way you can take care of yourself by getting your breast cancer screening. Whereas in lung cancer, between the stigma of smoking and the concern that, you know, it's a death sentence, I think we really have some work to be made up, which we'll talk about in a minute about what we can do to help improve this.

Now, that's in the U.S. I think things are probably, I would imagine, even worse when we leave the U.S. and look outside, especially at low- and middle-income countries.

Dr. Cheryl Czerlanis: Yes, globally, this issue is even more complex than it is in the United States. Widespread implementation of low-dose CT imaging for lung cancer screening is limited by manpower, infrastructure, and economic constraints. Many low- and middle-income countries even lack sufficient CT machines, trained personnel, and specialized facilities for accurate and timely screenings. Even in urban centers with advanced diagnostic facilities, the high screening and follow-up care costs can limit access. Rural populations face additional barriers, such as geographic inaccessibility of urban centers, transportation costs, language barriers, and mistrust of healthcare systems. In addition, healthcare systems in these regions often prioritize infectious diseases and maternal health, leaving limited room for investments in noncommunicable disease prevention like lung cancer screening. Policymakers often struggle to justify allocating resources to lung cancer screening when immediate healthcare needs remain unmet. Urban-rural disparities exacerbate these challenges, with rural regions frequently lacking the infrastructure and resources to sustain screening programs.

Dr. Nate Pennell: Well, it's certainly an intimidating problem to try to reduce these disparities, especially between the U.S. and low- and middle-income countries. So, what are some of the potential solutions, both here in the U.S. and internationally, that we can do to try to increase the rates of lung cancer screening?

Dr. Cheryl Czerlanis: The good news is that we can take steps to address these challenges, but a multifaceted approach is needed. Public awareness campaigns focused on the benefits of early detection and dispelling myths about lung cancer screening are essential to improving participation rates. Using risk-prediction models to identify high-risk individuals can increase the efficiency of lung cancer screening programs. Automated follow-up reminders and screening navigators can also ensure timely referrals and reduce delays in diagnosis and treatment. Reducing or subsidizing the cost of low-dose CT scans, especially in low- or middle-income countries, can improve accessibility. Deploying mobile CT scanners can expand access to rural and underserved areas.

On a global scale, integrating lung cancer screening with existing healthcare programs, such as TB or noncommunicable disease initiatives, can enhance resource utilization and program scalability. Implementing lung cancer screening in resource-limited settings requires strategic investment, capacity building, and policy interventions that prioritize equity. Addressing financial constraints, infrastructure gaps, and sociocultural barriers can help overcome existing challenges. By focusing on cost-effective strategies, public awareness, and risk-based eligibility criteria, global efforts can promote equitable access to lung cancer screening and improve outcomes.

Lastly, as part of the medical community, we play an important role in a patient's decision to pursue lung cancer screening. Being up to date with current lung cancer screening recommendations, identifying eligible patients, and encouraging a patient to undergo screening often is the difference-maker. Electronic medical record (EMR) systems and reminders are helpful in this regard, but relationship building and a recommendation from a trusted provider are really essential here.

Dr. Nate Pennell: I think that makes a lot of sense. I mean, there are technology improvements. For example, our lung cancer screening program at The Cleveland Clinic, a few years back, we finally started an automated best practice alert in our EMR for patients who met the age and smoking requirements, and it led to a six-fold increase in people referred for screening. But at the same time, there's a difference between just getting this alert and putting in an order for lung cancer screening and actually getting those patients to go and actually do the screening and then follow up on it. And that, of course, requires having that relationship and discussion with the patient so that they trust that you have their best interests.

Dr. Cheryl Czerlanis: Exactly. I think that's important. You know, certainly, while technology can aid in bringing patients in, there really is no substitute for trust-building and a personal relationship with a provider.

Dr. Nate Pennell: I know that there are probably multiple examples within the U.S. where health systems or programs have put together, I would say, quality improvement projects to try to increase lung cancer screening and working with their community. There's one in particular that you discuss in your paper called the "End Lung Cancer Now" initiative. I wonder if you could take us through that.

Dr. Cheryl Czerlanis: Absolutely. "End Lung Cancer Now" is an initiative at the Indiana University Simon Comprehensive Cancer Center that has the vision to end suffering and death from lung cancer in Indiana through education and community empowerment. We discuss this as a paradigm for how community engagement is important in building and scaling a lung cancer screening program.

In 2023, the "End Lung Cancer Now" team decided to focus its efforts on scaling and transforming lung cancer screening rates in Indiana. They developed a task force with 26 experts in various fields, including radiology, pulmonary medicine, thoracic surgery, public health, and advocacy groups. The result of this work is an 85-page blueprint with key recommendations that any system and community can use to scale lung cancer screening efforts. After building strong infrastructure for lung cancer screening at Indiana University, they sought to understand what the priorities, resources, and challenges in their communities were. To do this, they forged strong partnerships with both local and national organizations, including the American Lung Association, American Cancer Society, and others. In the first year, they actually tripled the number of screening low-dose CTs performed in their academic center and saw a 40% increase system-wide. One thing that I think is the most striking is that through their community outreach, they learned that most people prefer to get medical care close to home within their own communities. Establishing a way to support the local infrastructure to provide care became far more important than recruiting patients to their larger system.

In exciting news, "End Lung Cancer Now" has partnered with the IU Simon Comprehensive Cancer Center and IU Health to launch Indiana's first and only mobile lung screening program in March of 2025. This mobile program travels around the state to counties where the highest incidence of lung cancer exists and there is limited access to screening. The mobile unit parks at trusted sites within communities and works in partnership, not competition, with local health clinics and facilities to screen high-risk populations.

Dr. Nate Pennell: I think that sounds like a great idea. Screening is such an important thing that it doesn't necessarily have to be owned by any one particular health system for their patients. I think. And I love the idea of bringing the screening to patients where they are. I can speak to working in a regional healthcare system with a main campus in the downtown that patients absolutely hate having to come here from even 30 or 40 minutes away, and they'd much rather get their care locally. So that makes perfect sense.

So, under the current guidelines, there are certainly things that we can do to try to improve capturing the people that meet those. But are those guidelines actually capturing enough patients with lung cancer to make a difference? There certainly are proposals within patient advocacy communities and even other countries where there's a large percentage of non-smokers who perhaps get lung cancer. Can we expand beyond just older, current and heavy smokers to identify at-risk populations who could benefit from screening?

Dr. Cheryl Czerlanis: Yes, I think we can, and it's certainly an active area of research interest. We know that tobacco is the leading cause of lung cancer worldwide. However, other risk factors include secondhand smoke, family history, exposure to environmental carcinogens, and pulmonary diseases like COPD and interstitial lung disease. Despite these known associations, the benefit of lung cancer screening is less well elucidated in never-smokers and those at risk of developing lung cancer because of family history or other risk factors. We know that the eligibility criteria associated with our current screening guidelines focus on age and smoking history and may miss more than 50% of lung cancers. Globally, 10% to 25% of lung cancer cases occur in never-smokers. And in certain parts of the world, like you mentioned, Nate, such as East Asia, many lung cancers are diagnosed in never-smokers, especially in women. Risk-prediction models use specific risk factors for lung cancer to enhance individual selection for screening, although they have historically focused on current or former smokers.

We know that individuals with family members affected by lung cancer have an increased risk of developing the disease. To this end, several large-scale, single-arm prospective studies in Asia have evaluated broadening screening criteria to never-smokers, with or without additional risk factors. One such study, the Taiwan Lung Cancer Screening in Never-Smoker Trial, was a multicenter prospective cohort study at 17 medical centers in Taiwan. The primary outcome of the TALENT trial was lung cancer detection rate. Eligible patients aged 55 to 75 had either never smoked or had a light and remote smoking history. In addition, inclusion required one or more of the following risk factors: family history of lung cancer, passive smoke exposure, history of TB or COPD, a high cooking index, which is a metric that quantifies exposure to cooking fumes, or a history of cooking without ventilation. Participants underwent low-dose CT screening at baseline, then annually for 2 years, and then every 2 years for up to 6 years. The lung cancer detection rate was 2.6%, which was higher than that reported in the NLST and NELSON trials, and most were stage 0 or I cancers. Subsequently, this led to the Taiwan Early Detection Program for Lung Cancer, a national screening program that was launched in 2022, targeting 2 screening populations: individuals with a heavy history of smoking and individuals with a family history of lung cancer.

We really need randomized controlled trials to determine the true rates of overdiagnosis or finding cancers that would not lead to morbidity or mortality in persons who are diagnosed, and to establish whether the high lung detection rates are associated with a decrease in lung cancer-related mortality in these populations. However, the implementation of randomized controlled low-dose CT screening trials in never-smokers has been limited by the need for large sample sizes, lengthy follow-up, and cost.

In another group potentially at higher risk for developing lung cancer, the role of lung cancer screening in individuals who harbor germline pathogenic variants associated with lung cancer also needs to be explored further.

Dr. Nate Pennell: We had this discussion when the first criteria came out because there have always been risk-based calculators for lung cancer that certainly incorporate smoking but other factors as well and have discussion about whether we should be screening people based on their risk and not just based on discrete criteria such as smoking. But of course, the insurance coverage for screening, you have to fit the actual criteria, which is very constrained by age and smoking history. Do you think in the U.S. there's hope for broadening our screening beyond NLST and NELSON criteria?

Dr. Cheryl Czerlanis: I do think at some point there is hope for broadening the criteria beyond smoking history and age, beyond the criteria that we have typically used and that is covered by insurance. I do think it will take some work to perhaps make the prediction models more precise or to really understand who can benefit. We certainly know that there are many patients who develop lung cancer without a history of smoking or without family history, and it would be great if we could diagnose more patients with lung cancer at an earlier stage. I think this will really count on there being some work towards trying to figure out what would be the best population for screening, what risk factors to look for, perhaps using some new technologies that may help us to predict who is at risk for developing lung cancer, and trying to increase the group that we study to try and find these early-stage lung cancers that can be cured.

Dr. Nate Pennell: Part of the reason we, of course, try to enrich our population is screening works better when you have a higher pretest probability of actually having cancer. And part of that also is that our technology is not that great. You know, even in high-risk patients who have CT scans that are positive for a screen, we know that the vast majority of those patients with lung nodules actually don't have lung cancer. And so you have to follow them, you have to use various models to see, you know, what the risk, even in the setting of a positive screen, is of having lung cancer.

So, why don't we talk about some newer tools that we might use to help improve lung cancer screening? And one of the things that everyone is super excited about, of course, is artificial intelligence. Are there AI technologies that are helping out in early detection in lung cancer screening?

Dr. Cheryl Czerlanis: Yes, that's a great question. We know that predicting who's at risk for lung cancer is challenging for the reasons that we talked about, knowing that there are many risk factors beyond smoking and age that are hard to quantify. Artificial intelligence is a tool that can help refine screening criteria and really expand screening access. Machine learning is a form of AI technology that is adept at recognizing patterns in large datasets and then applying the learning to new datasets. Several machine learning models have been developed for risk stratification and early detection of lung cancer on imaging, both with and without blood-based biomarkers. This type of technology is very promising and can serve as a tool that helps to select individuals for screening by predicting who is likely to develop lung cancer in the future.

A group at Massachusetts General Hospital, represented in our group for this paper by my co-authors, Drs. Fintelmann and Chang, developed Sybil, which is an open-access 3D convolutional neural network that predicts an individual's future risk of lung cancer based on the analysis of a single low-dose CT without the need for human annotation or other clinical inputs. Sybil and other machine learning models have tremendous potential for precision lung cancer screening, even, and perhaps especially, in settings where expert image interpretation is unavailable. They could support risk-adapted screening schedules, such as varying the frequency and interval of low-dose CT scans according to individual risk and potentially expand lung cancer screening eligibility beyond age and smoking history. Their group predicts that AI tools like Sybil will play a major role in decoding the complex landscape of lung cancer risk factors, enabling us to extend life-saving lung cancer screening to all who are at risk.

Dr. Nate Pennell: I think that that would certainly be welcome. And as AI is working its way into pretty much every aspect of life, including medical care, I think it's certainly promising that it can improve on our existing technology.

We don't have to spend a lot of time on this because I know it's a little out of scope for what you covered in your paper, but I'm sure our listeners are curious about your thoughts on the use of other types of testing beyond CT screening for detecting lung cancer. I know that there are a number of investigational and even commercially available blood tests, for example, for detection of lung cancer, or even the so-called multi-cancer detection blood tests that are now being offered, although not necessarily being covered by insurance, for multiple types of cancer, but lung cancer being a common cancer is included in that. So, what do you think?

Dr. Cheryl Czerlanis: Yes, like you mentioned, there are novel bioassays such as blood-based biomarker testing that evaluate for DNA, RNA, and circulating tumor cells that are both promising and under active investigation for lung cancer and multi-cancer detection. We know that such biomarker assays may be useful in both identifying lung cancers but also in identifying patients with a high-risk result who should undergo lung cancer screening by conventional methods.

Dr. Nate Pennell: Anything that will improve on our rate of screening, I think, will be welcome. I think probably in the future, it will be some combination of better risk prediction and better interpretation of screening results, whether those be imaging or some combination of imaging and biomarkers, breath-based, blood-based. There's so much going on that it is pretty exciting, but we're still going to have to overcome the stigma and lack of public support for lung cancer screening if we're going to move the needle.

Dr. Cheryl Czerlanis: Yes, I think moving the needle is so important because we know lung cancer is still a very morbid disease, and our ability to cure patients is not where we would like it to be. But I do believe there's hope. There are a lot of motivated individuals and groups who are passionate about lung cancer screening, like myself and my co-authors, and we're just happy to be able to share some ways that we can overcome the challenges and really try and make an impact in the lives of our patients.

Dr. Nate Pennell: Well, thank you, Dr. Czerlanis, for joining me on the By the Book Podcast today and for all of your work to advance care for patients with lung cancer.

Dr. Cheryl Czerlanis: Thank you, Dr. Pennell. It's such a pleasure to be with you today. Thank you.

Dr. Nate Pennell: And thank you to our listeners for joining us today. You'll find a link to Dr. Czerlanis' article in the transcript of this episode.

Please join us again next month for By the Book's next episode and more insightful views on topics you'll be hearing at the education sessions from ASCO meetings throughout the year, and our deep dives on approaches that are shaping modern oncology.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Follow today’s speakers:   

Dr. Nathan Pennell  

@n8pennell 

@n8pennell.bsky.social

Dr. Cheryl Czerlanis

Follow ASCO on social media:   

@ASCO on X (formerly Twitter)   

ASCO on Bluesky  

ASCO on Facebook   

ASCO on LinkedIn   

Disclosures:  

Dr. Nate Pennell:      

Consulting or Advisory Role: AstraZeneca, Lilly, Cota Healthcare, Merck, Bristol-Myers Squibb, Genentech, Amgen, G1 Therapeutics, Pfizer, Boehringer Ingelheim, Viosera, Xencor, Mirati Therapeutics, Janssen Oncology, Sanofi/Regeneron     

Research Funding (Institution): Genentech, AstraZeneca, Merck, Loxo, Altor BioScience, Spectrum Pharmaceuticals, Bristol-Myers Squibb, Jounce Therapeutics, Mirati Therapeutics, Heat Biologics, WindMIL, Sanofi  

Dr. Cheryl Czerlanis:

Research Funding (Institution): LungLife AI, AstraZeneca, Summit Therapeutics

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Host Dr. Nate Pennell and his guest, Dr. Chloe Atreya, discuss the ASCO Educational Book article, “Integrative Oncology: Incorporating Evidence-Based Approaches to Patients With GI Cancers,” highlighting the use of mind-body approaches, exercise, nutrition, acupuncture/acupressure, and natural products.

Transcript Dr. Nate Pennell: Welcome to ASCO Education: By the Book, our new monthly podcast series that will feature engaging discussions between editors and authors from the ASCO Educational Book. We'll be bringing you compelling insights on key topics featured in Education Sessions at ASCO meetings and some deep dives on the approaches shaping modern oncology.

I'm Dr. Nate Pennell, director of the Cleveland Clinic Lung Cancer Medical Oncology Program as well as vice chair of clinical research for the Taussig Cancer Institute. Today, I'm delighted to welcome Dr. Chloe Atreya, a professor of Medicine in the GI Oncology Group at the University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center, and the UCSF Osher Center for Integrative Health, to discuss her article titled, “Integrative Oncology Incorporating Evidence-Based Approaches to Patients With GI Cancers”, which was recently published in the ASCO Educational Book.

Our full disclosures are available in the transcript of this episode.

Dr. Atreya, it's great to have you on the podcast today. Thanks for joining me.

Dr. Chloe Atreya: Thanks Dr. Pennell. It's a pleasure to be here.

Dr. Nate Pennell: Dr. Atreya, you co-direct the UCSF Integrative Oncology Program with a goal to really help patients with cancer live as well as possible. And before we dive into the review article and guidelines, I'd love to just know a little bit about what inspired you to go into this field?

Dr. Chloe Atreya: Yeah, thank you for asking. I've had a long-standing interest in different approaches to medicine from global traditions and I have a degree in pharmacology, and I continue to work on new drug therapies for patients with colorectal cancer. And one thing that I found is that developing new drugs is a long-term process and often we're not able to get the drugs to the patients in front of us. And so early on as a new faculty member at UCSF, I was trying to figure out what I could do for the patient in front of me if those new drug therapies may not be available in their lifetime. And one thing I recognized was that in some conversations the patient and their family members, even if the patient had metastatic disease, they were able to stay very present and to live well without being sidelined by what might happen in the future. And then in other encounters, people were so afraid of what might be happening in the future, or they may have regrets maybe about not getting that colonoscopy and that was eroding their ability to live well in the present.

So, I started asking the patients and family members who were able to stay present, “What's your secret? How do you do this?” And people would tell me, “It's my meditation practice,” or “It's my yoga practice.” And so, I became interested in this. And an entry point for me, and an entry point to the Osher Center at UCSF was that I took the Mindfulness-Based Stress Reduction Program to try to understand experientially the evidence for this and became very interested in it. I never thought I would be facilitating meditation for patients, but it became a growing interest. And as people are living longer with cancer and are being diagnosed at younger ages, often with young families, how one lives with cancer is becoming increasingly important.

Dr. Nate Pennell: I've always been very aware that it seemed like the patients that I treated who had the best quality of life during their life with cancer, however that ended up going, were those who were able to sort of compartmentalize it, where, when it was time to focus on discussing treatment or their scans, they were, you know, of course, had anxiety and other things that went along with that. But when they weren't in that, they were able to go back to their lives and kind of not think about cancer all the time. Whereas other people sort of adopt that as their identity almost is that they are living with cancer and that kind of consumes all of their time in between visits and really impacts how they're able to enjoy the rest of their lives. And so, I was really interested when I was reading your paper about how mindfulness seemed to be sort of like a formal way to help patients achieve that split. I'm really happy that we're able to talk about that.

Dr. Chloe Atreya: Yeah, I think that's absolutely right. So, each of our patients is more than their cancer diagnosis. And the other thing I would say is that sometimes patients can use the cancer diagnosis to get to, “What is it that I really care about in life?” And that can actually heighten an experience of appreciation for the small things in life, appreciation for the people that they love, and that can have an impact beyond their lifetime.

Dr. Nate Pennell: Just in general, I feel like integrative medicine has come a long way, especially over the last decade or so. So, there's now mature data supporting the incorporation of elements of integrative oncology into comprehensive cancer care. We've got collaborations with ASCO. They've published clinical practice guidelines around diet, around exercise, and around the use of cannabinoids. ASCO has worked with the Society for Integrative Oncology to address management of pain, anxiety, depression, fatigue – lots of different evidence bases now to try to help guide people, because this is certainly something our patients are incredibly interested in learning about. Can you get our listeners up to speed a little bit on the updated guidelines and resources supporting integrative oncology?

Dr. Chloe Atreya: Sure. I can give a summary of some of the key findings. And these are rigorous guidelines that came together by consensus from expert panels. I had the honor of serving on the anxiety and depression panel. So, these panels will rate the quality of the evidence available to come up with a strength of recommendation. I think that people are at least superficially aware of the importance of diet and physical activity and that cannabis and cannabinoids have evidence of benefit for nausea and vomiting. They may not be aware of some of the evidence supporting these other modalities. So, for anxiety and depression, mindfulness-based interventions, which include meditation and meditative movement, have the strongest level of evidence. And the clinical practice guidelines indicate that they should be offered to any adult patient during or after treatment who is experiencing symptoms of anxiety or depression. Other modalities that can help with anxiety and depression include yoga and Tai Chi or Qigong. And with the fatigue guidelines, mindfulness-based interventions are also strongly recommended, along with exercise and cognitive behavioral therapy, Tai Chi and Qigong during treatment, yoga after treatment.

And some of these recommendations also will depend on where the evidence is. So, yoga is an example of an intervention that I think can be helpful during treatment, but most of our evidence is on patients who are post-treatment. So, most of our guidelines separate out during treatment and the post-treatment phase because the quality of evidence may be different for these different phases of treatment.

With the pain guidelines, the strongest recommendation is for acupuncture, specifically for people with breast cancer who may be experiencing joint pain related to aromatase inhibitors. However, acupuncture and other therapies, including massage, can be helpful with pain as well. So those are a few of the highlights.

Dr. Nate Pennell: Yeah, I was surprised at the really good level of evidence for the mindfulness-based practices because I don't think that's the first thing that jumps to mind when I think about integrative oncology. I tend to think more about physical interventions like acupuncture or supplements or whatnot. So, I think this is really fantastic that we're highlighting this.

And a lot of these interventions like the Qigong, Tai Chi, yoga, is it the physical practice of those that benefits them or is it that it gives them something to focus on, to be mindful of? Is that the most important intervention? It doesn't really matter what you're doing as long as you have something that kind of takes you out of your experience and allows you to focus on the moment.

Dr. Chloe Atreya: I do think it is a mind, body and spirit integration, so that all aspects are important. We also say that the best practice is the one that you actually practice. So, part of the reason that it's important to have these different modalities is that not everybody is going to take up meditation. And there may be people for whom stationary meditation, sitting and meditating, works well, and other people for whom meditative movement practices may be what they gravitate to. And so, I think that it's important to have a variety of options. And one thing that's distinct from some of our pharmacologic therapies is that the safety of these is, you know, quite good. So, it becomes less important to say, “Overall, is Tai Chi better or is yoga better?” for instance. It really depends on what it is that someone is going to take up.

Dr. Nate Pennell: And of course, something that's been really nice evidence-based for a long time, even back when I was in my training in the 2000s with Jennifer Temel at Massachusetts General Hospital, was the impact of physical activity and exercise on patients with cancer. It seems like that is pretty much a universally good recommendation for patients.

Dr. Chloe Atreya: Yes, that's absolutely right. Physical activity has been associated with improved survival after a cancer diagnosis. And that's both cancer specific survival and overall survival.

The other thing I'll say about physical activity, especially the mindful movement practices like Tai Chi and Qigong and yoga, is that they induce physiologic shifts in the body that can promote relaxation, so they can dampen that stress response in a physiologic way. And these movement practices are also the best way to reduce cancer-associated fatigue.

Dr. Nate Pennell: One of the things that patients are always very curious about when they talk to me, and I never really feel like I'm as well qualified as I'd like to be to advise them around dietary changes in nutrition. And can you take me a little bit through some of the evidence base for what works and what doesn't work?

Dr. Chloe Atreya: Sure. I do think that it needs to be tailored to the patient's needs. Overall, a diet that is plant-based and includes whole grains is really important. And I often tell patients to eat the rainbow because all of those different phytochemicals that cause the different colors in our fruits and vegetables are supporting different gut microbiota. So that is a basis for a healthy gut microbiome. That said, you know, if someone is experiencing symptoms related to cancer or cancer therapy, it is important to tailor dietary approaches. This is where some of the mindful eating practices can help. So, sometimes actually not just focusing on what we eat, but how we eat can help with symptoms that are associated with eating. So, some of our patients have loss of appetite, and shifting one's relationship to food can help with nutrition. Sometimes ‘slow it down’ practices can help both with appetite and with digestion.

Dr. Nate Pennell: One of the things that you said both in the paper and just now on our podcast, talking about how individualized and personalized this is. And I really liked the emphasis that you had on flexibility and self-compassion over rigid discipline and prescriptive recommendations here. And this is perhaps one of the real benefits of having an integrative oncology team that can work with patients as opposed to them just trying to find things online.

Dr. Chloe Atreya: Yes, particularly during treatment, I think that's really important. And that was borne out by our early studies we called “Being Present.” So, after I was observing the benefits anecdotally among my patients of the ability to be present, we designed these pilot studies to teach meditation and meditative practices to patients. And in these pilot studies, the original ones were pretty prescriptive in a way that mindfulness-based stress reduction is fairly prescriptive in terms of like, “This is what we're asking you to do. Just stick with the program.” And there can be benefits if you can stick with the program. It's really hard though if someone is going through treatment and with GI cancers, it may be that they're getting chemotherapy every two weeks and they have one week where they're feeling really crummy and another week where they're trying to get things done. And we realized that sometimes people were getting overwhelmed and feeling like the mindfulness practice was another thing on their to-do list and that they were failing if they didn't do this thing that was important for them. And so, we've really kind of changed our emphasis. And part of our emphasis now is on incorporating mindfulness practices into daily life. Any activity that doesn't require a lot of executive function can be done mindfully, meaning with full attention. And so, especially for some of our very busy patients, that can be a way of, again, shifting how I'm doing things rather than adding a new thing to do.

Dr. Nate Pennell: And then another part I know that patients are always very curious about that I'm really happy to see that we're starting to build an evidence base for is the use of supplements and natural products. So, can you take us a little bit through where we stand in terms of evidence behind, say, cannabis and some of the other available products out there?

Dr. Chloe Atreya: Yeah, I would say that is an area that requires a lot more study. It's pretty complicated because unlike mindfulness practices where there are few interactions with other treatments, there is the potential for interactions, particularly with the supplements. And the quality of the supplements matters. And then there tends to be a lot of heterogeneity among the studies both in the patients and what other treatments they may be receiving, as well as the doses of the supplements that they're receiving.

One of my earliest mentors at Yale is someone named Dr. Tommy Chang, who has applied the same rigor that that we apply to testing of biomedical compounds to traditional Chinese medicine formulas. And so, ensuring that the formulation is stable and then formally testing these formulations along with chemotherapy. And we need more funding for that type of research in order to really elevate our knowledge of these natural products. We often will direct patients to the Memorial Sloan Kettering ‘About Herbs, Botanicals, and Other Products’ database as one accessible source to learn more about the supplements. We also work with our pharmacists who can provide the data that exists, but we do need to take it with a grain of salt because of the heterogeneity in the data. And then it's really important if people are going to take supplements, for them to take supplements that are of high quality. And that's something in the article that we list all of the things that one should look for on the label of a supplement to ensure that it is what it's billed to be.

Dr. Nate Pennell: So, most of what we've been talking about so far has really been applying to all patients with cancer, but you of course are a GI medical oncologist, and this is a publication in the Educational Book from the ASCO GI Symposium. GI cancers obviously have an incredibly high and rising incidence rate among people under 50, representing a quarter of all cancer incidence worldwide, a third of cancer related deaths worldwide. Is there something specific that GI oncologists and patients with GI cancers can take home from your paper or is this applicable to pretty much everyone?

Dr. Chloe Atreya: Yeah, so the evidence that we review is specifically for GI cancers. So, it shows both its strengths and also some of the limitations. So many of the studies have focused on other cancers, especially breast cancer. In the integrative oncology field, there are definitely gaps in studying GI cancers. At the same time, I would say that GI cancers are very much linked to lifestyle in ways that are complicated, and we don't fully understand. However, the best ways that we can protect against development of GI cancers, acknowledging that no one is to blame for developing a GI cancer and no one is fully protected, but the best things that we can do for overall health and to prevent GI cancers are a diet that is plant-based, has whole grains. There's some data about fish that especially the deep-water fish, may be protective and then engaging in physical activity.

One thing I would like for people to take away is that these things that we know that are preventative against developing cancer are also important after development of a GI cancer. Most of the data comes from studies of patients with colorectal cancer and that again, both cancer specific and overall mortality is improved with better diet and with physical activity. So, this is even after a cancer diagnosis. And I also think that, and this is hard to really prove, but we're in a pretty inflammatory environment right now. So, the things that we can do to decrease stress, improve sleep, decrease inflammation in the body, and we do know that inflammation is a risk factor for developing GI cancers. So, I think that all of the integrative modalities are important both for prevention and after diagnosis.

Dr. Nate Pennell: And one of the things you just mentioned is that most of the studies looking at integrative oncology and GI cancers have focused on colorectal cancer, which of course, is the most common GI cancer. But you also have pointed out that there are gaps in research and what's going on and what needs to be done in order to broaden some of this experience to other GI cancers.

Dr. Chloe Atreya: Yeah, and I will say that there are gaps even for colorectal cancer. So right now, some of the authors on the article are collaborating on a textbook chapter for the Society for Integrative Oncology. And so, we're again examining the evidence specifically for colorectal cancer and are in agreement that the level of evidence specific to colorectal cancer is not as high as it is for all patients with adult cancers. And so even colorectal cancer we need to study more.

Just as there are different phases of cancer where treatments may need to be tailored, we also may need to tailor our treatments for different cancer types. And that includes what symptoms the patients are commonly experiencing and how intense the treatment is, and also the duration of treatment. Those are factors that can influence which modalities may be most important or most applicable to a given individual.

Dr. Nate Pennell: So, a lot of this sounds fantastic. It sounds like things that a lot of patients would really appreciate working into their care. Your article focused a little bit on some of the logistics of providing this type of care, including group medical visits, multidisciplinary clinics staffed by multiple types of clinicians, including APPs and psychologists, and talked about the sustainability of this in terms of increasing the uptake of guideline-based integrative oncology. Talk a little bit more about both at your institution, I guess, and the overall health system and how this might be both sustainable and perhaps how we broaden this out to patients outside of places like UCSF.

Dr. Chloe Atreya: Yes, that's a major focus of our research effort. A lot of comprehensive cancer centers and other places where patients are receiving care, people may have access to dietitians, which is really important and nutritionists. In the article we also provide resources for working with exercise therapists and those are people who may be working remotely and can help people, for instance, who may be in, in rural areas. And then our focus with the mind-body practices in particular has been on group medical visits. And this grew out of, again, my ‘being present’ pilot studies where we were showing some benefit. But then when the grant ends, there isn't a way to continue to deliver this care. And so, we were asking ourselves, you know, is there a way to make this sustainable? And group medical visits have been used in other settings, and they've been working really well at our institution and other institutions are now taking them up as well. And this is a way that in this case it's me and many of my colleagues who are delivering these, where I can see eight or ten patients at once. In my case, it's a series of four two-hour sessions delivered by telehealth. So, we're able to focus on the integrative practices in a way that's experiential. So, in the clinic I may be able to mention, you know, after we go over the CT scans, after we go over the labs and the molecular profiling, you know, may be able to say, “Hey, you know, meditation may be helpful for your anxiety,” but in the group medical visits we can actually practice meditation, we can practice chair yoga. And that's where people have that experience in their bodies of these different modalities. And the feedback that we're receiving is that that sticks much more to experience it then you have resources to continue it. And then the group is helpful both in terms of delivery, so timely and efficient care for patients. It's also building community and reducing the social isolation that many of our patients undergoing treatment for cancer experience.

Dr. Nate Pennell: I think that makes perfect sense, and I'm glad you brought up telehealth as an option. I don't know how many trained integrative oncologists there are out there, but I'm going to guess this is not a huge number out there. And much like other specialties that really can improve patients’ quality of life, like palliative medicine, for example, not everyone has access to a trained expert in their cancer center, and things like telemedicine and telehealth can really potentially broaden that. How do you think telehealth could help broaden the exposure of cancer patients and even practitioners of oncology to integrative medicine?

Dr. Chloe Atreya: Yes, I think that telehealth is crucial for all patients with cancer to be able to receive comprehensive cancer care, no matter where they're receiving their chemotherapy or other cancer-directed treatments. So, we will routinely be including patients who live outside of San Francisco. Most of our patients live outside of San Francisco. There's no way that they could participate if they had to drive into the city again to access this. And in the group setting, it's not even safe for people who are receiving chemotherapy to meet in a group most times. And with symptoms, often people aren't feeling so well and they're able to join us on Zoom in a way that they wouldn't be able to make the visit if it was in person. And so, this has really allowed us to expand our catchment area and to include patients, in our case, in all of California. You also mentioned training, and that's also important. So, as someone who's involved in the [UCSF] Osher Collaborative, there are faculty scholars who are at universities all over the US, so I've been able to start training some of those physicians to deliver group medical visits at their sites as well via telehealth.

Dr. Nate Pennell: I'm glad we were able to make a plug for that. We need our political leadership to continue to support reimbursement for telehealth because it really does bring access to so many important elements of health care to patients who really struggle to travel to tertiary care centers. And their local cancer center can be quite a distance away.

So, sticking to the theme of training, clinician education and resources are really crucial to continue to support the uptake of integrative oncology in comprehensive cancer care. Where do you think things stand today in terms of clinician education and professional development in integrative oncology.

Dr. Chloe Atreya: It's growing. Our medical students now are receiving training in integrative medicine, and making a plug for the Educational Book, I was really happy that ASCO let us have a table that's full of hyperlinks. So that's not typical for an article. Usually, you have to go to the reference list, but I really wanted to make it practical and accessible to people, both the resources that can be shared with patients that are curated and selected that we thought were of high-quality examples for patients. At the bottom of that table also are training resources for clinicians, and some of those include: The Center for Mind-Body Medicine, where people can receive training in how to teach these mind-body practices; The Integrated Center for Group Medical Visits, where people can learn how to develop their own group medical visits; of course, there's the Society for Integrative Oncology; and then I had just mentioned the Osher Collaborative Faculty Fellowship.

Dr. Nate Pennell: Oh, that is fantastic. And just looking through, I mean, this article is really a fantastic resource both of the evidence base behind all of the elements that we've discussed today. Actually, the table that you mentioned with all of the direct hyperlinks to the resources is fantastic. Even recommendations for specific dietary changes after GI cancer diagnosis. So, I highly recommend everyone read the full paper after they have listened to the podcast today.

Before we wrap up, is there anything that we didn't get a chance to discuss that you wanted to make sure our listeners are aware of?

Dr. Chloe Atreya: One thing that I did want to bring up is the disparities that exist in access to high quality symptom management care. So, patients who are racial and ethnic minorities, particularly our black and Latinx patients, the evidence shows that they aren't receiving the same degree of symptom management care as non-Hispanic White patients. And that is part of what may be leading to some of the disparities in cancer outcomes. So, if symptoms are poorly managed, it's harder for patients to stay with the treatment, and integrative oncology is one way to try to, especially with telehealth, this is a way to try to improve symptom management for all of our patients to help improve both their quality of life and their cancer outcomes.

Dr. Nate Pennell: Well, Dr. Atreya, it's been great speaking with you today and thank you for joining me on the ASCO Education: By the Book Podcast and thank you for all of your work in advancing integrative oncology for GI cancers and beyond.

Dr. Chloe Atreya: Thank you, Dr. Pennell. It's been a pleasure speaking with you.

Dr. Nate Pennell: And thank you to all of our listeners who joined us today. You'll find a link to the article discussed today in the transcript of the episode. We hope you'll join us again for more insightful views on topics you'll be hearing at the Education Sessions from ASCO meetings throughout the year and our deep dives on approaches that are shaping modern oncology.

Disclaimer:

The purpose of this podcast is to educate, educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Disclosures:

Dr. Nate Pennell:

Consulting or Advisory Role: AstraZeneca, Lilly, Cota Healthcare, Merck, Bristol-Myers Squibb, Genentech, Amgen, G1 Therapeutics, Pfizer, Boehringer Ingelheim, Viosera, Xencor, Mirati Therapeutics, Janssen Oncology, Sanofi/Regeneron

Research Funding (Institution): Genentech, AstraZeneca, Merck, Loxo, Altor BioScience, Spectrum Pharmaceuticals, Bristol-Myers Squibb, Jounce Therapeutics, Mirati Therapeutics, Heat Biologics, WindMIL, Sanofi

Dr. Chloe Atreya:

Consulting or Advisory Role: Roche Genentech, Agenus

Research Funding (Institution): Novartis, Merck, Bristol-Myers Squibb, Guardant Health, Gossamer Bio, Erasca, Inc.

View Details

On the inaugural episode of ASCO Education: By the Book, Dr. Nathan Pennell and Dr. Don Dizon share reflections on the evolution of the ASCO Educational Book, its global reach, and the role of its new companion podcast to further shine a spotlight on the issues shaping the future of modern oncology.

TRANSCRIPT

Dr. Nathan Pennell: Hello, I'm Dr. Nate Pennell, welcoming you to the first episode of our new podcast, ASCO Education: By the Book. The podcast will feature engaging discussions between editors and authors from the ASCO Educational Book. Each month, you'll hear nuanced views on key topics in oncology featured in Education Sessions at ASCO meetings, as well as some deep dives on the advances shaping modern oncology. Although I am honored to serve as the editor-in-chief (EIC) of the ASCO Educational Book, in my day job, I am the co-director of the Cleveland Clinic Lung Cancer Program and vice chair for clinical research for the Taussig Cancer Center here in Cleveland.

I'm delighted to kick off our new podcast with a discussion featuring the Ed Book's previous editor-in-chief. Dr. Don Dizon is a professor of medicine and surgery at Brown University and works as a medical oncologist specializing in breast and pelvic malignancies at Lifespan Cancer Institute in Rhode Island. Dr. Dizon also serves as the vice chair for membership and accrual at the SWOG Cancer Research Network.

Don, it's great to have you here for our first episode of ASCO Education: By the Book.

Dr. Don Dizon: Really nice to be here and to see you again, my friend.

Dr. Nathan Pennell: This was the first thing I thought of when we were kicking off a podcast that I thought we would set the stage for our hopefully many, many listeners to learn a little bit about what the Ed Book used to be like, how it has evolved over the last 14 years or so since we both started here and where it's going. You started as editor-in-chief in 2012, is that right?

Dr. Don Dizon: Oh, boy. I believe that is correct, yes. I did two 5-year stints as EIC of the Educational Book, so that sounds about right. Although you're aging me very clearly on this podcast.

Dr. Nathan Pennell: I had to go back in my emails to see if I could figure out when we started on this because we've been working on it for some time. Start out a little bit by telling me what do you remember about the Ed Book from back in the day when you were applying to be editor-in-chief and thinking about the Ed Book. What was it like at that time?

Dr. Don Dizon: You know, it's so interesting to think about it. Ten years ago, we were both in a very different place in our careers, and I remember when the Ed Book position came up, I had been writing a column for ASCO. I had done some editorial activities with other journals for sure, but what always struck me was it was very unclear how one was chosen to be a part of the education program at ASCO. And then it was very unclear how those faculty were then selected to write a paper for the Educational Book. And it was back in the day when the Educational Book was completely printed. So, there was this book that was cherished among American fellows in oncology. And it was one that, when I was newly attending, and certainly two or three years before the editor's position came up, it was one that I referenced all the time.

So, it was a known commodity for many of us. And there was a certain sense of selectivity about who was invited to write in it. And it wasn't terribly transparent either. So, when the opportunity to apply for editor-in-chief of the Educational Book came up, I had already been doing so much work for ASCO. I had been on the planning committees and served in many roles across the organization, and editing was something I found I enjoyed in other work. So, I decided to put my name in the ring with the intention of sort of bringing the book forward, getting it indexed, for example, so that there was this credit that was more than just societal credit at ASCO. This ended up being something that was referenced and acknowledged as an important paper through PubMed indexing. And then also to provide it as a space where we could be more transparent about who was being invited and broadening the tent as to who could participate as an author in the Ed Book.

Dr. Nathan Pennell: It's going to be surprising to many of our younger listeners to learn that the Educational Book used to be just this giant, almost like a brick. I mean, it was this huge tome of articles from the Education Sessions that you got when you got your meeting abstracts book at the annual meeting. And you can always see people on the plane on the way out of Chicago with their giant books.

Dr. Don Dizon: Yes.

Dr. Nathan Pennell: That added lots of additional weight to the plane, I'm sure, on the way out.

Dr. Don Dizon: And it was not uncommon for us to be sitting at an airport, and people would be reading those books with highlighters.

Dr. Nathan Pennell: I fondly remember being a fellow and coming up and the Ed Book was always really important to me, so I was excited. We'll also let the listeners in on that. I also applied to be the original editor-in-chief of the Ed Book back in 2012, although I was very junior and did not have any real editorial experience. I think I may have been section editor for The Oncologist at that point. And I had spoken to Dr. Ramaswamy Govindan at WashU who had been the previous editor-in-chief about applying and he was like, “Oh yeah. You should absolutely try that out.” And then when Dr. Dizon was chosen, I was like, “Oh, well. I guess I didn't get it.” And then out of the blue I got a call asking me to join as the associate editor, which I was really always very thankful for that opportunity.

Dr. Don Dizon: Well, it was a highly fruitful collaboration, I think, between you and I when we first started. I do remember taking on the reins and sort of saying, “You know, this is our vision of what we want to do.” But then just working with the authors, which we did, about how to construct their papers and what we were looking for, all of that is something I look back really fondly on.

Dr. Nathan Pennell: I think it was interesting too because neither one of us had really a lot of transparency into how things worked when we started. We kind of made it up a little bit as we went along. We wanted to get all of the faculty, or at least as many of them as possible contributing to these. And we would go to the ASCO Education Committee meeting and kind of talk about the Ed Book, and we were thinking about, you know, how could we get people to submit. So, at the time it wasn't PubMed indexed. Most people, I think, submitted individual manuscripts just from their talk, which could be anywhere from full length review articles to very brief manuscripts.

Dr. Don Dizon: Sometimes it was their slides with like a couple of comments on it.

Dr. Nathan Pennell: And some of them were almost like a summary of the talk. Yeah, exactly. And so sort of making that a little more uniform. There was originally an honorarium attached, which went away, but I think PubMed indexing was probably the biggest incentive for people to join. I remember that was one of the first things you really wanted to get.

Dr. Don Dizon Yeah. And, you know, it was fortuitous. I'd like to take all the credit for it, but ASCO was very forward thinking with Dr. Ramaswamy and the conversations about going to PubMed with this had preceded my coming in. We knew what we needed to do to get this acknowledged, which was really strengthening the peer review so that these papers could meet the bar to get on PubMed. But you know, within the first, what, two or three years, Nate, of us doing this, we were able to get this accepted. And now it is. If you look at what PubMed did for us, it not only increased the potential of who was going to access it, but for, I think the oncology community, it allowed people access to papers by key opinion leaders that was not blocked by a paywall. And I thought that was just super important at the time. Social media was something, but it wasn't what it is now. But anybody could access these manuscripts and it's still the case today.

Dr. Nathan Pennell: I think it's hard to overstate how important that was. People don't realize this, but the Ed Book is really widely accessed, especially outside the US as well. And a lot of people who can't attend the meeting to get the print, well, the once print, book could actually get access to essentially the education session from the annual meeting without having to fly all the way to the US to attend. Now, you know, we have much better virtual meeting offerings now and whatnot. But at the time it was pretty revolutionary to be able to do that.

Dr. Don Dizon: Yeah, and you know, it's so interesting when I think back to, you know, this sort of evolution to a fully online publication of the Ed Book. It was really some requests from international participants of the annual meeting who really wanted to continue to see this in print. At that time, it was important to recognize that access to information was not uniform across the world. And people really wanted that print edition, maybe not for themselves, but so that access in more rural areas or where access in the broadband networks were not established that they still could access the book. I think things have changed now. We were able, I think, in your tenure, to see it fully go online. But even I just remember that being a concern as we went forward.

Dr. Nathan Pennell: Yeah, we continued with the print book that was available if people asked for it, but apparently few enough people asked for it that it moved fully online. One of the major advantages of being fully online now is of course, it does allow us to publish kind of in real time as the manuscripts come out in the months leading up to the meeting, which has been, I think, a huge boon because it can build momentum for the Education Sessions coming in. People, you know, really look forward to it.

Dr. Don Dizon: Yeah, that was actually a concern, you know, when we were phasing out Ed Book and going to this continuous publication model where authors actually had the ability to sort of revise their manuscript and that would be automatically uploaded. You had a static manuscript that was fully printed, and it was no longer an accurate one. And we did have the ability to fix it. And it just goes to show exactly what you're saying. This idea that these are living papers was really an important thing that ASCO embraced quite early, I think.

Dr. Nathan Pennell: And with the onset of PubMed indexing, the participation from faculty skyrocketed and almost within a couple of years was up to the vast majority of sessions and faculty participating. Now I think people really understand that this is part of the whole process. But at the time I remember writing out on my slides in all caps, “THIS IS AN EXPECTATION.” And that's about the best word I could give because I asked if we could make people do it, and they were like, no, you can't make people do it.

Dr. Don Dizon: So right. Actually, I don't think people are aware of the work on the back end every year when I was on as EIC, Nate and myself, and then subsequently Dr. Hope Rugo would have these informational sessions with the education faculty and we would tout the Ed Book, tout the expectation, tout it was PubMed indexed and tout multidisciplinary participation. So, we were not seeing four manuscripts reflecting one session. You know, this encouragement to really embrace multidisciplinary care was something that very early on we introduced and really encouraged people not to submit perspective manuscripts, but to really get them in and then harmonize the paper so that it felt like it was, you know, one voice.

Dr. Nathan Pennell: I consider that after PubMed indexing, the next major change to the Ed Book, that really made it a better product and that was moving from, you know, just these short individual single author manuscripts to single session combined manuscript that had multiple perspectives and topics, really much more comprehensive review articles. And I don't even remember what the impetus was for that, but it was really a success.

Dr. Don Dizon: Yeah, I mean, I think in the beginning it was more of a challenge, I think, because people were really not given guidance on what these papers were supposed to look like. So, we were seeing individual manuscripts come forward. Looking back, it really foreshadowed the importance of multidisciplinary management. But at the time, it was really more about ensuring that people were leaving the session with a singular message of what to do when you're in clinic again. And the goal was to have the manuscripts reflect that sort of consensus view of a topic that was coming in. There were certain things that people still argued would not fit in a multidisciplinary manuscript. You know, if you have someone who's writing and whose entire talk was on the pathology of thyroid cancer. Another topic was on survivorship after thyroid cancer. It was hard to sort of get those two to interact and cover what was being covered. So, we were still getting that. But you're right, at the end of my tenure and into yours, there were far fewer of those individual manuscripts.

Dr. Nathan Pennell: And I think it's even made it easier to write because now, you know, you just have to write a section of a manuscript and not put together an entire review. So, it has helped with getting people on board.

Dr. Don Dizon: Well, the other thing I thought was really interesting about the process is when you're invited to do an Education Session at ASCO, you're either invited as a faculty speaker or as the chair of the session. And the responsibility of the chair is to ensure that it flows well and that the talks are succinct based on what the agenda or the objectives were as defined by the education committee for that specific group. But that was it. So really being named “Chair” was sort of an honor, an honorific. It really didn't come with responsibility. So, we use the Ed Book as a way to say, “As chair of the session, it is your responsibility to ensure A, a manuscript comes to me, but B, that the content of that paper harmonizes and is accurate.” And it was very rare, but Nate, I think we got dragged into a couple of times where the accuracy of the manuscript was really called into question by the chair. And those were always very, very tricky discussions because everyone that gets invited to ASCO is a recognized leader in their field.

Some of us, especially, I would probably say, dating back 10 years from today, the data behind Standards of Care were not necessarily evidence-based. So, there were a lot of opinion-based therapies. You know, maybe not so much in the medical side, but certainly some of it. But when you went to, you know, surgical treatments and maybe even radiotherapy treatments, it was really based on, “My experience at my center is this and this is why I do what I do.” But those kinds of things ended up being some of the more challenging things to handle as an editor.

Dr. Nathan Pennell: And those are the– I'll use “fun” in a broad sense. You know, every once in a while, you get an article where it really does take a lot of hands-on work from the editor to work with the author to try to revise it and make it a suitable academic manuscript. But you know what? I can't think, at least in recent years, of any manuscripts that we turned down. They just sometimes needed a little TLC.

Dr. Don Dizon: Yeah. And I think the other important thing it reminds me of is how great it was that I wasn't doing this by myself. Because it was so great to be able to reach out to you and say, “Can you give me your take on this paper?” Or, “Can you help me just join a conference call with the authors to make sure that we're on the same page?” And then on the rare example where we were going to reject a paper, it was really important that we, as the editorial team, and I include our ASCO shepherder, through the whole process. We had to all agree that this was not salvageable. Fortunately, it happened very rarely. But I’ve got to say, not doing this job alone was one of the more important facets of being the EIC of ASCO's Educational Book.

Dr. Nathan Pennell: Well, it's nice to hear you say that. I definitely felt that this was a partnership, you know, it was a labor of love.

So, I want to go to what I consider sort of the third major pillar of the changes to the Ed Book during your tenure, and that was the introduction of a whole new kind of manuscript. So up to, I don't know, maybe seven or eight years ago, all the articles were authored just by people who were presenting at the Annual Meeting. And then you had an idea to introduce invited manuscripts. So take me through that.

Dr. Don Dizon: Yeah, well, you know, again, it went to this sort of, what can people who are being asked to sort of lead ASCO for that year, what can they demonstrate as sort of a more tangible contribution to the Society and to oncology in general? And I think that was the impetus to use the Ed Book for everyone who was in a leadership position to make their mark. That said, I was here, and I was either president of the society or I was Education Program Chair or Scientific Program Chair, and they got to select an article type that was not being covered in the annual meeting and suggest the authors and work with those authors to construct a manuscript. Never did any one of those folks suggest themselves, which I thought was fascinating. They didn't say, “I want to be the one to write this piece,” because this was never meant to be a presidential speech or a commemorative speech or opportunity for them as leaders. But we wanted to ensure that whatever passion they had within oncology was represented in the book.

And again, it was this sort of sense of, I want everyone to look at the Ed Book and see themselves in it and see what they contributed. And that was really important for those who were really shepherding each Annual Meeting each year for ASCO that they had the opportunity to do that. And I was really pleased that leadership really took to that idea and were very excited about bringing ideas and also author groups into the Educational Book who would not have had the opportunity otherwise. I thought that was just really nice. It was about inclusiveness and just making sure that people had the opportunity to say, “If you want to participate, we want you to participate.”

Dr. Nathan Pennell: Yeah, I agree. I think the ASCO leadership jumped on this and continues to still really appreciate the opportunity to be able to kind of invite someone on a topic that's meaningful to them. I think we've tried to work in things that incorporate the presidential theme each year in our invited manuscript, so it really allows them to put kind of a stamp on the flavor of each edition. And the numbers reflect that these tend to be among our more highly read articles as well.

Dr. Don Dizon: You know, looking back on what we did together, that was something I'm really, really quite proud of, that we were able to sort of help the Educational Book evolve that way.

Dr. Nathan Pennell: I agree. You brought up briefly a few minutes ago about social media and its role over time. I think when we started in 2012, I had just joined Twitter now X in 2011, and I think we were both sort of early adopters in the social media. Do you feel like social media has had a role in the growth of the Ed Book or is this something that you think we can develop further?

Dr. Don Dizon: When we were doing Ed Book together, professional social media was actually a quite identified space. You know, we were all on the same platform. We analyzed what the outcomes were on that platform and our communities gathered on that platform. So, it was a really good place to highlight what we were publishing, especially as we went to continuous publishing. I don't remember if it was you or me, but we even started asking our authors for a tweet and those tweets needed work. It was you. It was you or I would actually lay in these tweets to say, “Yeah, we need to just, you know, work on this.” But I think it's harder today. There's no one preferred platform. Alternate platforms are still evolving. So, I think there are opportunities there. The question is: Is that opportunity meaningful enough for the Ed Book to demonstrate its return on an investment, for example?

What I always thought about social media, and it's still true today, is that it will get eyes on whatever you're looking at far beyond who you intended to see it. So, you know, your tweets regarding a phase 3 clinical trial in lung cancer, which were so informative, were reaching me, who was not a lung oncologist who doesn't even see lung cancer and getting me more interested in finding that article and more and more pointing to the Educational Book content that speaks to that piece, you know. And I think coupling an impression of the data, associating that with something that is freely accessed is, I think, a golden opportunity not only for our colleagues, but also for anyone who's interested in a topic. Whether you are diagnosed with that cancer or you are taking care of someone with that cancer, or you heard about that cancer, there are people who would like to see information that is relevant and embedded and delivered by people who know what they're talking about. And I think our voices on social media are important because of it. And I think that's where the contribution is. So, if we had to see what the metric was for any social media efforts, it has to be more of the click rates, not just by ASCO members, but the click rates across societies and across countries.

Dr. Nathan Pennell: Yeah, social media is, I mean, obviously evolving quite a bit in the last couple of years. But I do know that in terms the alt metrics for the track access through social media and online, the ones that are shared online by the authors, by the Ed Book team, do seem to get more attention. I think a lot of people don't like to just sit with a print journal anymore or an email table of contents for specific journals. People find these articles that are meaningful to them through their network and oftentimes that is online on social media.

Dr. Don Dizon: Yes, 100%. And you know what I think we should encourage people to do is look at the source. And if the Ed Book becomes a source of information, I think that will be a plus to the conversations in our world. We're still dealing with a place where, depending on who sponsored the trial, whether it was an industry-sponsored trial, whether it was NCI sponsored or sponsored by the National Institutes of Health, for example, access to the primary data sets may or may not be available across the world, but the Ed Book is. And if the Ed Book can summarize that data and use terms and words that are accessible no matter what your grade level of education is. If we can explain the graphs and the figures in a way that people can actually easily more understand it. If there's a way that we structure our conversations in the Ed Book so that the plethora of inclusion/exclusion criteria are summarized and simplified, then I think we can achieve a place where good information becomes more accessible, and we can point to a summary of the source data in places where the source is not available.

Dr. Nathan Pennell: One of the other things that I continue to be surprised at how popular these podcasts are. And that gives you an opportunity pretty much the opposite. Instead of sort of a nugget that directs you to the source material, you've got a more in-depth discussion of the manuscript. And so, I'm delighted that we have our own podcast. For many years, the Ed Book would sort of do a sort of a “Weird Al takeover” of the ASCO Daily News Podcast for a couple of episodes around the Annual Meeting, and I think those were always really popular enough that we were able to argue that we deserved our own podcast. And I'm really looking forward to having these in-depth discussions with authors.

Dr. Don Dizon: It's an amazing evolution of where the Ed Book has gone, right? We took it from print only, societally only, to something that is now accessed worldwide via PubMed. We took it from book to fully online print. And now I think making the content live is a natural next step. So, I applaud you for doing the podcast and giving people an opportunity actually to discuss what their article discusses. And if there's a controversial point, giving them the freedom and the opportunity to sort of give more nuanced views on what may not be something that there's 100% consensus over.

Dr. Nathan Pennell: Yes. Well, I hope other people enjoy these as well.

Just want to highlight a few of the things that have happened just in the couple years since you stepped down as editor-in-chief. One of them, and I don't know if you noticed, but last year we started adding manuscripts from the ASCO thematic meetings, so ASCO GI and ASCO GU, something we had certainly talked about in the past, but had lacked bandwidth to really do. And they seem to be pretty widely accessed.

Dr. Don Dizon: That's fantastic. Yes, I do remember talking about the coverage of the thematic meetings and you're right, this takes a long time to sort of concentrate on the Annual Meeting. It may seem like everything happens in the span of like eight weeks.

Dr. Nathan Pennell: It does feel like that sometimes.

Dr. Don Dizon: Right? But this is actually something that starts a year before, once the education program is set. We're in the room when they set it. But then it's really chasing down manuscripts and then making sure that they're peer reviewed because the peer review is still really important, and then making sure that any revisions are made before it's finalized and goes to press. That is a many months process. So, when we're trying to introduce, “Oh, we should also do ASCO GU or-,” the question was, how do you want to do that given this very, very involved process going forward? So, I'm glad you were able to figure it out.

Dr. Nathan Pennell: Well, it's challenging. I don't think people realize quite the compressed timeline for these. You know, the Education Session and authors and invited faculty are picked in the fall, and then basically you have to start turning in your manuscripts in February, March of the following year. And so, it's a really tight turnaround for this. When we talk about the ASCO thematic meetings, it's an even tighter window.

Dr. Don Dizon: Right, exactly.

Dr. Nathan Pennell: And so, it's challenging to get that moving, but I was really, really proud that we were able to pull that off.

Dr. Don Dizon: Well, congratulations again. And I think that is a necessary step, because so much of what's going on in the various disease management sites is only covered cursorily through the Annual Meeting itself. I mean, there's just so much science breaking at any one time that I think if we want to comprehensively catalog the Year in Review in oncology, it kind of behooves us to do that.

Dr. Nathan Pennell: Some other things that are coming up because we now have manuscripts that are going to be coming in year-round, and just to kind of make it easier on the editorial staff, we're going to be forming an editorial board. And in addition to our pool of reviewers who get ASCO points, please feel free to go online to the ASCO volunteer portal and sign up if you are interested in participating. So, moving forward, I'm really excited to see where things are going to go.

Dr. Don Dizon: Well, that's great. That's great. And I do remember talking about whether or not we needed to have an editorial board. At least when I was there, having this carried by three people was always better than having it carried by one person. And I think as you expand the potential for submissions, it will be very helpful to have that input for sure. And then it gives another opportunity for more members to get involved in ASCO as well.

Dr. Nathan Pennell: Absolutely. People want involvement, and so happy to provide that.

Dr. Don Dizon: Yes.

Dr. Nathan Pennell: Is there anything we didn't cover that you would like to mention before we wrap up?

Dr. Don Dizon: Well, I will say this, that ASCO and through its publications not only has had this real emphasis on multidisciplinary management of cancers, especially where it was relevant, but it also always had a stand to ensure representation was front and center and who wrote for us. And I think every president, every chair that I've worked with naturally embraced that idea of representation. And I think it has been a distinct honor to say that during my tenure as EIC, we have always had a plethora of voices, of authors from different countries, of genders, that have participated in the construction of those books. And it stands as a testament that we are a global community and we will always be one.

Dr. Nathan Pennell: Well, thank you for that. And I'm happy to continue that as we move forward.

Well, Don, thank you. It's been great speaking with you. You played such a pivotal role in the Ed Book’s evolution and I'm so glad you were able to join me for our inaugural episode.

Dr. Don Dizon: Well, I'm just tickled that you asked me to be your first guest. Thank you so much, Nate.

Dr. Nathan Pennell: And I also want to thank our listeners for joining us today. We hope you'll join us again for more insightful views on topics you'll be hearing at the Education Sessions from ASCO meetings throughout the year, as well as our periodic deep dives on advances that are shaping modern oncology. Have a great day.

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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Disclosures:

Dr. Nathan Pennell:    

Consulting or Advisory Role: AstraZeneca, Lilly, Cota Healthcare, Merck, Bristol-Myers Squibb, Genentech, Amgen, G1 Therapeutics, Pfizer, Boehringer Ingelheim, Viosera, Xencor, Mirati Therapeutics, Janssen Oncology, Sanofi/Regeneron   

Research Funding (Inst): Genentech, AstraZeneca, Merck, Loxo, Altor BioScience, Spectrum Pharmaceuticals, Bristol-Myers Squibb, Jounce Therapeutics, Mirati Therapeutics, Heat Biologics, WindMIL, Sanofi

Dr. Don Dizon:

Stock and Other Ownership Interests: Midi, Doximity

Honoraria: UpToDate, American Cancer Society

Consulting or Advisory Role: AstraZeneca, Clovis Oncology, Kronos Bio, Immunogen

Research Funding (Institution): Bristol-Myers Squibb

View Details

Resources such as facilities, equipment, medications, and trained healthcare professionals are essential to provide proper care. Yet, many areas in the US and around the globe have challenges providing some of such resources. This ASCO Education podcast will explore oncology practice in low resource settings. Dr. Thierry Alcindor, a medical oncologist at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, Dr. Richard Ingram, a Medical Oncologist at Shenandoah Oncology in Winchester, Virginia, and Chair of the Appalachian Community Cancer Alliance and Dr. Sana Al Sukhun, an Adjunct Professor of Medical Oncology and Director of Oncology Practice at Al-Hayat Medical Center in Jordan will discuss the barriers they face providing cancer care in low resource areas in the US (1:48) and Jordan (11:52) and the one challenge that is key to solve in order for proper treatment to be administered in the US (29:07) and Jordan (31:42).

Speaker Disclosures Dr. Sana A. Al-Sukhun: Honoraria – Novartis; Speakers' Bureau – Novartis, Roche, Pfizer; Travel, Accommodations, Expenses – Roche, BMS Dr. Richard Ingram: None Dr. Thierry Alcindor: Consulting or Advisory – Merck, Bayer, BMS, Astra Zeneca, Astellas Scientific and Medical Affairs Inc.; Research Funding – Epizyme, EMD Serono, Karyopharm Therapeutics, Springworks, Astellas Pharma, Deciphera

Resources If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Dr. Thierry Alcindor: Hello, dear ASCO audience, welcome to this episode of the ASCO Education podcast. Today, we will examine practicing oncology in a low-resource setting. Managing cancer patients is a multifaceted challenge. Resources such as facilities, equipment, medications, and trained healthcare professionals are essential to provide proper care. Yet, many areas in the US and around the globe have challenges providing some of such resources.

I'm Dr. Thierry Alcindor. I'm a medical oncologist at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston. Joining us are Dr. Richard Ingram, a Medical Oncologist at Shenandoah Oncology in Winchester, Virginia, and Chair of the Appalachian Community Cancer Alliance. He is, as well, the current president of the Virginia State Oncology Society. We are also very pleased to be joined by Dr. Sana Al Sukhun. She is an Adjunct Professor of Medical Oncology and Director of Oncology Practice at Al-Hayat Medical Center in Jordan. She is also the past president of the Jordanian Oncology Society.

So, I'll begin with Dr. Ingram. You have experience with patients in the Appalachian region of the US by practicing medical oncology in rural northwestern Virginia for the past 25 years. Can you describe this unique region for our listeners and detail some of the challenges you face when providing care there?

Dr. Richard Ingram: I have been practicing here in Northwestern Virginia for the past 25-ish years, and have seen over time barriers to care that I think could be applied anywhere. And, I think we'll hear some interesting stories today from our colleague from Jordan also, in that regard.

The main barriers I think are somewhat slightly stereotypical but real where I am. There is a diverse population here, meaning a big geographic area and a somewhat underpopulated area. So, resources are scattered and scarce sometimes and located in concentrated areas. So, patients have difficulty with access to cancer screening, imaging, and sometimes downstream or tertiary care where I am. I have patients that will travel an hour and a half to two hours one way i.e., a three to four-hour round trip - sometimes over some difficult terrain, meaning some difficult roads out our way, both with mountains and some geographic challenges just to get to us. You can imagine the difficulty that is with either coordination of care with a multidisciplinary patient having to see multiple providers or more practically, a patient receiving radiotherapy on a daily basis. And, this not only is time but money because you're trying to make a decision about follow-up appointments and missing work at an hourly wage versus working that week and paying your bills.

I have patients currently who are working around that. I have several concurrent chemo-radiotherapy patients - currently, actually two I saw this morning - in clinic, both of which live in a town called Petersburg, West Virginia, which is about an hour and 45 minutes one way. So, three and a half hours from us. And, we've had to connect them appropriately with resources around transportation to make sure they stay compliant with their care.

You have this empathy and drive to care for patients and try to apply the same care you would across the continuum. That socioeconomic status is not unique to Appalachia but I think is somewhat emblematic in our area - lovely, hardworking people and diligent in their craft. But, when you have barriers such as cancer diagnosis and now superimposed strain and stress on your family life and work life, it can throw things out of balance.

A similar patient of mine that I saw today actually in clinic, same area, same concurrent diagnosis, their big access issue is that they're also the primary caregiver for some grandchildren that are staying at home. They've taken in their grandchildren and, not unique to Appalachia, but somewhat in that we have a lot of multigenerational families living together. So, you're trying to help that person get through their therapy and still be the homemaker for grandchildren and try to battle their cancer diagnosis and at the same time not bankrupt them financially from a socioeconomic standpoint.

Dr. Thierry Alcindor: What's the insurance coverage pattern like?

Dr. Richard Ingram: In my area, about half to 60% of our patients are on either uninsured or they are on public insurance, whether that be Medicare or state Medicaid or exchange programs. From the private sector, there are private plans, but a lot of those are self-funded, meaning they are local municipalities, teachers' unions, first responders, and then a small pocket of what you and I would call traditional commercial insurance coverage.

And so, for us, we for a lot of our patients have built relationships, for instance, we know this gastrointestinal group will take that insurance of a Medicaid or uninsured patient and this one won't, or vice versa. So, there is some fragmentation of care if you're not very conscious and deliberate at the medical oncology and radiation oncology side, which is in my practice about making sure the patient can get access to care.

Dr. Thierry Alcindor: I understand. So you talked about the lack of adequate or complete primary care coverage. Do you have enough medical oncologists?

Dr. Richard Ingram: Excellent question. I appreciate that. Yes. So we do, in that my group does and my region does. So we are very strong, as I like to say, the end of the funnel. You know, I consider cancer care screening a funnel you've got to screen through. I imagine you have a giant funnel of trying to screen through patients for the screening program appropriately and then the positive screens come out at the end of the funnel.

At the end of the funnel, we can receive these patients and take care of them and provide all of the touch points of surgical, radiation, medical oncology, genetic counseling, survivorship. My biggest passion and what I've tried to do in the Appalachian Community Cancer Alliance is raise awareness on the screening and getting the screening activities out into these rural communities so we can get stage migration to an earlier stage of cancer. Still take care of the people who develop positive screens and downstream disease, obviously, but it'd be nice to start getting stage migration to the left, meaning to earlier stages for patients.

What we really have out here is a lack of primary care doctors and stability of primary care doctors because it's a very difficult area to practice primary care with geography, very difficult area, with the payer mix and the socioeconomic status, and a difficult area for people to desire to live in when you're trying to practice primary care, not surrounded by every specialist. A rural primary care provider really has to be, in essence, a true solo practitioner in Appalachia. They have to have a broad skill set because they just don't have a cardiologist sitting next door or a neurosurgeon immediately available.

We have a full complement of surgical oncology specialists, radiation, three-dimensional stereotactic, clinical trials, genetic counseling, eight medical oncologists, a well-equipped ICU, and care. But our catchment area we serve is a geographic radius of two to two and a half hours, of which there's not much in between. There are some rural clinics, some community outposts, some critical access hospitals. And really creating that infrastructure of navigation has been the key success in our area of trying to navigate a patient through the system and trying to support these single clinics or smaller critical access hospitals from afar, support them intellectually with cognitive capabilities over the telephone to help work a consult up and trying to navigate the patient in.

But again, the physical or the geographic, or distance barriers are real, and the socioeconomic barriers are real. Even once we can make a link with the primary care doctor and be more than willing to see the patient, sometimes just physically getting them to us can be a challenge.

Dr. Thierry Alcindor: So what is the Appalachian Community Cancer Alliance doing to improve cancer screening, cancer care outcomes in the region?

Dr. Richard Ingram: Excellent question. So the Appalachian Community Cancer Alliance started organically. So myself, as president of Virginia, got together with other state presidents, West Virginia, Tennessee, South Carolina, North Carolina, Kentucky, and said, “Gosh, what could we do collectively? Or what are our collective issues and problems?” Because we kind of serve a similar population and geography. And out of that was born kind of a homebrewed alliance, which formalizes the Appalachian Community Cancer Alliance.

And I want to kind of just start with a quick story, and then I'll explain where we launched. I had a patient that really resonates with me personally. So it was a patient I met in the emergency room, happened to actually be kind of mid-pandemic. I was on call, very nice patient, presented with severe dyspnea orthopnea platypnea, came to the ER, had a large pleural effusion lung mass, medial spinal mass, worked them up, ended up being metastatic non-small cell lung cancer stage IV. Got them plugged into treatment and took care of them.

And then when I had a moment, I went back through their files as we usually do when we're taking a history and I had noticed that they had had a low-dose chest CT several years earlier at a community center out in their rural area of West Virginia. And I asked the patient about it and he kind of recalled getting the CAT scan. But bottom line, the area had set up a screening program but had not set up an actual mechanism or a flow of navigation. And/or if they had, the patient was unaware. So basically, the patient dutifully went through a screening program. There was the pandemic, there was a turnover of staff and it wasn't the patient was forgotten, but the patient never got navigated to work things up. And lo and behold, that positive low-dose CT screen turned into stage four cancer years later.

So I wanted to focus on cancers we could make an intervention with in Appalachia and what was formed was called the Lung Cancer Screening Task Force. That was our first successful endeavor of the alliance. So this task force was formed after about a year and a half or so of work of the states I mentioned. It has become its own task force that reports to the alliance and we're very proud of it because it has been recognized in President Biden and Jill Biden's Moonshot Initiative for Cancer. It's actually obtained funding and we've worked backward to work on a navigation program as well as screening in the most underserved and lowest-screened areas in Appalachia.

Dr. Thierry Alcindor: Well, that sounds exciting. Like, I feel that there is a nice infrastructure as well as projects coming along and I'm quite eager to hear from Dr. Al Sukhun whose practice is based in Jordan.

Dr. Alsukhun, in 2022 you gave a presentation where you highlighted how low-income countries had experienced greater increases in breast cancer incidence and mortality compared to high-income countries in the last decade. What challenges are patients and doctors facing and what should be prioritized?

Dr. Sana Al Sukhun: Interesting question. First, thank you so much for inviting me to take part in this very interesting discussion. Pleasure to join, listen, learn, and reflect.

Indeed, I've enjoyed listening to Dr. Ingram very much. He was speaking about his area and indeed discussing most of the issues, believe it or not, we face in different parts of the world referred to as countries with limited resources. When you refer to limited resource environments or countries, you're really referring to two different types of limited resources: very low-income countries or middle-income countries. The challenges are a bit different. The first challenge we generally face is access to the application of knowledge.

For example, in Jordan, we have access to the knowledge. We have excellent infrastructures, we have an excellent health workforce. The problem is the application of the knowledge, application of what we have learned to help our patients. However, the challenge in different limited resources goes across the theme of a multidisciplinary approach. It starts from prevention, early detection, where, as you mentioned, we are facing a significant increase in the number of cases diagnosed with breast cancer.

The proportion of patients diagnosed with breast cancer in countries of limited resources is 62% of the worldwide new cancer cases. Why do we have such a significant increase in the number of cases? Most countries undergoing what's called socioeconomic transition, they are facing increasing risk factors to develop breast cancer. One of those which is significant not only when it comes to breast cancer but to most kinds of cancers is indeed a significant increase in the proportion of the population suffering from obesity. The highest absolute increase in the prevalence of obesity worldwide over the past couple of decades has been seen in the Middle East, Central Asia and North America. That by itself is a significant risk factor for the development of breast cancer and other long lists of cancers.

In addition, of course, to smoking. For example, last year, unfortunately, and I'm not proud to say Jordan ranked among the highest in terms of smoking prevalence among men in the region. So these two important risk factors, in addition to the westernization of lifestyle, less physical activity, you know, all these risk factors, most important is awareness that these risk factors are important in terms of attributing to cancer. This is not common knowledge across all countries. We do not have enough campaigns across all countries to emphasize the importance of prevention.

Then comes early detection. When it comes to early detection, you know, the challenge is not homogeneous. For example, in Jordan, a couple of decades back, most cases with breast cancer were diagnosed at an advanced stage. Barely one-quarter to one-third of cases were diagnosed at stages I to II. Right now, almost 60% of the cases diagnosed annually are really stage I or II early breast cancer. Thanks to the campaigns from government, non government organizations, NGOs, college society, all people are working together to emphasize the importance of prevention and early detection. That was quite successful in Jordan, and as you can see here almost two-thirds of cases are diagnosed early.

However, contrast that with neighboring countries. I'm referring to Iraq, Sudan, Yemen, and if you notice I'm mentioning countries with conflict. Those countries not only suffer from limited resources but also instability. And when Richard was referring to the access transportation challenge, indeed, we in Jordan treat so many of the patients diagnosed with cancer coming to Jordan seeking treatment from Iraq, from Yemen, from Sudan, that by itself is a challenge. And at the same time, it reflects the status they suffer from, they suffer from lack of health workforce, lack of enough oncologists. Very few, if any, oncologists are available there. And not only you're referring to oncologists, you need pathologists, enough well-trained pathologists, surgeons, radiation oncology service. Those are quite limited when it comes to many of the surrounding countries and many countries actually with limited resources.

For example, in Africa, same challenges, the multidisciplinary approach that's quite vital for the proper treatment of patients with cancer is indeed also lacking in many countries. The infrastructure takes not only having hospitals but also a multidisciplinary workforce.

Then when it comes to treatment, you are faced by a common belief across many cultures that a diagnosis of cancer is equated to a death sentence. Very few, if any, believe that they can be treated from cancer or at least live with cancer in some situations.

With breast cancer, patients with metastatic breast cancer deserve to be treated and can survive for years with excellent quality of life as well, still contributing to their society. Especially more than 50% of patients in countries of limited resources when diagnosed with breast cancer, they are younger than age 55, which is ten years younger than patients diagnosed in countries of high income. So they are still in the prime time of their life. They are needed by their family, their society. That's a huge actual economic impact on society and not only on the family. So these are issues to be tackled, to be emphasized across societies so that they can seek treatment when they have access to it.

Dr. Thierry Alcindor: Can you tell us about access to cancer medicine, whether chemotherapy, targeted therapy, or immunotherapy?

Dr. Sana Al Sukhun: We are living in a fantastic area where precision medicine has really revolutionized our approach to the treatment of many tumors. But at the same time, while we are talking about equity, improving access, it created another challenge and it created, unfortunately, disparity and made equity even more difficult.

Right now, we do have, there is a huge difference between access, availability, and affordability. Most of these new medications, whether basic chemotherapeutics or recently approved targeted therapeutics or immunotherapy are available, but the problem is they are not affordable. Some of them are available in certain institutions, while in the same country, other institutions, if the patient's insurance happens to be in another institution, they cannot access it. So even within the same country, across different institutions, so many of the recently approved targeted therapeutics or immunotherapeutics are not offered. So equity is lacking even within the same country, in many countries with limited resources.

Sometimes the irony is you will have the very highly-priced medications while out of the blue you are faced with the challenge of shortage of basic therapeutics, platinums, for example. And I learned from colleagues, the states suffered from a similar shortage the last few weeks. And you can imagine not being able to access platinum to treat your patients can make a huge difference and impact. Even if you have immunotherapy, you don't have it. That's ironic.

And another challenge, most patients with the availability of social media and Google, thanks to Dr. Google, you check Dr. Google, and the first option you get is very pricey options, immunotherapy, targeted therapy. So the patient comes to you and he's getting the recommendation of having basic chemotherapy, sometimes because the indication is chemotherapy, sometimes because they cannot afford- you offer them the higher price medications, but they cannot afford it still. You still advise chemotherapy because it does work, but the patients are under the belief that if they do not take the very pricey medication, they are doomed and they cannot be treated. So they put treatment off altogether.

These are conflicting concepts. They need awareness campaigns, they need explanation. Social media needs to do a better job improving what it markets. It usually markets the very pricey medications as life-saving, while talking about chemotherapy as something that really hurts patients, while in reality, sometimes this is all we have and it does make a difference.

Another challenge we face, our region, for example, it's a conflict region with so many refugees. To give you a very simple example, I had a patient coming from a Syrian camp, hemoptysis, worked her out, and it looks like lung cancer, and I managed - she cannot afford any kind of treatment - but I managed with the hospital to get the CT scan free. We got the biopsy, and the good news is that companies, pharmaceuticals can and do help. They offered to test the biopsy for EGFR, and it turned out to be positive. Of course, we have no access to EGFR-targeted therapy. So what can we do? Indeed, that patient, we offered her platinum, but at that time we didn't have platinum. Within a couple of months, she presented with a very advanced-stage disease. And unfortunately, we lost her before we could start treatment because platinum was not available. Not only EGFR inhibitors, but we're talking about the simple things. Basic chemotherapeutics are important, those we need to emphasize availability. We keep talking about cutting-edge therapeutics. They're very fascinating to use, to treat, they made a huge difference, but still, our old friend, basic chemotherapy can and does make a difference, something we need to talk about more and more.

Dr. Thierry Alcindor: I agree with you, and that's true of even high-resource countries. I mean, cytotoxic chemotherapy remains the backbone of treatment for many cancers, even in 2023.

But I'd like to ask you a question following up on what you just described so well regarding availability, access. Do you have research infrastructure that would allow you, like for example, they have done in India at Tata Memorial Hospital, to conduct research with lower doses of those expensive agents? I think that this is quite a promising direction for low-resource countries. What do you think?

Dr. Sana Al Sukhun: You touched on a very dear subject to my heart, actually. Right now we're working with ASCO discussing a policy, discussing clinical trials in limited resource environments. Indeed, this is one of the very important aspects that can improve truly access to medications and contribute to the knowledge worldwide. Unfortunately, there are so many barriers.

A short answer to your question is very few centers, if any, in the region do have infrastructure that can facilitate enrollment in phase three randomized trials. Investigator-initiated trials, particularly like the ones you're alluding to, more or less similar to the FinHer trial when we learned that short courses of trastuzumab six months versus twelve months can be reasonable for patients with a limited number of risk factors. Such trials, unfortunately, so far the infrastructure does not allow having such investigator-initiated trials. Not only the infrastructure, pharma needs to be more open for the support of such trials in these environments. Most governments in the region are still struggling with the concept of having human subjects enrolled in clinical trials. That needs awareness, not only at the level of the society or the patients or the physicians, by the way, who also, we struggle because we do not have protected time or appreciation.

Dr. Thierry Alcindor: So you're talking with such passion about those challenges, and I feel that there is quite a lot of effort that you're putting in. So maybe you can tell us about the improvements that you have noted.

Dr. Sana Al Sukhun: It’s interesting when you look over the past couple of decades how things have moved. Particularly in Jordan, having a cancer center, the first comprehensive cancer center in the region, really set a good example for Jordan itself where other institutions improved to try and compete, improve their services similar to what King Hussein Cancer Center currently has. Also, they managed to have an infrastructure for clinical trials. And as I mentioned, they do have some of the phase III clinical trials already running, participating in large multinational clinical trials. That’s a huge improvement, a huge step.

Still, investigator-initiated clinical trials is something we are working with the government to support and start and encourage. Our screening program really succeeded and we are more or less similar to high-income countries when it comes to the rate of early detection. Still, we are working on improvement. We don’t have a national screening problem. We have a national awareness campaign problem.

Dr. Thierry Alcindor: Okay, so that's a lot of success.

Dr. Sana Al Sukhun: That's huge success. Not only that, in October, now you come to Jordan. It's not only one government-run program. You see all clinics offering mammography services, either free or 50% off for patients across the kingdom. That actually did reflect positively on neighboring countries. Egypt, for example, right now started the last couple of years a similar national awareness downstaging program with excellent numbers of cases caught up early. The region is really improving - I'm talking about our region in the Middle East - if it were not for the conflicts.

That’s not the case when it comes to, unfortunately, countries with conflict, we all struggle. Jordan, Lebanon, even Syria, we all struggle with the refugee problem. Still, the refugees do not have enough funding, but a lot of NGOs are trying to help them. Along with what Richard described, you find many NGOs, they start themselves to help with access, to help with transportation, to help with medical fees for early detection. I believe we are moving far ahead when it comes to cancer, in particular over the past decade or so, as compared to many other diseases. Still, I believe we need contribution or cooperation between all stakeholders. That's what we still need.

Dr. Thierry Alcindor: Okay, excellent. So I have a couple of questions that I would like to address to the two of you. Which barrier do you feel is the most difficult to solve when providing cancer care in low-resource settings? Is that the infrastructure? Is that the personnel who has not been properly trained? Equipment? Which would it be?

Dr. Richard Ingram: Yeah. I appreciate it. And I really have been reflecting on Dr. Al Sukhun's heartfelt passion and comments. And thank you for sharing that, Sana. I think that's something we all need to be aware of. And a compliment to you and your team for being so inclusive in that region. I mean, cancer is a difficult enough diagnosis, but yet alone in a conflict zone, I can only applaud and empathize with you and a sincere tip of the cap to you and your team. That's incredible work.

Dr. Sana Al Sukhun: Thank you.

Dr. Richard Ingram: In general, you have to change the culture. You have to build trust in the process, the medical process, because that medical system may have let patients, family members, or neighbors down previously. So, I think building trust around screening and building trust around that there is an infrastructure that's going to take care of you if you have a positive screen.

I have several patients, but one comes to mind a very complicated trimodality disease, esophageal cancer. But the long and the short of it is, the patient presented to a rural outside emergency room with obstructive symptoms. The emergency room doctor was savvy enough to have some resources in their area but stabilize the patient. The test they could get; they could just get really kind of a barium swallow at the facility, saw there was a problem, but then called an oncology nurse navigator program that we've instituted in our region to cover this wide footprint. The nurse navigator was able to basically navigate this patient very successfully into a GI endoscopy program, which then got them in the cancer program and worked hand in hand with a social worker arm that we've instituted also to help assist the nurse navigation program. So the social worker was able to work on food insecurity, getting the patient actually applied for and got them Medicaid and got them transportation, barriers lifted.

So, it was a very successful anecdote compared to my unsuccessful anecdote earlier around lung cancer. So, to me, it's an example of a playbook that the Appalachian Community Cancer Alliance is trying to develop. So, maybe we can aggregate best practices in some way, shape, or form as the alliance and get those across the world, get those to Dr. Al Sukhun and the King Hussein Center in Jordan, and get it to wherever we need to in the world to help patients because the patient's problems are not unique to Appalachia. They're just unique to under-resourced and geographically spread out areas.

Dr. Sana Al Sukhun: Absolutely.

Dr. Thierry Alcindor: Yeah. That's well explained.

Dr. Thierry Alcindor: Sana, which barrier would you say is the most difficult one for you?

Dr. Sana Al Sukhun: We all get involved and cancer is an emotional diagnosis. It's completely different from all other diagnoses. No matter what, all illnesses are challenging, but the word 'cancer', nobody can deny it. It still carries a lot within those few letters. So, good infrastructure, not only in terms of building - this is very important - it's also a multidisciplinary team within that infrastructure.

The other day, a patient came to the emergency room of the hospital across the street from where I practice. He was 25 years old, healthy, just some fatigue lately, and he collapsed. Actually, they found him pancytopenic. So, looking at the blood film, long story short, was highly suspicious for acute leukemia. The patient cannot afford admission to a private hospital, but he had insurance in the Royal Medical Services. In Jordan, we have different kinds of insurance depending on which section you belong to. It's more like the VA in the States. I talk to my colleague over there, tell them high suspicion for leukemia and he's like, "Send him right away." He was admitted simply because he had coverage; he had insurance. They do have also a good cancer center there. So, they had him admitted, had his bone biopsy done, diagnosed, and started treatment. That is an excellent example of how a good infrastructure, when available with good access to that infrastructure - so it’s infrastructure and good access to that infrastructure - can make a huge difference.

Dr. Thierry Alcindor: That's right. So, the two of you have offered plenty of potential solutions, which is, in fact, to a certain extent, the point of this podcast. But if you had to state what would be your first step, which one would it be? Rich?

Dr. Richard Ingram: I think if I could not pick one thing but a collection of things, it really would be, top of mind, would be just an awareness that we have gaps in our infrastructure. Cancer care and navigation, even in the most resourced areas of probably the most resourced country in the world here in the United States, yet alone in some of our under-resourced portions of the United States. So you can only imagine in an underserved or under-resourced other part of the world. So I think awareness of the issues, awareness that we need to create a somewhat seamless infrastructure throughout the entire continuum from the screening of cancer to diagnostic studies to therapeutic studies to survivorship to palliative care and counseling. And then along the way layer in clinical research, which is the only way we're going to move the needle, and services such as genetic counseling along the way. So I would say awareness of the issues and then starting with the key stakeholders in your area, all coming around to the awareness of the issues, then you can start to build the infrastructure.

And I think once you build the infrastructure, it will become easy to recruit and retain healthcare staff in a sound infrastructure - meaning I think that will get over the barrier of understaffing rural areas like Appalachia or other underserved areas in this country, in that if you have a great infrastructure, I think I know, as Sana alluded to, once you create this infrastructure, you as a provider want to practice there. You want to be part of something that has a great infrastructure because A) you're proud of the work done, B) the patient gets state-of-the-art comprehensive care, and C) you're making a difference in your community. Patients aren't having to travel, patients are safe and have their arms around them with a program right in their backyard.

Dr. Thierry Alcindor: Excellent. Sana, what would be your first step?

Dr. Sana Al Sukhun: Thank you, Thierry, and thank you, Richard. You know Richard, every time you speak, you speak my mind. It just speaks for how much we are alike across the globe rather than we are different. We share the same challenges, we share similar barriers, and indeed solutions are more or less similar. After all, we're all human.

If I were to think of one important thing, it's awareness. Awareness campaigns targeting the society, discussing the importance of early detection, prevention, and treatment. Awareness campaigns targeting all stakeholders, policymakers, number one, emphasizing the importance of infrastructure to be supported, to be environment-attractive for a good workforce to work together, build it forward, treat patients in a safe environment. Also targeting industry to collaborate with other NGOs in the society to support that infrastructure and empower it to start clinical trials for each community. Not only targeting the community needs but also the way you describe it, Thierry, using the new therapeutics in a society-adapted approach to improve access to treatment.

Those infrastructures, once empowered and doesn't have to be one, once empowered, they can be infectious. They can contribute to elevating the medical care in different settings in each society. So, one good infrastructure can set the example for other institutions to improve their care and collaborate as well. So, it’s awareness campaigns putting all key stakeholders together including the society.

Dr. Thierry Alcindor: Okay. Well, I think we had a very insightful and lively discussion so I would like to thank both Dr. Sana Al Sukhun and Dr. Richard Ingram for having joined us for a discussion about practicing oncology in low-resource settings.

And for the audience to know, the ASCO Education podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologist well-being and professional development. If you have an idea for a topic or a guest you'd like to see on the ASCO Education podcast, please email us at education@asco.org and to stay up to date with the latest episodes and explore other educational content, please visit education.asco.org. Many thanks again. A pleasure to talk with you.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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People who live in major cities in the US and abroad tend to benefit from better cancer care due to having access to more doctors, facilities and equipment. In contrast, those who live in rural areas face many challenges accessing consistent and quality care.

In Part Two of this ASCO Education Podcast Dr. Jack Hensold, a hematologist/oncologist in Bozeman, Montana and Chair of the ASCO Rural Cancer Care Task Force, Dr. Chris Prakash, Medical Oncologist in Paris, Texas and Medical Director of Texas Oncology and President of the Texas Society of Clinical Oncology, and Professor Sabe Sabesan, a Medical Oncologist in Townsville, Australia and the President-Elect of the Clinical Oncology Society of Australia will examine the realities of practicing oncology in rural areas.
They will discuss the need for rural populations to access clinical trials (1:42), using telemedicine for chemotherapy and clinical trials (3:00) and using political advocacy to improve cancer care in rural areas (13:00).
Speaker Disclosures
Sabe Sabesan: Speakers Bureau - Merck
Sucharu Prakash: Speakers Bureau - Myriad Genetics
Jack Hensold: Consulting or Advisory Role Company - Vibliome Therapeutics

Resources
Policy Recommendations for Improving Rural Cancer Services in the United States

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Dr. Jack Hensold: Hello and welcome to this two-part episode of the ASCO Education podcast. Today we will explore some real-time and real-world issues that oncologists face while practicing in rural areas in the US and abroad. I'm Dr. Jack Hensold, a Methodologist Oncologist in Bozeman, Montana, and chair of the ASCO Rural Cancer Care Task Force. I also serve as Medical Director of Regional Outreach at Bozeman Health. Joining me is Dr. Chris Prakash, an Oncologist and Medical Director of Texas Oncology and the President of the Texas Society of Clinical Oncology. Chris is also the Director of Quality Services for the statewide group and leads Texas Oncologist Precision Medicine Initiative.

Also joining me is Professor Sabe Sabesan, a Medical Oncologist in Regional, Australia. He's the President-elect of the Clinical Oncology Society of Australia and the Clinical Director of the Australian Teledyne Health Program, led by the Queensland State Department of Health. Professor Sabazin is an internationally recognized expert in the area of teleoncology and has developed and evaluated various oncology models to deliver cancer care closer to home.

In part one, our guests were explaining what got them into rural practice and the issues they face in patient transportation, telehealth, getting access to the latest information on treatments, and connecting with other colleagues to get insight on patient cases. Here, I ask Dr. Prakash about one issue that does not get talked about very often.

Dr. Chris Prakash: I think we don't talk enough about access to clinical trials for rural populations. And that's a hard problem. These are regulated. But I wonder about real-world trials. Those are a little easier to do. Maybe we can put more patients on those, the hub-and-spoke model, that would be helpful in that. And I know people are trying and many societies are trying to enroll more rural populations in trials, but it continues to be a challenge.

Dr. Jack Hensold: Correct. And actually, ASCO has a workforce right now that's trying to address this problem. That includes patient representatives, as well as, I think, people from National Cancer Institute and people from the pharmaceutical industry who've been on that task force and really is trying to address what are the barriers that keep us from getting trials out to our patients in rural areas because it is identified as a real problem. I think, as we all know, excellent cancer care requires access to clinical trials, and limited access means quality of care is going to be less.

Dr. Sabesan, you've been working on improving chemotherapy access in rural parts of Australia. Do you think your programs like tele-chemotherapy could be implemented in other regions and even in this country, the United States, and can they be applied to clinical trials and teletrials essentially?

Dr. Sabe Sabesan: This is where I get really excited because the use of telemedicine, beyond providing consultations and then using it for chemotherapy and clinical trials, actually that's what keeps me up in the morning and keeps me awake at night as well. What I see these things as they are system solutions for a chronic problem. In tele-chemotherapy, it's simple, really. It's rural nurses. They are not chemotherapy nurses, they are general nurses. They administer selected chemotherapy regimens under the direct supervision of doctors, nurses, and pharmacies from larger centers through telemedicine, tele-nursing, and tele-pharmacy. So all we need for tele-chemotherapy to happen, if you have a larger center willing to supervise a smaller center or a larger center is now expected to do that through Health System directives, then I think we can implement that throughout the system.

And what we have done in Queensland, we got the Queensland State Government to implement that because we got a governance document called “Queensland Remote Chemotherapy Supervision Model and Guide for Implementation.” Basically, that articulates how to set up these services safely. But we already published that in the Journal of Oncology Practice in 2018, so that was a rewarding experience. But then what we found, we could do immunotherapy infusions, toxic chemotherapy like that and all those things in smaller centers, but we couldn't do clinical trials because, as Chris said, it's highly regulated. So then we said, “How come you can do toxic intensive chemotherapy but not clinical trials?” So that's how the Australasian teletrial model was born.

So we thought we will use the teletrial model to connect larger centers with smaller centers to create trial clusters so that you can really distribute the clinical trials activity to the regional, rural, and remote areas. So now we have an Australian teletrial model and a national teletrial principle as a government policy to enable that. Through some pilots we published in the Journal of Telemedicine & Telecare, the Australian government actually funded $125 million to transform the Australian clinical trial sector as a network and a national system, so that patients from regional, remote, and rural areas can access clinical trials, some or all aspects of clinical trials closer to home. So that is exciting because it's about one year into the program and already we could see the narrative is changing, and we are saying clinical trials need to be offered as networks, not as silos anymore, because of social justice and equity. So that's been becoming powerful.

And also, we've been now pushing the Ethics Committee to mandate that clinical trials need to be done as clusters because it is an ethical social justice issue. So I think if you have good governance and government support, I feel that we can actually implement these models in larger parts of the rural sector. Not all of them, but in larger parts. But I just wanted to highlight before I finish that the decentralized trials becoming popular and I feel like the decentralized trials are kind of hijacking the rural narrative here because they are not decentralized trials in my observation, they should be decentralized trial systems. And rather than bypassing hospitals and directly dealing with patients at home, in a lot of the trials, it seems that most of those patients are actually metropolitan patients. And I think any decentralized trial systems have to focus on partnerships with rural sectors, capability or capacity building of rural sectors so that you could really deliver clinical trials in a distributed network system to really fix this problem once and for all.

Dr. Jack Hensold: Sabe, it sounds like there's much that we can learn from paying attention to what's going on in Australia. It seems like your group is well ahead of the curve in terms of what needs to happen in rural areas. Chris, comments about that as well?

Dr. Chris Prakash: Yeah, I was going to say, I think excellent job, Sabe. Kudos to you for doing this in Australia. It's a clinical dilemma. It's an ethical dilemma. Sometimes clinical trials are fundamental to providing good quality care for our patients. But the American healthcare system is complex. Clinical trials, sad to say, I mean, that they're money makers for a lot of big institutions or pharmaceutical companies for sure. So what these companies are looking for is if they have a new drug, they want to get a trial done as quickly as possible, get positive data, and then get it approved. It's really hard to find a good phase III, randomized, placebo-controlled trial anymore. They're just nonexistent. They're all phase I, II, quick one year, get the data, and file for approval with the FDA. So I get your point. I think I would love to have a good trial where we can put patients on, rural patients on, but I don't know if that's going to be possible.

Now, what I'm doing in Texas Oncology, I'm the director of Quality Services, so that is my goal; is to give quality care to the whole state population wherever we can. And clinical trials is the most difficult task, I'm finding. I can make testing consistent, I can make treatment protocols consistent, but getting patients on clinical trials is a very difficult task. So, kudos to you, Sabe. You're doing an excellent job.

Dr. Jack Hensold: It's actually the main enabler for us is actually the government intervention, because what we felt was the rural sector has been left in the hands of clinicians and local health managers for far too long, but no one was in charge of that gap. So now, by the governments coming to the party and trying to implement some policies and funding mechanisms, things are changing. But really still, I found the advocacy hasn't stopped and there's still a long way to go, even in Australia, but it's pure advocacy from rural oncologists like us.

Dr. Chris Prakash: Yeah, I think that kind of highlights the difference in American and Australian healthcare systems probably. I know the American healthcare system is still very private. I mean, we have a big Medicare part of the equation, but again, a lot of health care is really delivered by private companies, hospital systems that are for profit, pharmaceutical companies really have strong lobbying systems. So it's a complex situation here.

Dr. Jack Hensold: Yeah, I would agree with that fully in that, when I was hearing Sabe talk about things and comparing it to our experience in this country, we are very fragmented in terms of our care delivery systems, and trying to get a coordinated approach to how we address this rural health problem is difficult because we're bringing so many different people to the table who all have different points of view in terms of how they look at this. So, again, this may be a much harder piece to try to achieve just simply because of the fragmentation of the way we provide care in this country.

So, Dr. Prakash, you’re a member of several groups that address the needs for rural cancer care in the United States including ASCO's Rural Cancer Care Task Force, as well as the work you do with the Texas Oncology Society. Can you be a little bit more specific about those efforts?

Dr. Chris Prakash: Thanks, Jack. As you know, I was a member of the ASCO Task Force on Rural Cancer Care. This was put together in 2019, and then the pandemic happened. The timing was just right. But we were tasked with finding and really defining what the challenges of rural cancer care are and what are the solutions that we can come up with. It was a very hard job, but we did come up with some solutions on that, mainly increasing provider education, workforce enhancement. We have talked about a few of these things already - telehealth, promotion, and of course, research. But as you know, these solutions are easier said than done, and work continues on these fronts. And thank you, Jack, for taking the lead on many of these issues in the US.

So currently, as you know, I'm the President of the Texas Society of Clinical Oncology, and I'm doing a lot of advocacy work at the state capitol in Austin regarding various bills and provisions, but especially to garner support on a new biomarker bill. So this bill, if passed, will help pay for all biomarker testing in cancer. So there are disparities and rural disparities in cancer care. So if this bill is passed with the biomarker testing, this may go a long way in removing some of the disparities that our patients face in terms of testing biomarkers and payment for those tests as well. And I firmly believe that quality of care should be consistent no matter where a patient lives. I'm the Director of Quality Services for Texas Oncology. I'm leading the Precision Medicine initiative for the state, and I'm developing protocols for consistent biomarker testing, mutational analysis, and tumors and treatment protocols. So efforts continue, and please stay tuned.

Dr. Jack Hensold: Thank you for that and all the work you do, Chris. I think it's an important point, and I've been involved through the Montana State Oncology Society, which is our society in terms of doing advocacy at the state level as well. And I think that's very important, particularly for states that have large rural populations, because I'm not sure nationally, people fully understand some of the difficulties that those patients face. And advocating for improved health care across the board is critical. And the rural patient needs to be considered. As we think about any changes to how we invest in healthcare in this country, the laws are regulated.

Dr. Chris Prakash: You're exactly right. I mean, advocacy is very, very important. And our Congressmen and representatives, they do listen. As a physician, you go and talk to them and express concerns about what the constituents are going through and the hurdles they're facing in their care. They will listen and you can make a change. And that's what fascinates me about practicing in a rural setting, is that I can make a difference. I can see a change. Just over the last 20 years that I've been here, things have changed. Not all for the better, but you can be a part of the whole process.

Dr. Jack Hensold: Yes, I would completely concur. I think our legislators nationally and statewide are very responsive to our voices. If there's something that's impacting their constituents in terms of the care that they're receiving, they're going to want to know about that. And they're happy to look like the champions, I think, to support improving their care. It's something we all can do a better job at nationally. Sabe, not to leave you out of that conversation, any thoughts about that?

Dr. Sabe Sabesan: I mean, the advocacy is the key. That is also one of our jobs as doctors. But the main thing about advocacy is actually self-care, I found. As long as we don't burn out and we keep our energy level going and focus on recharging and minimizing energy discharge, we stay strong and take our colleagues with us. I think that's what I learned in advocacy is to make sure we don't drain our energy in that process.

Dr. Jack Hensold: The quality of care should be the same for every patient, no matter where they live. And that really is kind of one of the driving principles for me in terms of why I got into this rural cancer care task force and the initiatives that we're taking on. And I'd like to describe a project right now that I've undertaken with ASCO and with our local regional health center and a medium-sized hospital in our area. Actually not in our area, it's 125 miles away, but an area that we service, and patients regularly come to our regional center for their cancer care, I think, was the appreciation that this 250-mile round trip, particularly to receive things like chemotherapy, was just a tremendous burden for patients from that area.

And in addition to the problems with the financial aspects of traveling long distances to receive that care, there was also the issue that we were sending patients back to fairly distant sites to experience the toxicities associated with our treatments without sufficient support in those sites locally in terms of understanding what needed to be done. That really led to this initiative with ASCO and Barrett Health in Montana, as well as Bozeman Health. And we've now been funded as part of a multi-year pilot program to increase high-quality and equitable cancer care at this site in rural Montana. And the work in this area was based on, again, the prior work on the task force that Dr. Prakash talked about in terms of identifying what barriers were in place to getting care to patients in their own community and how we could overcome these barriers.

And really, the concept of this program is to enable patients to receive care in their own community through what's described as a hub-and-spoke care delivery model. This is an established method for extending access to cancer care in remote rural areas. In fact, I think, as Dr. Sabesan talked about, I think much of the published work in this area has actually come out of Australia. So again, kudos again to that health system in terms of taking the initiative on these things.

And the initiative that we were talking about aims again to keep patients in their own community for as much of their cancer care as feasible, not to rely on that long drive to our regional site to get care. We understand this will require education and training of primary care physicians, advanced practice providers, pharmacists, and nurses at what we would refer to as the spoke site. And specifically, this needs to focus on education regarding how to properly administer infusion services and also how do we provide adequate supportive care for the cancer patients.

We do appreciate that those providers at that distant site, we can never really expect them to have full knowledge to appreciate what treatment cancer patients will need at any given point in time. But that really is where the expertise of the oncologist comes in. And oversight from the hub site will be provided by oncologists both by telehealth and supplemented, by regularly scheduled onsite visits by the oncologist to ensure just a seamless integration of care at both the hub and the spoke site and also to ensure the shared culture of cancer care between those two sites.

So that is the intent of the pilot that we're setting up. As we achieve function of that site, we will be doing quality measures to ensure that the care that's being administered at the spoke is really equivalent to what they would be receiving at the hub. So hopefully this will become a model for how we can deliver care to more remote rural areas in this country. I'd like to give Dr. Sabesan and Dr. Prakash an opportunity to make further comments regarding that model and any suggestions they may have; I'm willing to take in terms of how we can achieve this end.

Dr. Chris Prakash: Yeah. Thank you, Jack. And again, kudos to you for being so passionate about taking care of patients in rural areas with their cancer care. But I think you highlighted the most important thing: we’ve got to be passionate, we’ve got to care, we have to do everything possible, find solutions. There are many challenges in this realm. So the hub-and-spoke model, that's very helpful, but again, we may need more multi-hub models or regional hubs, so to say on that. Education, keep developing the workforce, retain the workforce that we have, provide access to research, promote telehealth as much as possible. I think these are all pieces to the puzzle. Keep doing advocacy and just work and hopefully not get burnt out. So yeah, it's a work in progress, but again, that's why I'm doing this because I'm passionate about this, and thank you so much for having me as a part of this conversation.

Dr. Jack Hensold: Well, thank you for participating. Sabe, any comments?

Dr. Sabe Sabesan: Yeah, thank you. I really enjoyed being part of this conversation and I think it looks like it's almost good to have a community of international rural practice like this so that we can share and implement within our sector. And I'm really looking forward to seeing how your pilot project evolves, Jack, and how that can become a model for the whole of the country. Good luck to you.

Dr. Jack Hensold: Thank you very much for that. And again, just a comment about the international working on this. We do have someone from Romania on our current task force. There's a group there that's very interested in providing kind of hub-and-spoke model care. So these are topics that I think are really getting on everyone's radar internationally. Again, I think the more buy-in we get internationally as well as nationally, the more wind we will have at our backs in making some improvements in this. Thank you, Dr. Prakash, for your insight into this topic and also to Professor Sabesan for his perspective from his practice in Australia.

I'm Dr. Hensold and I would like to thank all of our listeners of Cancer Topics and ASCO Education Podcast. This is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologist well-being and professional development. If you have an idea for a topic or a guest you'd like to hear on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

There was time during the early 70’s when the field of oncology began to take hold where the singular focus was to extend the patient’s life. In this ASCO Education podcast, our guest was one of the first to challenge that notion and rethink methods that focused the patient’s QUALITY of life. Dr. Patricia Ganz joins us to describe her transition from cardiology to oncology (6:00), the moment she went beyond treating the disease and began thinking about treating the WHOLE patient (10:06) and the joy of the increasing numbers of patients who survive cancer (21:47).

Speaker Disclosures Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Dr. Patricia Ganz: Leadership - Intrinsic LifeSciences Stock and Other Ownership Interests - xenon pharma, Intrinsic LifeSciences, Silarus Therapeutics, Disc Medicine, Teva, Novartis, Merck. Johnson & Johnson, Pfizer, GlaxoSmithKline, Abbott Laboratories Consulting or Advisory Role - Global Blood Therapeutics, GSK, Ionis, akebia, Rockwell Medical Technologies, Disc Medicine, InformedDNA, Blue Note Therapeutics, Grail Patents, Royalties, Other Intellectual Property - related to iron metabolism and the anemia of chronic disease, Up-to-Date royalties for section editor on survivorship

Resources If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Pat Loehrer: Welcome to Oncology, Etc., an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a Medical Oncologist at the University of Texas Southwestern in Dallas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of the podcast is to introduce listeners to interesting and inspirational people and topics in and outside the world of oncology.

Pat Loehrer: The field of oncology is relatively new. The first person treated with chemotherapy was in the 1940s. Medical oncology was just recognized as a specialty during the 1970s. And while cancer was considered by most people to be a death sentence, a steady growth of researchers sought to find cures. And they did for many cancers. But sometimes these treatments came at a cost. Our next guest challenged the notion that the singular focus of oncology is to extend the patient's duration of life. She asked whether an oncologist should also focus on addressing the patient's quality of life.

Dave Johnson: The doctor asking that question went to UCLA Medical School, initially planning to study cardiology. However, a chance encounter with a young, dynamic oncologist who had started a clinical cancer ward sparked her interest in the nascent field of oncology. She witnessed advances in cancer treatment that seemingly took it from that inevitable death sentence to a potentially curable disease. She also recognized early on that when it came to cancer, a doctor must take care of the whole patient and not just the disease.

From that point forward, our guest has had a storied career and an incredible impact on the world of cancer care. When initially offered a position at the West LA VA Medical Center, she saw it as an opportunity to advance the field of palliative care for patients with cancer. This proved to be one of her first opportunities to develop a program that incorporated a focus on quality of life into the management of cancer. Her work also focused on mental, dietary, physical, and emotional services to the long-term survivors of cancer.

That career path has led to many accomplishments and numerous accolades for our guest. She is a founding member of the National Coalition for Cancer Survivorship, served as the 2004 Co-chair of ASCO's Survivorship Task Force, and currently directs UCLA's Cancer Survivorship Center of Excellence, funded in part from a grant from Livestrong. Our guest is Dr. Patricia Ganz.

Dr. Patricia Ganz: It's great to be with both of you today.

Dave Johnson: We always like to ask our guests a little about their background, where they grew up, a little about their family.

Dr. Patricia Ganz: Yes. I grew up in the city of Beverly Hills where my parents moved when I was about five years old because of the educational system. Unlike parts of the East Coast, we didn't have very many private schools in Los Angeles, and so public education was very good in California at that time. So I had a good launch and had a wonderful opportunity that many people didn't have at that time to grow up in a comfortable setting.

Dave Johnson: Tell us about your mom. I understand she was a businesswoman, correct?

Dr. Patricia Ganz: Yes, actually, my parents got married when my mom was 19 and my dad was 21. He was in medical school at the University of Michigan. His father and mother weren't too happy with him getting married before he could support a wife. But she worked in a family business in the wholesale produce business in Detroit. One of six children, she was very involved with her family in the business. And they were married, and then World War II started, my father was a physician in the military, so she worked in the family business during the war. After finally having children and growing up and being in Beverly Hills, she sat back and was a homemaker, but she was always a bit restless and was always looking for something to do. So wound up several years later, when I was in my early teens, starting a business with one of my uncles, an automobile parts business. They ultimately sold it out to a big company that bought it out.

Pat Loehrer: Where did your father serve in World War II?

Dr. Patricia Ganz: He was actually D-Day Plus 21. He was in Wales during the war. They had to be stationed and moved down into the south before he was deployed. I have my parents’ correspondence and letters from the war. He liberated some of the camps. Actually, as I have learned about the trauma of cancer and post-traumatic stress that happens in so many people, our military veterans, most recently, I think he had post-traumatic stress. He didn't talk very much about it, but I think liberating the camps, being overseas during that time, as it was for that silent generation, was very profound in terms of their activities.

He wound up practicing medicine, and Los Angeles had a practice in industrial medicine, and it was a comfortable life. He would work early in the morning till maybe three or four in the afternoon and then go to the gym, there were moonlighting physicians who worked in the practice. But I kind of saw an easy kind of medicine, and he was always very encouraging and wanted me to go into medicine -- that I could be an ophthalmologist or a radiologist, good job for a woman. But I didn't really see the tough life of some of the internists and other people who were really working more 24/7, taking care of patients in the way medicine used to be practiced.

Dave Johnson: Yeah. So you were interested in, early in your career, in cardiology. Could you tell us about that, and then a little bit more about the transition to oncology?

Dr. Patricia Ganz: I went away to college, I went to Harvard Radcliffe and I came home during the summers. And was interested in doing something during the summer so I actually in a pediatric cardiology research laboratory as a volunteer at UCLA for a couple of summers between my freshman and sophomore year then my sophomore and junior year. And then I actually got a California Heart Association Fellowship between my junior and senior year in college.

And this pediatric cardiology lab was very interesting. They were starting to give ketamine, it had an identification number, it wasn’t called ketamine. But they were giving it to children in the cardiac cath lab and then were very worried about whether it would interfere with measuring the pressures in the heart. So we had intact dogs that had catheters implanted in the heart, and the drug would be given to the animals and we would then measure their pressures in the heart.

That cardiology experience in 1970, the summer between my first and second year of medical school, the Swan-Ganz catheter was being tested. I worked at Cedars that summer and was watching them do the various studies to show the value of the catheter. And so by the time I was kind of finishing up medical school, I’d already invested all this time as an undergraduate. And then a little bit when I was in medical school and I kind of understood the physiology of the heart, very exciting. So that’s kind of where I was headed until we started my internship. And I don’t know if any of you remembered Marty Cline, but he was the oncologist who moved from UCSF to Los Angeles to start our hem-onc division. And very exciting, a wonderful bedside teacher.

And so all of a sudden, I’ve never been exposed to oncology and this was very interesting. But at the same time, I was rotating through the CCU, and in came two full-arrest patients, one of whom was a campus cop who was very obese, had arrested at his desk in the police station. And we didn’t have emergency vehicles to help people get on campus at that time. This was 1973 or 1974, something like that. And he came in full arrest, vegetable. And then another man had been going out of his apartment to walk his dog and go downstairs, and then all of a sudden his wife saw him out on the street being resuscitated by people. And he came in also in full arrest.

So those two experiences, having to deal with those patients, not being able to kind of comfort the families, to do anything about it. As well as taking care of patients in my old clinic who had very bad vascular disease. One man, extremely depressed with claudication and angina, all of a sudden made me feel, “Well, you know what? I’m not sure I really want to be a cardiologist. I’m not sure I like the acute arrest that I had to deal with and the families. And also, the fact that people were depressed and you couldn’t really talk to them about how serious their disease was.” Whereas I had patients with advanced cancer who came in, who had equally difficult prognoses, but because of the way people understood cancer, you could really talk about the problems that they would be facing and the end-of-life concerns that they would have.

So it was all of those things together that made me say, “Hmm.” And then also, Pat, you’ll appreciate this, being from Indiana, we were giving phase II platinum to advanced testicular cancer patients, and it was miraculous. And so I thought, “Oh my gosh, in my lifetime, maybe cancer is going to be cured! Heart disease, well, that’s not going to happen.” So that was really the turning point.

Pat Loehrer: When many of us started, we were just hoping that we could get patients to live a little bit longer and improve the response rate. But you took a different tack. You really looked at treating the whole patient, not just the disease. That was really a novel approach at the time. What influenced you to take that step forward?

Dr. Patricia Ganz: Well, it was actually my starting– it was thought to be in a hospice ward. It would turn out it was a Sepulveda VA, not the West LA VA, but in any case, we have two VAs that are affiliated with UCLA. And it was an intermediate care ward, and there was an idea that we would in fact put our cancer patients there who had to have inpatient chemotherapy so they wouldn't be in the acute setting as well as patients who needed to travel for radiation. Actually, the West LA VA had a hospice demonstration project. This is 1978. It's really the beginning of the hospice movement in England, then in Canada, Balfour Mount at Montreal and McGill was doing this. And so I was very much influenced by, number one, most of our patients didn't live very long. And if you were at a VA Hospital, as I was at that time, you were treating patients with advanced lung cancer, advanced colon cancer, advanced prostate cancer, other GI malignancies, and lung cancer, of course. So it was really the rare patient who you would treat for curative intent.

In fact, small cell lung cancer was so exciting to be treating in a particularly limited small cell. Again, I had a lot of people who survived. We gave them chemo, radiation, whole brain radiation, etc. So that was exciting. This was before cisplatin and others were used in the treatment of lung cancer. But really, as I began to develop this ward, which I kind of thought, “Well, why should we wait just to give all the goodies to somebody in the last few weeks of life here? I'm treating some patients for cure, they're getting radiation. Some of them are getting radiation and chemo for palliation.” But it was a mixed cancer ward. And it was wonderful because I had a team that would make rounds with me every week: a pharmacist, a physiatrist, a psychologist, a social worker, a dietitian. This was in 1978 or ‘79, and the nurses were wonderful. They were really available to the patients. It wasn't a busy acute ward. If they were in pain, they would get their medication as soon as possible. I gave methadone. It was before the days of some of the newer medications, but it was long-acting. I learned how to give that. We gave Dilaudid in between if necessary. And then we had Brompton solution, that was before there was really oral morphine.

And so the idea was all of these kinds of services should really be available to patients from the time of diagnosis until death. We never knew who was going to be leaving us the next few days or who was going to be living longer and receiving curative intent. We had support groups for the patients and their families. It was a wonderful infrastructure, something that I didn't actually have at UCLA, so it was a real luxury. And if you know the VA system, the rehabilitation services are wonderful. They had dental services for patients. We had mostly World War II veterans, some Korean, and for many of these individuals, they had worked and lived a good life, and then they were going to retire and then they got cancer. So this was kind of the sadness. And it was a suburban VA, so we had a lot of patients who were in the San Fernando Valley, had a lot of family support, and it was a wonderful opportunity for me to learn how to do good quality care for patients along the continuum.

Dave Johnson: How did you assemble this team? Or was it in place in part when you arrived, or what? Nobody was thinking about this multidisciplinary approach?

Dr. Patricia Ganz: I just designed it because these were kind of the elements that were in a hospice kind of program. And I actually worked with the visiting nurses and I was part of their boards and so forth. And UCLA didn't have any kind of hospice or palliative care program at that time. But because the VA infrastructure had these staff already, I didn't have to hire them, you didn't have to bill for anything. They just became part of the team. Plus there was a psychiatrist who I ultimately began doing research with. He hired a psychologist for the research project. And so there was kind of this infrastructure of interest in providing good supportive care to cancer patients. A wonderful social worker, a wonderful psychologist, and they all saw this patient population as very needy, deserving, and they were glad to be part of a team.

We didn't call it a hospice, we called it a palliative care unit. These were just regular staff members who, as part of their job, their mission was to serve that patient population and be available. I had never been exposed to a physiatrist before. I trained at UCLA, trained and did my residency and fellowship. We didn't have physiatry. For whatever reason, our former deans never thought it was an important physical medicine, it wasn't, and still isn't, part of our system.

Pat Loehrer: Many decisions we make in terms of our careers are based on singular people. Your dad, maybe, suggesting going into medicine, but was there a patient that clicked with you that said, "Listen, I want to take this different direction?" Or was it just a collection of patients that you were seeing at the VA? Is there one that you can reflect back on?

Dr. Patricia Ganz: I don't know if you all remember, but there was something called Consultation Liaison Psychiatry where, in that time, the psychiatrist really felt that they had to see medical patients because there were psychological and sometimes psychiatric problems that occurred on the medical ward, such as delirium. That was very common with patients who were very sick and very toxic, which was again due to the medical condition affecting the brain. And so I was exposed to these psychiatrists who were very behaviorally oriented when I was a resident and a fellow, and they often attended our team meetings in oncology on our service, they were on the transplant service, all those kinds of things. So they were kind of like right by our side.

And when I went to the VA, the psychiatry service there also had a couple of really excellent psychiatrists who, again, were more behaviorally focused. Again, you have to really remember, bless her heart, Jimmie Holland was wonderful as a psychiatrist. She and Barrie Cassileth were the kind of early people we would see at our meetings who were kind of on the leading edge of psychosocial oncology, but particularly, Jimmie was more in a psychiatric mode, and there was a lot of focus on coping. But the people that I began to work with were more behaviorally focused, and they were kind of interested in the impact of the disease and the treatment on the patient's life and, backwards, how could managing those kinds of problems affect the well-being of the patient.

And this one psychiatrist, Richard Heinrich, had gotten money from the VA, had written a grant to do an intervention study with the oncology patients who I was serving to do a group intervention for the patients and their families. But, in order to even get this grant going, he hired a project manager who was a psychologist, a fresh graduate whose name was Anne Coscarelli, and her name was Cindie Schag at that time. But she said, "I don't know much about cancer. I've got to interview patients. I've got to understand what's going on." And they really, really showed me that, by talking to the patient, by understanding what they were experiencing, they could get a better handle on what they were dealing with and then, potentially, do interventions. So we have a wonderful paper if you want to look it up. It's called the “Karnofsky Performance Status Revisited.” It's in the second issue of JCO, which we published; I think it was 1984.

Dave Johnson: In the early 90s, you relocated back to UCLA. Why would you leave what sounds like the perfect situation to go back to a site that didn't have it?

Dr. Patricia Ganz: Okay, over that 13 years that I was at the VA, I became Chief of the Division of Hem-Onc. We were actually combined with a county hospital. It was a wonderful training program, it was a wonderful patient population at both places. And we think that there are troubles in financing health care now, well, there were lots of problems then. Medicaid came and went. We had Reagan as our governor, then he became president, and there were a lot of problems with people being cared for. So it was great to be at the VA in the county, and I always felt privileged. I always had a practice at UCLA, which was a half-day practice, so I continued there, and I just felt great that I could practice the same wherever I was, whether it was in a public system, veteran system, or in the private system.

But what happened was, I took a sabbatical in Switzerland, '88 to '89. I worked with the Swiss International Breast Cancer Consortium group there, but it was really a time for me to take off and really learn about quality of life assessment, measurement, and so forth. When I came back, I basically said, "I want to make a difference. I want to do something at a bigger arena." If I just continue working where I am, it's kind of a midlife crisis. I was in my early 40s, and my office was in the San Fernando Valley at the VA, but my home was in West Los Angeles. One day I was in UCLA, one day I was at the VA, one day I was at the county, it was like, "Can I practice like this the next 20 years? I don't know that I can do this. And I really want to have some bigger impact.”

So I went to Ellen Gritz who was my predecessor in my current position, and I was doing my NCI-funded research at UCLA still, and I said, “Ellen, I really would like to be able to do research full time. I really want to make a difference. Is there anything available? Do you know of anything?" And she said, "Well, you know, we're actually recruiting for a position that's joint between the School of Public Health and the Cancer Center. And oh my goodness, maybe I can compete for that, so that's what I did. And it was in what was then the department called Health Services, it's now called Health Policy and Management. I applied, I was competing against another person who I won't name, but I got the position and made that move.

But again, it was quite a transition because I had never done anything in public health, even though UCLA had a school of public health that was right adjacent to the medical school. I had had interactions with the former dean, Lester Breslow, who I actually took an elective with when I was a first-year medical student on Community Medicine. So it kind of had some inklings that, of what I was interested in. I had actually attendings in my medical clinic, Bob Brook, a very famous health policy researcher, Sheldon Greenfield. So I'd been exposed to a lot of these people and I kind of had the instinctive fundamentals, if you will, of that kind of research, but hadn't really been trained in it. And so it was a great opportunity for me to take that job and really learn a lot and teach with that.

And then took, part of my time was in the cancer center with funding from the core grant. And then, within a year of my taking this position, Ellen left and went to MD Anderson, so all of a sudden I became director of that whole population science research group. And it was in the early ‘90s, had to scramble to get funding, extramural funding. Everybody said to me, "How could you leave a nearly full-time position at the VA for a soft money position?" But, nevertheless, it worked out. And it was an exciting time to be able to go into a new career and really do things that were not only going to be in front and center beneficial to patients, but to a much larger group of patients and people around the world.

Pat Loehrer: Of all the work that you have done, what one or two things are you most proud of in terms of this field?

Dr. Patricia Ganz: Recognizing the large number of people who are surviving cancer. And I think today we even have a more exciting part of that. I mean, clearly, many people are living long-term disease-free with and without sequelae of the disease. But we also have this new group of survivors who are living on chronic therapy. And I think the CML patients are kind of the poster children for this, being on imatinib or other newer, targeted agents over time, living with cancer under control, but not necessarily completely gone. And then melanoma with the immunotherapy, lung cancer, all of these diseases now being converted to ones that were really fatal, that are now enjoying long-term treatment.

But along with that, we all know, is the financial toxicity, the burdens, and even the ongoing symptoms that patients have. So the fact that we all call people survivors and think about people from the time of diagnosis as potentially being survivors, I think was very important. And I would say that, from the clinical side, that's been very important to me. But all of the work that I was able to do with the Institute of Medicine, now the National Academy of Medicine, the 2013 report that we wrote on was a revisit of Joe Simone's quality of care report, and to me was actually a very pivotal report. Because in 2013, it looked like our health care system was in crisis and the delivery of care. We're now actually doing a National Cancer Policy Forum ten-year follow-up of that report, and many of the things that we recommended, surprisingly, have been implemented and are working on. But the healthcare context now is so much more complicated.

Again, with the many diseases now becoming rare diseases, the cost of drugs, the huge disparities, even though we have access through the Affordable Care Act and so forth, there's still huge disparities in who gets care and treatment. And so we have so many challenges. So for me, being able to engage in the policy arena and have some impact, I think has been also very important to me.

Dave Johnson: 20 years ago, the topic of survivorship was not that common within ASCO, and you led a 2004 task force to really strengthen that involvement by that organization, and you also were a founding member of the National Coalition for Cancer Survivorship. I wonder if you might reflect on those two activities for us for a moment.

Dr. Patricia Ganz: In 1986, Fitzhugh Mullen, who in 1985 had written a really interesting special article for the New England Journal called "Seasons of Survivorship" - he was a young physician when he was found to have a mediastinal germ cell tumor and got very intensive chemotherapy and radiation therapy and survived that, but realized that there was no place in the healthcare system where he could turn to to get his questions answered, nor get the kind of medical care that was needed, and really wrote this very important article. He then, being somebody who was also kind of policy-oriented and wanting to change the world, and I would say this was a group of us who, I think went to college during the Vietnam era - so did Fitz - and we were all kind of restless, trying to see how we could make a difference in the world and where it was going.

And so he had this vision that he was going to almost develop an army of survivors around the country who were going to stand up and have their voices heard about what was going on. Of course, most people didn't even know they were a survivor. They had cancer treatment, but they didn't think about themselves as a survivor. And so he decided to get some people together in Albuquerque, New Mexico, through a support group that he had worked with when he was in the Indian Health Service in New Mexico. And there were various people from the American Cancer Society, from other support organizations, social workers, and a couple of us who are physicians who came to this meeting, some Hodgkin survivors who had been treated at Stanford and were now, including a lawyer, who were starting to do long term late effects work. And we gathered together, and it was a day and a half, really, just kind of trying to figure out how could a movement or anything get oriented to try and help patients move forward.

So that's how this was founded. And they passed the hat. I put in a check for $100, and that was probably a lot of money at that time, but I thought, well, this is a good investment. I'll help this organization get started. And that was the start. And they kind of ran it out of Living Beyond Cancer in Albuquerque for a few years. But then Fitz, who was in the Washington, DC. area decided they weren't going to be able to get organizations all over the country organized to do this, and they were going to have to do some lobbying. So Ellen Stovall, who was a Hodgkins survivor living in the Washington area, beginning to do policy work in this area, then became the executive director and took the organization forward for many years and championed this, got the Office of Cancer Survivors established at the NCI in the 1990s, and really did a lot of other wonderful work, including a lot of the work at the Institute of Medicine. She was very involved with the first Quality of Care report and then ultimately the survivorship report, the Lost and Transition report in 2005, 2006, I was on that committee. So that was really how things were evolving.

And by that time, I was also on the ASCO board, 2003 to 2006. And so all of these things were kind of coming together. We had 10 million survivors. That was kind of an important note and a lot of diseases now - lymphoma, breast cancer, multi-agent therapy had certain benefits, but obviously toxicities. We lived through the horrible time of high-dose chemotherapy and transplant for breast cancer in the ‘90s, which was a problem, but we saw a lot of toxicities after that. And so there were people living after cancer who now had sequelae, and the children obviously had been leading the way in terms of the large number of childhood cancer survivors. So this was this idea that the children were kind of the canary in the coal mine. We saw them living 20, 30 years later after their cancer diagnosis, and we were now beginning to see adults living 10, 15, 20 years later, and we needed to think about these long-term and late effects for them as well.

Dave Johnson: I'm glad you mentioned Fitz's article in the New England Journal that still resonates today, and if listeners have not read it, "Seasons of Survivorship" is a worthwhile five-minute read.

What do you think the most pressing issues and challenges in cancer survivorship care today?

Dr. Patricia Ganz: Many people are cured with very little impact. You can think of somebody with T1 breast cancer maybe needing endocrine therapy for five years, and lumpectomy radiation. That person's probably not going to have a lot that they're going to be worried about. But if they're a young breast cancer patient, say they're 35 or 40, you're going to get five years of ovarian suppression therapy. You're going to be put into acute menopause. You're going to lose bone density. You're going to have cardiac risk acceleration. You may have cognitive changes. You may have also problems with cognitive decline later. I mean, all of these things, the more intense treatments are associated, what we're really thinking about is accelerated aging. And so a lot of what I've been studying the last 20-25 years in terms of fatigue and cognitive difficulties are related to neuroinflammation and what happens when somebody has intensive systemic therapy and that accelerated process that's, again, not everyone, but small numbers of patients, could be 10-15-20%. So I worry a lot about the young patients. So I've been very focused on the young adult population who are treated intensively for lymphoma, leukemia, and breast. And that's, I think, something that we need to be looking out for.

The other thing is with the newer therapies, whether it's immunotherapy or some of the targeted therapies, we just don't know what the late effects are going to be. Where we're very schooled now in what the late effects of radiation, chemo, and surgery could be for patients, we just don't know. And another wonderful part of my career has been to be able to do quality-of-life studies within the Clinical Trials Network. I've been affiliated with NSABP, I was SWOG previously, but NSABP is now NRG Oncology doing patient-reported outcomes and looking at long-term outcomes in clinical trials. And I think we're going to need this for all of these new agents because we have no idea what the long-term toxicities are going to be. And even though it's amazing to have people surviving where they wouldn't have been, we don't know what the off-target long-term effects might be. So that's a real challenge right now for survivorship.

And the primary care doctors who we would want to really be there to orchestrate the coordinated care for patients to specialists, they are a vanishing breed. You could read the New England Journal that I just read about the challenges of the primary care physician right now and the overfilled inbox and low level of esteem that they're given in health systems. Where are we going to take care of people who really shouldn't be still seeing the oncologist? The oncologist is going to be overburdened with new patients because of the aging of the population and the many new diagnoses. So this is our new crisis, and that's why I'm very interested in what we're going to be looking at in terms of a ten-year follow-up report to the 2013 IOM report.

Dave Johnson: The industry-based trials now are actually looking at longer-term treatment. And the trials in which interest is cancer, we cut it down from two years of therapy down to nine weeks of therapy, looking at minimizing therapy. Those are difficult trials to do in this climate today, whereas the industry would just as soon have patients on for three to five years worth of therapy as opposed to three to five months. Talk a little about those pressures and what we should be doing as a society to investigate those kinds of therapies and minimizing treatments.

Dr. Patricia Ganz: Minimizing treatments, this is the place where the government has to be, because we will not be able to do these de-escalation studies. Otherwise, there will be countries like the UK, they will be able to do these studies, or other countries that have national health systems where they have a dual purpose, if you will, in terms of both financing health care and also doing good science. But I think, as I've seen it, we have a couple of de-escalation trials for breast cancer now in NRG Oncology, which is, again, I think, the role that the NCTN needs to be playing. But it's difficult for patients. We all know that patients come in several breeds, ones who want everything, even if there's a 1% difference in benefit, and others who, “Gee, only 1 out of 100 are going to benefit? I don't want that.” I think that's also the challenge. And people don't want to be denied things, but it's terrible to watch people go through very prolonged treatments when we don't know that they really need it for so long.

Dave Johnson: Pat and I both like to read. I'm wondering if there's something you've read recently that you could recommend to us.

Dr. Patricia Ganz: It's called A Gentleman in Moscow by Amor Towles. I do like to read historical fiction. This one is about a count at the time of the Bolshevik Revolution who then gets imprisoned in a hotel in Moscow and how constrained his life becomes, but how enriched it is and follows him over really a 50-year period of time and what was happening in the Soviet Union during that time. And of course, with the war in Ukraine going on, very interesting. Of course, I knew the history, but when you see it through the drama of a personal story, which is fictional, obviously it was so interesting.

My husband escaped from Czechoslovakia. He left in '66, so I had exposure to his family and what it was like for them living under communism. So a lot of that was interesting to me as well.

Dave Johnson: Thank you for joining us. It's been a wonderful interview and you're to be congratulated on your accomplishments and the influence you've had on the oncology world.

We also want to thank our listeners of Oncology, Etc., and ASCO Educational Podcast where we will talk about oncology, medicine and beyond. So if you have an idea for a topic or a guest you'd like us to interview, by all means, email us at education@asco.org. To stay up to date with the latest episodes and explore other ASCO educational content, please visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Providing high-quality cancer care to patients is the goal for any oncologist, yet there are many places across the globe that face multiple hurdles in achieving that goal. In this ASCO Education podcast we explore how one group is making a positive impact in the state of Surawak in Malaysia via the efforts of ASCO’s International Cancer Corp Program (ICC).
Dr. Roselle de Guzman, past chair of the Asia Pacific Regional Council of ASCO, Dr Voon Pei Jaye medical oncologist and onsite director of the ICC Program at Sarawak and Dr. Evangelia D. Razis medical oncologist focused on neuro-oncology from Athens, Greece and ASCO volunteer of the ICC Malaysia Program describe the benefits of implementing the efforts of Project ECHO (Extension of Community Healthcare Outcomes) (3:38), the challenges in providing quality cancer care in Sarawak (8:31) and details on how to volunteer for the ICC program (19:45).

Speaker Disclosures
Dr. Roselle de Guzman:
Honoraria - Roche Oncology (Philippines); AstraZeneca; Merck Serono, MSD Oncology Recipient, Boehringer Ingelheim, Zuellig Pharma
Consulting or Advisory Role - Roche Recipient, Novartis, Boehringer Ingelheim, AstraZeneca, Zuellig Pharma (ZP) Therapeutics, Eisai Recipient, MSD Oncology
Research Funding - Centus Biotherapeutics
Travel, Accommodations, Expenses - Hospira (Philippines), Roche (Philippines), Merck Sharp & Dohme, Eisai, Boehringer Ingelheim, AstraZeneca, Pfizer

Dr. Evangelia D. Razis:
Honoraria Company - Servier pharmaceuticals. ESMO
Research Funding – Tesaro, IQvia, AstraZeneca, Exelixis, PPD Global, MSD
Travel, Accommodations, Expenses - Genesis Pharmaceuticals, Roche, Pfizer, Karyo

Dr. Pei Jye Voon:
Research Funding - Novartis Recipient, Boehringer Ingelheim, Viracta Therapeutics Inc, ROCHE, Merck KGaA, Merck Sharp & Dohme, BeiGene, AstraZeneca, Janssen-Cilag, Johnson & Johnson

Resources
If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed in the podcast page.

Dr. Roselle De Guzman: Providing high-quality cancer care to patients is the goal for any oncologist, yet there are many places across the globe that face multiple hurdles in achieving that goal. One such location has limited trained personnel, financial constraints, geographical challenges, and limited access to healthcare service in rural areas. The location, the state of Sarawak, located in the eastern part of Malaysia. The population is almost evenly split between urban and rural areas, which are the most dispersed in Malaysia.

The major challenge in Sarawak is the inadequate connectivity in the rural area and limited access to healthcare service. To address these issues, in 2020, a collaboration was formed between Sarawak General Hospital, University of Malaysia Sarawak and ASCO through ASCO's International Cancer Corp Program, or ICC for short. The ICC program is focused on three basic goals: incorporating a multidisciplinary approach into cancer care, integration of palliative care into oncology care, and quality improvement through ASCO's Quality Oncology Practice Initiative, or COPI program. This podcast will spotlight all the planning, activities, and results thus far of the ASCO ICC program in Malaysia.

Hello, I'm Dr. Roselle de Guzman, past chair of the Asia Pacific Regional Council of ASCO. I am pleased to spotlight one of ASCO's collaborations with a lower-resource country to improve the quality of cancer care through a multifaceted approach. This year, we are focusing on Malaysia, where, through the ICC program, ASCO has been providing training in multidisciplinary care, palliative care, and quality measurement. Joining us later in the podcast will be medical oncologist Dr. Voon Pei Jye, who serves as the Onsite Coordinator for the ICC program at Sarawak.

First, we will speak to an ASCO volunteer of the ICC Malaysia Program, a medical oncologist focused on neuro-oncology, Dr. Evangelia Razis from Athens, Greece.

Welcome, Dr. Razis.

Dr. Evangelia Razis: Thank you. Thank you for the opportunity.

Dr. Roselle De Guzman: First of all, Dr. Razis, what made you want to volunteer for the ICC Malaysia program, and what has been the most rewarding aspect of this service for you?

Dr. Evangelia Razis: So, I've been actually collaborating with ICC for many years through ASCO and other programs as well, such as Honduras, and I find volunteering an extremely rewarding experience because you share and interact with colleagues from all over the world, you offer to those less fortunate, and you actually learn a lot through this process as well. So, volunteering is a very rewarding process for me, and I've been involved in it for many years. Plus, the opportunity to do something in neuro-oncology, which is very close to my heart, is very important, because this is a new field. I feel it needs to be exposed in all countries because it has many intricacies.

Dr. Roselle De Guzman: Well, that's really rewarding and must be really fulfilling work for you, Dr. Razis.

Dr. Razis, you also serve as a lead facilitator of the Project ECHO Neuro-Oncology Mock Tumor Board series, which delivers monthly online training to physicians from Malaysia. Can you tell us more about this project? What are mock tumor boards?

Dr. Evangelia Razis: So, Project ECHO, the word stands for Extension of Community Healthcare Outcomes, and it's a project that has attempted to be near community healthcare delivered in low and middle-income countries through virtual media to support the healthcare in these areas. And in this particular effort, we are holding a neuro-oncology tumor board once a month since September with the Malaysia team. It's mock because we don't actually deliver specific patient advice for the purpose of patient care. We actually do it for educational purposes. So, we present cases and then discuss a topic.

The program has been set up for several months now by the Malaysia team based on their needs, which neuro-oncology topics they want to highlight. And we have a once a month, one-and-a-half-hour session, whereby cases are presented, and then an invited speaker from several places around the world, as I'll tell you in a minute, highlights this topic and then discusses the cases and discusses the questions that the group from Malaysia has.

And not only have we been able to be joined very regularly by the Sarawak team, but other parts of Malaysia have joined in, other centers in Malaysia have joined in different occasions. Now, the speakers have been experts from Europe and the United States based on their expertise in particular neuro-oncology topics.

Dr. Roselle De Guzman: So, Project ECHO is one of those innovative ways of delivering healthcare to extraordinarily challenging environments, those which are extremely remote or under-resourced areas. So to your knowledge, Dr. Razis, what improvements have been made since the implementation of Project ECHO?

Dr. Evangelia Razis: Over the last nine months, I have noticed more insightful questions that show that some understanding of the standard neuro-oncology way of thinking, if you will, has come through to the colleagues that are joining us, though I must say that they were very knowledgeable from the beginning. I also hope that certain intricacies of neuro-oncology, such as, for example, the way to read scans and evaluate the fact that there may be pseudo progression or pseudoresponse, the way to integrate molecular parameters into the decision-making process, has now become part of the way they think about patients. And ultimately, the most important aspect has been the multidisciplinary approach to neuro-oncology and the constant use of all specialties to make a decision. Surgery, radiotherapy, radiology, pathology, all of these specialists need to come together to produce an appropriate decision for the patient.

Dr. Roselle De Guzman: So one thing that's interesting as well is in 2013, Dr. Razis, your institution, HYGEIA Hospital in Athens, Greece, was one of the first outside the United States to join the Quality Oncology Practice Initiative or COPI program of ASCO. And your program was also the one to be accredited. So, Sarawak General Hospital in Malaysia is collaborating with ASCO as well for the COPI program that focuses on quality improvement. So, based on your experience, what benefits does the COPI program bring to an institution?

Dr. Evangelia Razis: So, COPI, in fact, is an extremely useful way to streamline one's work and increase patient safety and patient satisfaction. I would also say that it helps reduce waste of resources, which is particularly important in resource-limited settings. And we do have a COPI version that is for limited resource settings. It's amazing, but just doing one's work lege artis does result not only in better outcomes but less waste. And that I think is extremely important for Sarawak. So, I think they will find it very useful to be streamlining their work through COPI.

Dr. Roselle De Guzman: Thank you, Dr. Razis, for sharing your experience, your expertise, and your insights. Now, at this point, I would also like to introduce medical oncologist Dr. Pei Jye Voon, who serves as the Onsite Coordinator for the ICC program at Sarawak.

Dr. Voon, Welcome.

Dr. Pei Jye Voon: Thank you so much.

Dr. Roselle De Guzman: Dr. Voon, can you describe what cancer care was like in this area of Malaysia for the past few years and what are the main challenges in providing quality cancer care?

Dr. Pei Jye Voon: Yes, of course. So first of all, I would like to give a brief introduction of Sarawak, which is situated at the Borneo island of Malaysia and is the largest state in Malaysia with a very large land area populated by only 2.9 million people, meaning it is very sparsely populated. And for information, newly diagnosed cancer cases in our state is about 2300 cases a year, and the common cancer include breast cancer, followed by colorectal and lung cancer, as well as a cancer that is peculiar to our setting here: nasopharyngeal cancer.

Half of our 2.9 million population, as mentioned before, are residing outside the urban area, which causes the issue of accessibility of health care, particularly good cancer care, for this rural population. It has always been a great challenge as we have only one public comprehensive cancer center, and thus inequity of access to cancer care is one of the major hurdles in providing good quality cancer care in our state here. In addition, inadequate formally trained, for example, oncologists and palliative care physicians, as well as other healthcare personnel, like oncology nurses, perioperative nurses, which has also negatively impacted the quality of care that we are providing here.

Furthermore, limited availability of good, top-notch cancer infrastructures, especially at the district hospitals outside our capital city of Kuching, also poses a great challenge to us in developing good quality cancer care across the whole state. Moreover, similar to many parts of the world, the ever-increasing cost of cancer treatment, especially on the expensive new anti-cancer drugs, is another pressing issue for us as well.

In summary, I can say that inequity of access due to the geographical barrier, lack of human resources, inadequate infrastructure, and also the ever-increasing cost of cancer, are the major challenges that we are facing here in Sarawak.

Dr. Roselle De Guzman: Thank you, Dr. Voon. I'm sure the situation in Sarawak resonates with other countries, low- and middle-income countries. Of course, there are truly challenges, but of course, with the challenges come opportunities. So what benefits or changes have taken place through this collaborative ICC program?

Dr. Pei Jye Voon: I have to say that participating in the ASCO ICC program is one of the greatest things that has happened to our radiotherapy oncology and palliative care department at Sarawak General Hospital. We have gained tremendously, definitely from that. And for instance, we have been actively participating in a highly personalized palliative care education program which is one of the highlights of this collaboration. Various projects have been successfully conducted, including the ASCO Palliative Care e-Course course, which subsequently led to the Train the Trainer’s program. This program benefited not only the Sarawak team, but also healthcare providers across Malaysia as well. And this aspect of human development in palliative care was further consolidated with the in-person training by Dr. Frank Ferris as well as Dr Shannon Moore in November last year when they came to visit us physically. We are very grateful for that.

And in addition to enhancing palliative care, another very interesting project that is actively ongoing is the project ECHO Neuro-oncology Tumor Board Series, which delivers online monthly training to physicians across Malaysia on neuro-oncology care. This was discussed by Dr. Razis earlier on in the podcast, so I'm not going to elaborate at length here. But essentially, the idea of this project was conceived initially in view of the gap that we noted in our neuro-oncology management in our hospital, as compared to those of common cancers that we are actually treating. So through the diverse lectures and many case discussions of the recent in-person visit by the ASCO team that we saw, the management of our neuro-oncology cases has definitely been enhanced and we are looking forward to Dr. Razis coming to visit us physically as well.

At the same time, we are also looking forward to the incoming multidisciplinary board project under the ASCO ICC program on breast cancer management in August this year. I believe that Dr. Guzman is going to come to visit us, and we are looking very much forward for this as well. And at the same time, this exciting project is under active planning now. Furthermore, we are also eagerly awaiting the improvement of quality cancer care programs using evidence-based quality measures via the COPI project in the near future.

Dr. Roselle De Guzman: Dr. Voon, it seems there is a lot of things happening with Sarawak General Hospital, and we know that there are so many patients globally that do not get the comforts and benefits of palliative care program. You have mentioned palliative care program. Has the ICC Sarawak program made a difference in patient quality of life thus far?

Dr. Pei Jye Voon: Again, the answer is yes. Definitely yes. So the ASCO Sarawak Palliative Care program has definitely made a great difference in the patient's quality of life. This collaborative work between SarGenHospital, our university, UNIMAS, and ASCO has been in its third year. And many important palliative care milestones in Sarawak have been accomplished. This specially designed program—I would say that this is a specially design program that fits us, that fits our needs—has been mentioned before and includes the ASCO e-course, Train the Trainer program, the mentorship program through the International Development and Education Awards through the Conquer Cancer Foundation, and last but not least is the translation of the ASCO Palliative Care Interdisciplinary Curriculum Resources to our national language to reduce the language barrier in training and education for our people here.

All these innovative programs have provided a fundamental framework of palliative care education that is invaluable in equipping our oncologists as well as oncology trainees with the necessary knowledge and skill set to better identify and also meet the palliative care needs amongst our patients. It also ensures a more competent and timely palliative care provision at a general level by the oncology team of our hospital. I think that is extremely important. And it enables the team to incorporate the best palliative care management early in the course of the disease. We call this early introduction through palliative care in our hospital. And in some ways, actually, the ASCO collaboration has enhanced the teamwork and helped the oncology team to recognize our own limitations while providing general palliative care, thereby encouraging the timely palliative care referral whenever appropriate to ensure that patients with more complex physical, psychosocial, and spiritual needs have the necessary input and support from our palliative care team throughout the course of their illnesses.

Dr. Roselle De Guzman: So we have been discussing important points on the ICC program focusing on multidisciplinary cancer care management, palliative care program, and the COPI program. What do you think are other solutions? Are there others that exist to overcome hurdles to provide quality cancer care to people in Malaysia? Dr. Voon?

Dr. Pei Jye Voon: Yes. Definitely yes as we have discussed in our conversation. So besides the ASCO ICC program, various existing and some projects which are in planning now to overcome hurdles to provide quality care to the people in Sarawak have been implemented or are currently in a very active planning phase. So in terms of inequity of access to good cancer care due to the geographical barrier, we have actually undertaken decentralization efforts of cancer care here in Sarawak. One of the actual efforts around initiatives is to host our senior long-term oncology liaison medical officers with adequate oncology experience to other district hospitals in Sarawak so that better cancer care could be delivered to patients closer to their homes. This was also consolidated with our regular visiting oncologists to these district hospitals as part of decentralization efforts as well. There is also a nursing training program for systemic treatment administration being conducted since last year in all major district hospitals, with the aim of credentialing all our nurses in the state managing cancer care patients with this essential nursing skill of administering systemic therapy in their own hospital.

In addition to that, weekly oncology and palliative care continuous medical education program across the state has been conducted since the fourth quarter of last year, to disseminate oncology knowledge rapidly to healthcare providers, especially those outside our capital city, who have inadequate exposure in oncology care. And upgrading of our cancer care infrastructure has also been actively planned and we are actually looking forward to a new comprehensive cancer center in our city in the next few years.

Besides that, our center is also robustly developing our clinical trial capacity in the hope that we can provide additional treatment options to our patients who have limited optional treatment due to cost constraints. In summary, I can say that various initiatives have been implemented to enhance the cancer care in Sarawak, and one thing for sure is the ASCO ICC program has been facilitating all this positive development.

Dr. Roselle De Guzman: So many things are happening, so many things are being done. And with all your efforts, knowledge, and expertise, of course, nothing is impossible. And it's always helpful if you have a very dedicated and committed team, right?

Dr. Pei Jye Voon: Yeah, definitely. We have a very dedicated team, that's for sure.

Dr. Roselle De Guzman: So Dr. Voon, thank you for being with us today and for your onsite coordination of the program. And Dr. Evangelia Razis, thank you for volunteering your time and insights to the ICC program and to our podcast.

Malaysia is not the only location that the ICC program has been implemented in. There are currently nine sites in Asia, Africa, and South America currently accepting volunteers. Now I would like to give a brief information for volunteers wanting to participate. ASCO pairs eligible oncology professionals with a medical center whose needs match the expertise of the volunteer. Volunteers must be appropriately trained and credentialed medical professionals who specialize in oncology. This includes physicians specializing in medical, radiation, and surgical oncology, laboratory professionals, and nurses. Final-year oncology fellows may also participate if paired with an experienced volunteer.

Volunteers spend one to four weeks on site. During that time, they teach and train staff, residents, and students, and gain insight into cancer management needs and challenges at that institution. As an added benefit, the program enables volunteers to form long-term supportive relationships with clinicians in participating countries. If you are interested in volunteering for the ASCO ICC program, please go to volunteer.asco.org - that's volunteer.asco.org - to apply. I'm Dr. Roselle De Guzman, past Chair of Asia Pacific Regional Council of ASCO.

Thank you for listening to this ASCO Education Podcast. The ASCO Education Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncology well-being and professional development. If you have an idea for a topic or guest you would like to see on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

Increasing diversity in the field of oncology is an ongoing task. Our next guest has made it her mission to increase those ranks as well as becoming the first African American woman to be a Brigadier General in the US Air Force. Dr. Edith Mitchell describes her early years growing up in rural Tennessee (2:52), the motivation for joining the Air Force in the 70’s (7:33) and strategizing to increase ethnic diversity in medicine and oncology (16:53).
Speaker Disclosures
Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University
Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical

Dr. Edith Mitchell: Leadership – Corvus; Honoraria - Sanofi, Exelixis; Consulting or Advisory Role Company - Genentech, Novartis, Merck, Bristol Myers Squib; Speakers' Bureau – Ipsen; Research Funding Company - Genentech, Sanofi
Resources (related podcasts, courses or articles)

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Pat Loehrer: Welcome to Oncology, Etc., an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a Medical Oncologist at the University of Texas Southwestern in Dallas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of the podcast is to introduce our listeners to interesting and inspirational people and topics in and outside the world of oncology.

Pat Loehrer: Imagine knowing in your heart what you wanted to be in life. It usually takes people decades to figure that out, but our next guest knew at age three that she wanted to be a doctor and, later in high school, to be an oncologist. She's achieved much in her lifetime and has incorporated the "pay it forward" by mentoring many others.

Dave Johnson: Our guest today is Dr. Edith Mitchell. I first met Edith over 40 years ago when we were both starting out our careers as junior faculty. She grew up in rural Tennessee, and as Pat mentioned, remarkably, she chose a career in oncology at a very early age in high school, despite the fact that oncology was barely a specialty at that time and the lack of role models, particularly role models of color, and women in particular. She received a Bachelor of Science degree in Biochemistry with distinction from Tennessee State University and a medical degree from the Medical College of Virginia and Richmond.

In 1973, while still attending medical school, Edith joined the Air Force, receiving a commission through the Health Profession Scholarship Program, and eventually rose to the rank of Brigadier General. She completed a residency in internal medicine at Meharry Medical College in Nashville and a fellowship at Medical Oncology at Georgetown University. Her research interests are broad and involve new drug evaluation, development of new therapeutic regimens, combined modality therapy strategies, patient selection criteria, and supportive care for patients with gastrointestinal malignancies.

She is the leader of the GI oncology program at Jefferson Medical College, Director of the Center to Eliminate Cancer Disparities, and Enterprise Vice President for Cancer Disparities at Jefferson's Sidney Kimmel Cancer Center. She's held a number of leadership positions, including those in ASCO, and she's a former president of the National Medical Association. I could go on forever. So, Edith, welcome, and thanks for joining us on Oncology, Etc.

Dr. Edith Mitchell: And thank you so much for the invitation, Dave and Pat, it is a pleasure.

Dave Johnson: You grew up on a farm, as I recall, in Tennessee. Perhaps you could tell us a little about your early life.

Dr. Edith Mitchell: I grew up on a farm that my great grandfather's mother received about 1863 when the Emancipation Proclamation was made. I was the fifth child in my family. My parents were working, my older siblings were in school, so my great-grandparents were my babysitters, so I spent a lot of time with them. He was 89 at the time, became ill, and I overheard family members and neighbors say that they couldn't take him to the hospital because Blacks were not treated properly in the hospital, so they were going to take care of him at home. A physician made a house call. When he left, I told my great-grandfather, “Pa, when I grow up, I'll be a doctor just like Dr. Logan and I'll make sure you get good health care.”

So, at three years, I decided I would become a doctor and I would make sure that Blacks received good health care. My work in disparity started when I was three. So, after my sophomore year in high school, there was a National Science Foundation program in Memphis at LeMoyne-Owen College. So, I applied and was accepted. And part of the time in Memphis that year, we were given opportunities to go to St. Jude. So my time at St. Jude made the decision that I would become an oncologist. I became really fascinated by cancers and in pathology, use of the microscope, and how cancers were all different, how they varied from the normal tissue for areas such as the colon or the stomach or the pancreas.

Dave Johnson: It's amazing that that early in your life you made that kind of decision.

Can I back up just one moment? I want to ask you briefly about the doctor that visited your great-grandfather, Dr. Logan.

Dr. Edith Mitchell: Dr. Logan was a family physician, African American, and he had a great interest in Blacks being healthy. In fact, when the polio vaccine was made public, Blacks could only go one day per week because you couldn't go the times when whites were there. Dr. Logan obtained the vaccine and he would line the children up at his office. He gave me my first polio vaccine. He was a very handsome man. And, you know, Dave, I found out later that the medical school that he attended in Memphis was one of the ones closed as a result of the 1910 Flexner Report. So he had to go to Meharry in Nashville and take other courses to maintain his license to practice medicine.

Pat Loehrer: Were you the first one to go into medicine? Tell me about that background and how your family influenced you personally.

Dr. Edith Mitchell: Neither of my parents finished 8th grade, but they were very smart. They pushed their seven children to do well. They provided educational materials in our home and encouraged us to work and to take advantage of opportunities.

Dave Johnson: Let's move forward a little bit. I thought I knew a lot about you, Edith, but I didn't realize that you were a Brigadier General. What was the motivation for joining the service in the ‘70s when you were at med school? Was it scholarship funding, or was there just patriotic zeal or a little of both?

Dr. Edith Mitchell: My main objective was, for financial reasons - a scholarship covering all expenses of medical school, plus a monthly stipend. When I was in medical school, one of my laboratory instructors told me about this new scholarship program, and I said, "Okay, I just want to graduate from medical school." So he says, "Well, I know people in the surgeon general's office. I'll have them send you the information." He did, and I looked at it and didn't remember David, that my husband filled out the application. After my neurosciences final exam, I came home, and he says, "Your commission came in the mail today." So I said, "Okay." He says, "Well, I can swear you in. We can't do it at home because you have to have a witness. You take a nap, and then we're going out to job control, which was where all the aircraft controlled, the control room." We went there. We've got a picture of the swearing-in, and we then went to the officers club. It was Friday, and there were lots of people in his group from the Air Force Academy, from Citadel, Virginia Tech, and others. And they were all talking. "Yeah, Edith got a mail-order commission.”

So I owed the Air Force two years, and I practiced at Andrews Air Force Base, which was the presidential squadron. You hear the president always leaving Andrews Air Force Base. So I think I was 29 maybe, but I was young, and here I was taking care of senators and other important people in government, and these are people I'd only seen on TV before. So I had a really good experience. I received many accolades, but also many letters from people for whom I cared for. And I was therefore invited to stay on in the Air Force, either go to Walter Reed or to San Antonio. I said, "No, I'm going to Georgetown." So one of the VIPs, if I mentioned his name, you would know, said and wrote a letter for me that the Air Force should give me whatever I wanted and whatever I needed to continue in the Air Force. So I received my Air Force pay while I was a fellow at Georgetown.

So I stayed on. I got promoted early and engaged in Air Force work. I loved it, and I did well in that atmosphere and stayed on. After my second child was born, I decided I could not continue active duty and take care of two kids. So I left the Air Force, went to the University of Missouri, and someone called me one day and said, "You know, I hear you are at the University of Missouri now. Would you consider joining the National Guard?" I went, “ Joining the National Guard? Why would the National Guard want an oncologist?” And the information was, the Air National Guard wants good doctors, and you've got a great record. They invited me to St. Louis to just see the National Guard squadron there. I filled out the application while I was there and in a few days was appointed to the National Guard.

So after being there for a few years, I was discussing with one of the higher-ranking people in the National Guard who was in Washington, but visiting St. Louis. He said to me, "You know, you've done great work." He had gone through my record, and he said, "And you know, you're one of the people being considered to be in a group for promotion. Promotion at that time meant that it was a higher rank." So he said, "There's one thing you don't have in your records, however, and other competitors in your group have." I said, "What's that?" “You haven't been to flight school.” I said, "Okay." He said, "And everybody who is going to be competing with you will have gone to flight school, and having a flight record will be an important part."

So I was in my 40s. My oldest child was 14. I went to flight school and I got my certification, and obviously, I got promoted. And I am the first woman doctor to become a General in the history of the Air Force. And it was really interesting. I'm a Brigadier General. I'm invited to give a talk someplace, and there were lots of people there. So the person introducing me said, "And she is the first African American woman to become a General in the history of the United States Air Force." So I get up to speak and I thank him for this introduction. And I said, "Yes, I was the first Black woman physician to become a General. I said, but, you know, my ancestry says that I'm 30% something white. So I guess I was the first white woman, too." There was a big roar. But I loved every opportunity, and I worked hard at every opportunity.

So when I was in the active duty Air Force, I was chief of the cancer center at Travis Air Force Base. So I made my application for research with the Northern California Oncology group, got, they said, one of the highest ratings of the applicants at that time. And I received a phone call from Air Force administration saying “Congratulations, but the Air Force cannot accept this funding from the National Cancer Institute.” There is a law saying you can't transfer money from one area of the government to the other, as they called it, a "gift," but it was a grant. So I call Phil Schein and I tell him about the situation. And he already knew that I had received a top report, and he knew that I had the grant before I knew. So he says, "Well, let's see what we can do.”

Now, remember, Vince DeVita was the NCI Chair at that time and Dr. Rosenberg. At every ASCO meeting Phil, Vince, and Dr. Rosenberg would get together and they would bring their fellows. And Bill said, “Let me see what I can do.'" So somebody at NCI made some things happen. And I got this call from Saul Rosenberg. "Edith, congratulations." So I said, "Well, thank you, but I didn't expect a phone call from you." And he says, "Well, there have been some changes. Your grant, the face sheet has been changed." I said, "Oh.”

Pat Loehrer: Your husband again.

Dr. Edith Mitchell: I can't say who or what, but it had Stanford on it. So my grant went to Stanford. I'm sure they appreciated the kick you get. But Dr. Rosenberg said, "Your grant is now Stanford. We're setting up an account for you at Stanford, and the funding goes to Stanford.” So I had people working for me at the Air Force Cancer Center who were Stanford employees.

Dave Johnson: Edith, there are still too few African American and particularly African American men in medicine. What's your perspective on that?

Dr. Edith Mitchell: I think that many people are not given opportunities, and I've been concerned about Blacks and other racial and ethnic minorities not entering medicine, and particularly regarding oncology. So fewer than 5% of all practicing physicians in this country identify as Black. Little more than 5% identify as Hispanic. And I've been trying to do something about that. So ECOG-ACRIN has been very good about allowing me, and I set up with others, but I was the lead, a program for individuals - they could either be medical students, residents, fellows, or early faculty - to attend ECOG-ACRIN. And as a result of that program, we identified 12 individuals for each of the two ECOG-ACRIN annual meetings. We bring people in, and that has been a success. There's one person I introduced when she was a resident, she then did a fellowship in oncology, and it is now in her first year as faculty. And we have students mainly from Tennessee State. I do maintain very close relationships with Tennessee State, and I have the first Tennessee State student who has just been admitted to medical school at Jefferson. So trying to work with them.

As a result of my work with the National Medical Association and the International Myeloma Foundation, we have a group of medical students that have been mentored for oncology. Whether they will become oncologists, I don't know, but they all 12 are doing well in medical school, and with some anticipation they might select oncology as their area of specialty. We set them up with an individual mentor, various oncologists around the country, and they have conducted research with their mentor.

So I'm doing things that I think will be helpful to individuals. And I think we're not giving Blacks enough opportunities. Even in entering medical school, the number of Blacks entering most majority medical schools is still very low. Somewhere nine or ten students per year, Blacks entering medical schools. And also there has been a study conducted by the ACGME, which is the Accreditation Council for Graduate Medical Education, looking at graduate studies in oncology. Do you know that most of the oncologists have been trained at a few medical schools? And there are, I think it was 109 programs did not have a single minority student in the fellowship program. And that's terrible. I think that all fellowship programs should have some racial or ethnic fellows in their programs.

Dave Johnson: Yeah. One of the disturbing statistics that I've read from the AAMC is that the number of African American men applying to medical school in 2023 and 2022 is actually less than the number that applied in the ‘70s. It's puzzling to me why we've not been able to attract young men into the medical profession, and perhaps it's because there's a sense of not being wanted or encouraged into the profession. More African American women are applying, but even that number is small, at least in terms of the increase in what we've seen.

Pat Loehrer: Edith. You're also the Associate Director of Diversity Affairs at the Sidney Kimmel Cancer Center. What does the recent Supreme Court decision against Harvard in terms of admissions policy, how are you viewing that now at Jefferson?

Dr. Edith Mitchell: So I think that the Supreme Court decision certainly was disappointing, but it is what it is, and we've got to deal with it. That is the Supreme Court. So my suggestion and what I am telling students that they have to do, you do have the essay. So when I applied to medical school, I did not talk about Dr. Logan, my growing up on the farm, or my parents not finishing 8th grade. But if I were applying to medical school now, I would use all of that background to include in my essay. And the Supreme Court didn't say that you couldn't include that information in your essay. It said the schools could not use your racial background as a part of the equation, but your letter is still there, and therefore, I would include all of that in the essay, so that you do have an advantage. We've just got to be able to do what we've got to do, not put the university or the medical school at risk because of the Supreme Court decision. But there's nothing in that decision that says you can't include that information in your letter.

Dave Johnson: I have one question. What career advice would you offer your younger self? If you could speak to your 30-year-old self based on your knowledge, experience, what career advice would you give yourself?

Dr. Edith Mitchell: So the one thing that I did not do when I was about 30 years old and I'm not sure I even knew about it, I think I could have done more in health policy, and the one thing that I have not done is become a White House fellow. And that's usually early in your career plan. But I think my research would have suffered had I done that. And I still say I don't know that I made bad choices.

Dave Johnson: No, you didn't make bad choices. Knowing you, you could have been a White House fellow and done everything else you did.

Pat Loehrer: And your husband did not make a bad choice either.

Dave Johnson: Evidently not.

Pat Loehrer: Edith, thank you so much for joining us. You've had such an incredible life, and it's so rich, and we deeply appreciate your spending time with us.

I want to also thank all our listeners of Oncology, Etc, which is an ASCO Education Podcast. This is as you know, where we talk about oncology medicine and everything else. If you have an idea for a topic or guest you'd like to see on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

In this episode of ASCO Educational podcasts, we'll explore how we interpret and integrate recently reported clinical research into practice. Part One involved a 72-year old man with high-risk, localized prostate cancer progressing to hormone-sensitive metastatic disease. Today’s scenario focuses on de novo metastatic prostate cancer.

Our guests are Dr. Kriti Mittal (UMass Chan Medical School) and Dr. Jorge Garcia (Case Western Reserve University School of Medicine). Together they present the patient scenario (1:13), going beyond the one-size-fits-all approach (4:54), and thinking about the patient as a whole (13:39).

Speaker Disclosures
Dr. Kriti Mittal:
Honoraria – IntrinsiQ; Targeted Oncology; Medpage; Aptitude Health; Cardinal Health
Consulting or Advisory Role – Bayer; Aveo; Dendreon; Myovant; Fletcher; Curio Science; AVEO; Janssen; Dedham Group
Research Funding - Pfizer

Dr. Jorge Garcia:
Honoraria - MJH Associates: Aptitude Health; Janssen
Consulting or Advisor – Eisai; Targeted Oncology
Research Funding – Merck; Pfizer; Orion Pharma GmbH; Janssen Oncology; Genentech/Roche; Lilly
Other Relationship - FDA

Resources
ASCO Article: Implementation of Germline Testing for Prostate Cancer: Philadelphia Prostate Cancer Consensus Conference 2019

ASCO Course: How Do I Integrate Metastasis-directed Therapy in Patients with Oligometastatic Prostate Cancer? (Free to Full and Allied ASCO Members)

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Dr. Kriti Mittal: Hello and welcome to this episode of the ASCO Education Podcast. Today, we'll explore how we interpret and integrate recently reported clinical research into practice. In a previous episode, we explored the clinical scenario of localized prostate cancer progressing to metastatic hormone-sensitive disease. Today, our focus will be on de novo metastatic prostate cancer. My name is Kriti Mittal and I am the Medical Director of GU Oncology at the University of Massachusetts. I am delighted to co-host today's discussion with my colleague, Dr. Jorge Garcia.

Dr. Garcia is a Professor of Medicine and Urology at Case Western Reserve University School of Medicine. He is also the George and Edith Richmond Distinguished Scientist Chair and the current Chair of the Solid Tumor Oncology Division at University Hospitals Seidman Cancer Center.

Here are the details of the patient case we will be exploring: The patient also notes intermittent difficulty in emptying his bladder with poor stream for the last six months. A CT scan of the abdomen and pelvis demonstrates enlarged prostate gland with bladder distension, pathologically enlarged internal and external iliac lymph nodes, and multiple osteolytic lesions in the lumbar sacral, spine, and pelvic bones. A CT chest also reveals supraclavicular lymphadenopathy and sclerotic foci in three ribs. So this patient meets the criteria for high-volume disease and also has axial and appendicular lesions.

The patient was admitted for further evaluation. A bone scan confirmed uptake in multiple areas identified on the CT, and a PSA was found to be greater than 1500. Biopsy of a pelvic lymph node confirmed the diagnosis of prostate cancer. This patient is somewhat different from the first case we presented in terms of timing of presentation; this patient presents with de novo metastatic high-volume disease, in contrast to the first patient who then became metastatic after undergoing treatment for high-risk localized disease.

Would you consider these two cases different for the purposes of dosing docetaxel therapy when you offer upfront triplet therapy combinations?

Dr. Jorge Garcia: That's a great question. I actually do not. The natural history of someone with localized disease receiving local definitive therapy progressing over time is different than someone walking in with de novo metastatic disease. But now, with the challenges that we have seen with prostate cancer screening, maybe even COVID, to be honest with you, in North America, with the late care and access to testing, we do see quite a bit of patients actually walking in the office with de novo metastatic disease. So, to me, what defines the need for this patient to get chemotherapy is the volume of his disease, the symptoms of his disease – to be honest with you – and the fact that, number one, he is clinically impaired. He has symptomatic disease, and he does have a fair amount of disease, even though he may not have visceral metastasis. Then his diseases give him significant pain.

Oral agents are very good for pain control. I'm not disputing the fact that that is something that actually these agents can do. But I also believe I'm senior enough and old enough to remember that chemotherapy, when it works, can actually really alleviate pain quite drastically. So for me, I think that the way that I would probably counsel this patient is to say, "Listen, we can give you ADT plus an oral agent, but I really believe your symptomatic progression really talks about the importance of rapid control of your disease.” And based upon the charted data from the United States, and equally important, PEACE-1, which is the French version of ADT, followed by abiraterone, if you will, and certainly ARASENS is the standard of care for me for a patient like this will be triple therapy with ADT and docetaxel.

What I think is important for us to remember is that, in ARASENS, it was triple therapy together. I am worried sometimes about the fatigue that patients can have during the first six cycles of docetaxel. So oftentimes, I tell them if they're super fit, I may just do triple therapy up front, but if they I think they're going to struggle, what I tell them is, "Hey, we're going to put you on ADT chemotherapy. Right after you're about to complete chemo, we'll actually add on the darolutamide." So I do it in a sequence, and I think that's part of the data; we just still don't know if it should be given three at front or ADT chemo, followed by immediately, followed by an ARI. So I love to hear if that's how you practice or you perhaps have a different thought process.

Dr. Kriti Mittal: So I usually start the process of prior authorization for darolutamide the day I meet them for the first time. I think getting access to giving docetaxel at the infusion center is usually much faster than the few weeks it takes for the prior authorization team to get copay assistance for darolutamide. So, in general, most of my patients start that darolutamide either with cycle two or, depending on their frailty, I do tend to start a few cycles in like you suggested. I've had a few patients that I've used the layered-in approach, completing six cycles of chemotherapy first and then layering in with darolutamide.

I think conceptually the role of intensifying treatment with an androgen receptor inhibitor is not just to get a response. We know ADT will get us a PSA response. I think the role of an androgen receptor inhibitor is to prevent the development of resistance. So, delaying the development of resistance will be pertinent to whether we started with cycle one, cycle six, or after. So, we really have to make decisions looking at the patient in front of us, looking at their ECOG performance status, their comorbidities, and frailty, and we cannot use a one-size-fits-all approach.

Dr. Jorge Garcia: Yeah, I like that and I concur with that. Thank you for that discussion. I think that you may recall some of our discussions in different venues. When I counsel patients, I tell the patients that really the goal of their care is on the concept of the three Ps, P as in Peter. The first P is we want to prolong your life. That's the hallmark of this regimen, the hallmark of the data that we have. That's the goal, the primary goal of these three indications is survival improvement. So we want to prolong your life so you don't die anytime soon from prostate cancer.

The second P, as in Peter, is to prevent, and the question is preventing what? We want to prevent your cancer from growing, from growing clinically, from growing radiographically, and from growing serologically, which is PSA and blood work. Now, you and I know and the audience probably realize that the natural history of prostate cancer is such that traditionally your PSA will rise first. There is a lead time bias between the rise and the scan changes and another gap in time between scans and symptoms. So it's often not the case when we see symptomatic disease preceding scans or PSAs, but sometimes in this case, it's at the same time. So that is the number one. And as you indicated, it’s prevention of resistance as well, which obviously we can delay rPFS, which is a composite endpoint of radiographic progression, symptomatic progression, and death of any cause.

But the third P is I called it the P and M, which is protecting and maintaining, and that is we want to protect your quality of life while we treat you. And we want to maintain your quality of life while we treat you. So to me, it's critically important that in addition of aiming for an efficacy endpoint, we don't lose sight of the importance of quality of life and the protection of that patient in front of us. Because, undoubtedly, where you get chemo or where you get an oral agent, anything that we offer our patients has the potential of causing harm. And I think it is a balance between that benefit and side effect profile that is so critically important for us to elucidate and review with the patient.

And as you know, with the charted data, Dr. Alicia Morgans now at Dana-Farber, published a very elegant paper in JCO looking at the impact of docetaxel-based chemotherapy as part of the charted data in the North American trial and into quality of life. And we clearly define that your quality of life may go down a bit in the first few months of therapy, predictably because you're getting chemotherapy. But at the end of the six months, nine months, and certainly at the end of a year mark, the quality of life data for those who receive ADT and chemotherapy was far better than those who actually got ADT alone.

Now, if you look at the quality of data for RSNs, a similar pattern will appear that although chemotherapy is tied to misconceptions of significant toxicity, in our hands, in good hands, and I think our community of oncology in North America are pretty familiar with the side effects and how to manage and minimize side effects on chemotherapy, I think it still requires a balance and a thoughtful discussion to make sure that we're not moving forward chasing a PSA reduction at the expense of the quality of life of the patient. So I think orchestrating that together with the patient as a team is critically important as well.

Dr. Kriti Mittal: Thank you, Dr. Garcia. Moving on to the next concept we'd like to discuss in today's podcast the role of PARP inhibitors. Case Two was treated with androgen deprivation docetaxel and darolutamide. Consistent with current guidelines, the patient was also referred to germline testing and was found to be BRCA 2-positive. The patient's disease remained stable for 24 months, at which time he demonstrated disease progression, radiographically and clinically, and his disease was termed castration-resistant. There has been a lot published in the last few years regarding the role of PARP inhibitors in metastatic castration-resistant prostate cancer, or mCRPC.

The PROfound trial led to the approval of olaparib in patients with deleterious mutations in HRR genes for those who had been treated previously with AR-directed therapy. The TRITON2 trial led to the approval of rucaparib in the same month for mCRPC patients with BRCA mutation for those patients who had previously been treated with AR inhibitors and taxine-based chemotherapy. More recently, we saw data from the TRITON3 trial exploring the role of rucaparib versus physicians' choice of docetaxel versus AR-inhibitor therapy in the mCRPC space for patients harboring BRCA 1, BRCA 2, or ATM mutation. Based on these data, it would be very tempting to offer a PARP inhibitor to the patient in case two. While regulatory authorities are still reviewing those data for approval, how would you consider treating this newly castrate-resistant patient in the frontline setting? Would you consider a PARP inhibitor in the frontline treatment of mCRPC in this patient with a BRCA 2 mutation?

Dr. Jorge Garcia: So that's a loaded question, to be honest with you. We have compelling data, but controversial data, as you know as well. So I think that since we have a genomic profile on this patient and we know he had high volume disease, then the first thought to me is not a genetic or a genomic question or a sequence. It's actually a clinical question, to be honest with you. And that is: How are you progressing? Because I think that if you're progressing serologically, you and I may think of that patient differently. If you're progressing radiographically with alone plus minus PSA production but no symptoms, you may also tilt your scale into this life-prolonging agents in a different way. Whereas if you have true symptomatic disease, knowing what you know, prior therapy, CrPC with a BRCA 2 alteration, then you may actually go for something different.

So if it's a rising PSA, if it is radiographic, but the patient is stable clinically, is not basically compromised by symptomatic disease, I do feel that a PARP inhibitor as a single agent would be a very reasonable choice. In this case, you can use, obviously, rucaparib. You can use olaparib. I don't have a vested interest in either/or. I think either/or is fine. The subtleties and side effects, as you know, the olaparib data was probably the data that you and I probably are more accustomed to, used to the most just by virtue of how the agents got registered in the United States. But either/or, I think a PARP inhibitor would be a reasonable approach.

I think the question perhaps, and I pitch that back to you, is what are you looking for with a PARP inhibitor? Because, as you know, all DNA repair deficiencies are not biologically the same. They do not respond the same way to PARP inhibitors. And even BRCA 2, where we think it's monoallelic or biallelic, may have subtleties in how those patients respond to PARP therapy. But the answer is yes, obviously, you have a biomarker, the patient has it, you can use it. I think the question is, how are you going to follow the patient? And what is going to be the endpoint that you're going to pay attention to in this case to find that the patient has a benefit or not granted, that could be PSA driven, but I think that perhaps I'm pushing you to think beyond PSA.

Dr. Kriti Mittal: I agree, Dr. Garcia. I think we need to think about the patient as a whole. PSA-based changes in treatment are not generally part of our practice. I think evaluating the patient for symptoms and also thinking about the sites of progression, sites of disease they've had in the past, preventing development of cord compression, because some of these patients progress very rapidly and present with cord compression at the time of progression. Those are the things we are trying to predict and prevent. I think in a patient with BRCA 2 mutation, in this situation, I would feel compelled to offer rucaparib, given that even in the intention-to-treat analysis, the hazard ratio was 0.6 in terms of median progression-free survival. I think what was quite impressive was the subset analysis comparing rucaparib versus docetaxel. And that was something surprising. And I think we'll have to wait for long-term outcomes. But certainly, for a BRACA 2-mutated patient, this could be a reasonable consideration provided the drug is available and approved.

Dr. Jorge Garcia: As you know, the three most common DNA repair deficiencies that we see are BRCA1, BRCA2, and ATM. BRCA2 is probably the one that we see the most. But we also recognize that with the limited data we have for ATMs, that patients with an ATM abnormality do not tend to benefit the most. And then yet we have also another series of DNA repair deficiencies, deficiencies, PALB2, CHEK2, CDK12 and so forth. And yet we have some exquisite responses to some of those patients.

So I can tell you that I have a patient of mine who had an ATM mutation, a germline ATM mutation, and I predicted that initially that the likelihood of benefit to a PARP inhibitor would be low. He was placed on a PARP inhibitor and surprise, surprise, he was on a PARP inhibitor for almost a couple of years. What I want to convey to the audience is that if you have the appropriate biomarker, you certainly should consider a PARP inhibitor in this scenario.

I think the bigger question is also understanding that not every DNA repair would benefit the same way. So being very thoughtful and very structured as to how you're going to manage the patient, it cannot be PSA only, the patient has to be followed radiographically and clinically because I would argue that if this patient had just a serologic progression, I would put the patient on a PARP inhibitor and the PSA kinetics change north, but slowly, what is the urgency of you switching the patient to something else?

And also the misconception that if you look at PROfound, that olaparib for that matter has to always be given after docetaxel. That's not the case. The makeup of PROfound is different than this patient, obviously, because this patient got triple therapy upfront, whereas most patients on the PROfound were CRPC who receive chemotherapy in the CRPC space. But yet undoubtedly, I think that your case illustrates the importance of next-generation sequencing and the importance of understanding the access to two oral PARP inhibitors that are super solid.

I think that perhaps the bigger question is going to be should you do a PARP inhibitor alone or should we use a combination of a PARP inhibitor plus an oral agent, such as in this case, maybe abiraterone acetate plus olaparib. Or maybe even thinking of TALAPRO, maybe enza plus a PARP inhibitor. So I don't know where you sit on those thoughts, Doctor-.

Dr. Kriti Mittal: I change toxicity considerations, temper my enthusiasm for offering PARP inhibitors in combination with AR inhibitors or abiraterone at this time. I think I would certainly consider monotherapy with rucaparib for a patient in this situation. I am not entirely convinced that putting a patient through dual treatment in the mCRPC setting in the frontline, I don't think we are there yet.

Dr. Jorge Garcia: There are two very important trials that are looking at the combination of an adrenal biosynthesis inhibitor plus olaparib in this context, and one is PROpel and the other one is MAGNITUDE. And both trials have very different results in many ways because they look at patients with a biomarker, meaning DNA repair, and patients without the biomarker. And I think the bigger question is, should this patient who was an abiraterone– Let's say this patient hypothetically was on a PEACE-1-like style. So the patient got ADT or triple therapy but was an abiraterone or an adrenal biosynthesis inhibitor instead of chemotherapy. And the patient was progressing slowly on abiraterone, you knew that the patient had a DNA repair deficiency. How comfortable with the PROpel and MAGNITUDE data would you and I feel to add on or layer, if you allow me to express it like that, a PARP inhibitor into this regime?

Dr. Kriti Mittal: My personal interpretation of the currently available data is that at this point, combination therapy is not something I would use in my clinical practice. I think there are two camps in the GU oncology community of how people interpret the PROpel, MAGNITUDE, TRITON, and TALAPRO data in full. I think each of these trials had very different patient populations. I think in a biomarker unselected population, I would certainly not advocate for combination therapy. But even in the biomarker-selected population, I think how the biomarkers were tested and how the populations were defined may not always match what we are doing in clinical practice. And so I would, at this time, advocate for monotherapy over combination therapy.

Dr. Jorge Garcia: I'm sure the audience will have probably read or heard about PROpel and MAGNITUDE and the data in patients without a biomarker positivity disease. So I'd love to hear your thoughts as to if you had no biomarker. By that I mean if you had a patient with CRPC, with metastatic CRPC without a DNA repair deficiency, would you consider using an adrenal biosynthesis inhibitor and a PARP inhibitor together based upon the potential synergistic of additive benefits and some of the data to suggest that you can delay rPFS when you combine therapy, but in the absence of biomarker positivity.

Dr. Kriti Mittal: In the absence of biomarker positivity, I think the preclinical data are stronger than the clinical results we are seeing in trials. So while I think we should continue researching further into this because there certainly is preclinical rationale, looking at the clinical outcomes from these several trials, I would not offer PARP inhibitor to an unselected patient.

Dr. Jorge Garcia: Great.

Dr. Kriti Mittal: Moving on to second-line treatment for castration-resistant prostate cancer. I think talking of access issues and talking about the current treatment paradigms in the United States, there is still not widespread availability of lutetium. The listeners would love to hear your thoughts, Dr. Garcia, on practical management tips, safety issues, and the multidisciplinary nature of the management of lutetium therapy.

Dr. Kriti Mittal: So I think the challenges with lutetium are multiple. Number one is the correct identification of the patient, the ideal patient for lutetium. Secondly is who manages the patient and as you indicated, the importance of a team approach in that. Thirdly is how do we follow that patient during therapy? So it's beyond the technical aspects of who infuses the patient. Fourthly is what are the true goals of lutetium for that patient population and the side effects that those patients may embark on that some people may not be fully aware of and creates complexity. And lastly, perhaps, is how the movement, how we develop lutetium in CRPC and how we're going to move lutetium or have started to move lutetium and alike, meaning radiopharmaceuticals, radioligand-based therapies outside lutetium ~~opinion~~ and others as you know, earlier into the natural history of prostate cancer, maybe even in the locally advanced disease in combination with radiation or for patients with N1 positive disease. So it's a lot of movement in that space. I think that this is just the beginning of radiopharmaceutical entering diagnostics.

But let me just address this succinctly, if I may. Number one, you do need a PET PSMA in order for you to select the patient because we're talking about a potential biomarker. But this is what I call an imaging biomarker. If you see it, you treat it. So the standard of care right now for lutetium is very simple: you need to have men with metastatic castration-resistant prostate cancer. Two, you need to have failed a prior oral agent, in this case, a novel hormonal agent, independent of which agent you have seen, independent of the timing when you have seen an oral agent at the front, the middle, the end. And lastly, you have to have progress through chemotherapy. Yet again, it depends on when you see chemo.

So if you have someone who has high volume metastatic disease from the beginning, de novo disease, and you got ADT, daro, and docetaxel, and the patient progresses, that patient can go on. If that patient has a positive PSMA PET, that patient can go on to get lutetium. Similarly, if you have someone who got ADT alone in the adjuvant space for radiation therapy, progress, got an oral agent, progress, got a PARP or not, or got docetaxel, that patient could also be a candidate for lutetium. It's dependent on how you run the patient through therapy.

Secondly is who gives lutetium? So I do believe, and I may be biased, I certainly believe in the importance of a team approach with radiation oncology and nuclear medicine. But the reality of it is, I believe these patients are so advanced in their stage of their disease, then the idea of quarterback, in my personal opinion, resides in medical oncology. And I think the bigger question is going to be if nuclear medicine at your given institution is going to be delivering lutetium, or is it going to be radiation oncology? And I think, as you know, in places in America, it's RadOnC, in other places is NucMed, in our institution right now it is NucMed. Having said that, I do predict that for those places where nuclear medicine is heavily involved in delivering lutetium or partnering with MedOnc to deliver lutetium, radiation oncology in the future will have a bigger role as well because we are moving lutetium earlier in settings where radiation oncology is commonly used, such as high-risk prostate cancer patients, or even in the salvage setting, or even in patients with metastatic disease, where we want to combine radiation and lutetium, which are part of clinical trials as we think through for the future. But either/or, I think the quarterback should be really MedOnc in this case.

Thirdly is how do we do it? So clearly, at least in my practice, and I think it's probably standard across the United States, MedOnc will see the patient, determine viability and feasibility of therapy, determine who's the ideal candidate, discusses the pros and the cons, and then works along with RadOnc or NucMed to start the process. As you know, it is once every six weeks. So here in my practice, we will see the patient every time before treatment. Sometimes we see them the day off, sometimes we see them a few days before. Patients will get blood work. Specifically, we're interested in seeing everything CMPs, but certainly blood counts, red cell counts, platelets, and white cell counts, just to make sure that patients do not start with impaired bone marrow that can increase the risk for myelosuppression and therefore significant challenges with side effects, hematologic side effects, specifically. And we do that.

Sometimes we see them, sometimes our nurse practitioners would do so. And then the patient will basically follow through and complete up to six cycles of treatments. Six times six, that's actually 36 weeks or so. That’s a long time on therapy for those who can get six cycles. I think the question becomes how do you follow those patients? And if we pay attention to the VISION data, as you know, those patients were actually followed serially quite closely on trial every eight weeks for the first 24 weeks, and then they stretch the scans out. But the scans that we're using in the trial are conventional imaging.

And I think the bigger question that you and I will have is if we get a PET PSMA to use to make that decision to get on lutetium PSMA, should I go back and use a CT or so to stage the patient? I think we're moving more toward PET follow-up, but we also don't know fully the impact of lutetium PSMA on PSMA metabolically during treatment. I think that we all recognize anecdotally and at least with some of the emerging data and we have the SUV may change, that PSA reductions also appear to be important as to define who is likely to benefit or not. But those are questions that remain to be seen, to be honest with you. We follow the patients serologically, clinically, and radiographically. And at least in my group, we tend to do PSMA PETs in between therapy to ascertain the impact of therapy in radiographic and also metabolic changes.

And lastly is how we manage side effects. So I think that I'm pretty OCD about these patients because I have seen in my practice patients having outstanding responses to therapy but unfortunately become transfusion dependent, either transiently or permanently, just by virtue of side effects. And I think the importance of understanding the most common side effects of lutetium, in this case fatigue, myelosuppression, xerostomia, are really, really important. And that is the importance of having a multi-team effort approach so everybody is fully aware of the baseline characteristics of that patient or how the patient is enduring therapy and how the therapy is impacting the quality of life and impacting bone marrow production for those patients.

I think I remind the audience that the vast majority of our patients do have bone metastases. In fact, in the VISION trial it was around what, over 85, 90% of patients are so with bone metastases. So their marrow has already been impacted not only by disease but equally importantly by the prior chemotherapy that they may have seen. And some of the patients that we have in the first bubble effect is they have seen probably docetaxel, some may even have seen dual therapy with cabazitaxel as a second-line chemotherapy. So I think the understanding as to how you manage the side effects is critically important for our patients as well.

Dr. Kriti Mittal: Those are very relevant, practical life issues. Thank you Dr. Garcia for a terrific discussion on the application of recent advances in prostate cancer to clinical practice. [28:54] The ASCO Education podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologists' well-being and professional development. If you have an idea for a topic or a guest you'd like to see on the ASCO Education Podcast, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org.

Dr. Jorge Garcia: Thank you, Kriti. It's great to see you and thanks again to ASCO for the amazing opportunity to be here with you guys today. I hope the audience can see the benefit of understanding how the many changes we have seen have impacted our patients in a positive way. So thank you again for the opportunity.

Dr. Kriti Mittal: Thank you, Dr. Garcia, and thank you so much to the ASCO team for inviting me. This was a great experience.

Thank you Dr. Garcia for sharing your perspective on incorporating recent research advances into the management of patients with de novo metastatic prostate cancer.

The ASCO Education Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologists' well-being and professional development. If you have an idea for a topic or a guest you'd like to see on the ASCO Education Podcast, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

There are many treatments available for cancer but how do you make csre delivery equitable? Given the various types of cancers how can you allocate the right resources to create equal outcomes? Dr. Lori Pierce has made equity a primary focus of her career. She describes how physics and radiology inspired her to be an engineer (6:06), and the moment she decided to transition from engineer to oncologist (12;54) and achieving the position of Vice-provost at the University of Michigan (23:01).

Speaker Disclosures
Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University

Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical

Dr. Lori Pierce: Stock and Other Ownership Interests Company - PFS Genomics; Patents, Royalties, Other Intellectual Property Company - UpToDate, PFS Genomics; Uncompensated Relationships - Bristol-Myers Squibb, Exact Sciences

Resources
If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

Disclosures for this podcast are listed in the podcast page.

Pat Loehrer: Welcome to Oncology, Etc. This is an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: Hi, I'm Dave Johnson at UT Southwestern in Dallas, Texas. I'm a Medical Oncologist. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of the program is to introduce listeners to interesting people and topics in and outside the world of oncology; hence the ‘et cetera’ in our name. Pat, we've got a great guest today. And we’ve got a great guest today.

Pat Loehrer: Our next guest was able to do this despite living at a time when in the United States, certain groups of people faced tremendous barriers to achieve even the basic hint of equality. Our next guest is Lori Pierce. Dr. Pierce attended Duke University School of Medicine and completed a radiation oncology residency and chief residency at the Hospital of the University of Pennsylvania. She was then appointed as a senior investigator at the National Cancer Institute, the National Institutes of Health in Bethesda, Maryland, from 1990 to 1992. And in 1992, she joined the faculty at the University of Michigan, where she currently is a professor with tenure in Radiation Oncology.

Since coming to Michigan, she has served as Residency Director and Clinical Director in the Department of Radiation Oncology. In August of 2005, she was appointed by the University Board of Regents to be the Vice-Provost for Academic and Faculty Affairs, a position she still holds. In 2020, she was ASCO President, and while she ascended to the ASCO Presidency, that year COVID descended upon the Earth, and we may hear some stories about that. She's dedicated her career to the treatment of breast cancer patients. She's published over 200 manuscripts and book chapters and has received numerous teaching awards from the University of Michigan, multiple national organizations, and many national awards.

Dr. Pierce, thank you so much for joining us today.

Dr. Lori Pierce: I am so happy to join you both today. What an incredibly nice introduction. Thank you so much.

Pat Loehrer: You were born and raised in Washington, DC. And the family eventually moved to Philadelphia when I think you were in junior high school. Can you paint a picture of what schooling was like for you growing up?

Dr. Lori Pierce: Well, schooling, education was just so important to my family and myself. And so, as you said, I was born and raised in DC. Moved to Philadelphia when I was just entering high school. And my parents, who are just the best people on the planet, didn't have an opportunity to go to college. At that point, a lot of people of color didn't really have that opportunity. So education was so important in my family. So if you think about the important issues in my life, there was our faith, our family, and education. And so my sister, who is four years older, she went to college first. After about two years, I transferred and actually graduated from the University of Pennsylvania, and I did that. It was my idea.

My parents at that point were living in Philadelphia. My mother was working at Penn, and so I would have free tuition if I went to Penn. And Penn is a great place as is Brown. My parents didn't ask me to transfer, but I did. And I received, obviously, an excellent education at both institutions. I majored in biomedical engineering and I minored in chemical engineering and was pre-med. I had to be strategic in how I was going to pay for my education because my parents and they took out loans, they covered everything, almost everything. My sister and I had some loans, but they took out most of the loans.

But they always had an agreement. And the agreement was that both my sister and I would have our college education covered by them. But anything in the graduate arena, we had to cover. So I had to be kind of strategic about that. So I actually applied to medical school and, as you know, got in, and deferred my admission so I could work and earn some money so I could pay for medical school. And I tell you, I did that specifically for the reason, for financial issues. But now this kind of thing is called a gap year. And in retrospect, it was the smartest thing I could have ever done because I took some time away, and during that time away, it made me even more motivated to apply my full attention to medicine.

And so education was very important. But I think sometimes you have to kind of step away to then regain the commitment that you need to move forward. And so by the time I started Duke, I was more than ready to be in medical school.

Pat Loehrer: I know we talk about underrepresented minorities. I was a mechanical engineer at Purdue. And I can tell you, I don't think there was a single woman in engineering in most of my classes. There were just a few. So to be a woman in engineering is extraordinarily unique. So tell me a little bit about that decision-making and how you got into that. It may have been different in 10 or 15 years later, but were there a lot of women in engineering?

Dr. Lori Pierce: No, not at all. And while there may have been two or three in biomedical engineering, there were hardly any in chemical engineering, and as you said, very few in mechanical engineering. So no. But I always was interested in physics. I liked those kinds of things, and hence I went into radiation oncology. It was a perfect blend of my studies and my interest. But no, I often was the only woman, or maybe one of two or three women in my classes, and I was certainly the only person of color in my classes.

It taught you things though. It taught you to be comfortable being in that position and to know that you could do it just like anyone else could, and to know that probably a lot of eyes were on you to succeed. Some of that was self-imposed, but some of that was real. But I think learning those lessons then certainly came in handy when I went into medicine because while there are more women in medicine, especially now, compared to what it was when I came through, still, at that point, we were in the minority. And there were very few people of color in medical school where I went to. I was at Duke, and very few people there. You learned lessons early on, right?

Dave Johnson: Where did this interest in engineering originate?

Dr. Lori Pierce: So it was really more of physics and radiology. So I, as a kid was a really thin kid, and I broke a couple of bones, and I ended up going to get X-rays. And I was fascinated by the X-rays. I was fascinated by this physics. I was fascinated by how you could push this button and these images would appear and I could see my broken bone. So that was really where it came from.

So I was pre-med. I did a lot of my pre-med work at Brown, and during the summers I was working in an industry. I was actually in Scott Paper Products industry outside of Philadelphia. And a couple of the other people there who I worked with closely were engineers. And I was just fascinated by it and seemed to be a good way of moving forward my own interest in the physics and the machinery and how it all worked. So I actually switched into engineering. So I switched from Brown to Penn. And being an engineer, it was a great way to make a good living for a year and a half.

And I think as an engineer, and Pat, you can probably attest to this, you think in a certain way; you become very methodical in how you approach things. And while I'm sure there are a lot of other disciplines that will give you a similar type of approach, engineering really does—you're very objective in how you make decisions, and I think that serves well. And then, as I said, going into radiation oncology it was just a match made in heaven, so it all worked out great, I think.

Pat Loehrer: I think I read that your sister was also into math, is that right?

Dr. Lori Pierce: My sister's a systems engineer with IBM. Incredibly gifted.

Pat Loehrer: Yeah. Tell me about your parents. How did they guide you? What were your role models in terms of both you and your sister, in terms of math, physics, engineering?

Dr. Lori Pierce: I already said my parents were incredibly hardworking and good people. They both had high school graduation education. My mother went straight through, but my father had to get an equivalency for his high school diploma because he was born and raised in North Carolina, had to work on the farm, and didn't get a chance to stay in school. But he got the equivalency of his high school degree.

It was interesting, my dad was just incredibly gifted for math. My father was just amazing in math. And my father and I always hung out. He was like my best friend and so I think my emphasis on math in part came from my dad. And I’ll say that both my parents didn't, weren’t able to get a college education, but they were two of the smartest people I ever knew. My father and my mother, but I just hang out more with my dad, had amazing common sense and whipsmart math. I'm sure that a lot of where I ended up is because of my dad.

Dave Johnson: You mentioned that you had family in North Carolina. I remember reading that you were influenced by some of the people you met in North Carolina with respect to your medical career. Can you tell us a little bit about that? I think a Dr. Weaver, was it?

Dr. Lori Pierce: That's right. Doc Weaver. That’s right. So I used to spend a lot of my summers in North Carolina with my father's family. And Dr. Weaver was an African American family medicine doctor who took care of the vast majority of people of color in the town of where my father's family is from. Whenever anyone had issues and needed medical care, he came to the house. He was the doctor for people of color. I sat back- and take it in a lot when you’re young - people never really know how much you're listening and seeing, but you take in a lot. And you see just how revered he was, and he should have been, because he was largely the face of medicine that a large part of that town saw. And that stuck with me. A couple of times, I went with him when he would see patients. Without a doubt, this factored into my wanting to go into medicine. I think that coupled with my interest in those x-rays and the physics of the x-rays, I think that's how it all came together, but Doc Weaver.

Pat Loehrer: So you mentioned you did a gap year, which was somewhat unusual at that point. I did a gap year as well for the exact same reason - I wanted to not incur a lot of debt or at least try to defer the debt as much as possible. What did you do in your gap year, and how did that impact your medical training or did it?

Dr. Lori Pierce: It definitely did. My gap year was actually 18 months. I moved to Austin, Texas, and I worked in Round Rock, Texas, that was at a time when Round Rock was just a sleepy little town just north of Austin. I haven’t been back since. I know Dell computers is now there and now it’s almost you can’t see a difference between Austin and ROund rock, but that was not the way it was on those days. And I worked in Round Rock because McNeil Consumer Products was there.

I worked at McNeil Consumer Products, they make Tylenol. I was the second-shift Glatt supervisor for Tylenol. So Glatt is the machine that mixes up all of the ingredients for Tylenol and it was something that I knew going in that it was only going to be short-lived so I could probably live almost anywhere. And I thought, okay, I’d been on the east coast all my life, let me see what the rest of, another part of the country is like.

It was an amazing experience. To go from Brown to the University of Pennsylvania, DC, and Philadelphia, to Round Rock, Texas. In retrospect, I couldn’t have picked a better place. I mean I soaked up a little local color, went to some things that the Texans do, and rodeo, that kind of thing. But more importantly, I met people who I would’ve never met on the east coast. These were people who largely had not been outside of the Austin area. One person said she’d never seen a black person before. That kind of surprised me.

So it was a swath of America that I had not been exposed to. It was not easy. But in the end, it was the best thing, because you realize, people are people. And while you might be put off at first because they’re put off with you and you put off with them, at the end of the day, it was a great experience of getting to know people who can further enrich your life. And I think that has helped me in medicine in terms of interacting with patients no matter where they’re from, no matter what their background, what their financial situation is, people are people.

I was on my own. I was truly on my own. And that gap year was invaluable far more than helping me pay off medical school loans.

Pat Loehrer: You've focused into radiology and obviously there's diagnostic radiology and therapeutic radiology. How did you end up choosing the career that you eventually championed so well?

Dr. Lori Pierce: At the time I went to medical school at Duke, at Duke, radiation oncology was a division of radiology so they had not separated yet. While I was at Duke, they recruited in their first chair of radiation oncology into separation. So long story short, when you’re at Duke in medical school, your third year is all research. You could go into a lab and do research. And so when I met with my radiology advisor and looked at the list of options of projects I could sign on to, the one that happened to be most interesting was being done by a radiation oncology researcher in radiology. And I thought, well, it looks interesting, but I don’t want to do that because I want to go in radiology so I need to have a radiology project. And my advisor said, “No, it’s okay. Radiology programs, they’ll take radiation experiments. You can still use that and apply to radiology.” So I said “Okay, that looks really interesting.”

So I opted to go with that choice and it was during that year that radiation oncology separated. A chair came in, Dr. Lenny Prosnitz from Yale, and he said, “Why don't you just come down and see what it is that we do?” So when my experiments were set up, I would run down into the basement because we’re always in the basement, and I would follow him around and I just loved it because it gave me the physics that I wanted, I got really interested in cancer biology. And I think with my personality, I work well with patients. I love patients. That patient interaction is when I’m at my best. And I wouldn’t have had that in radiology. With all due respect, radiology is so important, but you have to do what you gravitate toward, and those interactions when I was following him around with patients. So I never looked back, I changed at that point and decided to go into radiation technology.

So I was at Penn for residency and chief residency. When I was getting ready to leave to go to the NCI, the person, Barbara Fowble, who was a well-known breast radiation oncologist, took a sabbatical and asked if would I stay the year she was taking sabbatical to run the breast service. So I deferred going to the NCI to stay at Penn for an additional year as an attending and then went to the NCI when she came back from her sabbatical. I worked with Eli when I got to the NCI.

Pat Loehrer: And Norm Coleman, too?

Dr. Lori Pierce: And Norm from a distance. He’s great. He came in for comedic relief. It was in a while, but he and Eli and Tom Delaney. It was a great time to be at the NCI. It was shortly after that, about a year or so into that when things started changing, Eli left to go to UT Southwestern. But it was a great time to be at the NCI.

Dave Johnson: So you've worked with some of the giants of radiation oncology for sure?

Dr. Lori Pierce: I did. And the NCI was known as the places where the giants launched. So the Allen Lichters, the Joel Teppers. I mean, I could go through a list. They all had worked with Eli, and Allen was no longer there. Allen had already gone to the University of Michigan. He subsequently recruited me to Michigan. But the radiation oncology branch, the Marc Lippmans of the world, it was a magic time. Even though some of them weren't there, their footprint, their stamp was on the program, and it was really good. And working with Eli was just great.

Dave Johnson: So is that where you're working with Barbara where your interest in breast cancer or was it that you mentioned you had an interest in the biology? Where did that interest in breast cancer originate?

Dr. Lori Pierce: It came from working with Barbara. So it was a combination. Barbara, who is one of the most amazing people to this day, that I've ever worked with, her command of the data, her synthesis of the data, her interaction with patients. Most people don't appreciate of just how great a clinician Barbara Fowble was. And so it was admiration for that. So she was a part of it, but John Glick was the other part.

So John, of course, who everyone knows, the giant in the field, and I think at the time, not sure if when I was a resident, he was the president of ASCO. Even if he wasn't the president at that point, he was certainly highly integrated with ASCO, and he kind of took me under his wing. I'm not sure why, but I was very interested in breast cancer. So he would like bring me over to the Med On clinic and teach me more about chemotherapy. So I had John and I had Barbara, and then also the mammography group was very supportive of me. I would come in literally on weekends and meet with the head of mammography, who would test me on mammograms, reading mammograms. So it was just a very supportive environment. And certainly, breast cancer was the area that I wanted to focus on. It was a great group to train under.

Pat Loehrer: Dave and I had the opportunity a short time ago to interview John Glick. And as you're talking, one of the wonderful things about our field of oncology is how it's a close-knit network and there's so much mentoring. And John took both Dave and I underneath his wings, and he had no really rationale for doing that. But Eli, I mean, there are so many wonderful people that we've had the opportunity of meeting. And you yourself have mentored so many other people in another generation. It's hard to explain to people outside of oncology about how special this field is, I think.

Dr. Lori Pierce: It absolutely is. And it's an honor for me to serve as a mentor because once you're a mentor, you always mentor. I mean, John, I'll run things by John to this day. Once you develop that closeness and you know them and they know you, you savor that, it never goes away.

Dave Johnson: What would you tell a junior faculty or fellow are the characteristics of a great leader? What do you think makes for great leadership?

Dr. Lori Pierce: That's a great question. First and foremost, you listen. You need to listen and understand what your mentee, what it is they're seeking, what it is that they want to study, where they feel they are somewhat inadequate, and they want to improve. What is it that they want to accomplish with that relationship? Because as you and Pat both know, mentors come in all shapes and sizes. Mentors come in all locations. You may have someone who is at your institution where they're coming to you to help to shepherd through your institution and the policies and understand the practice of your institution. You may have those that are mentoring you from afar, or perhaps in addition to content, but also getting a sense of what the outside environment is like. So I think first rule of mentorship is to really understand why that mentee has sought you out and whether you are the right person to fill that void, whatever void that they think that they have.

I think another part of mentorship is making the time for that individual. We're all very busy people. Most people aren't looking at you to mentor them two hours a day. They are going to be very judicious in what they ask, and you should make sure that what they need, you can accommodate that, and if you can't, perhaps arrange for someone else who can. But in most cases, there's a lot that we all can do for people who approach us.

And then I think really understanding, kind of putting yourself in their position, where are they in their trajectory toward greatness, and how can you work with that. And I think most of us have a lot that we can share, and a lot of times we may be sharing things, we don't even realize that what we're saying is impactful to those individuals. But I really think it's starting out by listening and being honored that you are actually asked to be a mentor.

Dave Johnson: You've also received numerous teaching awards. You obviously have a gift for that. Tell us, what's the secret to being a good teacher? What are the characteristics of a really great teacher, different than mentoring?

Dr. Lori Pierce: Yeah. You have straightforward conversations with your residents and your fellows. I'll give you an example. We have teaching conferences. And teaching conferences have evolved over the years. I've been at Michigan for a long time, since ‘92. And in the old days, the morning conference, you discussed the literature and you had a discussion, and now it's evolved to slides. The residents give the slides and I'm old school. I like to go back to the old school. Some people call that the Socratic method. I think the Socratic method has gotten a bad rap because you can do the Socratic method in not a threatening way, and you can ask questions to residents and expect for them to give an answer.

And it was interesting, long story short, when I few years into becoming Vice-Provost here, I'm not able to come to morning conferences very often. And I got a knock on my door here in the cancer center, and I opened up and it was the three chief residents. And I said, “Okay. Hi. Come in. What can I do for you?” And so all male, and they said, essentially, “We miss you. Our residents, we all prepare more for your conferences than anyone else. And even though you ask us questions, we don't feel threatened by your questions. We want that type of style of learning.” And I was bowled over by that because I'm just a simple person, and I don't beat around the bush. I ask questions because these are the kind of questions that you have to know when you manage patients. These are the kind of questions that you have to know when you're in a tumor board and you interact with medical oncologists and surgical oncologists. You have to know the literature, and you have to be able to state it in a clear way that, obviously, physicians get it, but patients get it, and you have to be aware of your audience.

And so that little vignette of when those three knocked at my door told me that, clearly, going back to the basics and just asking questions is well received.

Pat Loehrer: I'm thinking about your parents who did not go to college, and here you are now a Vice-Provost at one of the most prestigious universities in the country. It's got to be, if you reflect on that really cool. Tell us a little bit about that journey and what it takes. Or was that accidental journey or was this a purposeful journey of leadership that you wanted to go to?

Dr. Lori Pierce: It was absolutely not purposeful, for sure. So I can thank my dear Dr. Lichter for that. So, Allen Lichter, after he was chair of radiation oncology, as you probably know became the dean of the medical school. Well, Allen, who had brought me to Michigan, got to know me pretty well. And so, when he became dean, Allen's so strategic. He realized that it would be important to have someone from the medical school to work in the provost's office because the medical school is the largest school on campus, and we're the different ones. We approach life somewhat differently.

And so to have that perspective in the provost's office would be very helpful. So he came to me and said, “Would you be interested in doing it?” I didn't know what a provost was. I'd heard about it when I was at Brown, but I was like, “No, I'm not interested.” And he said, “Well, just go and talk with them. Meet with the provost of Central Campus and just see.” So I went and decided not to do it. But they did ask, would you just be a special counselor to the provost? If we have questions, we can call on you. So I said, sure. So I did that for a year, and then by the end of the year, had a much better awareness, understanding of what they did in that office, and a much better understanding of who they were, and they me. So I said, “Okay, if I decide to do this, I want it so that you can fire me at any time, and I can fire you at any time, but I'm never giving up my day job in terms of seeing patients. This is always my night and weekend job.” And so that's how we did it.

And so I've been doing it now for a long time—since 2005, 2006. The reason I've done it so long is we do work with amazing people across campus. We have 19 schools and colleges, and I now am the Vice-Provost for Faculty Affairs for the Health Science Schools. And it allows you to not only look at the university as a whole—we tend to have silos, we tend to live in silos. And when you're the Vice-Provost, you can look beyond those silos and you can bring together people and schools for common threads of work. If I see the nursing school is focusing on certain aspects of cancer treatment XYZ, I can bring together people from the medical school, I can bring together the school of public health and put some funding to it to give them seed funds, to then synthesize something which hopefully will then translate into a larger grant.

So it is very rewarding in that regard. You oversee promotions, the hiring, and promotions of the faculty, and it further opens your eyes to what can be. And so much of what we do, obviously, in cancer is multidisciplinary, interdisciplinary. We're not just radiation oncology, medical oncology surgeons. So much of what we do in medicine, we interact with public health, we interact with dentistry, we interact with the other health science schools. It has been a very interesting ride in terms of what can happen when you bring like-minded people from different disciplines and you concentrate on a certain topic. And we've started some seed funding. We've had efforts where it really has grown into very significant NIH funding.

Pat Loehrer: What are you most proud of as a Vice-Provost or your leadership at the university that we wouldn't know about necessarily?

Dr. Lori Pierce: Two things. One, I was one of the key worker bees in changing our policy for time to tenure. We used to have an eight-year tenure clock. And in medicine, we need longer. It's more difficult to get funding, it's more difficult to manage all of the missions that we do and still end up right where you want to be. And so we now have a tenure clock. And so I helped to make that possible.

In more recent years, probably the jewel for my provost time is getting maternity leave and parental leave. Many academic institutions don't have maternity leave. Women have to take sick leave. I'm sorry, being pregnant is not sick. That's not a sickness. If you're a dad, you want to have time for bonding, you want to have time to be there when your child is born or adopted. And so I and two other people established a policy of maternity leave and parental leave that was wildly accepted. The leadership of the university could not agree more readily. And now we have a very robust policy, and this is not just for faculty, it's for staff. And I get people who thank me all the time, whether they're staff or faculty, especially the dads, for giving them the time to be with their child. So that's an easy question to answer. I think that has been a change that has been received positively throughout.

And even if it's a case where when a person is gone for their parental leave or maternity leave, other people have to step up to cover for them. But people don't complain because everyone knows that that is the way it should be and that people should be given that time. So it's been one of those win-wins. You don't get win-wins very often, and that's been a win-win.

Dave Johnson: Kudos to you and your colleagues for pushing that through and making that happen. That's got to be a huge recruitment advantage for Michigan.

Dr. Lori Pierce: It absolutely is. And this is something where industry has done a long time ago. But academia, we have been much slower to adopt those family-friendly policies. And obviously, we are well compensated in our careers. People don't leave usually for the money. It's usually the other pieces. And it's pieces like this where people are recognized and rewarded for being a whole person. And that isn't just bringing in grants, it's also respecting their family lives and their family time.

Dave Johnson: For sure. That was certainly my experience serving as chairman of a department. The things that prompted departure, there were some academic issues, of course, but the main ones were personal. And oftentimes it was family-related, particularly amongst our female faculty, but increasingly so amongst the male faculty as well.

Dr. Lori Pierce: I agree on both counts. That's exactly right. And it's great to see that men want to be present for their children. Having a woman be able to take maternity leave is great, but having a man to take that parental leave is great as well.

Dave Johnson: For sure. So let's pivot over to ASCO. ASCO is a huge professional organization, largely, but certainly not solely comprised of medical oncologists. You're one of the few radiation oncologists to lead that organization. What was that experience like?

Dr. Lori Pierce: Being President of ASCO is without a doubt the highest point of my professional career. ASCO has always been a place where I felt at home. I always felt that ASCO wanted everyone under the tent. So yes, I know it's primarily medical oncology, but ASCO brings everyone together because in order to move the needle in cancer, we all contribute to improved outcomes.

So then fast forward to becoming president. I never, ever thought I would be president of ASCO. It wasn't like something I was like, “Oh, I have to be President of ASCO.” No, I just wanted to be active in ASCO and do the right thing. And so you hear you've been nominated and you're very honored, but you're never going to be president, and you find out that you've been voted president. And my time was an unusual time because it was right in the midst of COVID. And so 2021 was completely consumed with COVID. So my predecessor, Skip Burris, he had a normal year up until about March of 2020, and that's when the world shut down. So of course, that was the first ASCO meeting that was virtual.

Then my year came and from start to finish, I often tell people, I hope I will be the only president in ASCO history to say that they'd never had an in-person meeting for the entire time that they were president. All my meetings, every single meeting, were via Zoom. Yeah, you're a little disappointed by that, but in some ways, it worked to my advantage because, long story short, when I was voted president and you pick a theme, this was long before COVID; long before we knew the world was going to change, and I wanted to have an equity theme, but I worried that it wouldn't resonate with people. So I said, “Okay, I'm going to do this and just hope that it works well with the membership.”

Well, then you fast forward, and the world changes. You have COVID and you have all these senseless murders that are on TV every night. And so even those who perhaps had their head in the sand before, they got it during COVID: there are so many inequities, and that ended up being, I think, the right theme for that time. And not being able to meet people because of COVID—yes, I missed it, but it was the reason that we missed it because of COVID and the inequities that were borne out during COVID—that really hit home that equity needs to be first and foremost in everyone's mind.

So it's a long answer to your very short question. It was an amazing time. I think the organization has gotten stronger because of it. So much of work with ASCO was in equity before, but ASCO really upped its game, and equity is now one of those topics that is ingrained in every aspect of the organization, and that is what you have to have to truly affect change.

I remember when I was president-elect, you go through all these interviews, these people want to interview you, and one question they ask or post is what do you want your legacy to be as president? And I was like, you can’t make a legacy in a year with an orientation like ASCO. You make a legacy in a year if you have a lousy organization that you can actually make a huge difference in one year. So what you aspire to do is take a great organization and make it even better during your time as president.

I think we did that. The world is inequitable. We get so many issues here and there and it all ends up with delivering inequitable care that those who have, can get the care and those who don’t have it, cannot. And so I think the biggest challenge is to be able to bring the people to the table who can really make a difference and act on what needs to be done to improve equity in care.

Dave Johnson: Pat has devoted a significant portion of his career to the whole issue of equity and I'm sure would agree with you.

Pat Loehrer: I want to close with this thought, if you will. Dave or I usually just talk about our books that we've read. And one of the books that I mentioned that I just got through reading is entitled The Things We Make. It's by a chemical engineer and biomedical engineer from the University of Illinois, Bill Hammack. And the whole purpose of the book is really kind of defining the differences between science and engineering. He defines engineering as solving problems using rules of thumb that can cause the best change in a poorly understood situation using available resources.

And he says, in a really tangible way, the scientific method creates knowledge while the engineering method creates solutions. Much of what we do in oncology really is really more engineering than it is science. We're trying to create solutions. He went on to talk about this and it ties into the last comment. He talks about the various technological explosions, eras that have great change occurred when science took a step forward and provided better rules of thumb for the engineers. So there was the Bronze Age and the quantum physics age and even the digital age. I would love for us to come up with the health equity age for which we could work together, taking the advances of science, but using these methods of engineering to make things better with the available resources that we have. And I think if we can do that, I think this would be something that I think we can all be very proud of.

Dr. Lori Pierce: What an amazing summary of that book. And first of all, what amazing work that you have done, and I'm not just saying that—you are walking the walk and talking the talk. And to your point, Dave, of what is the biggest challenge for ASCO, I couldn't have answered it better than what Pat just said. That is it. That's it. That's it. ASCO can do it, but we can't do it alone. ASCO can't do it. Health can't do it alone. This is all hands on deck and it's bringing the other parts of society to the table so that we all understand the enormity of the problem and we have an action plan.

Pat Loehrer: Is there a book you're reading, Lori, that you want to share?

Dr. Lori Pierce: There is. I'm reading a book now called In Shock. It's by Rana Awdish, I don't know if you heard of it. I haven't gotten to the end of it, but just briefly, I met her because she's an ICU Doc at Henry Ford in Detroit and she gave the medical school graduation speech at our graduation a couple of weeks ago. So, in advance of her coming, I wanted to read through her book. It's an autobiography.

In a nutshell, she had a just horrendous experience, essentially almost died when she was seven months pregnant as a fellow. And she basically bled out and I think it was related to a benign tumor in her liver, which is probably hormonally affected by her pregnancy. And she had sepsis, DIC, liver failure, adrenal failure. So, it goes through what it's like to be on the other side and to be in her own hospital. She wanted to go to her own hospital. She was in ICU in the place that she wasn't attending.

Her experience though, as a book, really ends up talking about the hope of medicine because now she's thriving. She's well, she and her husband, she lost the pregnancy, then she and her husband now have a child. She's back to being an ICU attending, and she gave her medical school graduation speech two weeks ago. But in that book, you are reminded of the pitfalls in medicine. You're reminded that we as providers often forget that the patient is sitting right there, and she talks about situations where when she's on the vent, someone saying she's sitting right there, “She's circling the drain.” “She's trying to die on us.” “Your kidneys aren't cooperating.” And one resident who came in eating food and took out his back pocket said, “Oh, I'm sorry, I just had a really bad night last night.” She's dying. It's just yet another reminder that we are in this honorable profession. We have the honor of taking care of patients, and we always need to make sure that we respect every patient that we interact with. And so, it's a very interesting book.

Also, there's another book that I read that's probably been out 15, 20 years, it's called The Art of Racing in the Rain. Do either of you know that? It was a New York bestseller. My husband bought this years ago, it was in our library in the house, and I happened to pull it out. It's about a dog. So, I'm a dog person. I've always had dogs. I love dogs with a passion. And this is a book written in the voice of the dog. It's about this dog named Enzo. And it's humorous, but it's also very emotional in places because it talks about what he does to help his owner, who's a wonderful man, and the wife who ends up dying of a brain tumor. As an oncologist, you could see symptoms, and you knew where that was going, and their daughter, and the things that a dog can do to uplift a human. And even when you're at your lowest point and you're about to give up, and the owner goes through just the most horrible, horrible experiences, and you realize that all of a sudden, something very small can make you then take notice of what is really important to you and can turn the tide. This is a great read. It's a quick read. I highly recommend it. It's called The Art of Racing in the Rain by Garth Stein. It really is an inspiring story about human resilience. It's a great book.

Pat Loehrer: Lori, thank you so much for taking time from your incredibly busy schedule to spend a few minutes with Pat and me. We really enjoyed it. And I also want to thank the listeners to Oncology, Etc. an ASCO Educational podcast, where we will talk about oncology medicine and beyond. So, if you have an idea for a topic or a guest you would like for us to interview, by all means, email us at education@asco.org.

To stay up to date with the latest episodes and explore other educational ASCO content, visit education.asco.org. Thanks again.

And before we go, I have a question for you, Pat. How many ants does it take to fill an apartment?

Pat Loehrer: I have to cry uncle on this.

Dave Johnson: Ten, tenants.

Pat Loehrer: Tenants. I thought crying uncle was a pretty good response.

Dave Johnson: All right. Thank you, Lori. That was wonderful.

Pat Loehrer: Thanks, Lori. It’s terrific.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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People who live in major cities in the US and abroad tend to benefit from better cancer care due to having access to more doctors, facilities and equipment. In contrast, those who live in rural areas face many challenges accessing consistent and quality care.

In Part One of this ASCO Education Podcast Dr. Jack Hensold, a hematologist/oncologist in Bozeman, Montana and Chair of the ASCO Rural Cancer Care Task Force, Dr. Chris Prakash, Medical Oncologist in Paris, Texas and Medical Director of Texas Oncology and President of the Texas Society of Clinical Oncology, and Professor Sabe Sabesan, a Medical Oncologist in Townsville, Australia and the President-Elect of the Clinical Oncology Society of Australia will examine the realties practicing oncology in rural areas.
They discuss the difficulties of having to travel long distances for treatment (5:30), the effectiveness of telehealth (8:07) and solutions to recruiting a supportive care workforce in rural areas and facilitating access to imaging facilities and specialized treatment (18:12).

Speaker Disclosures
Sabe Sabesan: Speakers Bureau - Merck
Sucharu Prakash: Speakers Bureau - Myriad Genetics
Jack Hensold: Consulting or Advisory Role Company - Vibliome Therapeutics

Resources
Policy Recommendations for Improving Rural Cancer Services in the United States

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Dr. Jack Hensold: Hello and welcome to this two-part episode of the ASCO Education Podcast. Today we will explore some real-time and real-world issues that oncologists face while practicing in rural areas in the US and abroad. Cities tend to benefit from having more doctors, facilities, and equipment to address the health needs of the population. In contrast, people who live in rural areas – estimated to be about 25% of the US population – face various challenges to obtaining consistent health care, including scarce medical personnel and infrastructure. Transportation of that care may involve considerable time and financial expense.

I'm Dr. Jack Hensold, the Hematologist/Oncologist in Bozeman, Montana, and Chair of the ASCO Rural Cancer Care Task Force. I also serve as Medical Director of Regional Outreach at Bozeman Health. Joining me is Chris Prakash, Oncologist and Medical Director of Texas Oncology and President of the Texas Society of Clinical Oncology. Chris is also the Director of Quality Services for the statewide group and leads Texas Oncologist's Precision Medicine Initiative.

Also joining me is Professor Sabe Sabesan, a Medical Oncologist in regional Australia. He is the President-Elect of the Clinical Oncology Society of Australia and Clinical Director of the Australian Teledyne Health Program, led by the Queensland State Department of Health. Professor Sabesan is an internationally recognized expert in the area of tele-oncology. He has developed and evaluated various oncology models to deliver cancer care closer to home.

Providing healthcare is a very involved career, more so in rural areas. Dr. Prakash, you finished your oncology training in Detroit, yet you practice primarily in rural Texas. Can you detail the factors that led to your decision in practicing oncology in a rural setting?

Dr. Chris Prakash: Thank you, Jack, for having me as part of this podcast. I finished my fellowship at Wayne State in Detroit, Michigan, and we were looking for a place to raise our kids and family and to find a good practice for myself. My daughter was two years old at that time. We were looking for a quiet, safe place with a laidback lifestyle, but at the same time a dynamic oncology practice. That's how I found East Texas, which is primarily a rural area. The small community here, good schools, and nice, accepting people really appealed to us. So we decided to give it a chance. We are still here almost 23 years later. My daughter has grown up and is in medical school. My son, who was born in Paris, Texas, is planning to go to med school next year.

Over the last couple of decades, I've found that practicing oncology in a rural setting is indeed very rewarding. You can make a difference in people's lives here. People are simple. They have faith and respect and follow doctors' advice. Practicing here, I've had a real chance to make a difference in not only people's lives but also in the overall healthcare system and in health policy. As you know, Jack, about 18% to 20% of the population lives in rural areas in the US. But only 3% of oncologists are available to provide care for them. So I'm not only fulfilling a need but also satisfying a desire to contribute.

Dr. Jack Hensold: Chris, could you clarify the nature of your practice? Are you a solo oncologist within a much larger group spread out over the state, or is there more than one oncologist on your site?

Dr. Chris Prakash: Yeah, so I'm part of Texas Oncology, which is a statewide large group with multiple sites of service. In my location, there are three medical oncologists and one radiation oncologist. So we serve the catchment area of Northeast Texas and Southeast Oklahoma. But within Texas Oncology, we have locations spread out all over the state.

Dr. Jack Hensold: Thank you for that clarity. Professor Sabesan, you started in Sri Lanka and are now in a rural area of Australia. How did that happen?

Professor Sabe Sabesan: I grew up in northern Sri Lanka in a village but moved to Australia because of the war in Sri Lanka in ‘90. So I did my med school in Adelaide, Australia. During my med school, we had to do a lot of rural clinical placements. And also as a result of that, I did my internship in a central Australian town called Alice Springs. Throughout that journey, I saw firsthand the difficulties these communities face in accessing healthcare, basic healthcare. So when I finished my training in medical oncology, I was looking for a place where I could contribute to minimizing these difficulties, but also taking an academic angle to this. So I chose a regional center called Townsville in North Queensland as our home that actually serves a large rural and indigenous population, but also it is an academic hub for rural medicine. So it kind of served my clinical and academic needs, and we've been there last 20 years now.

Dr. Jack Hensold: A significant hurdle for patients in rural areas is transportation. Patients sometimes travel an entire day or stay overnight near the clinic, where they will be examined or treated. What resources have been developed to assist with transportation to help patients come back for test results, appointments, and treatments? Chris?

Dr. Chris Prakash: Transportation, that's a big hurdle for many patients across the country, but mainly for the rural population. So, as I just said, my practice is in Paris, Texas, but the draw is about a quarter of a million. So patients come to see us here to receive their medical care from all over Northeast Texas as well as Southeast Oklahoma, and there is no public transportation in many of these areas. The average time to commute for many of my patients is in excess of an hour and a half each way. Patients do travel sometimes an entire day. They sometimes have to stay overnight to receive their treatments the next day.

I recall a patient with tonsillar cancer last year who was receiving concurrent chemotherapy and radiation. So he lived almost three hours away. This was too cost prohibitive for him to travel back and forth on a daily basis for radiation therapy. So what he did was set up his camper right behind the cancer center, which certainly made it a lot easier for him to get his treatments that way. I would not recommend that as a routine practice for everybody, but it did work out for him

Close by there is a community of Choctaw Indians here in Southeast Oklahoma also, and they do have some options for transportation for just their citizens. And locally, some local church groups and volunteer organizations provide assistance with transportation for some patients as well. But that is a problem. Transportation is a big access issue for my population.

Dr. Jack Hensold: Thank you. And just to make a comment, there's actually a fair amount of literature regarding what we refer to as financial toxicity associated with the need to travel. Sabe, do you have some transportation problems in your area? I would assume…

Professor Sabe Sabesan: This is similar to what Chris and you are describing, Jack. Our area is 2000 by 1000 kilometers with about 650,000 population. There are scattered rural hospitals, but really there's no consistent public transport. But the government does pay for transport and accommodation. I heard that it doesn't fully cover it. But one of the disappointing things is that if you're traveling for clinical trials, that subsidy is not there for them. So that's probably one of the reasons why the governments have gone for the telehealth investment.

Dr. Jack Hensold: Thank you. Telehealth is a critical tool for providing healthcare in many areas, including rural areas. How do you manage the health literacy problems of ethnically, educationally, and socioeconomically diverse populations using telehealth? Chris?

Dr. Chris Prakash: Telehealth has been around for a long time, but during the pandemic, that’s when we needed to keep our patients safe and away in their homes and still continue to give healthcare to them. So we conducted many visits through telemedicine at that time. Telehealth is especially used for many patients in rural areas because they have problems with access. But there are many challenges. As you know there is a broadband divide in the US. About 1 in 4 Americans do not have a good broadband connection so it is very difficult for them to perform a video telehealth visit. Audio works out okay a lot of times, but to do a good video telehealth visit, that’s a difficulty.

Also, as you know, many of the flexibilities that we were afforded during the pandemic regarding telemedicine, they are slowly going away. So that’s making telemedicine even more difficult to do. But telemedicine is a boon for many of the patients who live in rural areas. I remember just the other day I saw an elderly couple, the man had just been diagnosed with advanced lung cancer. In the room, he requested that his children join the conversation via FaceTime on his phone so that they can listen in to what I had to say and what I had to tell them. This was indeed very helpful for them. I was able to explain to the patient, his wife, as well as his children who joined via FaceTime about the diagnosis, which was new, the treatment plan, expectations moving forward, and all of that.

So even though this was not a true televisit, it really demonstrates how technology can help us deliver good communication and good oncology care in many situations. But still, I would say that for many patients, telemedicine is not ideal. It’s especially true given the devastating diagnosis of cancer. Patients want to see their doctors face-to-face. As a doctor, I want to examine them. And also, body language is very important. It is important for my patients to trust me as a physician, and that’s hard to do sometimes via video chat.

So right now my nurse practitioners do a lot of chemo teaching through telemedicine. Now that is really helpful for them because this can be done over multiple teaching sessions, it makes it a lot easier for the patient. Because rather than coming into the clinic for all these visits, they can learn from the comfort of their homes before they really start the toxic chemotherapy.

Dr. Jack Hensold: Chris, thank you for that. I think that you make a very valid point and one that I've made, which is that telehealth is a great tool for overcoming geographic barriers in rural areas. But I think we just simply have to accept the fact that it's not as good as a face-to-face visit. So how we blend the use of telehealth with face-to-face visits I think is going to be a challenge moving forward.

Dr. Chris Prakash: Yeah, I totally agree. I think toxicity management is great. I mean, it's a great tool to call and see how patients are doing after treatment. But that initial visit, there's something to be said about establishing a rapport and faith and trust in your doctor when you're treating cancer.

Dr. Jack Hensold: I completely agree. Sabe, you sound like you're one of the experts in Australia regarding telehealth. I wonder if you have some comments about your experience.

Professor Sabe Sabesan: Yeah, I would say it's an evolving experience which has evolved over 15 years. So in terms of the health literacy needs, my observation is actually the same whether it's in person or in telehealth. What we observed is that we just need to tailor to the patient's needs. When we first developed the telemedicine, we had the same issues, developing rapport and seeing first consultations in person. But what we did, we started doing a lot of shared care models and tele supervision models with rural facilities rather than directly into homes. So what that meant, we had patients' families can attend, especially the primary care physicians, and the rural nurses were able to sit in with the patients. So that means if there were any communication issues or any translation aspects, language-wise or explaining medical lingo, there was a system in place in the rural sector that is close to home that was provided by the primary care physicians and the families.

And also then from that experience, we did some research and the patients actually said they were happy to continue initial consultations on the telehealth consultation, provided there were families involved, the primary care physicians were in there, and also the aboriginal health workers. So for some regions now we do the initial consultation purely on telehealth because what also what telehealth does for the first consultation, if we need to then bring them to our center, then we would be able to coordinate the whole trip rather than coming back and forth. So that's actually probably the difference in a couple of the larger centers. But the other main benefit I actually found for indigenous patients is that we can involve the whole family in the patient care and normally that means they are able to ensure compliance and compliance with clinic visits. So it's been evolving but really it is what our models, some of them are tele-oncology replacing face-to-face, some of them are hybrid, some of them are treatment-related. So it's really based on the needs of that little communities. That's what we've been doing.

Dr. Chris Prakash: If I can ask you a question Sabe, on that, do you experience barriers to practice across state boundaries in Australia? Because I know in the US that's a big issue, that's a hurdle. Licensing is an issue across state boundaries and also broadband issue because a lot of my patients, they simply don't have the broadband width to get on a video chat. Do you experience that in Australia as well?

Professor Sabe Sabesan: So we definitely have the broadband divide in Australia, but luckily the state governments have actually invested heavily on fiber. So all the health facilities, whether they are small or large, they are all connected on fiber. So if you do video calls or telehealth within that system, it is pretty good. But as soon as you go outside to a primary care facility that is not part of a state facility or home, you run into trouble with broadband. But in terms of the state boundaries, I think it is a bit loose. I don't know whether there's actually a strict monitoring of the systems, but because the whole Australian system is funded by Medicare, it really doesn't matter where the patient lives as long as you bill the patient based on the consultation.

Dr. Jack Hensold: And I'd like to just respond to something you said, Sabe, too, which is the involvement of primary care doctors and local healthcare workers in the care of patients, is something I will return to later in this conversation. But I think it's important that we consider when we're keeping patients out of our larger centers and treating them in their own home areas, that we are relying on supportive care by those primary care providers. Any other comments regarding the telehealth issue?

Professor Sabe Sabesan: In terms of the primary care shared care models and collaborations, that is actually one of the important aspects of telehealth because we have in the rural sector, the turnover of the staff is pretty high. So then what happens if we want to provide consistent medical service on telehealth? Something needs to be consistent so we become the consistent aspect of the partnership. So then that gives us bit more safety that there's a shared care model, but also what we found now that in terms of educating on oncology topics, the shared care models actually give you an opportunity for case-based discussion. I think there is a benefit for workforce development as well, as well as connecting the rural workforce with a network of workforce.

Dr. Chris Prakash: Involving primary care physicians in the total care of the patient is vital, especially in rural areas because they really depend upon their PCPs and often these are APPs providing their primary care. You’ve got to manage their diabetes and hypertension and go through all their medications, antiemetics pain medications, work with the local pharmacy. There are so many issues that go into treating a patient with cancer and as an oncologist sitting 100 miles away, I'm not going to be able to take care of every detailed aspect of their care. So what I do is involve their primary physician from the very beginning. So when the patient first comes to me, it could be via telemedicine or not, I'm calling them back and saying, “Hey, I saw so and so. This is my diagnosis, this is my plan. I'm going to do all the treatments here at my center. But whatever's possible you can do locally, I would appreciate that.” If there's labs that can be drawn, imaging that can be done locally, any testing that can be done locally, patients really value that because they don't want to travel 2 hours just for a CT scan if they can avoid it. That's my practice.

Dr. Jack Hensold: Thank you. You mentioned something that we're going to touch on next, which is that in rural areas it is often difficult to access labs, imaging facilities, and other specialized treatments, certainly CAR T therapy and other highly technical therapies. There are other services that may be limited in a rural area such as mental health, fertility preservation, palliative care, access to social workers. Do you have solutions to address that really supportive care and those needs?

Dr. Chris Prakash: Yeah, I think, Jack, you touched on a very, very critical challenge right now. It's a workforce issue. It's very hard to hire and keep good support staff not only in rural areas but all over the country right now. So you mentioned social workers, nurses, nutrition specialists, mental health providers, even fertility services. They're very hard to find in rural areas. There's a big workforce problem, right, all over the country. But the pandemic really exacerbated that. I mean, it's hard to find good staff anywhere and there's no easy solution to fix this problem. So what we need to look for is maybe provide incentives such as loan forgiveness programs or tuition payment programs, or repayment. Really anything that keeps professionals in rural settings. And we need to find people who like working in these areas because that's a very difficult problem as well.

And as you know, many specialized treatments, stem cell transplants, CAR T cell therapy, specialized neurosurgeries or cardiothoracic surgeries, or many oncologic surgeries, they can only be done at big tertiary centers in big cities often. So patients have got to travel a few hours to go there. So what we can do to make it easier on them is provide the first consultations with those specialists via telemedicine. And if they're thought to be good candidates for the procedures, then they can make a trip that's necessary to the city, let's say. But also you mentioned consistency, that is the key. It's very important to be consistent if you want to provide quality cancer care. It could be imaging, it could be diagnostics, molecular testing, or any kind of therapy that you deliver. They should all be consistent no matter where a patient is being treated. So that brings into question provider education. Many oncologists in rural areas, they're generalists, they treat all cancers. They do not specialize in one area. It's really hard to keep up with all the latest information that's coming out. So it's important that we provide all educational tools possible to keep them up to date.

I just moderated a meeting called Oncology Congress. So this is geared towards cancer care providers in rural areas. It's a free CME webcast, various topics on cancer, excellent faculty, and the main thing is that the discussion is geared towards improving multidisciplinary care in those rural settings. So I think another thing that we could think of as a solution to this problem is virtual tumor boards. I mean, they're very helpful where somebody can get on and get an opinion regarding a difficult case. But I think most helpful is if you have a network of doctors or specialists that you can rely on, you can call somebody, a quick consult or say, “Hey, I have a problem, a challenging case, what would you recommend?” Because sometimes we just don't have time to wait for that tumor board or wait for an official consultation. So, yeah, it's a difficult challenge.

Dr. Jack Hensold: Yes. And again, a point that you made that I'd like to respond to is the virtual tumor boards and basically shared education with maybe a larger group. As we've kind of in Montana looked at a development of hub and spoke models, we've realized it may make sense to consider a hub and spoke communicating with a spoke and hub. In other words, a larger center with what becomes the hub for a smaller community, and then that reaches out. So there's a series of educational connections that need to be made.

Dr. Chris Prakash: Yeah, I think you almost need multiple hubs. One central big hub in this day and age is probably not going to help solve that problem. So you got to have a big hub and then maybe a series of regional hubs where patients can easily access and doctors can access information.

Dr. Jack Hensold: Yes, I think that's absolutely correct. The education piece, too, is, I think, something that keeps oncology practitioners out of smaller communities where they may be practicing by themselves. Because it's difficult, as you know, as an oncologist, to feel like you're staying current with everything you need to stay up to date with, and therefore practicing in a larger group where you can turn to someone else for some immediate education.

Dr. Chris Prakash: That's very true. And if you really look at what these CME programs or educational programs are geared to, none of them are geared towards rural practice. They talk about big clinical trials. And those populations are really not my patient population, for sure. So you really need a program where people who know rural medicine, who have experienced it firsthand, like you, me, and Sabe, and say, “Okay, this is what really happens. You cannot give CAR T therapy to every Lymphoma that walks in.” I think those are the kind of educations we are talking about. There's so many educational programs that are available, but not many for rural practitioners.

Dr. Jack Hensold: Right. And it does speak to whether or not we need to be thinking about developing some type of education that's easily accessible to those very busy practitioners who may be a solo practitioner with no one around for hundreds of miles, I guess.

Dr. Chris Prakash: And not to throw in a plug for my conference, but the Oncology Congress that I do twice a year, that's the sole purpose. We will have faculty from big centers. But I make sure that the conversation moves towards rural settings where we do not have all the latest technologies and the therapies available. And we had a really good turnout this past weekend, so I'm happy to share information if anybody's interested.

Dr. Jack Hensold: Yes, that would be great. Again, I think this conversation has been terrific because I've really become focused on the issue of the inadequate education we have not only for our oncologists who are out in practice in smaller areas but also for the primary care providers who need a better understanding of what's required for supportive care of oncology patients. And there's very limited material that focuses on that as well.

Dr. Chris Prakash: Totally agree. Just one last point I want to make is with the checkpoint inhibitors. That's a perfect example. Many of these toxicities are multi-organ, and the patients in the community, the docs in the community sometimes are not aware of the skin rash or lung symptoms, or pneumonia is really related to the therapy. So very important to involve the whole team in their care.

Dr. Jack Hensold: Completely agree. Sabe, what about your experience in this regard?

Professor Sabe Sabesan: Exactly the similar experience Chris has been describing. Another group of rural people, there are actually smaller rural communities. Sometimes they are like 500 or 1000 population maximum. So those kinds of places, they completely miss out because they are too small even for standard general medicine specialties. What we've been observing over time or focusing on is really how do we build those capabilities at rural sites because if they keep doing the same stuff, then they are not going to grow or build. So what we've been doing is let's build some rural capabilities and let's also focus on expanding the scope of practice. So to do that, we actually have to start shifting specialist services like chemotherapy administration or rheumatology infusions back to those smaller towns. And then we have to utilize tele-supervision and share care models with allied health and the rural health workforce. So when that happens, we need more staff because there are more activities happening.

And what we found in the western Queensland town of Mount Isa before 2007, maybe a few chemotherapy patients had to travel for everything. Over time we shifted all the chemotherapy and biotherapy to that 20,000 population town. That meant that over that ten years they had more resources from the government, more staff like registrars and residents, and also needed infrastructure. So that gave us some confidence that maybe we have to leverage the telemedicine technologies to build rural systems, not just seeing patients.

Dr. Jack Hensold: Thank you Dr. Prakash, for your insight into this topic and also to Professor Sabesan for his perspective from his practice in Australia. In part two of this podcast, we will explore how the difference between American and Australian healthcare systems impact care for rural patients, the need for advocacy from doctors in a pilot project in Montana I'm working on with ASCO.

I'm Dr. Hensold and I would like to thank all of our listeners of the Cancer Topics ASCO Education Podcast. This is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologist well-being and professional development. If you have an idea for a topic or guest you'd like to hear on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Age is a main factor when determining cancer care. In this ASCO Education podcast we speak to one of the top leaders in treatment for older patients who has also credited mentorship as a foundation for his career. Dr. Hyman Muss describes his childhood in Brooklyn, serving as a general physician for troops in Vietnam (6:18), the doctor who influenced his choice of hematology and oncology (7:48) and creating one of the first geriatric oncology fellowships in in the country (21:58).

Speaker Disclosures
Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University
Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical
Dr. Hyman Muss: None

More Podcasts with Oncology Leaders
Oncology, Etc. – Devising Medical Standards and Training Master Clinicians with Dr. John Glick

Oncology, Etc. – Rediscovering the Joy in Medicine with Dr. Deborah Schrag (Part 1)

Oncology, Etc. – In Conversation with Dr. Richard Pazdur (Part 1)

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Welcome to Oncology, Etc., an ASCO Education Podcast. I'm Pat Loehrer, director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson of Medical Oncology at the University of Texas Southwestern in Dallas, Texas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of our podcast is to introduce listeners to interesting and inspirational people and topics in and outside the world of Oncology. We have an inspirational guest today. Pat?

Pat Loehrer: If you ask anyone who's achieved any level of success and how they've achieved it, most likely they'll mention a number of people who've influenced them along the way. Quite often, these people reflect on their mentors, and after a certain time of accomplishment and reflection, they begin to mentor others. This is very much what our next guest has done. Dr. Hyman Muss has been a mentor to me and to Dave, and he's one of the most outstanding, wonderful people in the world, and we're so excited to have him today.

Dr. Hyman Muss served in the US Army in Vietnam, where he was awarded the Bronze Star Medal. He's an experienced Clinician Scientist, the Mary Jones Hudson Distinguished Professor of Geriatric Oncology at the University of North Carolina School of Medicine, and the Director of Geriatric Oncology Program at the UNC Lineberger Comprehensive Cancer Center Program. His interest in education and research is focused on cancer and older patients, and he is internationally recognized in this area. He's been the co-chair of the Alliance Committee on Cancer and Older Adults and won the BJ Kennedy Award from ASCO in Geriatric Care. His particular interest in research expertise is in the care of breast cancer patients, with a focus on the management of women who are of older ages. He's had a major interest in breast cancer survivorship and long-term toxicity of treatment and also served as the co-chair of the Breast Committee for the Alliance Group. He serves as a mentor for medical students, medical residents, junior faculty, and more recently, his Geriatric Oncology fellows. He served on the Board of Directors of the ASCO Foundation and on the ABIM, the American Board of Internal Medicine, where both Dave and I were privileged to work with him and witness his leadership and his deep breadth of knowledge.

Dr. Muss, thanks for joining us today.

Dr. Hyman Muss: What a pleasure to be here. Thank you so much for inviting me. My mother would have loved the introduction.

Pat Loehrer: Well, speaking of that, tell us a little bit. You grew up in Brooklyn, so tell us a little bit about your parents. Your father was a dentist, I think, and your uncle was a general practitioner. So give us a little bit of the early life of Hy Muss.

Dr. Hyman Muss: So I grew up in Brooklyn, New York. I was born and bred there. I went to Brooklyn Technical High School. I almost went to Brooklyn College, but I came back and went to Downstate Medical Center, which was just terrific. My tuition was $600 a year, but that's another story. My parents lived in the same neighborhood. My dad was a dentist, so we knew all the people. My uncle was the GP. You came into their office, sat down, and they saw you anytime, day or night, almost 24/7, something we're probably not going back to, but they had a profound influence on me. My uncle, as a GP, used to take me on house calls in Brooklyn when they were done, and he had an old Buick with MD plates. And I would go into these families, and they loved him, and they would give me ice cream and things. Maybe that's what made me a doctor. But it was a terrific and indelible experience. I had terrific parents. In those days, doctors and medical people usually lived in the same neighborhoods as their patients, so they really knew their people well. It was a terrific upbringing. I got to love medicine and have never had a look back.

Dave Johnson: So your inspiration for a career in medicine obviously started at home. Tell us more about your formal education. You mentioned your high school education. What about college? And shortly thereafter?

Dr. Hyman Muss: Yeah, well, I went to Lafayette College. I was not the best high school student, but I had good college board scores or whatever they called them then. And I went to Lafayette and I thought I was going to be a chemist, a chemistry major. But I took enough premed courses and I spent a summer in a lab building cyclic ketones. And everybody was outside sitting on the lawn of the campus. And I was in there with all these distillation apparatus, and I said, “I don't think I can do this the rest of my life.” So I applied to medical school, and I got into several medical schools. But my father at that time was dying of metastatic bladder cancer. He had been a heavy smoker, and he was still working as a dentist. He worked until the day he unfortunately died. But I got into Downstate. We lived in Brooklyn, and my uncle, the GP, said, "Hy, you need to come home and help take care of your dad." I'm an only child, so I did. And I had a wonderful experience at Downstate.

Several years ago, I was listening to NPR and heard that one of my professors had won the Nobel Prize. Dr. Furchgott in physiology, one would have never thought. And I had a wonderful education and subsequently got into what was then Peter Bent Brigham in Boston, did my internship and residency there, joined the army and medical school, so I wasn't drafted, it was a program then. And then after first year of residency, I went to Vietnam, worked with an artillery battalion, a mystical experience, but no regrets. And then subsequently came back and did hematology and oncology at Brigham and at what was then the Jimmy Fund and Sidney Farber Cancer Center. And Tom Frei had just come. And I did hematology with a guy named Bill Moloney in Boston at Harvard. I'll tell you, a wonderful man. He was like a surrogate father. My dad had died by then, and I just feel I've had every opportunity to have a wonderful education and terrific mentors along the way.

Dave Johnson: So we want to ask you about both of those gentlemen, but I would like to just, if I may, drop back to your experience in Vietnam. What was that like?

Dr. Hyman Muss: Well, I was 27 years old and I was put as the doctor for 500 men in artillery. My job was to take care of the general health of the troops. Fortunately, we didn't have many casualties. It wasn't a front war like my uncle, who was a GP actually in World War II, landed in Normandy about a week later and went all through World War II as a doctor. But Vietnam was an unusual war, there wasn't really a front. So my experience was I would go out to fire bases, which were units of about 100 men in the jungle, go out three days in a week in a helicopter, do sick call, check people. I dealt with really alcohol problems, unfortunately, a lot of drug problems. You had young people with really not a lot to do during the day, nothing much to do, and no real goal of being there. I did that for a while, and actually, the reason I got the Bronze Star was because I set up– It was nothing like standing in front of a machine gun. I'm not that kind of brave guy, but I set up a drug amnesty program so I got a lot of support from our regular field people to do this, so we didn't have to keep sending kids home with dishonorable discharges. And I learned a lot. I think we were reasonably successful. I learned a lot about artillery. I think overall it was a great experience in my life.

Dave Johnson: Tell us how your interest in hematology and oncology originated. Where did that come from?

Dr. Hyman Muss: When I was an intern at the Brigham, Dr. Moloney was a very famous Harvard professor. He had studied war casualties after Hiroshima, he was one of the people that found the Philadelphia chromosome in CML. He was a guy that rounded on every single one of his leukemia patients every day. So I was an intern. So in those days I would go and see all the hematology people rounding because all the acute leukemia patients and all the serious cancer patients were right on the floors, right on the wards. We had 17-bed wards, and then we had some private rooms. And he loved what he did. And before I left for Vietnam, we didn't have Ara C and daunomycin. So every leukemia patient I saw died. This is '68 to '70. Yet we tried all these different regimens. Occasionally you got someone who did well for six months, a year. But his bedside manner was absolutely wonderful to me. He knew all the patients. He'd ask them about where they lived in Boston. His humanism was terrific, and yet I loved the diseases he treated. The stakes were high. We didn't have good treatment, and I decided that that's probably what I want to do.

So when I was in Vietnam, I applied and got back in the Hematology Fellowship and came back and did that. I saw Ara C and daunomycin. I gave the chemotherapy to them, and he'd say, "Go up and treat Harry Smith with Ara C and daunomycin." I had the syringes in my pocket, guys. Forget about hoods and mixing. And I'd go up and treat them and the marrow would be gone within four or five days. I did a bone marrow. They published their regimen in the New England Journal called COD, C-O-D because they also gave vincristine. So it was cytarabine, vincristine, and daunomycin, the COD regimen. It fit Boston. And I saw it was like the emergence of cisplatin after Larry Einhorn. You saw people that never survived going into remission and I saw some remissions in AML and it cemented it.

About my second year of residency, we had a child. I was running out of money. I was being paid $6,000 a year and I had the GI Bill. I went into Dr. Moloney and he talked with Dr. Franny Moore, who was head of surgery at the Brigham, and they made me the Sidney Farber Research Fellow, doubled my salary and I had to go to the Jimmy Fund and see cancer patients. And it so happened that was when Tom Frei came to Dana-Farber. And so I started rounding with Dr. Frei and seeing those patients. And I think the first day I walked in, I knew I wanted to do more than just leukemia because I saw groups of patients with every disease. We treated everybody with CMFEP, it didn't matter what cancer they had. And I just loved it and said, "My God, there's so much we can learn. What a great career." And so that got me into the oncology portion.

And then I was offered to stay at Harvard. They were going to make me an assistant professor, but they wanted me to do lab work. And I knew my personality, it just wasn't for me. I worked with a lovely guy named Frank Bunn, one of the world's great hem guys in his lab, and he's still a close friend in his 80s. And he told me one day, he said, "Hy, I don't think the lab is for you." And he actually helped me get my first job at Wake Forest University, which turned out to be wonderful. So that's how I ended up with my circuitous in HemOnc. And it's really from great mentors, it's from Bill Moloney, it's from Tom Frei, Dave Rosenthal, tons of wonderful people along the way that not only taught me a lot, but they seemed to love what they do, which is a gift in life to love what you do and love the people you're doing it with. They instilled that in me.

Pat Loehrer: From there you went to Wake Forest and there’s a couple of colleagues down there, I believe, that inspired you, Charlie Spurr and Bill Hazzard, who was the founding founder of geriatrics. Tell us about that experience and how’d that shape your life.

Dr. Hyman Muss: I was looking for a clinical job and I looked at Rochester, and I got snowed in one night in Wake Forest, and I said, “Where's the contract?” And I signed it. And my mother, who was living in New York City, didn't know where North Carolina was. My mother was from a family, was born over a candy store in Greenwich Village, and said, “Where are you going?” And then I showed her where it was, and she says, “They're going to kill you down there.” And it turned out to be one of the best decisions of my life. My wife Loretta, who both of you know so well, we got out of our VW with our dog and our daughter when we moved here, and VW bug, by the way, not a van, and she cried. It turned out it was one of the best opportunities.

Charlie Spurr was an iconic oncology leader. He actually did some of the early work on nitrogen mustard in Chicago during the war, the first chemotherapy drug. He was a terrific leader. He had patients programmed in on those IBM punch cards. He had little cards for the protocols, CMFEP, CMF, AC on little laminated index cards. I learned so much from him, and he was to me, great leaders and great mentors morph from things they do themselves to teaching other people, and whose brains have the ability of having the same dopamine shot when you see one of your fellows or young faculty present a wonderful study as you do. And your brain isn't saying, “I wish I was up there.” It's saying, “Isn't this so cool that this young man or woman or fellow or medical student is doing such a wonderful job?” And I had something to do with providing the soil for this seed to grow. That's the kind of guy he was. And so it was wonderful there.

And as I moved on, we got a new Chief of Medicine, Bill Hazzard. And I still hear from Bill on rare occasions, but Bill was one of the first geriatricians in the United States. He wrote the textbook, and his wish was that all the faculty and all the specialties get involved in a geriatric project. And so I had all those little index cards, and I looked and saw how many older people with metastatic breast cancer we'd given chemotherapy to. And these were little protocols, nothing like the protocols today, no 50-page consent forms, 50 pages of where your data is stored. They were like, here's the treatment, here's the dose mods. And I looked at those 70 patients with one of our residents, Kathy Christman, she may be retired now, but in any event, we wrote a paper and showed the old people did as well as the young with breast cancer. And we published it in JAMA. And it's one of the few papers in my career, I got no reviewers. They accepted the paper. I got no reviewers. So because I'm from Brooklyn, and my English is not what it should be, I had my friends read it to just make sure I didn't say anything egregious. But it got published and the next thing I know, my friends in medical oncology in the state were calling me. They said, “I got a 75-year-old woman here.” I'm saying, “Guys, I just wrote this paper. I really don't know anything about older people.” But slowly, with Bill Hazzard and others, I got more and more interested. I started reading about Geriatrics and I ended up making it a focal point of my career. It was kind of happenstance. And Bill was a wonderful mentor.

And then as I subsequently moved on, I worked with terrific people like Harvey Cohen, Lodovico Balducci, and Martine Extermann, all of them heavily involved with ASCO over the years as well, and B.J. Kennedy. They were wonderful to work with. And BJ was inspirational because BJ would get up at an ASCO meeting and he'd say when he saw the age cut off, he'd say, “How come you didn't let old people on that study? There'd be 1000 people in the audience.” And so he really was a great mentor. And I had the bittersweet opportunity of writing his obit for JCO years ago and kept up with his family a few years, but he was a wonderful man.

Dave Johnson: I'm just reflecting on the fact that today, patient registries are sort of mainstream, but certainly in the ‘70s, ‘80s, even into the ‘90s, having a list of patients with a particular disorder seemed almost novel in many respects. And to have that was a godsend.

Dr. Hyman Muss: It was a godsend. I still remember those little file cards. And he called it the Oncology Research Center and it was a godsend. And you’ve got to remember, this is like ‘74, ‘75, it's a long time ago.

Dave Johnson: So many of our listeners may not be as familiar with Wake Forest as they are with Duke and North Carolina, the other medical schools located there. But you were at right at a point where I mean, it was one of the top oncology programs in the country at that time. Still is, I don't mean to diminish it, but there was a who's who of people there at the time. And you were also involved in creating, I think, one of the first cooperative groups of sorts. It was the Piedmont Oncology Group. Tell us about that.

Dr. Hyman Muss: Oh, yeah, well, that brings back memories. So the NCI at that time wanted to get more, I think, rural and other smaller places involved in research. And they put out an RFA to form like regional cooperative groups. And we formed the Piedmont Oncology Association, the POA. We actually did well for a few years. We wrote some really good studies. We got one or two New England Journal articles. I worked with all the people, mainly in the community, community docs who would go on, and put people on the protocol. I mean, I looked at all the X-rays and scans in a lot of these patients myself as part of the studies we did. And it turned out to be a wonderful organization and it's still run today by Bayard Powell, who is one of our terrific fellows who's the head of Oncology at Wake Forest.

But after a while, we just couldn't compete with CALGB, of which I was a member of also, and ECOG and SWOG, even North Central Group, which was kind of formed in a similar venue, eventually merged. So we did a wonderful job for a while but the truth is we just didn't have the manpower to write studies for every disease site. So eventually we kind of petered out as a clinical trials group. But it's been maintained for educational programs and it's really served as a good resource for a lot of good education for the community oncologists who give most of the care in this country in the state. So it's been good. I think Pat kind of exceeded us with HOG, the Hoosier Oncology Group, which was in a similar vein. But it was a great experience and it was all Dr. Spurr, who thought of doing this and built it.

Dave Johnson: Certainly, it was inspirational in many people in and outside of Wake Forest. So with such an idyllic life, what in the world possessed you to move north to Vermont?

Dr. Hyman Muss: Well, you get this urgent life. You want to be a leader, you want to be a chief. Now, I tell younger people, if they love what they do, don't do it. So I got a wonderful opportunity at the University of Vermont to go up there and be Head of HemOnc. Chief of Medicine was a terrific guy, Burt Sobel. The university at that time, at one time it had a wonderful Oncology program. It had a federally funded cancer center with Irwin Krakoff and Jerry Yates, two other iconic guys. I don't know what the politics were but it had lost a tremendous amount of faculty, especially its clinical faculty, and they needed to rebuild it. And I went up and I thought, “Well, I'm in my 50s. This is going to be a great opportunity. If I don't do it now, I may never get the chance.” So I went up there and actually, it was a great opportunity. We hired terrific people. We got CALGB and we participated. We had actually a very good accrual for a small place and we had a very small but very effective cancer center. So it turned out to be a really good experience.

I worked with wonderful people. I recruited some wonderful people. But over time, the issues of the business of medicine, all the issues that happened, I'm saying I'm kind of losing my focus on clinical care and clinical trials, which I love to do. I don't need to tell either of you. I mean, Dave, you've been chief and department chair and Pat has run cancer centers. After a while, the administrative tasks just were so overwhelming and I didn't enjoy them, that I said, “I've got to get back in some type of more clinical focus.” And that's when I decided to look around and fortunately found what's turned out to be a dream job at UNC.

But it was a time of life. Maybe my ego got in the way of my logic. I don't regret it. I met and I think we rebuilt a wonderful clinical program. But you realize some of the resources of big places with- we never had the research infrastructure to hire a lot of people and get big programs going on and great translational programs, just didn't have the funding. But it was great, and I have no regrets. And I learned how to tolerate the cold weather. And I have a lovely daughter, Sarah, who still lives up there. So we get back occasionally. And I've kept up with a lot of the people there. There are some wonderful people at UVM.

Pat Loehrer: From there, though, you were pulled down to North Carolina, where you've, again, built an incredible breast program there is outstanding. But you've created a Geriatric Oncology program, one of the first geriatric fellowships in oncology in the country. So tell us a little bit about that and what you feel may be your legacy is there at North Carolina.

Dr. Hyman Muss: Well, I had the opportunity over the years when I was at Wake, really, I got to know Shelley Earp, who's our cancer center director. I think maybe you were close to him, Pat. The longest surviving cancer center director on the planet, or among them. And we were good friends. And North Carolina's legislature actually gave the University of North Carolina substantial funding to improve cancer care in North Carolina, not just research. And so I had talked with Shelley about maybe moving, and because of the generosity of the state, really, he was able to really get me going, start a Geriatric Oncology program. And what I wanted to do was develop trials. As Dave says, I built a registry in 2009 here for older cancer patients using geriatric assessment. I have 2000 patients, which has been a resource for all types of faculty and fellows, and students to write papers. But I was able, with the support, to do things like this right from the get-go. And plus, I joined probably one of the best breast groups on the planet with Lisa Carey and Chuck Perou, and Larry, terrific people, Claire Dees. I had great luck in doing this, so I was able to really focus, get great support from my colleagues to build studies focusing on older people.

And then I had the great fortune of meeting Ned Sharpless, our prior NCI director. And Ned is one of the world's great aging biologists. And I don't mean aging as an adjective, he's really been a master on why we age, the biology of aging, cell senescence. So Ned taught me all about cell senescence and the mechanisms, especially the gene expression p16, which is like our own CDK inhibitor. And so I was able to start using his lab, collect samples, treat people with chemotherapy, follow them off with geriatric assessment. It was a great opportunity to do that here, and we got a lot of studies going and we showed what the pediatricians have known for years, that chemotherapy dramatically ages people, not just children, but adults. But it also allowed me to work with my colleagues in lymphoma and lung cancer to do little studies along the way.

And we eventually then built a T32 program. We got a T32, which we're kind of completing now our first five years to train oncology specialists in geriatrics. So the way we do it is they can be surgical oncologists, GU, we had a GYN oncologist, medical. With their HemOnc training, they do a year where they work with the geriatricians, so they go on geriatric inpatient service for a month and they really learn about older people. And part of it is a project. So we've been able to build that and develop a lot of programs with that. And I should say we've been very successful with mentorship and with ASCO support for things like YIAs, the late and great Arti Hurria, who absolutely an amazing woman. Some of her legacy at ASCO, the YIAs, and things. We've been successful in applying for some. So we've been able to build a whole spectrum of med and hematologists. We have an interest in Myeloma and AML focusing on older people. We've been able to build a whole team approach, including translational projects related to older people. And it's just been a great opportunity, and hopefully, my legacy here will be, too, and I'm working on it.

We have a wonderful guy, Bill Wood, who is very effective and has built this incredible coaching program to continue this legacy. Like many of us in this field, we are bothered because we all know the stats, we all know that first slide of the demographics of cancer, and yet it's been very hard in our culture to provide a lot of the services and build the clinical trials we need to best care for older people. It's still a major problem in this country. So as I cut back on my clinical care, I'm going to still advocate to try to improve the care of older people. Do geriatric assessment, build it into your clinical programs, get your hospitals to support you, convince them, build business plans, et cetera. And hopefully, that'll be my ultimate legacy, that we've made greater awareness of the older people, other than the usual stats, and we're really trying to care for them in a much more global sense, in a much more holistic sense than we've done. I hope we'll be successful. It's a slow haul, but we've got lots of great young people coming up through the pipelines, ASCO has been a great player in this. Many of you know people like Supriya Mohile and William Dale, Heidi Klepin, people, the next generation that's going to keep building this. So I hope the legacy will be that we get more buy-in, more interest, more trained people in other oncology-related subspecialties RadOnc, SurgOnc that will really focus on the care of older people.

Dave Johnson: I don't think there's any doubt that that will be a part of your legacy Hy, but I think your legacy will be much broader than the world of geriatric oncology. Your mentorship leadership, your clinical skills, your educational capabilities, all of that will certainly last for many, many years in the future.

Well, I don't want to bring up a touchy topic, but you yourself are geriatric and we're wondering what your plans are for your semi-retirement. I recognize you're not retiring, but what do you like to do outside of medicine?

Dr. Hyman Muss: I'll tell everybody who's interested in hearing this. On Tuesday, I had my 80th birthday.

Dave Johnson: Congratulations.

Dr. Hyman Muss: And I think I'm one of the most blessed guys. I'm pretty healthy. I married up - my wife Loretta, who both of you, Pat Loehrer and Dave Johnson, know well.

Dave Johnson: Yeah, you definitely married up.

Dr. Hyman Muss: Yes. It's really carried me most of my life. She's great and so she flew up our three kids and we celebrated and I'm very fortunate. I have the enthusiasm and strength to do more clinical medicine. But I think the time has come for me to cut back my clinical medicine, so I'm going to do that in June. The hardest thing I've done is say goodbye to so many of my patients here.

We've been blessed. We have a lovely family. We're pretty close. I'm never bored, probably you two know well, I love to do things like fishing, outdoor stuff. I've really gotten into woodworking, so I'm not going to be bored. But there will be a small piece out of me when I walk out of that clinic in June. I know that and my two close psychiatry friends think it's going to really be a hard fall, but I don't think so. I still have some grants. In fact, I'm working with a fellow in City of Hope, Mina Sedrak, who's been very involved in ASCO, too. We are hoping to get an R01 looking at senolytic drugs that may prevent aging, and exercise in older women with breast cancer to see if we can reverse the trends of chemo. So my brain is still on that stuff, but the clinical care is going to be tough.

I had a note and for some reason, we talked about so many things. I wanted to mention that one of my great opportunities was joining the CALGB and then the Alliance and getting the support of Dr. Schilsky, Rich Schilsky, who's been one of the icons of ASCO to build cancer in the elderly working group with Dr. Harvey Cohen at Duke. And Harvey is one of the world's great geriatricians. And using that to get studies done, to incorporate studies with Arti Hurria on geriatric assessment, and really have it as a place where a lot of younger investigators could get started on a career in geriatric oncology. And that was really a great opportunity. It was kept on by Dr. Bertagnolli, who now is our NCI director, and I think was really the first group to really give good support for this.

Dave Johnson: So we want to thank you very much for being our guest today.

We also want to thank our listeners of Oncology, Etc. This is an ASCO Educational Podcast where we talk about oncology medicine and much more. So if any of our listeners have an idea or a guest they would like for us to interview, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit ASCO's website at education.asco.org.

Thanks again for being our guest, Hy.

Dr. Hyman Muss: My pleasure. Thank you so much.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

To stay up to date with new treatments and standards of care medical oncologists in the United States are required to take the ABIM Maintenance of Certification exam, a ten-hour test, every ten years. This ASCO education podcast focuses on the Longitudinal Knowledge Assessment. An alternative test that offers more flexibility in medical certification.

Our guests are Dr. Suresh Nair Physician-in-Chief of Lehigh Valley Cancer Institute in Allentown, Pennsylvania and Chair of the ABIM Medical Oncology Board and Dr. Olatoyosi Odenike, Associate Professor of Medicine at the University of Chicago and member of the ABIM Medical Oncology Board.

Speaker Disclosures

Dr. Suresh Nair:

Research Funding - Bristol-Myers Squibb Recipient; Merck; Nektar Therapeutics; Mirati Therapeutics; Strata Oncology

Dr. Olatoyosi Odenike:

Consulting / Advisory Role – Abbvie; Impact Biomedicines; Celgene Recipient; Novartis; BMS; Taiho; CTI Biopharma; Threadwell therapeutics; Blueprint Medicines; SERVIER; Kymera; Bristol-Myers Squibb/Celgene

Research Funding - Celgene; Incyte; Astex Pharmaceuticals; NS Pharma; Abbvie; Janssen Oncology; Oncothyrapy; Agios; AstraZeneca; CTI BioPharma Corp Recipient; Kartos; Aprea AB; Bristol-Myers Squibb; Daiichi Sankyo; Loxo; Novartis

Resources

• To find out more about the ABIM LKA, go to https://www.abim.org/lka/
• For a video walk-through, visit https://www.youtube.com/watch?v=C0-qaUQmQXc
• Sign in to the ABIM Physician Portal to sign up for LKA by June 30, 2023: https://portal.abim.org/
• To find out more about how ASCO supports physicians engaged in ABIM MOC, go to https://old-prod.asco.org/meetings-education/continuing-education-moc
• If you are interested in joining the ABIM Item Writing Task Force for Medical Oncology, find out more and submit your application at: https://www.abim.org/about/boards-and-committees/openings/medonc-iwtf-physician/

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed in the podcast page.

Dr. Suresh Nair: The medical profession is one where new treatments and standards of care are being discovered and applied frequently, especially in oncology. Staying up to date with such practices allows the physician to provide the highest quality of care. How is this accomplished? By taking part in the Maintenance of Certification, or MOC. The traditional MOC assessment takes about 10 hours to complete and gives you ten years to be reported as certified before your next assessment is due. But given today's world where new treatments and standards of care are advancing rapidly, a more continuous assessment approach is warranted to help oncologists stay up to date.

This ASCO Education Podcast explores a new alternative to the every decade MOC exam for medical oncology. It's known as the Longitudinal Knowledge Assessment or LKA. I'm Suresh Nair MD, the Physician Chief of the Lehigh Valley Topper Cancer Institute in Allentown, Pennsylvania, and Chair of the American Board of Internal Medicine Medical Oncology Board. I will guide you through a general overview of the LKA, what it is, how it works, what the advantages are, and top-level need-to-know information. Joining me is my medical oncologist colleague, Dr. Olatoyosi Odenike, who's a professor of medicine and director of the Leukemia Program at the University of Chicago and serves as a fellow member of the ABIM Medical Oncology Board.

To begin, here are the essential differences between the ten-year maintenance of certification exam or MOC exam and the Longitudinal Knowledge Assessment, the LKA. Both are being used to help medical professionals maintain a working knowledge of the latest treatments and standards in use in their field. The MOC is administered every ten years at specified locations, lasts about 10 hours, and the results are available after two months. The LKA is another option. It has a five-year cycle during which you answer questions on an ongoing basis and receive regular feedback on how you're performing. Dr. Odenike has taken the LKA and the MOC.

Toyosi, please describe the preparation and the actual experience of taking the traditional MOC test. How much time did you take to prepare for the exam and how did you fit that prep time into your busy schedule?

Dr. Olatoyosi Odenike: Thank you so much, Dr. Nair. For the traditional MOC, I started preparing about six months ahead of time and it was challenging to find time to prep and to fit that into an already busy schedule. It came down to blocking out any available time, particularly on the weekends, in the few weeks leading up to the actual examination date. It was also challenging to find time to dedicate a whole day to taking the exam and traveling down to the test site to do so.

Dr. Suresh Nair: Today, the LKA is another option for busy oncologists. In 2022, the American Board of Internal Medicine launched the LKA after years of working with and listening to the physician community to understand their needs. As long as you're meeting the LKA participation requirement and other MOC requirements you'll continue to be publicly reported as certified for your entire five-year LKA cycle. The LKA is designed to provide greater flexibility, more convenience, and more immediate feedback, helping physicians stay current. Dr. Odenike, what has been your experience so far with the LKA?

Dr. Olatoyosi Odenike: So far, I have found the process far easier to navigate than the MOC. Registering for the LKA on the ABIM physician portal was very easy. There are 30 questions per quarter, and I chose to get weekly reminders of the due date, along with a link to access the portal and the LKA questions. I find this to be so convenient, I can determine when to access and complete the questions, which I have often done on block closer to the due date. You are able to do this and fit this in your schedule any way you choose, which is a big improvement on the traditional MOC.

Dr. Suresh Nair: Is the LKA a big time commitment for you? 30 questions per quarter seems like a lot. How does it compare to the traditional ten-year model?

Dr. Olatoyosi Odenike: There's a four-minute time limit per question. So technically, you can answer all 30 questions in one afternoon. Some physicians report doing this in two hours. Data gathered over the last year have shown that most participants answer questions in under two minutes. And how they approach it is unique to each person. Some set aside a little time each week to answer questions until they're finished. Others, like me, will do it all at once or over the course of one week near the end of the quarter. You could do one a day with your morning coffee if you wanted to. We have found the structure to be significantly more flexible than the traditional MOC.

We have a question for you, Dr. Nair. Can physicians sign up for the LKA now, even if they're not due for an assessment?

Dr. Suresh Nair: You can only sign up in the year that you're due, or rather, starting in the December prior to your due year. So, physicians due for an assessment in 2023 were able to enroll starting December 1, 2022. Physicians who are recently certified or who are not due for a few more years have to wait until their due year to sign up for the LKA.

Dr. Olatoyosi Odenike: What is the last date to sign up for the LKA?

Dr. Suresh Nair: The last day to enroll in 2023 is June 30. If you missed the enrollment date for the LKA this year, you can still opt to take the MOC exam in the fall without letting your certification lapse. MOC registration closes August 15.

Dr. Olatoyosi Odenike: What happens if you don't pass after five years?

Dr. Suresh Nair: If you don't pass after five years, you enter the grace period as long as you're meeting your other MOC requirements and will continue to be reported as certified during that time. You'll have one calendar year to pass the traditional MOC exam. In some ways, this is somewhat risk-free going with the LKA in that regard. Can physicians still take the MOC exam if they prefer to?

Dr. Olatoyosi Odenike: The MOC exam is still available in spring and fall each year for most certificates, including med ONC and hematology, the LKA is just another option. Many physicians prefer to take the traditional exam or if they're certified in multiple specialties, they use both the exam and the LKA to balance their time and areas of expertise better. Some physicians take the LKA in hematology and/or medical oncology while using the exam to remain certified in internal medicine, for instance, or vice versa.

I have a question for you, Dr. Nair. Who is eligible to take the LKA? How can physicians know if they're eligible?

Dr. Suresh Nair: LKA is offered in 15 specialty areas. All board-certified physicians in their assessment due year, except those in a grace period, are eligible. All physicians certified before 1990, all physicians with a lapsed certification. In fact, I had trained in both hematology and oncology 30 years ago, and I practiced medical oncology at two academic community hospital systems. I actually signed up for the LKA this past year to regain certification in hematology that had lapsed after my first 10 years, and I've had a great experience. I have finished a year of taking the test. I've gotten assessments. I see what my strong points and weak points are. I've actually ordered the ASH_SAP and I'm reading up on my weak points and I'm continuing this process. It really starts growing on you.

I'd like to thank Dr. Odenike for sharing your real-time experience in taking both the MOC and the LKA. I would like to extend an opportunity for all listeners interested in keeping their certifications through the LKA by going to the ABIM Physician portal www.abim.org. That's www.abim.org or go to the notes on the podcast page to access the link, as well as other resources. There you can keep track of assessment deadlines and progress, and it allows you to set reminders for assessments, points, and payments.

I want to thank all of you for listening to this ASCO Education Podcast. The ASCO Education Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncology well-being and professional development. If you have an idea for a topic or guest you'd like to see on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org. Thank you.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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In this episode of ASCO Educational podcasts, we'll explore how we interpret and integrate recently reported clinical research into practice. The first scenario involves a 72-year old man with high-risk, localized prostate cancer progressing to hormone-sensitive metastatic disease.

Our guests are Dr. Kriti Mittal (UMass Chan Medical School) and Dr. Jorge Garcia (Case Western Reserve University School of Medicine). Together they present the patient scenario (1:12), review research evidence regarding systemic and radiation therapy for high-risk localized disease (5:45), and reflect on the importance of genetic testing and (10:57) and considerations for treatment approaches at progression to metastatic disease (16:13).

Speaker Disclosures Dr. Kriti Mittal: Honoraria – IntrinsiQ; Targeted Oncology; Medpage; Aptitude Health; Cardinal Health Consulting or Advisory Role – Bayer; Aveo; Dendreon; Myovant; Fletcher; Curio Science; AVEO; Janssen; Dedham Group Research Funding - Pfizer

Dr. Jorge Garcia: Honoraria - MJH Associates: Aptitude Health; Janssen Consulting or Advisor – Eisai; Targeted Oncology Research Funding – Merck; Pfizer; Orion Pharma GmbH; Janssen Oncology; Genentech/Roche; Lilly Other Relationship - FDA

Resources ASCO Article: Implementation of Germline Testing for Prostate Cancer: Philadelphia Prostate Cancer Consensus Conference 2019

ASCO Course: How Do I Integrate Metastasis-directed Therapy in Patients with Oligometastatic Prostate Cancer? (Free to Full and Allied ASCO Members)

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Dr. Kriti Mittal: Hello and welcome to this episode of the ASCO Education Podcast. Today we'll explore how we interpret and integrate recently reported clinical research into practice, focusing on two clinical scenarios: localized prostate cancer progressing to hormone-sensitive metastatic disease; and a case of de novo metastatic hormone-sensitive prostate cancer progressing to castration-resistant disease.

My name is Kriti Mittal and I am the Medical Director of GU Oncology at the University of Massachusetts. I am delighted to co-host today's discussion with my colleague, Dr. Jorge Garcia. Dr. Garcia is a Professor of Medicine and Urology at Case Western Reserve University School of Medicine. He is also the George and Edith Richmond Distinguished Scientist chair and the current chair of the Solid Tumor Oncology Division at University Hospital's Seidman Cancer Center. Let me begin by presenting the first patient scenario.

Case 1: A 72-year-old male was referred to urology for evaluation of hematuria. A rectal exam revealed an enlarged prostate without any nodules. A CT urogram was performed that revealed an enlarged prostate with bladder trabeculations. A cystoscopy revealed no stones or tumors in the bladder, but the prostatic urethra appeared to be abnormal looking. Transurethral resection of the prostate was performed. The pathology revealed Gleason score 4+5=9 prostate cancer, involving 90% of the submitted tissue. PSA was performed one week later and was elevated at 50. Patient declined the option of radical prostatectomy and was referred to radiation and medical oncology.

So I guess the question at this point is, Dr. Garcia, in 2023, how do you stage patients with high-risk localized prostate cancer and how would you approach this case?

Dr. Jorge Garcia: That's a great question and a great case, by the way, sort of what you and I in our practice will call ‘bread and butter’. Patients like this type of case that you just presented come from different places to our practice. So either they come through urology or oftentimes they may come through radiation oncology. And certainly, it depends where you practice in the United States, at ‘X’, US, they may come through medical oncology.

So I think that the first question that I have is in whatever role I'm playing in this case, where the patient has seen a urologist or a rad onc or me first, I think it's important for us in medical oncology, at least in the prostate cancer space, to talk about how do we think of their case and put those comments into context for the patient. It's very simple for you to tell a patient you can probably have surgery, radiation therapy, but at the end of the day, how do you counsel that patient as to the implications of the features of his disease is going to be really important. I use very simple examples that I relate to my patients, but really this patient is a patient that has very high-risk prostate cancer based upon the NCCN guidelines and how we actually stratify patients into what we call low-risk, intermediate-, and high-risk, and between those very low and very high risk.

So his PSA is high, very high, I would argue. His Gleason score, now, what we call group grading is high. He has high-volume disease. So the first question that I would have is, what are the choices for treatment for a patient like this? But even before you and I may talk about treatment options, we really want to understand the volume of their disease and whether or not they have localized prostate cancer with high-risk features or whether or not they have locally advanced or hopefully not metastatic disease. So back in the days prior to the FDA approval for PSMA PET imaging, we probably will have a Technetium-99 whole-body bone scan, and/or we probably will actually use CT scanning. Most people in the past, we used to do just a CT of the abdomen and pelvic region. As you know, with the movement of oral agents in the advanced setting, I think most of us will do a chest CT, abdomen and pelvic region, and certainly we also probably will have a Technetium-99 bone scan.

Now, with the utility and the use of PET imaging, I think most people like him will probably undergo PET PSMA, where you use F-18 PSMA or Gallium-68 PSMA. I think the importance depends on how you look at the approval of these two technologies. I think that PET PSMA imaging is here to stay. It's probably what most of us will use. And based upon that, we will define yet the truest stage of this patient. So right now, what we know is he has high-risk features. Hopefully, their disease is localized. We'll probably put the patient through an imaging technology. If you don't have access to a PET, then obviously CT and a bone scan will do. But if you do, the PET will actually help us define if the patient has disease outside of the prostate region, in the pelvic area, or even if they have distant metastases.

Dr. Kriti Mittal: I would agree with that approach, Dr. Garcia. I think in the United States, we've been late adopters of PSMA scans. I think this patient with high-risk localized disease, if insurance allows at our institution, would get a PSMA for staging. There are still some patients where insurance companies, despite peer-to-peer evaluations, are not approving PSMAs. And in those situations, the patient would benefit from conventional CTs and a bone scan. So let's say this patient had a PSMA and was found not to have any regional or distant metastases. He decided against surgery, and he is seeing you as his medical oncologist together with radiation. What would your recommendations be?

Dr. Jorge Garcia: I think the bigger question is, do we have any data to suggest or to demonstrate that if in the absence of metastatic disease with conventional imaging or with emerging technologies such as PSMA PET, there is no evidence of distant disease, which I think you probably agree with me, that would be sort of unlikely with a patient with these features not to have some form of PSMA uptake somewhere in their body. But let's assume that indeed then the PSMA PET was negative, so we're really talking about high-risk localized prostate cancer. So I don't think we can tell a patient that radical prostatectomy would not be a standard of care. We never had a randomized trial comparing surgery against radiation therapy. This patient has already made that decision and surgery is not an option for him. If he, indeed, had elected radiotherapy, the three bigger questions that I ask myself are where are you going to aim the beam of that radiation therapy? What technology, dose, and fractionation are you going to use? And lastly, what sort of systemic therapy do you need, if any, for that matter? Where we do have some data maybe less controversial today in 2023 compared to the past? But I think the question is, do we do radiation to the prostate only or do we expand the field of that radiation to include the pelvic nodes?

Secondly, do we use IMRT? Do you use proton beam or not? Again, that's a big question that I think that opens up significant discussions. But more important, in my opinion, is the term of hypofractionation. I think the field of radiation oncology has shifted away from the old standard, five, seven weeks of radiation therapy to more hypofractionation, which in simple terms means a higher dose over a short period of time. And there was a concern in the past that when you give more radiation on a short period of time, toxicities or side effects would increase. And I think that there is plenty of data right now, very elegant data, demonstrated that hypofractionation is not worse with regards to side effects. I think most of us will be doing or supporting hypofractionation. And perhaps even to stretch that, the question now is of SBRT. Can we offer SBRT to a selected group of patients with high-risk prostate cancer? And again, those are discussions that we will naturally, I assume, in your practice, in your group, you probably also have along with radiation oncology.

Now, the bigger question, which in my mind is really not debatable today in the United States, is the need for systemic therapy. And I think we all will go back to the old data from the European EORTC data looking at the duration of androgen deprivation therapy. And I think most of us would suggest that at the very least, 24 months of androgen deprivation therapy is the standard of care for men with high-risk prostate cancer who elect to have local definitive radiation therapy as their modality of treatment. I think that whether or not it's 24 or 36, I think that the Canadian data looking at 18 months didn't hit the mark. But I think the radiation oncology community in the prostate cancer space probably has agreed that 24 months clinically is the right sort of the sweetest spot.

What I think is a bit different right now is whether or not these patients need treatment intensification. And we have now very elegant data from the British group and also from the French group, suggesting, in fact, that patients with very high-risk prostate cancer who don't have evidence of objective metastasis may, in fact, benefit from ADT plus one of the novel hormonal agents, in this case, the use of an adrenal biosynthesis inhibitor such as abiraterone acetate. So I think in my practice, what I would counsel this patient is to probably embark on radiotherapy as local definitive therapy and also to consider 24 months of androgen deprivation therapy. But I would, based upon his Gleason score of group grading, his high-volume disease in the prostate gland, and his PSA, to probably consider the use of the addition of abiraterone in that context.

Dr. Kriti Mittal: That is in fact how this patient was offered treatment. The patient decided to proceed with radiation therapy with two years of androgen deprivation. And based on data from the multi-arm STAMPEDE platform, the patient met two of the following three high-risk features Gleason score >8, PSA >40, and clinical >T3 disease. He was offered two years of abiraterone therapy. Unfortunately, the patient chose to decline upfront intensification of therapy. In addition, given the diagnosis of high-risk localized prostate cancer, the patient was also referred to genetic counseling based on the current Philadelphia Consensus Conference guidelines. Germline testing should be considered in patients with high-risk localized node-positive or metastatic prostate cancer, regardless of their family history. In addition, patients with intermediate-risk prostate cancer who have cribriform histology should also consider germline genetic testing.

Access to genetic counseling remains a challenge at several sites across the US, including ours. There is a growing need to educate urologists and medical oncologists to make them feel comfortable administering pretest counseling themselves and potentially ordering the test while waiting for the results and then referring patients who are found to have abnormalities for a formal genetics evaluation. In fact, the Philadelphia Consensus Conference Guideline offers a very elegant framework to help implement this workflow paradigm in clinical practice. And at our site, one of our fellows is actually using this as a research project so that patients don't have to wait months to be seen by genetics. This will have implications, as we will see later in this podcast, not only for this individual patient as we talk about the role of PARP inhibitors but also has implications for cascade testing and preventative cancer screening in the next of kin.

Dr. Jorge Garcia: Dr. Mittal, I think that we cannot stress enough the importance of genetic testing for these patients. Oftentimes I think one of the challenges that our patients are facing is how they come into the system. If you come through urology, especially in the community side, what I have heard is that there are challenges trying to get to that genetic counsel. Not so much because you cannot do the test, but rather the interpretation of the testing and the downstream effect as you're describing the consequences of having a positive test and how you're going to counsel that patient. If you disregard the potential of you having an active agent based upon your genomic alteration, is the downstream of how your family may be impacted by a finding such as the DNA repair deficiency or something of that nature. So for us at major academic institutions because the flow how those patients come through us, and certainly the bigger utilization of multi-disciplinary clinics where we actually have more proximity with radiation oncology urology, and we actually maybe finesse those cases through the three teams more often than not, at least discuss them, then I think that's less likely to occur. But I think the bigger question is the timing of when we do testing and how we do it.

So there are two ways -- and I'd love to hear how you do it at your institution -- because there are two ways that I can think one can do that. The low-hanging fruit is you have tissue material from the biopsy specimen. So what you do, you actually use any of the commercial platforms to do genomic or next-generation sequencing or you can do in-house sequencing if your facility has an in-house lab that can do testing. And that only gets you to what we call ‘somatic testing’, which is really epigenetic changes over time that are only found in abnormal cells. It may not tell you the entire story of that patient because you may be missing the potential of identifying a germline finding. So when you do that, did you do germline testing at the same time that you do somatic testing or did you start with one and then you send to genetic counseling and then they define who gets germline testing?

Dr. Kriti Mittal: So at our site, we start with germline genetic testing. We use either blood testing or a cheek swab assay and we send the full 84-gene multigene panel.

Dr. Jorge Garcia: Yeah, and I think for our audience, Dr. Mittal, that's great. I don't think you and I will be too draconian deciding which platform one uses. It's just that we want to make sure that at least you test those patients. And I think the importance of this is if you look at the New England Journal paper from many years ago, from the Pritchard data looking at the incidence of DNA repair deficiency in men with prostate cancer in North America, that was about what, around 10% or so, take it or leave it. So if you were to look only for germline testing, you only will, in theory, capture around 10% of patients. But if you add somatic changes that are also impacting the DNA pathway, then you may add around 23%, 25% of patients. So we really are talking that if we only do one type of testing, we may be missing a significant proportion of patients who still may be candidates, maybe not for family counseling if you had a somatic change, rather than germline testing, the positivity, but if you do have somatic, then you can add into that equation the potential for that patient to embark on PARP inhibitors down the road as you stated earlier. It may not change how we think of the patient today, or the treatment for that matter. But you may allow to counsel that patient differently and may allow to sequence your treatments in a different way based upon the findings that you have. So I could not stress the importance of the NCCN guidelines and the importance of doing genetic testing for pretty much the vast majority of our patients with prostate cancer.

Dr. Kriti Mittal: Going back to our patient, three years after completion of his therapy, the patient was noted to have a rising PSA. On surveillance testing, his PSA rose from 0.05 a few months prior to 12.2 at the time of his medical oncology appointment. He was also noted to have worsening low back pain. A PSMA scan was performed that was noteworthy for innumerable intensely PSMA avid osseous lesions throughout his axial and appendicular skeleton. The largest lesion involved the right acetabulum and the right ischium. Multiple additional sizable lesions were seen throughout the pelvis and spine without any evidence of pathologic fractures. So the question is, what do we do next?

Dr. Jorge Garcia: The first question that I would have is, the patient completed ADT, right? So the patient did not have treatment intensification, but at the very least he got at least systemic therapy based upon the EORTC data. And therefore, one would predict that his outcome will have been improved compared to those patients who receive either no ADT or less time on ADT. But what I'm interested in understanding is his nadir PSA matters to me while he was on radiation and ADT. I would like to know if his nadir PSA was undetectable, that's one thing. If he was unable to achieve an undetectable PSA nadir, that would be a different thought process for me.

And secondly, before I can comment, I would like to know if you have access to his testosterone level. Because notably, what happens to patients like this maybe is that you will drive down testosterone while you get ADT, PSAs become undetectable. Any of us could assume that the undetectability is the result of the radiation therapy. But the true benefit of the combination of radiation and ADT in that context really comes to be seen when the patient has got off the ADT, has recovered testosterone, and only when your testosterone has normalized or is not castrated, then we'll know what happens with your serologic changes. If you rise your PSA while you recover testosterone, that is one makeup of patient. But if you rise your PSA while you have a testosterone at the castrated level, that would be a different makeup of a patient. So do we have a sense as to when the patient recovered testosterone and whether or not if his PSA rose after recovery?

Dr. Kriti Mittal: At the time his PSA rose to 12, his testosterone was 275.

Dr. Jorge Garcia: Okay, perfect. You and I would call this patient castration-naive or castration-sensitive. I know that it's semantics. A lot of people struggle with the castration-naive and castration-sensitive state. What that means really to me, castration-naive is not necessarily that you have not seen ADT before. It's just that your cancer progression is dependent on the primary fuel that is feeding prostate cancer, in this case, testosterone or dihydrotestosterone, which is the active metabolite of testosterone. So in this case, recognizing the patient had a testosterone recovery and his biochemical recurrence, which is the rising of his PSA occur when you have recovery of testosterone, makes this patient castration-sensitive. Now the PET scan demonstrates now progression of his disease. So clearly he has a serologic progression, he has radiographic progression. I assume that the patient may have no symptoms, right, from his disease?

Dr. Kriti Mittal: This patient had some low back pain at the time of this visit. So I think we can conclude he has clinical progression as well.

Dr. Jorge Garcia: Okay, so he had the triple progression, serologic, clinical, and radiographic progression. The first order of business for me would be to understand the volume of his disease and whether we use the US CHAARTED definition of high volume or low volume, or whether we use the French definition for high volume from Latitude, or whether we use STAMPEDE variation for definition, it does appear to me that this patient does have high-volume disease. Why? If you follow the French, it's a Gleason score of >8, more than three bone metastases, and the presence of visceral disease, and you need to have two out of the three. If you follow CHAARTED definition, we did not use Gleason scoring, the US definition. We only use either the presence of visceral metastases or the presence of more than four bone lesions, two of which had to be outside the appendicular skeleton. So if we were to follow either/or, this patient would be high-volume in nature.

So the standard of care for someone with metastatic disease, regardless of volume, is treatment intensification, is you suppress testosterone with androgen deprivation therapy. And in this case, I'd love to hear how you do it in Massachusetts, but here, for the most part, I would actually use a GnRH agonist-based approach, any of the agents that we have. Having said that, I think there is a role to do GnRH antagonist-based therapy. In this case, degarelix, or the oral GnRH antagonist, relugolix, is easier to get patients on a three-month injection or six-month injection with GnRH agonist than what it is on a monthly basis. But I think it's also fair for our audience to realize that there is data suggesting that perhaps degarelix can render testosterone at a lower level, meaning that you can castrate even further or have very low levels of testosterone contrary to GnRH agonist-based approaches.

And also for patients maybe like this patient that you're describing, you can minimize the flare that possibly you could get with a GnRH agonist by transiently raising the DHT before the hypothalamic-pituitary axis would shut it down. So either/or would be fine with me. Relugolix, as you know, the attraction of relugolix for us right now, based upon the HERO data, is that you may have possibly less cardiovascular side effects. My rationale not to use a lot of relugolix when I need treatment intensification is quite simple. I'm not aware, I don't know if you can mitigate or minimize that potential cardiovascular benefit by adding abiraterone or adding one of the ARIs, because ARIs and abiraterone by themselves also have cardiovascular side effects. But either/or would be fine with me. The goal of the game is to suppress your male hormone.

But very important is that regardless of volume, high or low, every patient with metastatic disease requires treatment intensification. You can do an adrenal biosynthesis inhibitor such as abiraterone acetate. You can pick an androgen receptor inhibitor such as apalutamide or enzalutamide if that's the case. The subtleties in how people feel comfortable using these agents, I think, none of us – as you know, Dr. Mittal - can comment that one oral agent is better than the other one. Independently, each of these three oral agents have randomized level 1, phase III data demonstrating survival improvement when you do treatment intensification with each respective agent. But we don't have, obviously, head-to-head data looking at this.

What I think is different right now, as you know, is the data with the ARASENS data, which was a randomized phase III trial, an international effort looking at triple therapy, and that is male hormone suppression plus docetaxel-based chemotherapy against testosterone suppression plus docetaxel-based chemotherapy plus the novel androgen receptor inhibitor known as darolutamide. This trial demonstrated an outcome survival improvement when you do triple therapy for those high-volume patients. And therefore, what I can tell you in my personal opinion and when I define a patient of mine who is in need of chemotherapy, then the standard of care in my practice will be triple therapy. So if I know you are a candidate for chemotherapy, however, I make that decision that I want you to get on docetaxel upfront. If you have high-volume features, then the standard of care would not be ADT and chemo alone, it would be ADT, chemo, and darolutamide.

What I don't know, and what we don't know, as you know, is whether or not triple therapy for a high-volume patient is better, the same, equivalent, or less than giving someone ADT plus a novel hormonal agent. That is the data that we don't have. There are some meta-analyses looking at the data, but I can tell you that at the very least, if you prefer chemo, it should be triple therapy. If you prefer an oral agent, it certainly should be either apalutamide, abiraterone acetate, and/or enzalutamide. But either/or, patients do need treatment intensification, and what is perplexing to me, and I know for you as well, is that a significant proportion of our patients in North America are still not getting treatment intensification, which is really sub-optimal and sub-standard for our practice.

Dr. Kriti Mittal: Thank you, Dr. Garcia, for a terrific discussion on the application of recent advances in prostate cancer to clinical practice. In an upcoming podcast, we will continue that discussion exploring management of de novo metastatic prostate cancer.

The ASCO Education Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologists' well-being and professional development. If you have an idea for a topic or a guest you'd like to see on the ASCO Education Podcast, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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The early 1970’s saw the start of the medical specialty we now know as oncology. How does one create standards and practices for patient care during that time? Dr. John Glick is a pioneer during the dawn of oncology. He says that early work involved humanity, optimism, and compassion, all of which were the foundation of his career. Dr Glick describes the clinical experiences that drove him to oncology (4:28), his rapport with patients, which was portrayed in Stewart Alsop’s book Stay of Execution (9:21), and his groundbreaking work developing the medical oncology program at the University of Pennsylvania (12:22). Speaker Disclosures Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Dr. John Glick: None More Podcasts with Oncology Leaders Oncology, Etc. – In Conversation with Dr. Richard Pazdur (Part 1) Oncology, Etc. – HPV Vaccine Pioneer Dr. Douglas Lowy (Part 1) Oncology, Etc. – Rediscovering the Joy in Medicine with Dr. Deborah Schrag (Part 1) If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed in the podcast page.

Pat Loehrer: Welcome to Oncology, Etc. This is an ASCO education podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas. If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of our podcast is to introduce listeners to interesting people and topics in and outside the world of oncology. Today's guest is someone well-known to the oncology community. Dr. John Glick is undoubtedly one of oncology's most highly respected clinicians, researchers, and mentors. I've always viewed John as the quintessential role model. I will add that for me, he proved to be a role model even before I met him, which hopefully we'll talk about a little bit later.

To attempt to summarize John's career in a paragraph or two is really impossible. Suffice it to say, he is to the University of Pennsylvania Cancer Center what water is to Niagara Falls. You can't have one without the other. After completing his fellowship at NCI in Stanford, John joined the Penn faculty in 1974 as the Ann B. Young Assistant Professor. Some five decades later, he retired as the director of one of the most highly respected comprehensive cancer centers in the nation. Among his many notable accomplishments, I will comment on just a few. He established the Medical Oncology program at Penn and subsequently directed the Abramson Cancer Center from 1985 to 2006. Interestingly, he established the Penn Medicine Academy of Master Clinicians to promote clinical excellence in all subspecialties across the health system. He's been a driving force in philanthropy at Penn Medicine, culminating in his role as Vice President Associate Dean for Resource Development.

Over the past several decades, he has helped raise over half a billion dollars for Penn Med. We need you on our team, John. As a clinician scholar, John's research has helped shape standards of care for both breast cancer and lymphomas. For example, he pioneered the integration of adjuvant chemotherapy and definitive breast irradiation for early-stage breast cancer. In 1985, he chaired the pivotal NCI Consensus Conference on adjuvant chemotherapy for breast cancer. He also was a driving force in a clinical landmark study published in The New England Journal some 20 or so years ago about the role of bone marrow transplant for advanced breast cancer. Most impressive of all, in my opinion, is John's legacy as a mentor to multiple generations of medical students, residents, and fellows.

So, John, we want to thank you for joining us and welcome. Thought we might start by having you tell us a little about your early life, your family, your parents, where you grew up, and how you got into medicine.

Dr. John Glick: Well, thank you for having me on the podcast, Pat and David, it's always a pleasure to be with you and with ASCO. I grew up in New York City in Manhattan. My father was a well-known dermatologist. He was my role model. And from the age of eight, I knew I wanted to be a doctor. Nothing else ever crossed my mind. But having seen my father's many interests outside of medicine, I realized from very early that there was much more to medicine than just science. And that really induced me, when I went to college, to major in the humanities, in history, art history, and I actually took the minimum number of science courses to get into medical school. That probably wouldn't work today, but it was the start of my interest in humanism, humanities, and dealing with people outside of the quantitative sciences.

Dave Johnson: So that's reflected in how we all view you, John. You're one of the most humanistic physicians that I know personally. I wonder if you could tell us about your interest in medical oncology, and in particular, as one of the pioneers in the field. I mean, there wasn't really even a specialty of medical oncology until the early 1970s. So, how in the world did you get interested in oncology and what drew you to that specialty?

Dr. John Glick: Well, I had two clinical experiences that drove me into oncology. The first, when I was a third year medical student at Columbia PNS, my first clinical rotation in internal medicine, I was assigned a 20-year-old who had acute leukemia, except he was not told his diagnosis. He was told he had aplastic anemia, receiving blood and platelets, and some form of chemotherapy. And I spent a lot of time just talking to him as an individual, not just taking care of him. And we became friends. And he was then discharged, only to be readmitted about two weeks later. And in the elevator, the medical assistant had his admission sheet, and unfortunately, it was facing the patient, and it had his diagnosis, acute leukemia. So he came into the ward and he confronted me. "Why didn't you tell me I had acute leukemia?" Well, I couldn't say the attendees forbade me to do that. So I took what today we would call ‘the hit’, and apologized. But it stimulated me to reflect that honesty with patients was extremely important, and that oncology was just in its infancy. We knew nothing about it. It was not considered even a specialty. I don't think we used the word "oncology."

But that inspired me to take an elective in my fourth year at PNS, at an indigent cancer hospital called the Francis Delafield Hospital. It only took care of indigent cancer patients, and there were wards, twelve patients in a ward, six on each side, and nobody would go see the patients. It was almost as if they were afraid that if they were to touch the patient, they would get cancer. And I started talking to the patients, and they were human beings, but nobody had told them their diagnosis. Nobody had told them if they were terminal. And there were a few patients who were getting a new drug at that time for multiple myeloma called melphalan, and they actually had relief of some of the symptoms, of their bone pain. But I realized that there was a huge void in medicine that I could possibly help to fill.

And that was the era of Vietnam, and so I applied to the National Cancer Institute to become a commissioned officer in the Public Health Service to avoid the draft, to be on a service with, at that time, some very notable oncologists Vince DeVita, Ed Henderson, Paul Carbone. I had read some of their papers, and I was lucky to be accepted. And I was a clinical associate at the National Cancer Institute. And that was life-changing because there every patient was considered to be potentially curable. The advances at that time using MOPP for Hodgkin's disease, C-MOPP for lymphoma, some treatments for leukemia. George Canellos pioneered the use of CMF for metastatic breast cancer. It was an amazing, amazing experience. That was in 1971 to ‘73. Oncology did not become a true specialty till ‘73, but my two years at NCI were formative.

However, I realized that there was something missing in my training. Everybody was considered curable, but I had never seen a patient with metastatic colon cancer, metastatic lung cancer. The radiotherapists there did not like to teach clinical associates, and I knew that there was a place called Stanford. And Stanford had Saul Rosenberg in medical oncology for lymphomas and Henry Kaplan in radiotherapy. So, everybody was going to California, and my wife and I packed up and went to California and spent a year at Stanford, which, combined with my training at the NCI, led me to the principles that guided my career in oncology; humanity, optimism, reality, compassion, and a love for clinical trials.

I was very, very fortunate to be there at the dawn of medical oncology shortly after I decided to go to Penn, which at that time did not have a medical oncologist. In fact, I was the only medical oncologist at Penn for four years and did every consult in the hospital for four years, much to the chagrin of my wife. But I was fortunate to have great mentors in my career: Paul Carbone, Vince DeVita, Saul Rosenberg, Henry Kaplan, among many, many others. And that impressed me about the importance of mentorship because my career would never have been where it was or is without these mentors.

Pat Loehrer: John, just to echo what Dave said, you've been such a tremendous mentor for us. Dave and I particularly, you took us under your wings when you didn't know who we were. We were people in the Midwest. We weren't from any place shiny, but we really appreciate that.

Dave Johnson: So, John, I mentioned at the very beginning that I met you before I met you, and the way I met you was through Stewart Alsop's book, Stay of Execution. He portrayed you as an extraordinarily caring individual, and it tremendously impacted me. It was one of the reasons why I chose oncology as a specialty. I realize it's been 50 or more years ago and most of our listeners will have no idea who Stewart Alsop was. And I wonder if you might share with us a little bit of that experience interacting with someone who was particularly well-known in that time as a columnist for The New York Times.

Dr. John Glick: His brother Joe Alsop and Stu Alsop were two of the most famous columnists at that time. Joe Alsop was a hawk right-winger who lived in the Vietnam War. Stewart was charming, was a centrist Democrat, wrote the back page for Newsweek for years. He and I had very similar educational backgrounds and interests. And we functioned on two different levels—one as a physician-patient, and then we became friends. And he and his wife adopted us into the Georgetown set.

And I received a lot of criticism for socializing with a patient. But over the years, I've been able to become friends with many of my patients, and I've been able to compartmentalize their medical care from our friendship. And I use the analogy if I was a doctor in a small town and I was the only doctor, I'd be friends with people in town, with the pastor and likely the mayor. But I have always believed that patients can become your friends if they want it and if they initiated it.

Taking care of Stewart Alsop was an amazing, amazing experience. We didn't know what he had. People initially thought he had acute leukemia. In reality, he had myelodysplastic syndrome, but that hadn't been described yet. He had a spontaneous remission, which I rarely see, probably due to interferon released from a febrile episode, all his blasts went away in his marrow.

One of my children's middle name is Stewart. But professionally and personally, it was an incredible experience. It taught me the importance of being available to patients. They had my home phone number. We didn't have cell phone numbers in those days. We had beepers, but they didn't work. And from that point on, I gave my home phone number to patients, and I actually trained my children how to answer the phone. “This is Katie Glick. How can I help you? My father's not home. You need my father? Can I have your phone number? I'll find him and he'll call you back.” Patients still remember my children and their way of answering the phone.

Pat Loehrer: One of the things you did do is create this medical oncology program at Penn, which has graduated some incredible fellows that have become outstanding leaders in our field. But can you reflect a little bit about the process of creating something that was never created before, like a medical oncology program?

Dr. John Glick: Well, I came to Penn, my first day. Person who recruited me was on sabbatical. I asked where my office was and there was no office. There was an exam room. There was a clinic for indigent patients which we scrubbed by hand. There was another office for patients who paid. Within two months, I had abolished that. We had one– I hate to use the word clinic, people still use the word clinic today, but one office that took care of all patients, irregardless of means.

I saw every oncology consult in the hospital for four years. But I had a mentor, not only Buz Cooper, but fortunately, Jonathan Rhoads was Chairman of Surgery, and he was also Chairman of the President's Cancer panel. And what he said at Penn in surgery became the law. And then when we introduced lumpectomy for breast cancer and radiotherapy, he endorsed it immediately. All the other surgeons followed suit. I don't think there's any hospital in the country that adopted lumpectomy and radiotherapy for breast cancer as quickly. And the surgeons were instrumental in my career.

Now, I was taking care of gliomas, head and neck cancers, and it was difficult. If I had a colorectal patient, I'd call Charles Moertel at Mayo Clinic and say, “What do I do?” I was there when Larry Einhorn in 1975 presented his data on testicular cancer with the platinum. Unbelievably inspiring, transformational. It also showed the importance of single-arm studies. You didn't have to do randomized studies because the results were so outstanding. And so in my career, I did both single-arm studies, proof of principle studies, and then many randomized trials through the cooperative groups.

But the first four years were very difficult. I didn't know what the word ‘work-life balance’ meant in those days. If somebody was sick, I stayed and saw them. It was difficult introducing new principles. When I first mentioned platinum after Larry's presentation, I was laughed out of the room because this was a heavy metal. When patients were dying, they died in the hospital, and I wanted to hang up morphine to assist them. The nurses reported me to the administration. I had to fight to get the vending machines for cigarettes out of the hospital. So there were a lot of victories along the way and a lot of setbacks.

It took me several years to have an oncology unit of six beds, and now I think we have 150 or 160 beds and need more. So it was an interesting and, in retrospective, a wonderful experience, but I didn't know any better. Fortunately, I had a great wife who was working at Penn and then at Medical College of Pennsylvania, and she was incredibly understanding, never complained. And I think my kids knew that on Tuesdays and Thursdays, don't bring up anything difficult with dad because he's had a really tough day in clinic.

Dave Johnson: We were not in that era, but we were very close. And many of the struggles that you had were beginning to dissipate by the time we were completing our training. But it was still a challenge. I mean, all those things. I gave my own chemotherapy for the first few years I was in practice. I don't know that our colleagues today who have trained in the last, say, 10 or 15 years, actually realize that that was what we did. Most of the chemo was given in the hospital. It was not uncommon in the early days to have 20, 30, 40 inpatients that you would round on because there just wasn't an outpatient facility. But the corporate mind made a big difference, allowing us to give drugs like platinum in the outpatient arena. You span all of that era, and so you've seen the whole panoply of change that has taken place.

John, the other thing you did that has impressed me, in part because of my time as a Chair of Medicine, is you created this Academy of Master Clinicians. Can you tell us a bit about that and what was the motivation behind that?

Dr. John Glick: Ben had a strategic plan, and one of the pillars was talking about valuing clinical medicine and clinical excellence. But there was no implementation plan. It was sort of just words and left in the air. And I was no longer director of the cancer center, and I realized we had a lot of awards for research, awards for education, and no awards for clinical excellence. So I created the idea of having an academy and master clinician spend six months talking to all constituencies, chairs of various departments, directors of centers to get a buy-in. Wrote a three-page white paper for the dean, who approved it immediately. And then, as typical at Penn, I raised all the money for it. I went to one of my patients who was an executive at Blue Cross. I said I need $500,000 to start this program. And then subsequently, I raised $4 million to endow it. Today, it is the highest honor that a Penn clinician can receive.

You could be on any one of our multiple tracks. You have to see patients at least 60% of the time. You not only have to be a great doctor, you have to be a humanist. So the world's best thoracic surgeon who has a demeanor in the operating room that is not conducive to working with a nurse as a team doesn't get in. We emphasize professionalism, mentorship, citizenship, teaching, national reputation, local reputation, and clinical excellence. And so we've elected over 100 people, maybe 3% of the Penn faculty. We give an honorarium. We have monthly meetings now by Zoom. We have monthly meetings on various topics. We never have a problem getting any dean or CEO to come talk to us.

We were the first to do Penn's professionalism statement. The school subsequently adopted, and it's become the highest honor for a Penn clinician. It's very competitive. It's peer-reviewed. The dean has no influence. And we're very proud that 40% of the members of the academy are women. We have a high percentage of diversity compared to the numbers on our faculty, but you really have to be elected on merit, and some people that you might expected to be members of the academy aren't. It's one of the things I'm proudest of. It will go on in perpetuity because of the money we've raised. I think many of my accomplishments as a researcher will fade, as they typically do, but I'm very proud of the Academy, and I'm very proud of the people that I've mentored.

Dave Johnson: It speaks to your values, John, and I think it's one of the reasons why you're so widely admired. Thank you for creating that. It proved to be a model for other institutions. I know that for a fact. One would think that valuing clinical care would be preeminent in medical schools, but in fact, it's often ignored. So again, I know that your colleagues at Penn appreciate your efforts in that regard.

Tell us a little about your term as ASCO president. What are you most proud about and what were your most difficult challenges?

Dr. John Glick: Well, the most difficult challenge was that ASCO was in transition. I had to fire the company that ran the meeting. We had to decide that ASCO was going to hire a CEO. We hired John Durant, made a small headquarters, tiny staff, and did a lot of the work as being chief operating officer myself. It was the year that email was just getting started, and ASCO wasn't using it. So every Saturday from 8:00 to 6:00, I came into the office and my secretary wrote letters inviting people to be on the program committee or various committees. But it was a society in transition. The growth of membership was huge. The meeting sites had to be changed. We emphasized science. Some of the things that we did are still in existence today.

We formed the ASCO ACR Clinical Research Methods course. It's still given. That's one of our real highlights. We forged relationships with other societies, the National Coalition for Survivorship. We made the ASCO guidelines much more prominent. And I remember that we were going to publish the first guidelines on genetic testing for breast cancer, and the MCI went up in absolute arms, so I arranged a meeting. I was at the head of the table. On my right were Francis Collins, Richard Klausner, Bob Wittes, and a few other people. Then the ASCO people who wrote the guideline were on the left, and they didn't want us to publish it. They thought it was premature to have a guideline about genetic testing. And what I learned from that meeting is that you can agree to disagree with even the most prominent people in oncology and still maintain those relationships. But we did what's right, and we published a guideline on the JCO. There were so many wonderful things that happened at ASCO that I can hardly restate all that happened I guess 27 years later. It was exciting. ASCO was still young. There was a lot we had to do, and we could do it. You could just go ahead and do it. It was exciting. It was gratifying. It was one of the most fun years of my life.

Dave Johnson: I mean, that transition from an outside company in many respects, controlling the premier activity of ASCO, its annual meeting to ASCO, taking that on, that defined ASCO, and that's what I remember most about your time as president. It was a bold move, and the hiring of John Durant was brilliant. I mean, he was such an incredible individual, and it was great that you guys were able to pull that off.

Pat Loehrer: Thank you for what you've done.

You've had a number of your mentees if you will, and colleagues that have gone on to prominent positions, including, I think, at least three directors of NCI Cancer Centers. Can you just talk briefly how you would describe your mentoring style because you've been so successful?

Dr. John Glick: First, there are two aspects. One is when people come to you, and then when you go to people, you sense they're in need. The key aspect of mentoring is listening. Not talking, listening. Looking for the hidden meanings behind what they're saying, not telling them what to do, presenting options, perhaps giving them clues on how to weigh those options in pros and cons, being available for follow-up. Mentoring is never a one-time exercise. Not criticizing their decisions. You may disagree with their decision, but it's their decision, especially if they've considered it. Being proud of the mentee, being proud of their accomplishments, following them over the years. And when they've gotten in trouble or failed to get the job that they wanted, always be there for them, not just in the good times, but in the times that are difficult for them professionally. I think that's one of the most important things.

Even today, I mentor three or four clinical department chairmen, and people ranging from full professors to newly appointed assistant professors. Now that I'm retired, mentoring is the one activity that I've really retained. It's extraordinarily satisfying, and I'm proud of the people that I've mentored. But it's their accomplishments, and the key aspect of mentoring is never to take credit.

Dave Johnson: I'll give you credit for mentoring me, and I appreciate it. You were very instrumental at a very decisive point in my career when the old Southeast Cancer Group disbanded, and we were looking for a new cooperative group home. And you were instrumental in helping my institution come into the ECOG fold, and not just as a very junior member, but really as a player. And I'll never forget that, and we'll always appreciate that very much.

Pat Loehrer: Ditto on my side, too.

Dave Johnson: John, you mentioned that you're retired. What do you like to do in your "free time” if you're not mentoring?

Dr. John Glick: Life is good. My daughter says I have a disease, O-L-D. My grandson says, “He's not old; he's almost 80. Look how well he's done.” “Here's $20.” I'm having fun. We are fortunate to have homes in different places. We spend the summer up in the Thousand Islands on the St. Lawrence River, spring and fall down in Charleston, then lots of time in Philadelphia. We travel. I play golf poorly. I'm getting a chance to read history again, go back to one of my great loves. I'm with my children and grandchildren more. I lost my first wife. I've been remarried for about twelve years, and I'm enjoying every moment of that. I'm not bored, but I do wake up in the morning with no anxiety, no realization that I have to herd sheep or herd cats. I have no metrics, I have no RVUs, not behind of the EMR.

Dave Johnson: You're making it sound too good, John.

Dr. John Glick: We're having fun. And I have not been bored. I've not been down in the dumps. Each day brings a different aspect. We see a lot more of our friends. I exercise. I deal with the health problems that people get when they get older, and I have plenty of those. Seeing doctors takes a lot of time, but I'm grateful that I'm having these few years of retirement. I'm one of the people who is most fortunate to have attained everything they wanted to do in their professional life, and now I'm trying to do some of the same in my personal life.

Dave Johnson: John, Pat and I both love to read. We love history. You mentioned that you're reading some history. Is there a book that you've read recently that you might recommend to us?

Dr. John Glick: “the Last of the Breed” {With the Old Breed} It's about a private in the Pacific campaign who was not a commissioned officer; it’s just a grunt on the ground. It brings the horrors of the Pacific island campaigns to life. But there's a huge number of books, some historical fiction. I'm a great fan of Bernard Cornwell, who's written about the Medieval times, Azincourt, 1356. I'll read two or three books a week. I'm devoted to my Kindle.

Dave Johnson: If you could go back in time and give your younger self a piece of advice, what would that advice be?

Dr. John Glick: Try and achieve more of a work-life balance. I didn't have any choice. If I didn't do the consult, it didn't get done. That's not the situation today. But I have a second piece of advice, don't treat medicine as a 9 to 5 job. If a patient is sick, stay with the patient. Give the patient your home or cell phone number. Remember, medicine is not just a profession, but it can be a calling. Too few of our physicians today regard medicine as a calling. And even if you're employed, as most of us are by an academic or other institution, do what's right for the patient, not just what's right for your timesheet or the EMR. Remember that the patient is at the center of all we do and that medicine is a calling for some people, as it was for me.

Dave Johnson: Great advice, John. Great advice.

Well, I want to thank Dr. Glick for joining Pat and me. This has been a delight. You're one of our role models and heroes.

I want to thank all of our listeners of Oncology, Etc., which is an ASCO educational podcast where we will talk about oncology medicine and other topics. If you have an idea for a topic or a guest you'd like us to interview, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content of ASCO, please visit education.asco.org. Thanks again.

Pat, before we go, I've got an important question for you. I've been trying to school you recently, and you’ve failed miserably. So I'm going to ask you, why is it that McDonald's doesn't serve escargot?

Pat Loehrer: I can't do it. I don’t know. I give up.

Dave Johnson: It's not fast food.

Pat Loehrer: I like that. It's good.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Oncology is a rapidly evolving medical field. So how do you keep up with all the advances and updates that are delivered through publications, conferences, and social media? This ASCO Education podcast explores how three oncologists in various settings and stages of their career manage this issue. Our moderator Dr. Adriana Alvarez, a medical oncologist at Cleveland Clinic in Ohio is joined by Dr. Sharad Goyal, a professor and division chief of Radiation Oncology at George Washington University in Washington, DC; Dr. Shruti Patel, an oncology fellow at Stanford University in California; and Dr. Banu Symington, a medical oncologist at Memorial Hospital of Sweetwater County in Wyoming, and adjunct professor in the University of Utah College of Nursing. Each will describe what they do to keep up to date on research advances and guidelines (3:25), how they find time to stay current in their field (7:25) and how they follow developments outside of their area of concentration (13:57).

The speakers have no relevant disclosures.

Resources:

Podcast: Cancer Topics - Burned Out? Here's What You Can Do About It (Part 1)

Podcast: Cancer Topics - Burned Out? Here's What You Can Do About It (Part 2)

Podcast: Cancer Topics - Burnout in Oncology: Trainee Perspective

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed on the podcast page.

Dr. Adriana Alvarez: An oncologist recently described that while sitting on a couch to write an article, by the time he finished his first paragraph, he received six notifications on his iPhone from WhatsApp, Twitter, and other messages. He knows what the dilemma is; you can shut down your phone, but you become worried about missing an urgent call or important update. The oncologist knows that social media is a place to follow friends and colleagues, to discover new presentations, and even debate about them. However, he understands the overload of information that is part of the rapidly evolving field of oncology. On any given day or week, there are research advances and updates in the management of cancer being shared through journal publications, conference presentations, newsletters, social media, and other methods. How does one keep up to date with these advances in oncology?

I'm Dr. Adriana Alvarez, a medical oncologist at Cleveland Clinic in Ohio. In this ASCO Education Podcast, we will examine what various oncology professionals at different stages in their careers and working in different practice settings, namely academic versus community and urban versus rural, are doing to manage the large amount of information influx regarding advances in oncology.

Joining me are Dr. Sharad Goyal, a professor and division chief of radiation oncology at George Washington University in Washington, DC; Dr. Shruti Patel, an oncology fellow at Stanford University; and Dr. Banu Symington, a medical oncologist at Memorial Hospital of Sweetwater County in Wyoming, and adjunct professor in the University of Utah College of Nursing.

Let's start. One of the first questions I have here is how you can describe your current field of focus in oncology. Dr. Patel?

Dr. Shruti Patel: My current clinical focus in oncology is in thoracic and gastrointestinal malignancies, while my research interests include clinical trials, liquid biopsy, and diversity, and equity and inclusion.

Dr. Sharad Goyal: My current clinical and research focus is on breast cancer, radiation therapy, as well as radiation therapy with respect to neuro-oncology in the neuro-oncology space.

Dr. Adriana Alvarez: What about you, Dr. Symington?

Dr. Banu Symington: I'm a general oncologist, medical oncologist, in an extreme rural, I'm considered a frontier practice. I have a special interest in eliminating the social disparity that is represented by rurality, and I'm interested in clinical trials. We are the only Wyoming Cancer Center that opened clinical trials.

Dr. Adriana Alvarez: Well, it's all wonderful to hear about you and know a little bit about what your focus of work is, and we come from a variety of backgrounds. How do you feel like you keep up to date with the clinical practice, the research parts with new drugs approval in oncology? You are still in training Dr. Patel. How do you do that?

Dr. Shruti Patel: As a millennial, it may come as no surprise that I primarily stay up to date on clinical practice guidelines via Twitter on my phone. I find Twitter to be the best place to learn new information. Just because you don't just get information about the new approvals, but typically experts in the field will weigh in on the trial design, their thoughts on whether it truly will replace the current standard of care or what situations they might use the new approval for, which can really be helpful, especially as a fellow in training. It's helpful context beyond just the information that you get from the approval itself. And then, I also learn about the applications of these new guidelines in the clinic with my mentors, because I am, of course, lucky enough to still be in training where I can gather that information from my attendings.

Dr. Adriana Alvarez: Dr. Goyal, what is your preferred method of keeping up to date and learning more about the new treatments and research in your area of interest?

Dr. Sharad Goyal: As opposed to Dr. Patel, I am not part of social media in medicine. Actually, I'm not a part of any social media, whether it's personal or work-related. So I tend to be a little more “old school” with respect to how I ingest information. So, in terms of clinical practice guidelines and new drug approvals, which is somewhat peripheral to my field in radiation oncology, I tend to rely on NCCN guidelines and attendance at tumor boards to receive that information from my colleagues in medical oncology. I believe that with any patient that I see with a malignancy, I do tend to refer to the NCCN guidelines on a regular basis. And if it's a malignancy that I do not see, I have to reference PubMed, UpToDate, and the NCCN guidelines to determine the best course of treatment for that patient.

Dr. Adriana Alvarez: What about you, Dr. Symington? Being in the rural area, I can see that you have a variety of situations. How do you keep up to date?

Dr. Banu Symington: I guess I'm midway between Doctors Patel and Goyal. I do not follow Twitter, but I belong to a 5000-member online hematology/oncology support group, and we post questions, and local thought leaders will reply. I am in such an isolated location. I don't get the stimulation or the benefit of walking down the hall to a colleague to say ‘What would you do?’ So I am affiliated with the Huntsman and the University of Utah. I've made an effort to join every organ-specific tumor board so that I can hear discussions by disease thought leaders about how they're going to take care of each type of cancer and hearing that week after week, I do absorb it.

Medical oncology is a challenging field because things move so rapidly. I took an 18-month, mostly Sabbatical, as I functioned as a chief of staff at a larger hospital. And in that 18-month period, where I volunteered in a clinic, immune checkpoint therapy arose, and targeted therapies for lung cancer arose and I felt like Sleeping Beauty. I went to sleep in one world, and I woke up in a completely different world of oncology. And it was hard to get back into the drift until I connected with colleagues. I'm an avid reader. I don't sleep much. So I am a member of AMA, ASCO, and ACP, so I get all the print journals. And I have a disorder, an obsessive-compulsive disorder, that makes me have to look through every single journal I get. So print and tumor boards and colleagues.

Dr. Adriana Alvarez: So we are very busy, and the work that we do, the clinical work, trying to keep up to date and training and all that, how do you schedule time to do this, to learn about the research advances and to keep going? Dr. Goyal, how do you find the time?

Dr. Sharad Goyal: In general, I do think that in my realm, in my head, I think that there are three processes that have to occur when I incorporate research into my practice. So number one, I have to learn about it. Number two, I have to determine if that's going to help change my practice. And then number three, if I do end up changing practice, I have to implement it. And that involves dealing with my staff. So I'm going to delve into each of those in a little bit more detail. So learning about the advance typically, I learn about things through CME activities. So in one of my roles in our cancer center, I help organize our grand rounds and some oncology-specific courses. Being involved in the organization, helping find speakers really keeps me engaged not only in the organization process, but also in the learning process because I have a vested interest in making sure that the trainees and other faculty that attend my courses are learning and are happy.

Dr. Adriana Alvarez: To organize all these, do you schedule time during your job, outside work hours?

Dr. Sharad Goyal: Yes, that is part of my job, which extends outside of work hours.

Dr. Adriana Alvarez: Sounds good. Dr. Symington, well, you mentioned that you don't sleep much, you keep up to date, looks more at night. But do you find the time in between patients or during your workday to keep up to date, or is more like a solitude type of time?

Dr. Banu Symington: I forgot to mention a resource that I feel like people should know about, MedNet, which is presented daily with three clinical cases and thought leaders mentioning what they would do. They often introduce research ideas that are not adopted into practice. Since I read, I read about new innovative treatments, but I am not an early adopter, so I wait until they become an NCCN guideline before I would adopt it. So that might be different from Dr. Goyal, who's in an academic center. But I see patients five days a week, 10 hours a day, so it has to be all scheduled outside of those hours. It's fortunate that my kids are grown, and I don't sleep much.

Dr. Adriana Alvarez: What about you, Dr. Patel? On the go, I can imagine. I remember not long ago, being fellow and a millennial, so I guess on your iPhone.

Dr. Shruti Patel: Even though I'm a fellow, I do like sleep. And now that I'm in my research years, I actually get sleep, which is lovely. I can't say that I schedule time to learn about research advances, but rather it's– Usually, I take the train to work, and so I'm scrolling on my Twitter on the Caltrain down to Palo Alto, monitoring for medical news or updates. Really, that's how I gather information. I also partake in CME activity, creating CME educational materials on Twitter as well. And so that's another way in which I learn because if I'm creating the information, then I have to go through the trials and go through all of these things, side effects. And so it's a really great way, additionally, for me to learn. But none of that stuff is really scheduled. It's kind of really when I have time, on my to-do list, usually outside of business hours. Part of the job is staying up to date with things outside of business hours. And I think we all knew that when we signed up for the job. And it's only gotten more as all of these advances are kind of coming out at us like drinking out of a fire hydrant.

Dr. Adriana Alvarez: The most recent moment that you found new information related to your practice, how did you learn about it? Not about everything that you do, but the last time, the most recent one that you did that. Dr. Goyal?

Dr. Sharad Goyal: I recently referenced the NCCN guidelines. I was treating a gentleman with male breast cancer, and he told me he had some half-brothers and that they were going to get tested, but he was inquiring about the screening guidelines for men with BRCA mutations, and I had to look that up. I knew what they were for women, but I actually did not know what they were for men.

Dr. Adriana Alvarez: What about you, Dr. Symington?

Dr. Banu Symington: So last Thursday morning at 7:00, I joined the Huntsman Tumor Board for Breast. And one of the breast-specific oncologists actually said something that defies the NCCN guidelines, but it sounded like it made sense. He said he regularly gets PET scans for staging lymph node-positive HER2-positive breast cancer because he finds, and apparently the breast cancer community finds, that other scans can give you a false-negative result. And there are enough patients with metastatic disease in the lymph node-positive setting that he recommended PET scans for staging of HER2-positive breast cancer patients but not for ER-positive breast cancer patients. So that was just five days ago.

Dr. Adriana Alvarez: Wow. And what about you, Dr. Patel? When was the most recent time that you found something that was good information for your practice?

Dr. Shruti Patel: Yeah, as a fellow, I love learning about new information when I'm able to learn how to integrate it into the practice with someone that's more experienced than I am. So, of course, I've already mentioned that Twitter can be a great place. But also a few weeks ago, I was attending GI ASCO up in San Francisco, and they presented the latest results from NAPOLI-3, which was a phase 3 study looking at first-line liposomal irinotecan 5FU and oxaliplatin versus gem-Abraxane. And they presented that it was shown to improve overall survival compared to gem-Abraxane in first-line metastatic pancreatic cancer. And I was actually sitting next to my clinic mentor at the time, and during the break, I got to hear about his thoughts on whether this is going to be integrated into clinical practice, given that the control arm was gem-Abraxane, and not FOLFOXIRI. And we ended up discussing it again during our weekly GI trials meetings, just when we're thinking about opening new trials and what the control arm should be. And so I just thought that was like a new piece of information. Thought about it in the clinic, thought about it in the trial meeting, and it was pretty cool.

Dr. Adriana Alvarez: Great. So different settings, different ways to gain information. So, Dr. Symington, you have to see a little bit of everything. So you have to be an expert in everything. And I wonder how you, Dr. Goyal, and Dr. Patel, that you are kind of more subspecialized. How do you usually follow advances in other cancers that are not in your particular area of interest or just focus on your disease group? I'm going to let Dr. Goyal go first.

Dr. Sharad Goyal: Thank you. So I find that I tend to go to conferences to learn about advances outside of my disease focus. I prefer going to the educational sessions at major conferences like ASTRO or ASCO to keep up on things. On a more local level, I do find when I cover tumor boards for my colleagues that I do have to prep their patients and learn about different treatment paradigms within those disease sites. And in doing so, I feel like I'm able to gain really a deeper understanding about oncology in general, and I do very much appreciate that.

Dr. Adriana Alvarez: And Dr. Patel, well, you're in training, so you have to see a little bit of everything, even though you have the focus of your specialty that you are looking forward to do. But do you follow those too, as well? Other areas that might not take your interest right away but you want to be updated?

Dr. Shruti Patel: That's exactly it. I have to have a working knowledge of all the areas of oncology that are not my focus area. But really, for the most up-to-date information, the reality is that there are so many new advances in all of these disease types that I find myself leaning on my colleagues. If I come across a lymphoma patient on consults, I'll usually reach out to my lymphoma specialized colleagues, whether that's my co-fellows or attendings, just to kind of run the patient by them, get their insight, get their input, because they're just a lot more up to date on those things than I am. But really, regardless of the subspecialty within oncology, I do think that understanding the basics of all the oncology subspecialties is important in medical oncology. Because most of us will, or are, will for me because I'm a fellow, will be spending time on the inpatient service, which is not tumor type specific, and you really do have to make decisions for patients. And while, of course, you always have your colleagues to rely on and call on, some of those decisions are being made in the middle of the night. And so having a working knowledge of all of them, I think, is important.

Dr. Adriana Alvarez: We are lucky to live in a time that we have so many options, right? As a practicing oncologist myself, I rely also on all the resources that you're mentioning. The fear I have sometimes is, okay, I'm relying on the NCCN guidelines, but what if I'm missing something? The fear of missing something, right? It’s like if I'm not on Twitter or in another social media; I'm missing the most recent data, that may affect my patient care or things like that. But if I have to ask one of you, if you have to pick one, what would be your preferred method or format of receiving updated information if you have to decide where you could go for it? What about you, Dr. Symington?

Dr. Banu Symington: So, although I have made the case that I love reading, I actually absorb information better if someone is talking to me. So if I had the freedom to take time off, I would prefer to hear it at one-day specialty seminars where a thought leader is describing their work. That is not what I do in practice, but that would be my preferred way of getting new information.

Dr. Adriana Alvarez: Dr. Goyal?

Dr. Sharad Goyal: I'm very much aligned with Dr. Symington in that. I prefer a less active role in the learning process, and I prefer to be spoken to. My preferred method is via podcast, but I also do prefer the in-person or virtual learning through a conference as well.

Dr. Adriana Alvarez: What about you, Dr. Patel?

Dr. Shruti Patel: I promise you that Elon Musk is not paying me to say all of this because I've probably mentioned Twitter in every single answer. But my preferred method, as you guys probably can guess, is Twitter. It doesn't require too much dedicated time. Information is delivered in small doses. Like I said, I do it on my commute, so it makes me feel like my commute is actually part of my work, which is just wonderful. I do like to attend these smaller meetings to be kind of, like both Dr. Symington and Dr. Goyal said, to be spoken to and really learn additional information. I would say that I don't necessarily always get that experience at the bigger meetings where the focus is more networking. But ‘Best of ASCO’, those are kind of some types of meetings where the information is kind of told to you. It's distilled down into bite-sized pieces and really understandable.

Dr. Adriana Alvarez: Well, all amazing experiences. And I'm glad that we have different points of view, different settings, different career paths. Someone mentioned before is that we're always learning. I feel like here; everybody's very humble to recognize that we're on the learning curve all the time and that we have a real interest in our patient care. Because we are trying to catch the moment, try to make sure that we deliver the best care to our patients, like keeping up to date and listening to the new information. Dr. Goyal, any advice for your colleagues in terms of how to best keep up to date?

Dr. Sharad Goyal: My personal philosophy is that as a physician, the learning never stops. And if you do stop learning, maybe you should find a different field. During the pandemic, I started scheduling time with colleagues, friends in my field, and I would set up a meeting with them via our assistants every two or three months. And we would not only socialize but we would kind of catch up on the current state of affairs in our field. And it was an opportunity to also network, and it was very helpful, especially during COVID. It really helped me gain some normalcy and kind of keep me attached to the field of radiation oncology during that time.

Dr. Adriana Alvarez: How do you navigate clinic work, keeping up to date, and work-life balance? Dr. Goyal?

Dr. Sharad Goyal: Like Dr. Symington, I probably work about 50 hours a week in the office, so I tend to work from 7:00 to 5:00, and I'm out of the office at 5:00 on the dot. I have two small children at home, and I want to see them at least for two hours in the evening before they go to bed. As a radiation oncologist, we take HomeCall, and there are very few emergencies, so I have the weekends to not only spend time with my family but also catch up on any work that needs to be done.

Dr. Adriana Alvarez: I'm so glad to hear that. Congratulations on your family.

Dr. Symington?

Dr. Banu Symington: Well, I rescue small dogs, so at the moment, I have five small dogs, and they get a walk a day when weather permits. We're in the middle of a blizzard in Wyoming, so weather hasn't been permitting for the past four days, so the love and attention of those dogs keep me grounded. I also regularly go to the gym. I dread it every time I go, but I go at least four times a week, and I leave the gym and leave some of my problems behind. When I was younger, people would comment on the fact that I was slender and didn't need to go to the gym and would ask me why I did it, and I would say it's so I don't beat my children. That was obviously a joke, but I could shed the problems of the day by running on the treadmill or using the StairMaster. So I guess that's how I keep work-life balance.

Dr. Adriana Alvarez: What about you, Dr. Patel?

Dr. Shruti Patel: I would say that my work-life balance has improved greatly in the last eight months since I started the research portion of my fellowship. I'm not writing papers at 2:00 a.m. anymore, so that's like a huge upgrade. But really, I think, prioritizing when you're at work, you're at work, but then when you're at home, really trying to prioritize the things that are important to you. I am currently in my parents’ home, while I'm recording this podcast, I get to spend time with them. I get to spend time with my family, my friends. I like to make time for those things because they provide me joy. I think a huge part of our work is being there for people in really, really tough times in their life, and that can be extremely emotionally draining, even though it's exactly what we want to do. And I think making sure that you have things outside of work that really provide you a lot of joy is extremely important. And so I think now that I have the time to do it, I really am trying to capitalize on it.

Dr. Adriana Alvarez: Well, I really want to thank you, all of you, Dr. Goyal, Dr. Patel, and Dr. Symington, for a lively discussion. I learned a lot from you and a little bit about your personal life. Thank you for sharing that and sharing how you navigate to be a physician in oncology.

So this ASCO Education Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncology well-being and professional development. If you have an idea for a topic or guest you would like to see on the show, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, visit education.asco.org. Thank you very much.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

The availability and quality of cancer care varies in different parts of the globe. Some locations find it difficult to have proper equipment, access to medications or even trained staff on hand. In this ASCO Education podcast we look how a group of doctors are sharing their skills and experience to set up training programs to help improve outcomes for patients with cancer in Kenya. Our guests will explore the creation of a pediatric oncology fellowship program in Kenya (11:48), how a young doctor found herself interested in improving global health (14:30), and discuss lessons learned that are applicable to health care in the United States (21:07).

Speaker Disclosures Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Dr. Terry Vik: Research Funding Takeda, Bristol Myers Squibb Foundation Dr. Jennifer Morgan: None

Resources: Podcast: Oncology, Etc. - Dr. Miriam Mutebi on Improving Cancer Care in Africa Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan (Part 1) Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan Part 2

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed in the podcast page.

Dave Johnson: Welcome, everyone, to a special edition of Oncology, Etc., an oncology educational podcast designed to introduce our listeners to interesting people and topics in and outside the world of Oncology. Today's guest is my co-host, Dr. Pat Loehrer, who is the Joseph and Jackie Cusick Professor of Oncology and Distinguished Professor of Medicine at Indiana University, where he serves as the Director of Global Health and Health Equity. Pat is the Director Emeritus of the Indiana University Simon Comprehensive Cancer Center. Pat has many different accomplishments, and I could spend the next hour listing all of those, but I just want to point out, as many of you know, he is the founder of what formerly was known as the Hoosier Oncology Group, one of the prototypes of community-academic partnerships which have been hugely successful over the years.

He's also the founding director of the Academic Model for Providing Access to Healthcare Oncology Program, which has grown rather dramatically over the last 17 years. This includes the establishment of fellowship programs in GYN oncology, pediatric oncology, and medical oncology through the Moi University School of Medicine in Kenya. Through its partnership with the Moi Teaching and Referral Hospital, over 8000 cancer patients a year are seen, and over 120,000 women from western Kenya have been screened for breast and cervical cancer in the past five years. Pat is also the co-PI of the U-54 grant that focuses on longitudinal HPV screening of women in East Africa. He currently serves as a Senior Consultant of the NCI Cancer for Global Health.

So, Pat, welcome. We have with us today two special guests as well that I will ask Pat to introduce to you.

Pat Loehrer: Dave, thanks for the very kind introduction. I'm so pleased today to have my colleagues who are working diligently with us in Kenya. The first is Terry Vik, who is Professor of Pediatrics here at Indiana University and at Riley Hospital. He's been the Director of the Fellowship Program and the Pediatric Hematology-Oncology Program and Director of the Childhood Cancer Survivor Program. He got his medical degree at Johns Hopkins and did his residency at UCLA and his fellowship at Dana-Farber. And he's been, for the last 10 to 15 years, been one of my co-partners in terms of developing our work in Kenya, focusing on the pediatric population, where he helps spearhead the first pediatric oncology fellowship in the country.

And then joining us also is Dr. Jennifer Morgan. Jenny is a new faculty member with us at Indiana University as an Assistant Professor. She, I think, has 16 state championship medals for track and field in high school. I've never met an athlete like that in the past. She ended up going to Northwestern Medical School. She spent time in Rwanda with Partners in Health, and through that, eventually got interested in oncology, where she completed her fellowship at University of North Carolina and has spent a lot of her time in Malawi doing breast cancer research. I don't know of anyone who has spent as much time at such a young age in global oncology.

Dave Johnson: So Pat, obviously, you and I have talked a lot over the years about your work in Kenya, but our listeners may not know about Eldoret. Maybe you can tell us a little bit about the history of the relationship between your institution and that in Kenya.

Pat Loehrer: It's really a remarkable story. About 30 some odd years ago, Joe Mamlin and Bob Einterz, and Charlie Kelly decided they wanted to do a partnership in Global Health. And they looked around the world and looked at Nepal and looked at Mexico, and they fell upon Eldoret, which was in Western Kenya. They had the birth of a brand new medical school there, and this partnership developed. In the midst of this came the HIV/AIDS pandemic. And these gentlemen worked with their colleagues in Kenya to develop one of the most impressive programs in the world focused on population health and dealing with the AIDS pandemic. They called it the Academic Model for Prevention and Treatment of HIV/AIDS or AMPATH, and their success has been modeled in many other places. They have many different institutions from North America and Europe that have gone there to serve Western Kenya, which has a catchment area of about 25 million people.

About 15 to 20 years ago, I visited AMPATH, and what they had done with HIV/AIDS was extraordinary. But what we were seeing there in cancer was heartbreaking. It reminded us, Dave, as you remember back in the ‘60s and ‘70s with people coming in with advanced cancers of the head and neck and breast cancers that were untreated. And in addition, we saw these young kids with Burkitt's Lymphomas with huge masses out of their jaws. And seeing that and knowing what was possible, what we saw in the States and what seemed to be impossible in Kenya, spurred me on, as well as a number of other people, to get involved. And so, we have built up this program over the last 15 and 20 years, and I think it's one of the most successful models of global oncology that's in existence.

Dave Johnson: That's awesome. Terry, tell us a little bit about your involvement with the program at Moi University.

Terry Vik: Sure. So, I took an unusual path to get to Eldoret because I started off in work in signal transduction and protein kinases, then morphed into phase I studies of kinase inhibitors that was happening in the early 2000s. But by the end of the decade, Pat was beginning to establish oncology programs in Kenya. And because half the population is children and there were lots of childhood cancers, and many of them can be curable, he mildly twisted my arm to go with him to set up pediatric oncology in Kenya. And through his help and Matt Strother, who is a faculty member on the ground, establishing that, I first went in 2010 just to see how things were running and to see all the things that Pat had recognized as far as things that needed to be done to make Eldoret a center for cancer care.

And so, the last 13 years now, I've been working, going anywhere from one to four times a year to Kenya, mainly helping the Kenyans to develop their medical care system. Not so much seeing patients or taking care of patients, other than talking about best practices and how we do things in the US that can be readily translated to what's going on in Kenya. And so, we've been able to establish a database, keep track of our patients in pediatric oncology, recognize that lots of kids are not coming into care, not being diagnosed. There's a huge gap between numbers who you would expect to have childhood cancer versus the numbers actually coming to the hospital. As the only pediatric treatment center for a catchment area of 25 million, half of whom are under the age of 20, we should be seeing a lot of kids with cancer, but we are probably only seeing 10% of what we would expect.

So, myself, many of my colleagues from Indiana University, as well as colleagues from the Netherlands Princess Maxima Hospital for Pediatric Cancer, we've been partnering for these past 13 years to train Kenyans to recognize cancer, to have treatment protocols that are adapted for the capabilities in Kenya, and now finally starting to show real progress in survival for childhood cancer in Kenya, both in leukemias, lymphomas, and solid tumors, with a fair number of publications in Wilms tumor and Burkitt lymphoma and acute lymphoblastic leukemia. So, it's been really heartening, I think.

I tell people that the reason I go to Kenya studying signal transduction and protein kinase inhibitors in pediatric cancer, I can maybe save a couple of kids over a career by that kind of work. But going to Kenya to show people how to find and treat kids with leukemia, I'm literally seeing the impact of hundreds of kids who are alive today that wouldn't be alive otherwise. So, that's really been the success of pediatric oncology there.

Dave Johnson: Is the spectrum of childhood cancer in Kenya reflective of what we see in the States, or are there some differences?

Pat Loehrer: It really is surprisingly similar. I think the only thing that– Well, two things that are more common in Kenya because of the so-called ‘malaria belt’ and the association with Burkitt Lymphoma, there's a fair number of kids with Burkitt’s Lymphoma there. Although, as mosquito control and malaria control has improved, actually, the numbers of cases of Burkitt’s have been dropping, and a lot of cancers were sort of hidden, not recognized as leukemia or not recognized as other lymphomas. Just because if Burkitt’s is endemic, then every swelling is Burkitt's. And I think that's been shown by looking at pathology retrospectively to say a lot of what they thought was Burkitt's was maybe not necessarily Burkitt's. And then nasopharyngeal carcinoma with Epstein-Barr virus prevalence also is a little bit more common than I'm used to seeing, but otherwise, the spectrum of cancers are pretty similar. So, it's heartening to know that we've been treating childhood cancers with simple medicines, generic medicines, for 50 years in the US. And so I like to tell people, I just want to get us up to the ‘90s, maybe the 2000s in Kenya, and that will really improve the survival quite a bit.

Dave Johnson: You mentioned that there were adjustments that you were making in the therapies. Could you give us some examples of what you're talking about?

Terry Vik: The biggest adjustments are that the ability to give blood product support, transfusions of platelets is somewhat limited. So, for instance, our ability to treat acute myeloid leukemia, which is heavily dependent on intensive myelosuppressive chemotherapy, we're not so good at that yet because we don't have the support for blood products. Similarly, the recognition and treatment of infections in patients is somewhat limited. Yet, just the cost of doing blood cultures, getting results, we actually have the antibiotics to treat them, but figuring out that there actually is an infection, and we're just beginning to look at resistance patterns in bacteria in Kenya because I think that's an indiscriminate use of antibiotics. In Kenya, there are a lot of resistant organisms that are being identified, and so figuring out how best to manage those are the two biggest things. But now, in Eldoret, we have two linear accelerators that can give contemporary radiation therapy to kids who need it. We have pediatric surgeons who can resect large abdominal tumors. We have orthopedic surgeons and neurosurgeons to assist. All those things are in place in the last three to five years. So, really, the ability to support patients through intensive chemotherapy is still one of the last things that we're working diligently on improving.

Dave Johnson: So one thing that I've read that you've done is you're involved heavily in the creation of a pediatric oncology fellowship program. If I read it correctly, it's a faculty of one; is that correct?

Terry Vik: Well, now that two have just graduated, it's a faculty of three, plus some guest lecturers. So I feel quite good about that.

Dave Johnson: So tell us about that. That must have been quite the challenge. I mean, that's remarkable.

Terry Vik: That goes back to one of my longtime colleagues in Kenya, Festus Njuguna, who is Kenyan. He did his medical school training at Moi University and then did pediatric residency there. They call it a registrar program there. And then he was, since 2009, 2010, he's been the primary pediatric oncologist. Although he always felt he did not have the formal training. He'd spent time in the US and in Amsterdam to get some added training for caring for kids. But it was his vision to create this fellowship program. So Jodi Skiles, one of my colleagues who had spent some time in Kenya and myself and he worked on creating the fellowship document that needs to go through the university to get approved. That finally got approved in 2019. And so the first two fellows…I was on a Fulbright Scholar Award to start that fellowship program for a year right in the middle of the pandemic, but we were able to get it started, and I was able to continue to go back and forth to Kenya quite a bit in the last two years to get through all of the training that was laid out in our curriculum. And two fellows, Festus and another long-standing colleague of mine, Gilbert Olbara, both completed the fellowship and then sat for their final exams at the end of last year and graduated in December. So it really was heartwarming for me to see these guys want to build up the workforce capacity from within Kenya, and being able to support them to do that was a good thing.

Pat Loehrer: Parenthetically, Dave, we had the first Gynecology Oncology program in the country, too, led by Barry Rosen from Princess Margaret, and they have 14 graduates, and two of them now are department chairs in Kenya. Jenny's spearheading a medical oncology curriculum now so that we have that opened up this year for the first time.

Dave Johnson: It's uncommon to find a junior faculty as accomplished as Jenny. Jenny, tell us a little about your background and how you got interested in global health, and your previous work before moving to IU.

Jennifer Morgan: I was an anthropology major at undergrad at Michigan, and I think I really always liked studying other cultures, understanding different points of view. And so I think part of that spirit when you study anthropology, it really sticks with you, and you become a pretty good observer of people and situations, I think, or the goal is that you become good at it. I think my interest in medicine and science, combined with that desire to learn about different cultures really fueled a lot of my interests, even from undergrad and medical school. I really felt strongly that access to health is a human right, and I wanted to work for Partners in Health when I graduated from residency. I had heard a lot about that organization and really believed in the mission around it.

And so I went to work in Butaro in Rwanda, and I really didn't have any plans to do cancer care, but then I just kind of got thrown into cancer care, and I really loved it. It was a task-shifting model that really where you use internists to deliver oncology care under the supervision of oncologists from North America. So, most of them were from Dana-Farber or a variety of different universities. And so it made me feel like this high-resource field of Oncology was feasible, even when resources and health systems are strained. Because I think a lot of people who are interested in Oncology but also kind of this field of global health or working in underserved settings really struggle to find the way that the two fit sometimes because it can feel impossible with the hyper-expensive drugs, the small PFS benefits that drive the field sometimes. And so I think, Butaro for me, and Partners in Health, and DFCI, that whole group of people and the team there, I think, really showed me that it's feasible, it's possible, and that you can cure people of cancer even in small rural settings. And so that drove me to go to fellowship, to work with Satish Gopal and UNC. And because of COVID, my time in Malawi was a bit limited, but I still went and did mainly projects focused on breast cancer care and implementation science, and they just really have a really nice group of people. And I worked with Tamiwe Tomoka, Shakinah Elmore, Matthew Painschab, really just some great people there, and I learned a lot.

And so, when I was looking for a job after fellowship, I really wanted to focus on building health systems. And to me, that was really congruent with the mission of AMPATH, which is the tripartite mission of advancing education and research and clinical care. And I knew from Pat that the fellowship program would be starting off, and I think to me, having been in Rwanda and Malawi and realizing how essential building an oncology workforce is, being a part of helping build a fellowship as part of an academic partnership was really exciting. And then also doing very necessary clinical outcomes research and trying to do trials and trying to bring access to care in many systems that are very resource constrained. So that's kind of how I ended up here.

Pat Loehrer: That's awesome. So tell us a little bit about your breast cancer work. What exactly are you doing at the moment?

Jennifer Morgan: In Malawi, during my fellowship, we looked at the outcomes of women with breast cancer and really looking at late-stage presentations and the fact that in Malawi, we were only equipped with surgery, chemotherapy, and hormone therapy, but not radiation. You see a lot of stage four disease, but you also see a lot of stage three disease that you actually have trouble curing because it’s so locally advanced, really bulky disease. And so that first study showed us the challenge of trying to cure patients– They may not have metastatic disease, but it can be really hard to locally even treat the disease, especially without radiation. And so that’s kind of what we learned.

And then, using an implementation science framework, we were looking at what are the barriers to accessing care. And I think it was really interesting some of the things that we found. In Malawi, that has a high HIV rate, is that the stigma around cancer can be far more powerful than the stigma around HIV. And so, we are seeing a lot of women who are ostracized by their communities when they were diagnosed with cancer. And really, they had been on, many HIV-positive women, on ARVs for a long time living in their communities with no problem, and so HIV had kind of been destigmatized, but we’re seeing the stigma of cancer and the idea that kids are as a death sentence was a really prominent theme that we saw in Malawi.

So some of these themes, not all of them, but some of them are very similar in Kenya, and so what I’m helping work on now is there’s been this huge effort with AMPATH called the Breast and Cervical Cancer Screening Program, where around 180,000 women have been screened for breast cancer in a decentralized setting which is so important - so in counties and in communities. We're looking at who showed up to this screening and why did women only get breast cancer screening and why did some of them only get cervical, and why did some get what was intended - both. Because I think many people on the continent and then other LMICs are trying to do breast and cervical cancer co-screening to really reduce the mortality of both of those cancers. And the question is, I think: is mammography a viable screening mechanism in this setting or not? That’s a real question in Kenya right now. And so we're going to be looking to do some studies around mammography use and training as well.

Dave Johnson: So, I have a question for all three of you. What lessons have you learned in your work in Kenya or Malawi that you've brought back to the States to improve care in the United States?

Pat Loehrer: One is that the cost of care is ever present there. And so one of the things that we need to think about here is how can we deliver care more cheaply and more efficiently. It goes against the drug trials that are going on by industry where they want to use therapy for as long as they can and for greater times. And there are a lot of common things like access to care is a big issue there, and it’s a big issue in our country. So we have used in IU some community healthcare workers in rural parts of our state as well as in the urban centers so that they can go to people's houses to deliver care.

Terry was involved with a wonderful project. It was a supplement from the NCI, which looked at barriers to care and abandonment of therapy. And just by giving patients and their families a small stipend that would cover for their travel and their food, the abandonment rate went down substantially, and they were able to improve the cure rate of Burkitt's Lymphoma. It’s probably about 60% now. And so those are issues that I think we see here in our state, where people can’t come to IU because of the cost of parking, that’s $20 a visit. The lesson there is that we really need to get down to the patients and to their families and find out what their obstacles are.

Terry Vik: My favorite example, since I deal with kids and parents, is how striking parents are the same worldwide. They all want the best for their child. They all want anything that can be done to potentially cure them, treatment, they do anything they could. And I think the hardest thing, as Pat said, is the financial burden of that care. And the other thing that I bring back to my fellows in the US is that you don't have to do Q4-hour or Q6-hour labs to follow somebody when they start their therapy. Once a day, every 3 days, works quite well also. And just the realization that things can be done with a lot less stress in the US if you only decide to do it.

Dave Johnson: Jenny, any thoughts from you on that?

Jennifer Morgan: I think for me, decentralized cancer care is so important. Even being back on the oncology wards in Indiana in December, I saw a couple of really advanced patients who were really unfortunate, and they had tried to go through the system of referrals and getting to cancer care. And unfortunately, I think there are disparities in the US health system, just like in Kenya, and maybe on different scales. But cancer care that's accessible is so important, and accessible versus available, I think we a lot of time talk about therapies that may be available, but they’re not accessible to patients. And that’s really what we see in Kenya, what we see in rural Indiana. There are a number of grants that talk about reciprocal innovation because some of these things that we do in Kenya to minimize burden on the system are things that can be done in rural Indiana as well. And so, partnership on these issues of trying to improve decentralized care is important everywhere.

Pat Loehrer: And again, from the perspective as a medical oncologist, we see patients with late-stage diseases. We could eradicate the number one cause of cancer in Sub-Saharan Africa, cervical cancer, from the face of the earth just by doing prevention. We don't do enough in our country about prevention. The other dimension I guess I wanted to bring up as far as multidisciplinary care - when we think about that in our country, it’s radiation therapy, surgery, medical oncology, but one of the lessons learned there is that the fourth pillar is policy. It’s really about cancer policy and working with the government, Ministry of Health to affect better insurance cover and better care and to work with a different discipline in terms of primary care, much more strongly than we do in our country.

Dave Johnson: Are you encountering similar levels of vaccine hesitancy in Kenya as you might see in the States, or is that something that’s less of an issue?

Pat Loehrer: I’ll let Terry and Jenny answer that.

Terry Vik: I think there is some degree of vaccine hesitancy, and not so much that it's fear of the vaccine, but it’s fear of the people pushing the vaccine. If it’s coming from the government or if it’s coming from outside drug companies or outside physician recommendations, it’s less likely to be taken up. And if it’s coming from within their own community or if it’s their chiefs and their community leaders they respected, then I think there is less vaccine hesitancy certainly in a lot of things we do in pediatrics. So I think there is hesitancy, but it’s coming from a different source than what we see in the US.

Jennifer Morgan: I would agree, and I think also COVID has changed the game on vaccine perceptions everywhere, and I don’t think Kenya is spared from that either. So it may take a few years to see really what’s going on with that.

Pat Loehrer: Jenny and I were at this conference, it’s a Cancer Summit in Nairobi a couple of weeks ago, and we saw this little documentary there. And this notion of misinformation, as we’ve seen in our country, is also common over there. They were interviewing a number of men and women from Northern Kenya about prostate cancer, which is a very serious problem in Kenya. The notion was that even doing PSA screening caused infertility, and so the men and women didn't want their husbands to get screened for prostate cancer because they would become less fertile by doing that. So, again, there are lessons that we– as Jenny mentioned from the top about anthropology, I think we’re all connected, we all have different ways of viewing communications in health, but I do think that we can learn from each other substantially.

Dave Johnson: I mean, it's remarkable work. How is it funded?

Pat Loehrer: Well, I've been fortunate to be able to work with some friends who are philanthropists. We've had strong support as we've told our story with various different foundations. And we've been very grateful to Pfizer, who are very helpful to us in the early stages of this - Lilly Foundation, Takeda, Celgene. And I think as we basically share our vision of what we're trying to accomplish, we've been very humbled by the support that we have gotten for us. The U54 helps support some of the research. We have D43 we're doing through Brown University. So we plan to increase our research funding as best as we can. But this is active generosity by some wonderful people. We have a $5.5 million cancer and chronic care building in which a large sum of it came from Indiana University and the Department of Radiation Oncology. Dr. Peter Johnstone helped lead that. There was a Lilly heir that gave us quite a bit of money. An Indian Kenyan named Chandaria also donated money. So it's a matter of presenting the vision and then looking for people that want to invest in this vision.

Well, I just want to say, from my perspective, I am more of a cheerleader than on the field. But Terry, I know you spent a tremendous amount of time on the ground in Kenya, and Jenny, you're living there. I just wanted to say publicly that you guys are my heroes.

Dave Johnson: Yeah. I think all of our listeners will be impressed by what they heard today, and we very much appreciate you both taking time to chat with us.

So at this point, I want to thank our listeners of Oncology, Etc., an ASCO Educational Podcast. This is where we'll talk about oncology medicine and beyond. So if you have an idea for a topic or a guest you'd like us to interview, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org.

Pat, before we go, I have an important question to ask you.

Pat Loehrer: I can't wait.

Dave Johnson: Do you know how snails travel by ship?

Pat Loehrer: As cargo!

Dave Johnson: Awesome. You got it. All right. Well, Terry and Jenny, thank you so much for taking time to chat with us. It's been great. I'm very impressed with the work you guys are doing. Really appreciate your efforts.

Terry Vik: Great. Thank you.

Jennifer Morgan: Thank you.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Clinical trials are essential to progress in medicine, but racial and ethnic minorities are frequently underrepresented in such studies. In this ASCO Education podcast episode, we will examine this issue with Dr. Carol Brown, gynecologic cancer surgeon and Chief Health Equity Officer at Memorial Sloan Kettering Cancer Center, Dr. Ana Maria Lopez, Professor and Vice Chair of Medical Oncology at Sidney Kimmel Medical College and former Chair of ASCO’s Health Equity Committee and Mr. Ted Bebi, Innovation Manager at Medidata Solutions. They discuss how diversification of clinical trials contributes to health equity (4:03), barriers to participating in clinical trials (14:37), and what clinicians and trial sponsors can do to improve participant diversity in clinical trials (20:25).

Speaker Disclosures Dr. Carol Brown – None Ted Bebi: Employment – Medidata (a Dassault Systèmes company); Stock and Other Ownership Interest – Pfizer, Eli Lily, Abbvie, Merck, BMY Dr. Ana Lopez - None

Resources

• ASCO-ACCC Initiative to Increase Racial & Ethnic Diversity in Clinical Trials
• Journal Article: Increasing racial and ethnic diversity in cancer clinical trials
• Journal Article: Representation of minorities and women in oncology clinical trials
• Podcast: Impact of Implicit Racial Bias on Oncology Patient Care and Outcomes
• ASCO-ACCC JustASK Training Program

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Dr. Carol Brown: Welcome to the ASCO Education podcast. I'm Dr. Carol Brown, a gynecologic cancer surgeon and the Chief Health Equity Officer at Memorial Sloan Kettering Cancer Center. Our guests and I will be exploring the problems and solutions with regards to racial disparities in clinical trials.

A necessary element for conducting clinical trials is, obviously, the enrollees or participants. Racial and ethnic diverse groups are frequently underrepresented in clinical trials, despite having a disproportionate burden for certain cancers. In addition, there is increasing evidence that a person's individual genetic makeup may determine the level of toxicity or efficacy of a new cancer drug specifically. Therefore, when we don't have enough diversity in our cancer clinical trials, it can really undermine the generalizability of our results. And so, to address this gap, in its recent updated guidance to industry, the US Food and Drug Administration stated that enrollment in clinical trials should reflect the diversity of the population who ultimately use a treatment.

In 2022, ASCO and the Association of Community Cancer Centers issued a joint statement recommending that anyone designing or conducting trials should complete recurring education, training, and evaluation to demonstrate and maintain cross-cultural competencies, mitigation of bias, effective communication, and a commitment to achieving equity, diversity, and inclusion.

Joining me to discuss this important topic today is Dr. Ana Maria Lopez, who's the Professor and Vice Chair of Medical Oncology at the Sidney Kimmel Medical College. And she's the former Chair of ASCO's Health Equity Committee. Our second guest is Mr. Ted Bebi, Innovation Manager at Medidata Solutions. His research explores underrepresentation of black patients at clinical trials and how diversity impacts clinical trials.

Participant disclosures for this episode are listed on the podcast page.

So why should we care about improving diversity in clinical trials? Dr. Lopez?

Dr. Ana Maria Lopez: We are clinicians. We are wanting to take care of our patients as best as possible, and we can only do that if our studies include everyone. An example that I often think about is the concept of airbags began in 1953, and in 2008, the National Highway Traffic Safety Administration came out and said, “You know what? We should be testing airbags on small female crash test dummies because otherwise, we don't know that these airbags will be safe.” And in fact, there were data that the airbags that existed put women and children at a much higher risk for injury or death. So, we want to be ahead of that curve, and we want to allow the best possible treatment.

Dr. Carol Brown: So, Mr. Bebi, what would you say about how we could improve diversity in clinical trials?

Ted Bebi: So I really like the example of the airbags that Dr. Lopez brought up because it makes it clear when building a product it's important to test the product in a representative sample of the population that will ultimately end up using it. It's the same with products like medications. If you want an efficacious drug, you should test it in the appropriate population. It's what constitutes good science. Additionally, adequate diversity in clinical trials is also important because it's ultimately an issue of health equity and providing fair access.

Dr. Carol Brown: Could you kind of go on from there and talk about, specifically, how does diversifying the group of people that participate in clinical trials actually translate into increasing health equity?

Ted Bebi: Well, participating in a clinical trial is a form of receiving health care. Often, we are talking about patients for which a clinical trial might be their last resort. And even if not, participating in a clinical trial means gaining early access to potentially life-changing drugs that could become the new industry standard and doing so at no cost. So, you're receiving care and follow-up from some of the best specialists in the field. So having fair access to this opportunity for all patients is definitely a health equity issue.

Dr. Carol Brown: Great. Dr. Lopez, how would you answer that question about how does diversifying clinical trials contribute to health equity?

Dr. Ana Maria Lopez: Yeah, no, I think I agree with everything that Mr. Bebi said. In addition, I think we have to remember that diversity is more than race. Race is truly a social construct. We need to think about gender. We need to think about age, the whole lifespan, and people are living longer. How we metabolize medications at different time points in our life may vary. So, lots of different factors that we can consider when we think of diversity. But the gold standard is really: Are folks getting the best outcome possible? And as long as that metric is not being reached, we need to be thinking of how can we facilitate that.

Dr. Carol Brown: So, Dr. Lopez, you brought up this concept that health equity is really the best outcome possible. Could you comment a little bit about how do we know, particularly in cancer, what is the best outcome possible? So how do we determine what the reference is for that, so we can figure out whether our patients are actually getting health equity?

Dr. Ana Maria Lopez: Sure. So, we use different time points. We can look at relapse rates, survival rates, and of course, part of that may be comorbidities. Certain comorbidities that people have may impact their cancer treatment outcomes. So, it is complex, but it is important for us to take a look contextually at what the patient's risk is and what the patient's outcome would be.

Dr. Carol Brown: We can kind of all agree that when we're talking about equity, it's getting the best outcome for everybody, no matter what they're bringing to it. And I really like your comment, Dr. Lopez, about race being not only the only factor but remembering that it is a social construct. If you could add to that, Mr. Bebi.

Ted Bebi: We're talking a lot about diversity in clinical trials in terms of race and ethnicity, and that is something that is ultimately very important. But we're talking about diversity in all sorts of aspects. We're talking about diversity with age. We're talking about diversity with sex, with socioeconomic aspects because we often use race as a proxy for other things that might be going on in patients’ lives. And we need to consider all of this part of diversity in clinical trials because once the drug is out in the market, it will be an intersection of potentially all of those identities and many things going on in their life that might affect how they respond. So, when we're thinking about race as a diversity point, we might be using it as a proxy for a specific type of individual, a specific patient journey that we want to make sure to include. It's not necessarily that race is the end-all, be-all measure of diversity; it's that we want to capture the true patient experience for that disease.

Dr. Ana Maria Lopez: What I think is also really interesting is how we collect the data. And some of what the last couple of years have taught us is that folks may not trust our healthcare systems, and so folks may not be willing to say, ‘I am X, Y, or Z,’ which certainly puts us a little bit in the void. So how important it is for us as clinicians, as researchers, to be part of creating an environment where patients can feel that ‘Yes, I can trust and I can share, and I can say, this is who I am,’ because that could impact clinical care.

Dr. Carol Brown: So, acknowledging that race is a social construct and that it really is used as a surrogate for other social determinants of health and other factors that affect health, and again, really acknowledging what you said, Dr. Lopez, that even asking people to identify their race is extremely problematic. But given what we do know and what our experience has been in the clinical trial world, first, Mr. Bebi, could you comment about what has been your experience and your research with the current state of participation by diverse racial and ethnic groups in clinical trials in the United States? What have you found in your research?

Ted Bebi: Recently, at Metidata, we published a paper where we looked at the state of black participation in clinical trials. We found the level at which you look at the data really matters. For example, when we looked at racial diversity across all US trials, black representation actually matched the proportion of black people represented in the 2020 US National Census, which is about 14%. But looking deeper, there were actually huge differences by therapeutic and disease area. And specifically, we saw that in oncology, black participation was only at around 8.5%, so far below the representation of black people in the United States.

Another interesting story is that when we were looking at the central nervous system therapeutic area, overall, we saw a pretty high rate of black participation at around 20%. But when we looked at one of the largest central nervous system indications, Alzheimer's, we saw only 5% black participation, so much, much lower. What we discovered is that within this therapeutic area, there were actually a lot of psychiatric trials that were driving the rate up. So, the main takeaway from this research is that you cannot take a general level of diversity as adequate for all diseases. You really have to zoom in on the specific indication to understand what constitutes good diversity or representative diversity for that disease.

Dr. Carol Brown: I'd like to ask both of you what do you think about that - what the bar should be. Because Mr. Bebi, you mentioned using the census distribution of races in the population, but I think a lot of us in the cancer field feel like that maybe isn't the right bar. Maybe the bar should really be what is the cancer burden distributed according to self-identified race, ethnicity, or other categories. And when you look at that, I think you find some different statistics. So, Dr. Lopez, could you comment about what your work has shown you about the current state of representation of diverse people affected by cancer in cancer clinical trials, and maybe get a little bit more into what you were saying earlier about the definition of race and the challenge of determining race, etc.

Dr. Ana Maria Lopez: We really need to look closely at the data, and that looking at therapeutic trials and at specific populations can be really important. Now, we're a big country, so there can be - what is the catchment area that you serve? And in that catchment area, what are the cancers you're treating, and in which populations are at greatest risk? But right, sometimes it may not be - let's say the population is 10%x, but if that population is at higher risk for a certain disease, to really get granular about the understanding, I need to recruit more people that are from that greater-risk population. So that's where I think it's so important to know the population, to have connections with the community. And actually, the community can say, “Hey, this is what you may want to be studying because this is what impacts us.”

Ted Bebi: If I can speak on the research side as well, the best way to ensure representative diversity is to have a very solid understanding of the natural prevalence of a disease. We need to be able to understand what the risk populations are and, even further, what does the mortality look like? Are there differences in how different patients are experiencing the disease further on, not just how they're getting the disease and how often they're getting the disease? So it needs to look different for every single indication. And even with the oncology, for example, the two largest indications in clinical trials for oncology, lung cancer and breast cancer, they also look slightly different. With lung cancer, and our research showing at 8% black participation and breast cancer being a little bit higher at around 11%. So, we always need to take into consideration that incidents include prevalence, include mortality. And yes, the golden standard should be can we build a clinical trial that reflects the actual representative diversity of the disease in the real world? That is what we're striving for.

Dr. Carol Brown: I would agree with that. I would also add, though, that there may be some specific cancers for which you want to have an even greater representation of a particular group because it might be directly related to the question you're trying to answer. So, for example, you mentioned breast cancer, so I think most of the audience is probably aware that young women who self-identify as black tend to have a higher mortality from breast cancer. And this is believed to be because they are more likely to get triple-negative breast cancer. And so one of the strategies we've looked at at our cancer center is for trials specifically for triple-negative breast cancer, trying to overrepresent women who self-identify as black or have African ancestry in those trials because we're specifically trying to make sure that we do something to narrow that gap in survival from breast cancer that they experience. So, I think that, as you all mentioned, I think what we can take from this is it's really important to look closely that there are different layers and subtleties that we have to take into account.

So, I think we've clearly established that there is underrepresentation of diverse groups. But let's talk about why. So why do we think that different self-identified races and ethnicities or age groups or socioeconomic status background people are underrepresented in clinical trials? What are some of the reasons in your experience for this, Dr. Lopez? Is it funding outreach? What are the main barriers that you've experienced in terms of getting diverse populations to participate in clinical trials?

Dr. Ana Maria Lopez: Maybe all of the above. But one of the things, and one of the things that we're working on, is when a person comes in and you have the trauma of the diagnosis. And they're offered a study, and there may be suspicion of the health care system, that may not be the best time to really talk and educate around a clinical trial. So, if people receive the education, learn about clinical trials before that acute event, then they can come in more prepared. So, one is just the concepts of randomization, double blind in the setting where there may be distrust of the healthcare system may be difficult. Also, some of the clinical trials, and I'm sure everyone has studies where the person needs to be at the clinic for about 12 hours getting blood draws. And people have other responsibilities, and they may not have the support mechanisms for transportation, for childcare, for elder care. And if you're taking two to three buses and, you know, here I am in Center City, Philadelphia, and you need to take two to three buses to get home at 07:00, that could be a deterrent to getting on a clinical trial.

So, there are lots of clinical factors, social factors, experience with the studies, and also how we design the studies. Can we design studies so that we are more inclusive in the criteria? So, I think lots of questions, and then certainly there are clinician factors. There could be bias that we all have that maybe we don't offer studies to certain people, so something for us to be very introspective about as well.

Dr. Carol Brown: So, Mr. Bebi, could you comment specifically on, with the research that you've done, are there some barriers on the side of the sponsors of the trials or in terms of industry that you found and that you found in your work at Medidata, maybe really affecting the ability of diverse people to participate in clinical trials?

Ted Bebi: Dr. Lopez did a really good job at presenting what we consider patient-level barriers, such as mistrust in the healthcare system. Logistical issues such as taking time off from work, transportation, or feeling that the investigators running the trials don’t fully represent the patient. But the industry-level barriers are just as important. A lot of companies are making decisions on what good diversity should look like and where they can find more diverse patients based on incomplete data sources such as disconnected external data, or they might be limited to data from the companies.

Dr. Carol Brown: Great. So, Dr. Lopez, what do you think individual physicians can do, or individual investigators can do to improve the diversity of representation in cancer clinical trials?

Dr. Ana Maria Lopez: Certainly, being circumspect, being aware of our own biases, our own approaches. But as a health system, I think we need to think about: How can we make it easy to enroll people into trials? So are there ways, if this is, for example, a study for people at this stage of cancer, that all of those patients could be screened in the electronic record? Let's have our electronic tools work for us so that we identify patients that are meeting the study criteria and then connecting the patients, the study, and the investigators together. So, this way, by having our systems identify potential participants, there's a less chance of there being that personal bias. The research team can come to the doctor, to the oncologist, let's say, and say these are folks that are eligible. What do you think? So, in a way, setting up systems to help with the recruitment would be very helpful.

Dr. Carol Brown: Mr. Bebi, can you comment from the standpoint of specifically– because you focus on this– the importance of data, the data, how to capture the data about race or ethnicity or whatever the demographic diversity variable is, what can individual investigators do to really address the challenges around collecting this data and sharing it?

Ted Bebi: Often, race and ethnicity data is not even captured at all. So, if we want to understand this issue better and improve upon it, we need better data inputs in order to produce this large-scale research that will help us ultimately advance the issue and not just rely on anecdotal information.

Dr. Carol Brown: Are there any technologies or things that you came across in your specific work that can help with this ability to capture this type of data and to share it?

Ted Bebi: I think it has more to do with the awareness and the clinician relationship with the patient. And I also think it has to do with sponsors and the way that they design the trial, to begin with, whether or not the race and ethnicity entry is something that they're asking in their electronic health forms. Because if that is not included in the clinical trial, to begin with, then there won't be any incentive to capture that information.

Dr. Carol Brown: Dr. Lopez, do you have any specific tips that you would recommend to clinicians who want to improve recruitment of underrepresented groups in their clinical trials?

Dr. Ana Maria Lopez: I think one thing that's really important is to be able to have the time. Now, that may not mean that it's all the clinicians' time. It may mean that you have a research coordinator. It may mean that you have a research nurse. It may mean that you give the patient a video that explains the study that they can take home. There can be different ways. Something that I often ask a patient is, “How do you make decisions?” People tell me, “You know, I always go over this with my wife,” let's say, or, “I always discuss this in our family, and then we come to a conclusion.” Because that really helps me to think about how should I best deliver the information so that the patient can really feel I made a good decision and I made a value-congruent decision. So, I think time is critical and to set up our patient experience to really facilitate that type of experience for the patient.

Also, as a reference, I would urge people to take a look at the recent recommendations put out by ASCO and ACCC that talk specifically about increasing racial and ethnic diversity in cancer clinical trials. So, there are lots more strategies, a lot more ideas, and ways to really support clinicians and researchers.

Dr. Carol Brown: Mr. Bebi, do you have any specific tips, particularly for trial sponsors, about how they can improve diversity in their clinical trials?

Ted Bebi: In terms of companies and sponsors, what they can do if they want to improve diversity in their trials is they need to find and include the right sites that serve the populations that they are looking for. We published research that shows that there is high variability of diverse recruitment based on which sites you are looking at, with some sites providing the highest concentration of diverse patients. So, if diversity is not woven into trial design off the bat and you're not selecting the right sites, you run the risk of not reaching these populations.

Companies also need to be willing to put in work to educate and develop sites into clinical trial sites. A clinical trial site is about building trust and relationships and knowing how to be culturally adept at talking to diverse communities.

Dr. Carol Brown: Great. Thank you so much. Well, I want to thank both of you, Dr. Lopez and Mr. Bebi, for a lively discussion on this ASCO Education podcast about diversity in clinical trials.

The ASCO Podcast is where we explore topics ranging from implementing new cancer treatments and improving patient care to oncologist well-being and professional development. If you have an idea for a topic or a guest you'd like to see on the ASCO Education Podcast, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org.

Speaker Disclosures

Dr. Carol Brown – None

Ted Bebi: Employment – Medidata (a Dassault Systèmes company); Stock and Other Ownership Interest – Pfizer, Eli Lily, Abbvie, Merck, BMY

Dr. Ana Lopez – None

The purpose of this Podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this Podcast express their own opinions, experience, and conclusions. Guest statements on the Podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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For some, pursuing a medical career is an all-consuming passion. What do you do if you have two? In this ASCO Education podcast, we look at the influences that propelled Dr. Lisa Rosenbaum to become a practicing cardiologist at Brigham and Women’s Hospital in Boston and a national correspondent for the New England Journal of Medicine. Dr. Rosenbaum will explain the family legacy that impacted her choice to pursue medicine (1:46), her discovery of the love of writing (5:02) and what prompts her to write about specific topics (15:53).

Speaker Disclosures Dr. Lisa Rosenbaum: None Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical

Resources: Gray Matters: Analysis and Ambiguity by Lisa Rosenbaum, MD Podcast: Oncology, Etc. - In Conversation with Dr. Peter Bach (Part 1) Podcast: Oncology, Etc. – In Conversation with Dr. Peter Bach (Part 2)

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Disclosures for this podcast are listed in the podcast page.

Pat Loehrer: Welcome to Oncology, Etc. an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: Hi, I'm Dave Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas.

If you're a regular listener to our podcast, welcome back. If you're new to Oncology, Etc., the purpose of our podcast is to introduce listeners to interesting people and topics in and outside the world of oncology, hence the "etcetera" in our name. Today's guest is an example of the "etcetera" aspect of our podcast. Dr. Lisa Rosenbaum is a practicing cardiologist at the Brigham and Women's Hospital in Boston and a member of the Harvard Medical School faculty. She's a highly respected national correspondent for the New England Journal of Medicine. Dr. Rosenbaum began her writing career while she was still an undergraduate at Stanford. She later attended med school at the University of California, San Francisco, completed an internal medicine residency at the Mass General Hospital in Boston, and a cardiology fellowship at Weill Cornell in New York. She spent an additional year of fellowship at The New England Journal, where she learned about writing, reporting, and investigative journalism. Subsequently, she was hired for an academic position at Brigham and presented with an opportunity to write on a regular basis for The New England Journal. She's written on a whole variety of topics, ranging from physician burnout to cognitive bias, resident duty hours, conflicts of interest, vaccine hesitancy, and many other topics.

So, Lisa, thank you for joining us today. We're very excited to have you on the program.

Dr. Lisa Rosenbaum: Thank you so much for having me.

Dave Johnson: Well, perhaps we could start by asking you to just tell us a little about your background and your family.

Dr. Lisa Rosenbaum: I grew up in Portland, Oregon. My parents are both physicians. My father is a rheumatologist and my mom is a cardiologist, and now my sister is also an endocrinologist. And we have several family members who are physicians, including my grandfather, who was also a rheumatologist and a writer and played a pretty pivotal role in my life, both in terms of my decision to become a physician and also a writer. When he was in his 70's, he got laryngeal cancer and he was treated with radiation therapy and cured. But after, he wrote a book about the experience of being a patient called A Taste of My Own Medicine, which I think was published in the late 80's. It's an autobiography. And then in the early 90's, Disney bought the rights to the book and made it into the movie The Doctor, starring William Hurt. He has a cameo, actually, and apparently it took him like 17 takes just to get it right, to wave his hand when he's sitting in the waiting room.

That was a pretty formative experience in my life, because basically he ended up, after writing that book and, you know, having a lot of success with it, wanting to write another book. And by then he was in his late 80's, and he ended up getting Parkinson's disease, which steadily progressed. He died at 94, so he lived a long, good life. But when I got into medical school, he decided he wanted to write a book with me and that it was sort of the follow up to A Taste of My Own Medicine, because he sort of recognized medicine's shortcomings in the book and asked a lot of questions, but he would always say, "I have more questions than I have answers." And when I got into medical school, he had this idea that we were going to come up with all the answers and make medicine as wonderful as it had once been for him. So obviously that was a big part of my life, both in terms of my career as a writer and also my career as a doctor. Though I think I really never questioned whether or not I wanted to be a doctor. That just sort of seemed so obvious to me as a kid that the work was so meaningful. And I don't know, there's something about growing up where everywhere you go, people tell you how one of your relatives made their lives better. That's pretty inspiring, as a kid.

Pat Loehrer: It's interesting that both your parents were physicians, but you claim that your grandfather is the one that got you into medicine. But I think your early career, I think you were actually kind of focused on writing and writing creative fiction, and there was another event in your life that kind of turned you back over to medicine too, right?

Dr. Lisa Rosenbaum: Right, right. And I don't want to not give credit to my parents. They played a huge, wonderful role in my life as well, and they still do.

So anyway, I did take a detour in my career. So, in college I ended up, the fall of my junior year, taking a creative writing class. I'd done all the pre-med requirements by then and probably like many pre-meds, it felt very robotic to me. It's also, you're surrounded by all these people who are really ambitious, and you can feel like you're not very good, right? I remember I made a B-minus on my first organic chemistry exam, and I called my mom crying, and I was like, "I'm not going to be a doctor. This is a disaster." So all of a sudden, once I had gotten through those classes and I took this creative writing class, it was just this transformative experience for me because it was intensely creative. And I've always been just really interested in people, like what makes people do what they do, and character. I am just so fascinated by people's characters.

But the other part of the creative writing classes that I loved so much was just the sense of community. So you go from this setting where you're all sort of pitted against one another in these classes, and then you're in this place where everybody's trying to help each other and you're learning about each other through writing because we're all really just like writing about ourselves, even when we pretend otherwise. And I made some of the best friends of my life who've gone on to have actually remarkable writing careers. So sort of on a whim because it was so enriching for me and I felt like I couldn't live without it, I applied for MFA's in Creative Writing in my senior year, and I got rejected everywhere but waitlisted at Columbia. And then I got in. So I moved to New York in 2001, basically a week before September 11th, and I truly fell apart. Not in a way that I regret at all now. I think that a lot of us, when we are not productive, feel like our time is wasted. And I don't think I wrote a word that entire year. Like, I got really depressed and I just spent a lot of time wandering the city and I ate a lot of bagels, but I was really sad. I spent a lot of time downtown, like, looking at the faces of all these people who had died. And it was so unfathomable to me. And I wasn't able to use writing to cope with it as I might be able to now. I think I was just too young. And I had challenges with my writing professor who sort of felt like we shouldn't be writing about that.

And so I ran away from writing. I mean, I dropped out of creative writing school and went to medical school, and that was clearly the right move. More than anything in my life, I love being a doctor, so I don't regret that at all. And I think it actually was really helpful to me to recognize that I'm not cut out to just be a writer. I need to be inside people's lives, and there's no better way to do that than as a physician. And writing is this extra bonus that I have still that helps me just like it did when I was writing fiction, sort of try to understand the world. But I don't think I could function if I didn't get to take care of patients. And that became clear when I was 22 years old, essentially.

Dave Johnson: So, Lisa, you did this fellowship at the New England Journal of Medicine. Can you tell us about that? What was that like? And how much influence did that have in your current position?

Pat Loehrer: It was awesome on so many levels. I think the first was that I really loved listening to people talk about science. That was new for me. And the rigor of the conversations at The Journal is really just hard to describe, and I just felt like I was like a kid in a candy shop. I'm interested in science, obviously, as a practicing physician, but I'm interested in science always in these meta ways. I'm interested in how we communicate science and the words we use and the conflicts that we focus on and those that we don't. And so much was always going on in my mind. ‘I was like, oh, my God, these are the data that are going to shape our practice. And then you have, like, a bunch of humans making these decisions.’ And so that was inherently fascinating to me.

And the other thing that was really transformative was just sort of watching Jeff Drazen, who was the editor in chief at the time, and just how he led was so amazing to me. And I still think about it because, you know, in an ideal environment, I mean, people study this their whole lives, you know, organizational psychology and things like that. But, you know, to create a work environment where you can have, like, all these brilliant people sort of have a conversation and argue with each other and still come out friends was really remarkable to me. I don't think I could ever tell you what the recipe for that is, but I loved watching Jeff do his thing.

And then, of course, on the most personal level, it was eleven years after I had tried and failed to be a writer in New York and all of a sudden I had medical training under my belt and I had a lot I wanted to say and I was capable in a way that I wasn't before of spending my days writing. So it turned out that I was able to structure my time and not just fall into a deep depression. So that was really important to me in terms of shaping my ambition. I still didn't believe that it was possible to have a job as a doctor and a writer until I was actually offered that job. But at least I knew that I loved it as much as I ever had.

They published what I wrote, and it's hard to describe, like, how that changes you in terms of realizing that, like, anybody might care what you had to say. You know, my experience until then had been writing this stuff with my grandfather, which was so inherently meaningful, but I could never get it published. I mean, the piece that I think that I'm still most proud of is what I ultimately wrote about my grandfather and this book project and it's called ‘The Art of Doing Nothing.’

I had a knee injury at the time, and I was in med school, and I couldn't get the doctor to do anything about it. And I was really compromised. I couldn't walk, and I was going into internship. And the prospect that I wasn't going to be able to do what I needed to do as an intern was just so terrifying to me. And so it sort of goes back and forth between that experience and my grandfather's ambition for us to fix medicine and his sense that something so fundamental had been lost. And it ends—I'm going to start crying when I talk about this—it ends with his death and how I wasn't planning to speak at his funeral, but then I just remembered this sense of something pushed me to walk onto the pulpit after all the other eulogies had been given. And I remember feeling the sense like, ‘Okay, he spent the last seven years wanting me to tell these stories, and I'm never going to be able to convey what he means or the point of his stories. And I could never describe the way he touched people's lives.’ And I just remember when I was standing up there, I looked out and there were hundreds of people, patients, their children, who had just come to celebrate his life. And then this feeling that I didn't have to say anything because everybody already knew. So ‘The Art of Doing Nothing’ is this idea that we're so reliant now on all these things that we can do. And my sort of tension with my own doctor was wanting an MRI. And by the way, I completely believe in a lot of the things we can do. I don't see how you could spend a day in the hospital as a cardiologist and not feel some awe for advances in our technologies and what they can do for patients. But I do think a lot of it has come at the expense of our humanity, not by the fault of any physicians, but in a system that just doesn't allow us to give people our time, our attention, or make them feel how much we care about them.

And so I think for me, the idea that my grandfather practiced at a time where he didn't have an MRI machine and he couldn't revascularize—I mean, he was a rheumatologist, but at that time, he would see patients having MI’s and he did house calls and all these things, but that he could give them his love, for lack of a better word—it's a different type of love, but the love that we can give to patients, and that so many people then remembered him and showed up for him.

Pat Loehrer: If I can speak on behalf of your grandfather, if he was here, he would say that you have honored him.

Dave Johnson:Yeah, for sure.

Dr. Lisa Rosenbaum: That's very kind.

Dave Johnson: Lisa, you write about so many different things. They're all wonderful. I really appreciate your willingness to bear your soul, so to speak. And speaking of soul, one of my favorite pieces that you wrote was I think it was ‘Heart and Sole’, where you talked about-

Dr. Lisa Rosenbaum: -broke my feet?

Dave Johnson: Yeah, your feet. That was great. You, in a sense, mentioned your father. And your father is also a Rheumatologist, actually, your father gave a grand rounds here about seven or eight years ago that was one of the best lectures I've ever heard on uveitis.

Dr. Lisa Rosenbaum: No, my dad is also huge. I've talked about my mom. I've talked about my grandfather. My dad is a huge part of my life, too. I just love him a whole lot.

Dave Johnson: Well, that came through in the article about your feet. What I wanted to ask you is obviously a lot of your ideas for writing come from personal experience, but you've also written about things like conflict of interest. You wrote a three-piece article in The New England Journal that actually generated some interesting conversation in the letters to the editor, including from former editors of The New England Journal. I wonder how you come upon these ideas. I mean, what prompts you to write about a particular topic?

Pat Loehrer: The two things in my life that like, drive my writing. I mean, I'm not talking about medicine specifically, but I'm extremely emotional. I feel things very intensely, and I think because of that, I've always been interested in the way emotions affect reason, because it's been clear to me for a long time that my emotions could get in the way of my ability to make good decisions. So then I became very interested in sort of the nature of how we make decisions and the role emotion plays in that. And so conflicts of interest were, like, the perfect example of this, both at a very individual level of the way emotion shapes reasoning, but also I'm very interested in sociology, how humans affect one another's perceptions. And I think that series was published in 2015, so it was sort of a little bit before social media became so much more pervasive in our lives, but this idea of sort of collective pile-ons and canceling people that hadn't picked up as much.

But I was very interested in this tension between advancing care and how that had gotten lost in this sort of desire to vilify people who worked with industry, because it just seemed very obvious to me that we needed that. And I was perplexed as to why we sort of seized on this one aspect of bias when so many biases shape how we behave. And again, that goes back to the fact that I spend my entire life thinking about what is biasing my own behavior. And so I remember very clearly, and I tell this story in the series, in the second essay, how I used to get called when I was a cardiology fellow about transfers from other hospitals overnight and whether or not they should give TPA en route, because if you wait too long to revascularize them, at that time, people were getting TPA. I've only ever worked at a hospital where people get revascularized, so we don't really do it a lot. But anyway, I remember being so tired and so wanting to not go in that I would feel inclined to say, just give TPA, even though it would be better for the patient to get revascularized. And if they would get revascularized, it meant that I would be up all night, because after they would have, like, a sheath, and I would have to pull the sheath, and it was over. And so I remember thinking, like, ‘I'm making a decision out of, like, fatigue and laziness.’ I mean, I didn't actually make decisions this way, but I remember how powerful those forces were in shaping my medical advice. And we all know when we practice in these busy hospitals that so many of our interactions are not about what the science says to do. There are other factors that come into play that are deeply embedded in sort of the sociology of medicine or people's feelings about one another or themselves. And so conflicts of interest was just like, at the nexus of all these things that fascinate me.

And then the third one was about sort of moral outrage. And again, this was before our politics were as polarized as they are today, for instance. But this idea that when you feel moral outrage, that you lose the ability to weigh trade-offs was extremely interesting to me because, again, it seemed to be at the crux of what was happening in sort of our ability as a profession to talk about how to optimize our relationships with industry so that we could get our patients the best treatments. And that instead of vilifying scientists who either had unique expertise that could be shared with companies to develop treatments, or who were on FDA panels because they were the ones who knew the most, it just seemed to me kind of strange that we weren't able to have those conversations.

And then when you mentioned all the blowback, I mean, that was the first time in my career, and I've since experienced it again and again. But that felt to me very much part of the problem in the first place, that that like, just saying that this was more nuanced than we were recognizing, you know, generated a lot of anger, and I was, like, totally okay with that, because it it was why I wrote it in the first place. And if I felt that in 2015, I feel that even more now, which is essentially you cannot write about anything interesting anymore without risking being canceled. Like, it's just things are so volatile, and everything I write, I think this might be the end of me. And you sometimes can't predict what is going to enrage people, but it feels, speaking of trade-offs, like a worthwhile trade-off for me because I could write what I know everybody wants to hear, or what they already know, and there's clearly a market for that. But that is so boring to me. And I don't learn anything, and I don't think readers learn anything, so that just doesn't feel like my role in this universe.

Dave Johnson: When do you find time to read?

Dr. Lisa Rosenbaum: I read like, every night, every afternoon. I mean, I'm constantly reading or listening to podcasts and thinking about what I'm writing, or I'm interviewing people. I read like, all the time.

Pat Loehrer: What are you reading now that you would recommend it?

Dr. Lisa Rosenbaum: The best books that I've read recently were Tomorrow, and Tomorrow and Tomorrow by Gabrielle Zevin. I don't know if you've read it. It's actually my computer is literally sitting on the book. She also wrote a book that has some oncology relevance. It's called The Storied Life of AJ. Fikry, I think. I finished it the night before I was going on the consult service, and for some reason I wept. There's a cancer part of the story, so you'll see when you read it, I don't want to give it away. But it was one of those moments I think I'll remember forever, just because even though I'm saying all these things about caring about humanity, I still lose it sometimes. And the consult service can be really hard because this goes back to this whole bias thing, because you're just going as fast as you can. It's not because you don't care, it's because there are ten people also who need to be seen. And so you're triaging your time, but also your emotional bandwidth, and you walk into the room and you just hope that you don't get asked a lot of questions and that you can move quickly so you can go see the next consult. And so I finished this book, and I hope it's not giving me too much away. But anyway, someone in the book has cancer and isn't treated very well by the medical system. And so it was like the night before I was going on consults, and it stayed with me in the same way my grandfather stays with me. Just like, take a deep breath, the week will end and you never get a second chance to see these people. So do it right.

Pat Loehrer: I can't wait to read it. One of my residents, when I was an intern, I had a patient that died, and I was just really distraught, but she just quietly said that the beauty of medicine is that it has such a great joy, but it also has these downs, and that's unlike any other profession. And that's really what makes it such a marvelous profession, because of the feeling that you have.

You're a physician writer. Which physician writers do you think are the most meaningful? Or which ones do you admire the most?

Dr. Lisa Rosenbaum: I have to tell you, I teach a writing class.

Pat Loehrer: It's you.

Dr. Lisa Rosenbaum: For what?

Pat Loehrer: You're the one that you admire.

Dr. Lisa Rosenbaum: Oh, God, no. That wasn't what I was going to say. It's the opposite. So in the writing class, my editor of the journal and I teach a class to people, mostly to Brigham, but over the years, people from all over have started to join, and we do it on Zoom. And I have to say that there are some people in the class I just think are so talented. And what has struck me most about the experience beyond their talent, is just that physicians often just don't have an opportunity to get to write. And so I lucked out, like I really did. I lucked out in terms of having the opportunity to journal. I lucked out to grow up in a family that was just so loving toward me, telling me I could do whatever I wanted. But not everybody has that luck or privilege. And so to get to be in this writing workshop and see all these people who are just having their first chance to process what they've experienced and narrate it has been really awesome for me. And so they are not the people who are household names yet, but I have been struck by many of their talents. And also my editor and I taught one at Colorado this past summer, and there were some people who are just so equally talented.

So that said, I think Gawande is like a masterful storyteller. He's able to sort of narrate in a way that is so accessible to people, and I think that is a mark of genius. So I do find myself studying his work. I have to tell you that I read mostly fiction, so I don't read a ton of doctor writers anymore. I used to when I was, before I was more established as a doctor writer, and I would do it to study them. But now I just find myself wanting to either read about culture or some sort of nonfiction that is unrelated to medicine or just read pure fiction. I'm mostly interested in how people tell stories and develop characters, and I could think about that forever. It never stops.

Dave Johnson: What advice do you have, Lisa, for young physicians who may be contemplating a career with writing as a part of it? What advice do you have for them?

Dr. Lisa Rosenbaum: When you write, you have to expect to fail. And I think that one of the hardest things about being within the institution of medicine and trying to be a writer is that we have these metrics for success that we're all so accustomed to in terms of publications and putting things on our CV and also how those are valued in advancing our careers. And if you really want to write, if it's really important to you, you have to let all of that go. And again, if people meet me at this moment in my life, they don't realize that I had this chunk of time for seven to ten years where I was writing and writing and writing, and I wasn't publishing anything, and I was getting rejected all over. And I did it because it meant so much to me and it meant so much to my grandfather. But if it becomes this thing that is meant to, like, advance your career, I think first of all, it becomes much more frustrating, but also you take away what makes it so meaningful, and I think that ends up detracting from the writing itself because it's just like the purity of it goes away. So I think that's one thing I would say.

The other thing is if you want to write, you just have to write. There's no other way about it. It's not fun. I mean, I wish people could see how much of my writing gets thrown away. It's so bad. But if you think of it as an act of discovery, which it is, I never know what I'm going to say until I get there. Then you can sort of forgive yourself for all of that time wasted. But it's pretty empathetical to how we function as doctors. I mean, when I go into the hospital, it's like a switch flips in my brain. I move into this extremely efficient, concrete sort of way of existing, and it's just so different from the mode I'm in when I'm creating.

Dave Johnson: That's extremely helpful. Thank you for that Lisa.

We want to thank all of our listeners of Oncology, Etc. This is an ASCO educational podcast. This is where we will talk about oncology medicine and beyond. So if you have an idea for a topic or a guest you would like us to interview, please email us at education@asco.org. To stay up to date with the latest episodes and explore other educational content, please visit education.asco.org. Thanks again.

Pat Loehrer: Hey, Dave, I got something for you.

Dave Johnson: A present?

Pat Loehrer: No. A question for you. Which knight of King Arthur invented the roundtable? Sir Cumference. Doesn't get any better than that.

Dave Johnson: No, the snail joke was better.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of Asco. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Advanced practice providers (APPs) are a key component to effective team-based care, but what is it that our APP team-members can do in an oncology practice? Join the Co-hosts of the APP podcast series, Todd Pickard (MD Anderson Cancer Center) and Stephanie Williams (Northwestern University Feinberg School of Medicine), along with guests Wendy Vogel (BroadcastMed/APSHO)) and Tammy Triglianos (University of North Carolina Basnight Cancer Hospital), as they highlight the services and examples of what APPs in oncology can do, their role as an APP in team-based care, if and how they bill for their services, and how they are reimbursed.

Speaker Disclosures: Stephanie Williams: Consultant or Advisory Role – CVS Caremark Tammy Triglianos: Consulting or Advisory Role – Pfizer Todd Pickard: No relationships to disclose Wendy Vogel: No relationships to disclose

Resources: Podcast: Advanced Practice Providers - APPs 101: What and Who Are Advanced Practice Providers (APPs)? Podcast: Advanced Practice Providers – An APP’s Scope of Practice Advanced Practice Providers - APPs 101: Physicians Assistants (PAs) and Advanced Practice Registered Nurses (APRNS) in Oncology

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

The disclosures for guests on this podcast can be found in the show notes.

Dr. Stephanie Williams: Hello, everyone, and welcome back to the ASCO Education podcast, and our fourth episode of the Advanced Practice Providers series. I'm Dr. Stephanie Williams, a medical oncologist, and your co-host for the series, along with physician assistant Todd Pickard. We’d also like to introduce you to our guest panelists today. Returning guest, Wendy Vogel, along with Tammy Triglianos. We’ll take a moment to let them introduce themselves, starting with Wendy.

Wendy Vogel: Hi. Thanks so much for having me today. I'm Wendy Vogel. I'm an oncology nurse practitioner by trade, and I am the Executive Director of APSHO, the Advanced Practitioner Society for Hematology and Oncology. And thanks for having me here today. I'm really excited to be here.

Dr. Stephanie Williams: Tammy.

Tammy Triglianos: Hi, everyone. Thank you for having me. And I'm excited to join this group for our conversation today. I'm Tammy Triglianos. I am a certified oncology nurse practitioner practicing in North Carolina. My career has been dedicated to caring for oncology patients, even starting out as a nursing assistant and then as a registered nurse practicing in a variety of settings. I've been a nurse practitioner for almost 20 years now, with the past 15 specializing in GI medical oncology.

Dr. Stephanie Williams: Thank you.

Todd Pickard: Thanks, everybody, for being here today.

Dr. Stephanie Williams: In today's episode, we will be highlighting the services and examples of what advanced practice providers in oncology can do and describing if and how they bill for their services and how they are reimbursed.

So let's get started. Wendy and Tammy, I'm starting in my clinic, 8:30 in the morning. We have a full panel of patients, patients who just need reassessment, chemotherapy prescribed, reevaluation, bone marrow biopsies, test results. How do we work together to see, as a team, these particular patients, or in other words, what can you do to help me through my days as an oncology practitioner?

Wendy Vogel: Wow, that’s a great question to just jump right in and start with. I’m excited to talk about that. Well, I think that, you know, as we always are talking about our team approach, we would look at that schedule. And hopefully, the AP and you have their own schedule so that we're able to divide and conquer and be able to accomplish that schedule, see all the patients in the most efficient manner possible. Hopefully, I've looked at all my patients beforehand and see if there's anything that I need to collaborate with you on. Looking at our labs, you know, maybe scans, talking about any changes in plans that we might anticipate together, and so on.

Tammy, would you do the same?

Tammy Triglianos: Yeah, I’d like to echo your point, Wendy. Having independent schedules, I think, makes for a more efficient workflow in the clinic. And in my practice we have a team meeting with our clinical pharmacist, physician, myself, and our nurse navigator, and review last week’s and even prep for the upcoming week, trying to anticipate and make sure people are set up and orders are in, and we're prepared for the week to come. Day of, as you know, can get pretty hectic. But since we've done a lot of that prep work, I think it makes for the unknowns that pop up in clinic easier to connect with each other, with my physician and other team members.

Todd Pickard: I agree. I think the great thing about how physicians and APPs work in teams is that the team can decide what's best. I have done everything from having my own independent template so that I have patients that I'm responsible for to a general template where the physician and I just divide and conquer at the beginning of clinic, and we say, “Okay, you see these patients, I'll see these patients, and we'll back each other up if we need to.” All the way to seeing every single patient along with the physician when we are seeing a lot of news and consults, very complex, very acutely ill patients. And we basically just work as a team the entire day on everything.

So it's really interesting about the conversation that I think we'll end up doing today is the “what” versus “how.” What APPs do is– really, honestly, APPs can do anything and everything unless a state scope of practice or an institution's policy specifically says they can't. That's the good news is that we pretty much can do everything but the “how,” that's a really interesting question because a lot of different things come into play. Position preferences, which could be influenced by their own personal experience or their own personal preferences of style versus, you know, having a misunderstanding of what APPs can and can't do. Then there's the institutional policies and the state scope of practices that come into play. So I think this where we’ll end up spending some time today.

And, you know, Stephanie, maybe we could start the conversation with you a little bit around physician preferences and what your experience has been, and some of the things that you’ve noted around the physicians as part of this team.

Dr. Stephanie Williams: I’ve worked with APPs, both inpatient and outpatient, and I think it is very important to have that team-based approach. Patients really appreciate that, knowing that there is always a provider, someone there that they can turn to. And I think that’s one of the great things about APPs is they always seem to be there for patients to turn to and for our nurses to turn to, to get help too. Both our clinic nurses, our infusion nurses, and our inpatient nurses really appreciate having that extra clinical provider available to them. I think as a physician, during my day, what I would like to see is us getting through our panels of patients, whether we’re together, which is not as efficient as if we’re independently seeing patients, but also help with things like procedures that need to be done on patients, phone calls at the end of the day, peer-to-peer reviews in order to get either medications or tests done for our particular patients. Filling out forms, no one likes doing that. No one likes filling out disability forms or other insurance forms, but those are all things that we all need help with in terms of doing. Ordering consults, seeing new patients together. I work in the transplant field, so they’re complicated patients, so it actually is very helpful to have, to see a patient with your advanced practice provider so that you can come up with a treatment plan together that you know you can then follow throughout the course of hopefully that patient's treatment and recovery. Chemotherapy orders is another place that we need, that can be very valuable, whether it's the initial chemotherapy order, which were usually the physician or pharmacist initiated, but those follow-up chemotherapy appointments or problems in the infusion clinic are also helpful areas.

There are some physicians, though, who want to have an APP simply as their scribe, to follow them around in clinic and to then begin whatever orders they feel is appropriate for that particular patient. That is not the most efficient way to see patients, particularly when you have a large panel of patients that you have to see.

Wendy Vogel: Exactly. It really isn't. I will just tag off something you said about the AP being the scribe. That's probably one of the most expensive scribes that a physician could employ, and what a better use of our time is to not be a scribe. You know, there are other people who could really efficiently be a scribe better than the AP, and the AP could actually be seeing patients and gaining reimbursement for the practice.

Tammy Triglianos: An additional comment on team-based care. I work with a physician where we alternate visits, and I think that has really worked well in establishing a relationship with patients. We both have very high touch points with the patients, very involved, and patients feel like there's that team that's always available because always one of us is usually available.

Dr. Stephanie Williams: How long did it take you all, all three of you, to develop that relationship with your physician colleagues to work tightly in a team?

Todd Pickard: That's really a great question, Stephanie, because I think one of the strengths of the relationship is that level of trust and comfort and not really to view it as a hierarchical relationship, but really a team. We're there for each other. And you know, that depends, you know, there’s personalities involved, people’s previous experience, you know. If you've only had great experiences with APPs, probably trust them right away. If you've had difficult relationships with APPs or teams that didn't work well, it may take longer. I'd say the best approach is for both the APP and the physician to really look at this as, “How can we accomplish our work together that provides the best quality and the highest level of safety for our patients?” And really just set the expectations of ‘this is a trusting relationship where we work together, we support each other, and we're willing to talk about where the limits of our knowledge are. And for both of us, that's when we get consultations with other folks, and so we just approach it from this perspective.’ And of course, you know,over time, that just strengthens and grows. And when you have a really good, strong, trusting relationship, that's where the real power of the team comes into play.

Wendy Vogel: I like what you said about trusting. You know, the AP has to trust in the physician to be able to go and ask questions and to be mentored, and vice versa, too. I think we play to each other's strengths. If my strength is talking about hospice to a patient that needs to change trajectory of course, then maybe that's what I do better. And there are other things that another team member would do better, but feeling comfortable and saying, “You know, this is what I do good,” or, “Hey, I need help with this. I don't do this as well as I would like to.”

Dr. Stephanie Williams: Tammy, anything? You said you work with one physician. How did that develop?

Tammy Triglianos: Right now, that's my current setup because of volumes, but I have worked with a team of physicians as well, which, when you're an APP working with a team of three, four plus physicians, that can kind of get a little bit tricky, people fighting for your time. I think being in parallel clinics has helped establish our trusting relationship because all day long, you're with that person navigating care together. We've been together probably 14 years, so that's really dipping back into my memory bank of the beginning of our time together. But I think it's what Wendy was talking about is just approaching each other with questions or, “Hey, why did you do that?” Or “Help me understand this.” And I think our approach to each other wasn't, “Why did you do that?” But, “Help me understand your thoughts on this.” Or “Can I talk through this with you to make sure I'm on the right page.” And how that response came back, then I think that has helped develop a trusting relationship.

Dr. Stephanie Williams: You both bring up excellent points because there still exists that power gradient between the physician, the advanced practice provider, and a staff nurse or an infusion nurse. And it's really important to overcome that so that people are comfortable in terms of taking care of the patient, to give the patient the best possible care that there is.

Todd Pickard: Yeah, I mean, I think this is a great time to really just highlight the fact that there's a lot of misinformation and misunderstanding out there around APPs, what they can, what they can't do, what they will, what they won't do. In some corners, there's this fear that APPs will go rogue, and that will harm patients. And really, that is an irrational fear because when we are trained, we are trained very clearly about when you reach your own limits, that you are required and obligated as part of your professional practice to find that support, find those resources, get consultations, work with your team to understand so that you serve the patient. And I think it's really important that folks remember that with this respect and trust and accountability, because asking for help is not a failure. Asking for help shows a successful dynamic within a team so that the entirety of the team brings to bear their expertise, their knowledge, their skills, and their judgment. And when the team doesn't know what to do, that's when you’ve got to reach out to your consults and your other resources. So I think that's an important thing to remind everybody is that we're all here trying to do the same work, and it doesn't do any good if you spend a lot of time wondering, “What's Todd up to today?” So I think it's important to realize and for us to kind of dispel those kinds of myths.

Wendy Vogel: I think, despite a social media post by one of our well-known medical associations that will remain unnamed, we don't think that healthcare is a game. We are absolutely serious about this, and we love taking care of our oncology patients. This is something that we're trained to do and that we want to work together as a team. Great thoughts, Todd.

Dr. Stephanie Williams: In terms of actual practice in the states that you're at, are there any restrictions, either statewide, institution-wise, on what you can and can't do?

Tammy Triglianos: I think a big topic that comes up a lot is signing treatment plans or antineoplastic treatment plans. And I don't know across the states, but in my state, that is not a state restriction. But not allowing APPs to sign antineoplastic treatment plans is more of an institutional restriction, and that varies. Recently, I was able to work with a team of people to update our policy to allow APPs to sign antineoplastic treatment plans and how it works at my institution, they go through a privileging process, so essentially it's an opt-in privilege. So, APPs can obtain approval to sign treatment plans, and it is restricted to cycle two and after. So the treatment plan initiation and signing the first cycle is done by the physician, and APP can place the treatment plan and get it teed up. But it actually is signed by a physician for cycle one, and then an APP is now allowed to sign beyond cycle one. We have a few guidelines like they have to be in their subspecialty practice and be manipulating treatment plans that are cosigned by the physician initially and have certain subspecialty training. So, yeah, I'm excited about this update to allow APPs to practice to the top of their license.

Todd Pickard: Stephanie, this is such an important concept and one that we have hit upon in all of our podcasts. And really, the limits of APPs outside of physician preferences are really state laws and institutional policies. And so, the answer to your question is ‘yes, and it depends on where you are’. So, for example– Tammy gave an example of what's going on in her institution. In my institution, all chemotherapy plans must have a double signature, whether it's initiated by a physician or a pharmacist, or an APP, and that's a safety and quality check. And so everybody just needs to understand, again, limits generally are only in state laws and institutional policies rather than what APPs are trained to do or what folks will reimburse for. And so, really, that's where you have to do the most detailed examination is: what state are you in and what does your institution or your practice say?

Generally speaking, most states allow teams at the local level to kind of figure out what they want to do. Sometimes they'll limit a certain medication, like a schedule II drug or a certain other medication. Institutions sometimes do the same thing. But the good news is, if it's not explicit in state law, you can change institutional policy and physician preference all day long.

Wendy, what's your experience been?

Wendy Vogel: Oh, I totally agree. I think it's important for APs to know who's setting the institutional policies and for physicians to know this as well because it may be someone who is not familiar with what the AP role could really be. What do they know about the advanced practitioner? We mentioned that earlier. But I think it also brings up a very important gap that we've seen in oncology, is what's the training of the AP to be able to write anti-cancer therapy orders, and it's a wide variety. There are very few, for instance, nurse practitioner oncology certification or graduate programs. Most of us are trained in a generalist level as a family nurse practitioner. PAs, as you said before on this podcast, you are trained at a generalist level, and we get a lot of our specialty education on the job or through other advanced education. So we're coming into this at all different levels: brand new APs, brand new to oncology APs, and we've seen a gap at the educational level across the US is not the same.

One of the things that APSHO has done to relieve this, and I'm so excited to be able to share with you guys, is we've just recently launched the APSHO Cancer Therapy Prescribing Course. This, I think, will set the benchmark that we've just talked about and bridge this gap, and allow APs to really practice to the top of their licensure, as Tammy mentioned earlier. It's a very comprehensive online, self-paced course providing that advanced education to prescribe cancer therapies and to manage that hem/onc patient throughout the treatment trajectory. It does not just include the cancer therapies but other things we need to know as APs, like: what kind of drugs do we give with the cancer therapies, what are the standards of care, what do we do in clinical trials? And so just all this that we need to know, and I hope this will bridge that gap, if you will, for this education.

Dr. Stephanie Williams: Excellent points. I think it also requires physician education to know and understand what advanced practice providers can do. And I think an advantage to our younger generation physicians is that they are now growing up in institutions where APPs are normal, as opposed to older physicians like myself, where we really do have to learn what can be done and what can't be done so that we can trust what everyone is doing there.

Todd Pickard: Are we normal? Yes. But what you really mean is that we're present. It's really about interprofessional education, and I think there's a lot of importance of that concept. If we're going to be delivering care in teams, we should be trained in teams so that you grow up side by side and so that way it does seem normal. I'm working in a team; where's the social worker? Where's the APP? You know, where’s the pharmacist? Because that’s how you trained, and that’s how we really deliver care. That’s the honest truth. No man or no woman is an island in medicine. We all work in teams, whether we recognize that or not. And so I think it’s great when you hear about folks that are actually training side by side because it just dispels some of this anxiety, some of these misconceptions, and you’re just used to the team being around, and it’s like, “Okay, where’s my team?” And then it doesn’t become unusual. It’s just normal.

Wendy Vogel: Yeah, we’re all sitting here nodding our heads together. You all can’t see us, but we’re all nodding. So, Stephanie, I really want to know, how do you educate your colleagues who might not be as receptive to the idea of an advanced practitioner writing cancer therapy orders?

Dr. Stephanie Williams: I have to tell you, it’s difficult sometimes, Wendy, or it has been difficult in the past. The problem becomes not so much a “do you know what you're doing,” problem is how does the reimbursement - I hate to say this – how does reimbursement figure into all this? If I let an APP see half of my patients, who gets that money? And then the other thing is just how do I efficiently use an APP? And we are trying, and ASCO through the Clinical Practice Committee, to try to get out there and reach out to practices, particularly rural practices, to help them understand the role and the value of advanced practice providers. And I think it's going to be a reach-out effort, leading by example, showing people that this is the way we can do it and we have to do it this way because we need practitioners out there to take care of patients.

Todd Pickard: I want us to all pause here because what you just talked about is critically important. And we all know this is part of medicine, whether we like it or not. But reimbursement, how we get paid, and productivity, how we are recognized for what we do, are concepts that sometimes get mixed up. So when you're talking about reimbursement, APPs are reimbursed just like physicians for everything that we do. Depending on who's paying the bill, they may reduce that reimbursement. So CMS reduces generally to 85% of the physician fees. Medicaid is all over the place, depending on your state and the third-party payers, like the commercial insurance, that's based on whatever you've negotiated in your contract. Sometimes it's a little, and sometimes it's the same. So APPs get reimbursed, period. What level they get reimbursed compared to the physician’s reimbursement is really up to a lot of different factors.

But productivity, I think that's the thing that we really get hung up on is, well,who's going to get credit for this work? And guess what? The beauty of that is you get to decide. Every practice, every institution makes up those rules. And so, you know, the take-home message here is, don't confuse reimbursement with productivity. Reimbursement is a lot of external factors that are either statutory, or they're contractually negotiated. But productivity is an internal accounting, and you can use team-based metrics. Who's to stop you from saying ‘we reward and recognize both the physician and the APP in these teams.’ They both get credit, and they both get productivity measurements and recognition. And so I think that's where we really need to drive home the message is it's not about setting each other up as competitors. It's redesigning our internal productivity measures so that it's collaborative and that all the work that's being done by the entire team is being recognized and rewarded.

Wendy Vogel: A lot of what we do, as Stephanie referred to earlier, is not reimbursable. All those peer-to-peer reviews, we don't get paid for that. None of us do. Calling patients back, liaisoning with the nursing staff, and answering their questions through the triage line, so much of that is vital to supporting a practice, and you can't do it without all that, but it doesn't appear on the bean counter's metric sheet. So how do we do that? I don't have the answer to that.

Tammy Triglianos: Yeah, and I think in oncology/hematology, there's a lot of frequent touch points in between provider visits, and that doesn't equate to money, but equates to high-quality care, to have access to skilled providers to help manage all the complications, and, you know,in between stuff that happens between provider visits.

Dr. Stephanie Williams: Wendy, there have been changes now in terms of who can enroll and write treatment orders for patients on cancer clinical trials. Could you go over those changes with us and how APPs can now fully participate in this process?

Wendy Vogel: So there were some recent changes to CTEP and then now allowing APs to sign clinical trial orders. This is huge because it really makes the process of getting patients their drugs in the infusion suite much quicker. We don't have to track down a physician to sign those clinical trial orders. The AP can do that. And so this process is made much smoother. I think we'll see a lot of other cooperative groups and institutions follow suit with this. And I think this was a real demonstration of the AP's quality of care and the safety of AP prescribing and being able to have this privilege.

Todd Pickard: Well, this has been a fascinating conversation today, and I would like everybody to have a final say. What’s your take-home message today about what APPs can and can't do. And Tammy, we'll start with you.

Tammy Triglianos: Thank you. This was a great conversation today. Happy to be a part of it. Know that APPs with supportive, appropriate training, and, you know, I just have to shout out to Wendy and APSHO for the chemo prescribing course. I think this is huge for bridging a gap. Lots of education programs don't have oncology subspecialty, and this is such a comprehensive course that bridges a gap that I think will be huge. And I hope every oncology cancer center adopts, incorporating this to elevate the education and offer some subspecialty education to our oncology APPs. Kudos for all the team-based care and physician and APP teams out there that are really working hard to care for our cancer patients.

Todd Pickard: Wendy, what are some of your final thoughts?

Wendy Vogel: I have to agree with Tammy. I'm really excited about the APSHO Cancer Therapy Prescribing Course. I think that we can, together as a team, really make a difference in cancer care, playing to each other's strengths, and I think that would be my takeaway is: how can we better play to each other's strengths?

Todd Pickard: Stephanie, what about some of your final thoughts?

Dr. Stephanie Williams: I think working with APPs is critical to the success of any medical practice and to any physician who takes care of patients.

Todd Pickard: Well, I appreciate all the insights. And just as a reminder, APPs and physicians, generally speaking, can decide whatever they want that is best for the practice, best for their patients, and delivers high-quality and safe care. Just be aware of your state regulations and find those institutional policies that are holding you back. Good news on the institutional policies - you can change them just like you can change your productivity metrics and models. So the good word is APPs and physicians can work in amazing teams, and we have all the power at our disposal to do so.

Well, I want to thank you to my co-host, Dr. Williams, along with Wendy and Tammy, for joining our discussion today and sharing all of your experience and highlights into the services that APPs can deliver. It's clear that APPs and physicians working together in teams are vital to a strong and efficient delivery of our team-based care.

Well, until our next episode, thanks, everybody, and take care.

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"Various places on the globe lack the proper knowledge, infrastructure and workforce to adequately treat cancer. In Africa, one doctor is focusing her efforts to change all that. This ASCO Education podcast spotlights Dr. Miriam Mutebi, the first female breast surgeon in Kenya. One of Dr. Mutebi’s goals is to improve women’s health and cancer care in Africa and includes attaining her pilot’s license to reach remote areas of the continent. Dr. Mutebi reflects on her life growing up in Kenya (1:21) and her inspiration for getting into medicine and pursuing what was at the time a male-dominated specialty (5:07). She also details how cancer care has improved in Kenya in the last decade (12:49) while there are ongoing challenges of working in low-resource settings (23:25). Speaker Disclosures Dr. Miriam Mutebi: None Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Resources: ASCO Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan (Part 1) ASCO Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan (Part 2) If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Welcome to Oncology, Etc. an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University.

Dave Johnson: And I'm Dave Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas. Pat, we have a terrific guest today that ties in very nicely with your interest in global health. I'd love for you to introduce her.

Pat Loehrer: Thanks, Dave. Battling cancer is truly a global effort, both in research and in treatment. However, there are various degrees of quality in these fields, depending on the economic health of a particular region. Our next guest is trying to optimize cancer care in Africa. We're very excited to talk to her. Dr. Miriam Mutebi is one of the most prominent cancer doctors in Africa. Dr. Mutebi is the first female breast surgeon in Kenya, and she's currently assistant professor in the Department of Surgery at the Aga Khan University in Nairobi, Kenya. She's on the board of directors for the Union of the International Cancer Control. She has trained and studied at top hospitals in New York and South Africa. Dr. Mutebi is so focused on increasing women's health in Africa that she's trained to be an airplane pilot in order to connect with hard-to-reach areas.

Disclosures for this podcast are listed on the podcast page.

Thank you so much, Dr. Mutebi, for joining us from Kenya. Can you start off by telling us a little bit about what it was like growing up there?

Dr. Miriam Mutebi: I grew up in Nairobi, which is a pretty urban setting to grow up in. So, most of my childhood was spent…I think it was probably a much simpler time where, you know, you would play in the street, go off to somebody's house, spend the rest of the day there and come back at the end of the day. But in terms of growing up, I think I was one of those super nerdy kids, for want of a better word. One of the sorts of things that got me interested in reading and learning and challenging myself was actually my dad. Because what would happen was we had to go to school, I would say almost about 30 kilometers bus ride, and my dad would be like, “Well, if you're on the bus for that long, you can as well, you know, carry a book and made it nice and exciting.” So I remember sort of discovering the library at my primary school and going like, “My word!” Because you get access to all these different experiences and worlds. I mean, you're going in and reading, you know, The Chronicles of Narnia, you're reading about Enid Blyton and different experiences, you're reading all these different worlds and getting to, you know, identify to some extent with the core values that exist. It doesn't matter where the books were centered. And so that for me was an almost, I would say, idyllic growing up, because for me it was like, “Yes, books, check; running around, check.” That's, I think, what I remember most about my childhood.

Dave Johnson: It sounds like your father was a powerful influence in your youth. Can you tell us more about your father?

Dr. Miriam Mutebi: Sure. My dad, how old is he now? He's going to turn 74. One of the things that he always says, “It costs you nothing to be kind.” And so he would generally– Sorry, I'm just going to stop a little bit. I'm getting weepy.

Dave Johnson: I'm sorry.

Dr. Miriam Mutebi: It’s okay, it's okay. Shame. Dave, you pushed the button.

Dave Johnson: It's not our intent to push a button. It sounds like your dad's a wonderful person.

Dr. Miriam Mutebi: No, it's fine.

Pat Loehrer: Both Dave and I have daughters, and we feel the same way. So as weepy as you're getting, I can guarantee you that he's going to feel the same way on the other end.

Dr. Miriam Mutebi: No, it's just that he hasn't been well recently, so it’s just–

Dave Johnson: Oh, I’m sorry.

Dr. Miriam Mutebi: Yeah. Okay, cool. Let me see if I can stop getting a little weepy. Yeah. So one of the things that he frequently says is that it costs you nothing to be kind, and I think that's one of the things that he sort of instilled in us that you need to think beyond yourself. You always need to sort of think about what is the other person going through and how can I help to make it better. Now, my dad, he has a really interesting sense of humor. I think it's where I get my cheesy humor from as well. But he always talks about what we call the 11th commandment, which is, don't take yourself too seriously. And so I think that was part of the grounding steps that he sort of helped to instill in us because he was working– I mean, sort of looking back, our parents, I would say, got married at a very young age and had several kids that they were raising. And sort of looking back, you're thinking they were probably just doing the best that they can, right? But I think he did a fairly decent job, I hope.

Dave Johnson: So, Miriam, when did your interest in medicine begin, and who was the inspiration for that? Or if there was someone that inspired that?

Dr. Miriam Mutebi: At the end of high school, I remember I wanted to do five or, rather, was it six different things. And so I wanted to do medicine, I wanted to write, I wanted to do architecture, I wanted to do law, I even forget what the other things were. There was like two other things on my to-do list. And I think part of the genesis of that was because, as part of the high school training that we go through, we had to do the international sort of baccalaureate, and what that entails is we have to do components of creativity, action, and service. And so at the end, I'm like holding back to father dearest, and I'm like, “Dad, I have six different things I want to do, and I don't really know about.” And he was like, “So why don't you spend a bit of time, sort of just going through each of those, like shadowing these different specialties?” And so we managed to track down his lawyer friend, spent time in the hospital, spent time in the pharmacy, just shadowing the pharmacist. I actually went to work briefly for a publication house. Eventually– Oh, yes, in architecture as well.

So then I managed to narrow it down to, “Yes, okay, I want to do medicine, and I want to write.” And so I went back to my dad and said, “Dad, okay, I have two things I want to do.” And my dad was like, “Well, if you do medicine, you can write. But if you write, then you might not necessarily be able to do medicine.” So that's how I sort of wandered into medicine. Although I still say there's still the great African novel waiting to get out. But again, with medicine, I think I'm guilty of what we call ‘end of rotationitis’, where at the end of the day, you finish a rotation, and you're like, “I can do this. I can do this.” So I think going through different rotations– I think for me, the drive– Well, the slow narrowing down to surgery was really around, unfortunately, the time when we were doing our rotations, and this was just really at the start of the 2000s in Kenya. And the challenge around that time was we're really just at the tail end of the HIV epidemic, and not everyone had access to antiretrovirals. And it was an incredibly harrowing time, I would say, for the healthcare profession, just because there was still a lot of stigma around HIV. And what was happening was that we would go to the wards and find patients had been abandoned. And there was a general sort of pervasive sense of hopelessness because people didn’t have access to the medication, they’d been abandoned, and unfortunately, not much was being done in terms of active management to patients.

Whereas then that was like on the 7th floor, and then you would go four floors down to the surgical ward where patients come in, they’re bleeding; you take them to OR, they get better, you send them home. And so, for me, the timing was like, “I need to do this. At least I could see where I was making an impact.” And so that’s sort of how I wandered into surgery. And I’m sure, as I said, with, of course, the developments now, the experience, of course, for medical rotations, they're entirely different, but that’s how I sort of ended up in surgery.

But then, how I sort of found myself in breast surgery was actually because– for me, what stood out about my breast rotation was really looking at what we were reading in the textbooks, which was breast cancers, the disease of the sixth and seventh decade and a “poster child” for this is the elderly nun who’s never had any children, who’s had this prolonged [inaudible]. And I’m sitting there and looking at the clinic, and I’m like, “These patients are in their 30’s and 40’s. All of these traditionally protected factors, like having multiple children, having breastfed, ticking all the boxes, but they're still coming in with these kinds of cancers.” And so just thinking this is totally different from what the textbook is saying, and somebody needs to get to the bottom of this, and that’s how I found myself going in along breast cancer surgery and also research into women’s cancers and things.

Pat Loehrer: My sense is that Kenya and many African nations were male-dominated. I don't know what it was like for you going to medical school, but particularly in surgery, it tends to be a male-dominated field. What was that like as a woman? In many ways, I think you were breaking some glass ceilings. I'm sure other women are doing similar things, but tell me a little bit about that experience.

Dr. Miriam Mutebi: I would say bewildering for both parties. Because we had to do several interviews just in different institutions before getting into a surgical residency, and I remember these senior professors sort of peering down their glasses and looking frankly bewildered and asking the most bizarre of questions, which I don't think anyone would sort of get away with in this day and age. I remember somebody asked me, and this one always stands out in my mind because somebody asked me on the interview route, “So what happens if you get a patient in ICU and you start to cry?” I'm like, “Well, first of all, I'm guessing that I am crying because I'm having a bit of empathy for the patient. And I think that actually probably makes me a better clinician because I am really truly seeing the patient rather than bed X with diagnosis Z. This is like Mary, mother of one, two, three, and whatever.” But it was really bizarre. Then somebody asked me as well, “Okay, so what happens when you're on call, and you have to breastfeed?” And I'm like, “Well, let's see. This is a tough one.” You could tell as well that they were really out of their depth.

So, eventually I settled on the Aga Khan just because, in terms of the faculty and the interviews, I got a sense that they were a little more open to the idea. And that's because I think one of my earlier mentors, Prof. Raja, who is our former chair of surgery, had come in from the Aga Khan in Pakistan. And for him, it wasn't anything unusual to see women in surgery. So, like, “Yeah, come along. We'll train you and stuff.” And he was also pretty inspiring in terms of the decision to get into surgery because, for him, their approach to at least surgical training– and we always tease him and say, we all drunk the Kool-Aid because we kind of came back. Because it wasn't about just training surgeons for surgery's sake, it's about how do we become leaders, how do you impact care in your region. And so it was never about just learning surgery; it's how do you use the tools that you have in order to improve the health of those around you.

In the Aga Khan, you're sort of, one would say, in a position of privilege. Just the backstory to those listening who might not know about the Aga Khan, it's a private university hospital. But I mean, as a private center, then, of course, I would say there isn't any difference, one would say, between the Aga Khan and most of the international hospitals anywhere in the world. But it was always sort of driven into us that this is a privilege that you're having. And how do you use this privilege to elevate the communities around you?

Pat Loehrer: Let's talk about breast cancer, if you will, in Kenya. You mentioned it that when you first went into it, patients were coming in with advanced disease, they still do. But how has the field of medicine changed in Kenya during your professional lifetime as it pertains to breast cancer?

Dr. Miriam Mutebi: While we still have the majority of patients diagnosed with advanced disease, the scenario ten years ago was that patients would get diagnosed with advanced disease and frequently would not complete their care. And if we did a deeper dive into the reasons behind this, we saw a constellation of factors. One being the fact that patients were having to pay out of pocket, resulting in financial toxicity, catastrophic health expenditure. And then the other major barrier was the health system itself. And again, to some extent, that still exists where we know, at least on average in sub-Saharan Africa, patients are going to see 4 to 6 healthcare providers before a definitive diagnosis of their cancer is made, which of course, again, translates into delays in ultimate treatment.

Another area that we frequently don't necessarily talk about as much are the social-cultural barriers that exist and, to some extent, are still pervasive in some communities. What we see is, one, there’s a lot of use of alternative therapies. There is still quite a bit of stigma around cancers. There is what we call collectivism, where we always say in Africa, ‘our community is our strength’. But sometimes, that sense of community is a double-edged sword because then, if the patient is losing agency, then that becomes a real concern. Because what we find, for instance– I’ll give you an example, I'll have a patient come in and discuss, and maybe she has early cancer, and discuss the options of having breast conservation versus a mastectomy. And then you will find maybe she goes home to have a think, and then a couple of days or whatever later, there's a community gathering, and the clan elder is saying, “We have decided.” And I’m like, “Who’s we? That’s not your breast coming off. Like, what right do you have to decide on patient decision-making?”

But you see, as much as we would like to sort of say have the patients have autonomy over the decision-making, it's really a question of equity and access to care. Because even if you're giving the patient autonomy, and she’s saying at the end of the day, “Well, they’re the ones paying for the treatment so let them decide what it is I’m going to have”, then we haven’t really adequately empowered our women. And so those are some of the challenges that existed, I would say, about ten years ago. We’re definitely seeing an improvement. One in the patient’s ability to pay, and this, I think, has been a concerted effort by the government to come up with a National Health Insurance Fund, which initially wasn’t covering cancer care but has definitely helped to ensure that the number of patients who actually complete their care or going through their entire cancer journey are probably more.

I remember when I was doing my internship, there were like truly heartbreaking because, as interns, we would have the medical internists sometimes– and because there weren’t that many medical oncologists– prescribe the chemotherapy and as interns, we were the ones who would administer the chemotherapy. And so, you would have a patient come in and it involves– Basically, we give the prescriptions like chemotherapy, but they’ll also have to buy their own saline, the IV line, and everything else,,, and then they get the first cycle, and they just disappear. And then those were the times when mobile phones weren’t that common. They literally just disappear. But then they come back six months later, and they’re like super excited, and they’re like, “Doc, we’ve raised enough money for the next cycle.” And we’re like, “Well, it doesn’t quite work like that.”

So, with the National Hospital Insurance Fund, it’s not perfect, but we definitely see more patients going through the entire care continuum, which is gratifying. I’m sort of putting on my [inadudible] hat as the chair of Kenya Society for Hematology and Oncology, and we’ve been working closely with the National Cancer Control Program, really to advise the National Hospital Insurance Fund on maybe getting more comprehensive covers. Because what was happening initially was, for instance, they would cover maybe four cycles of chemotherapy. Then the patient has to come up with the remaining four, for instance, and sometimes if they’re not able to afford that, then you’re sort of giving them the side effects without the therapeutic benefits of some of these. So they are currently in the process of really looking more at treatment plans, and that’s also been, at least, a truly– And the fact that they are willing to listen has also at least been a huge stride.

And then, of course, in terms of the real efforts, I would say by the National Cancer Control Program to ensure some of the decentralization of cancer services. Initially, we had only one radiotherapy center at the tertiary referral hospital in Nairobi that was having patients traveling from across the country, 400 kilometers or more, coming in. And you come in from a rural area, you come into Kenyatta and somebody tells you have to live there for a month, you have no family, nowhere to stay. People say, “You know what? I don’t need to have this stage or rather have this additional treatment.”

And so with the deliberate development of or decentralization of the radiotherapy services, we now have at least regional centers in planning and so really looking at how do we bring the services closer to people. And so, we now have, in addition to the tertiary referral centers, we now have two regional centers in Mombasa and in–

Pat Loehrer: Eldoret.

Dr. Miriam Mutebi: Yes. I think beyond Nairobi, Eldoret, we now have a comprehensive center in Mombasa. Nakuru’s just launched a comprehensive center and Garissa as well, so really looking at enhancing our capability to bring these services closer. And there has also been the development of the chemotherapy units across the country that have at least tried to ensure that these services are more readily accessible to populations. And really just underpinning that with the support from the National Hospital Insurance Fund has helped to basically have more patients completing their care.

One of the other things that I think deserves particular mention is really the grassroots advocacy that has really tried to increase awareness around cancers. And as a result, we definitely are seeing, as much as we are saying the majority of patients are still diagnosed with advanced disease, we are definitely seeing the entire continuum all the way from screen-detected tumors, early stage I, stage II cancers to more advanced tumors. So with that, it also really shows that there is a continuing consciousness that’s really sort of driving these education efforts and awareness in the community. Of course, we definitely do need to do more because we still see that the advocacy’s efforts sometimes tend to center largely around urban areas. And also, the question is how do we then sort of percolate that down to more rural areas? It’s definitely something that’s improved in the last ten years.

And then, of course, we’ve also seen an expansion in the cancer workforce. And that, I think, has also been largely driven by the fact that we’re having in-country training for clinical oncology, medical oncology, gyne-oncology, so we’re really thinking about how to expand the workforce but– Of course, we are still looking at the patient-to-population ratios, those are still pretty low and we still recognize that there are deficits along the care continuum. But we’re now having pharmaco-oncologists, we are having psycho-oncologists, increase in palliative care specialists. So there’s definitely been an exponential growth of all the cadres of healthcare providers, whether it’s oncology nurses and things. We’ve had an oncology nursing chapter now that’s been developed. We really see the rise of the professional societies like the Kenya Society of Hematology and Oncology, and there is a lot of crosstalk between the academic institutions that are running the oncology training programs.

So it’s really a positive move in the right direction, but I think what needs to happen is, as I would say, more deliberate investment in the workforce. Because, again, even as we increase the spectrum of the oncology workforce, there’s really a need to carry along the primary care providers because they invariably are the gatekeepers to access. And so unless the primary care providers are empowered and knowledgeable to facilitate early and timely diagnosis and referrals to the appropriate pathways, then it doesn’t matter how many people or how much of a workforce you have on top of the pyramid. It just means you’re invariably going to be still getting patients diagnosed at later stages. And so there’s also been efforts around that to come up with, from healthcare provider courses to educating common signs and symptoms. This is something that the Kenya Society of Hematology and Oncology has been doing in collaboration with the National Cancer Control Program. There’s a deliberate effort to come up with an online platform that are actually able to give real-time information to primary care providers. And so, I would say there are definitely steps in the right direction, but there definitely needs to be more investment in the entire spectrum of care.

Dave Johnson: Miriam, what you've done is astonishing. What you've just described is an amazing infrastructure in a relatively short period of time. What you're talking about took us in the United States half a century. You're trying to do that in a matter of five to ten years.

You've trained in both Kenya and in the United States. I wonder if you might just take a few moments to compare and contrast those experiences.

Dr. Miriam Mutebi: In terms of working in different spaces and sort of working in the US, working in South Africa, working in Kenya, what you realize is perhaps a very different patient profile. Whereas in countries like the US, where you have vibrant screening programs, and you're definitely having a lot more discussions around 4-millimeter, 5-millimeter tumors that you are doing an MRI-guided biopsy for and maybe a lot more screen-detected tumors. Whereas working in settings, especially when you get out of the urban areas, whether it's in Kenya or South Africa, you find that you tend to have a lot more diagnoses of patients coming in with fungating tumors and advanced disease, and so it's really that spectrum. And that's what I'm saying in terms of the current state of flux that we're in. We're now, as clinicians, at least working in Nairobi, you're sort of seeing the entire spectrum and much less and less of the sort of fungating tumors.

So I think in terms of the principles, and the good thing is that irrespective of where you are, principles do not change. But I think you sort of have to rapidly innovate and iterate in settings where you may not necessarily have a say, MRI to do an MRI-guided biopsy, but you also sort of look at what makes sense for the patient. Working in lower-resource settings, I think, is actually a good thing because it challenges you to constantly think about value-based care. People talk about value-based care as a concept, but you're doing it on a day-to-day basis, even between different patients in clinic, because you have to think about the cost and you have to think about how do I deliver care that's still of good quality, that's not necessarily going to break the bank. And so these are some of, I think, more challenging or at least questions that we have to think about deliberately. Whereas in the US, if you have insurance, then it’s pretty much carte blanche, for want of a better word. Which we did realize, especially with COVID - and I’m sure Pat and Dave you can bear testament to this - these disparities exist globally. And so you’ll find that in your patients who have no insurance or are underinsured, they’re still coming in with the same, sort of, challenges. I was talking to my colleague at NYU who works at Bellevue. When she was giving me the profile of her patients, it was interesting to see that there wasn’t really– and these are patients who don’t necessarily have insurance, there really wasn’t any difference in the images we are seeing from patient they’re seeing and the patients we’re seeing. So really it’s an opportunity for us to sort of rethink collectively our approach to care and really thinking about how do we provide quality care.

Pat Loehrer: I was in Washington this week, and President Biden had a three-day African US summit, and at the end of this, he basically pledged to spend $55 billion in Africa to help relations with them. We also had a discussion about the Moonshot 2.0, in which President Biden wants to end cancer as we know it, with a particular emphasis, I think, and now, in linking with LMICs.

Briefly, what would you tell President Biden in terms of what would be very helpful for the United States to help with the cancer problem in sub-Saharan Africa? What would you say in a sentence or two?

Dr. Miriam Mutebi: As we say, perhaps have the Moonshot, but stay grounded in the sense that– even before we think about complex molecules, we are still struggling as a continent with the basics of care. And so, investing in health systems and the basics will ultimately give more or improve outcomes rather than sort of focusing on specific molecules. So if we have the basics in place to deliver the basics of care, then that would go a long way toward shifting outcomes. The other bit that does need to happen is, again, with research because there is a paucity of cancer research. We did a recent bibliometric analysis and found that as a continent, we are only contributing to less than 8% of all sort of cancer research globally. And we do know that one, we have, I would say, the breadth of diversity in terms of genetic diversity. We do know that the responses to care and treatments are different. We do know that we do need to think about implementation science and what structures we can put into place, and what strategies. What works in different settings might not necessarily work in ours, and it does need to be backed by evidence. So there are opportunities to expand care and strengthen systems, but really do this in an evidence-based, pragmatic way that ultimately [inaudible] its own outcomes and outputs for the patient.

Dave Johnson: Thank you for that, Miriam.

Pat Loehrer: Well said. Thank you.

Dave Johnson: Great advice. I hope the President is listening.

Pat Loehrer: Dr. Mutebi, what was the first book that you remember that you really loved?

Dr. Miriam Mutebi: I think it was actually The Lion, the Witch, and the Wardrobe. It was just the whole sort of just stepping into a different world. And then, of course, we all had crushes on Aslan, the lion, but it was more because he was like this sort of guy who would swoop in and was morally just and get to mediate the world. And so I went through the whole series, I just gobbled it down, and I think that’s one of the things that really stands out for me as one of the books that I sort of remember early on.

Pat Loehrer: It's such a great pleasure today. I'm really excited. We're typically talking about books. And here's a book, Dave, I know that you have not read; it's entitled 101 Things I've Learned in Engineering School. It was an interesting book. As you know, I’m an engineer background, but there were a few quotes in here that I–

Dave Johnson: Pat, I live on Purdue Avenue, so I have some engineering background.

Pat Loehrer: Oh, that's true. Good for you. So you might like this one, Dave. One of the quotes I have is: "Inventing is a mixing of brains and materials. The more brains you use, the less materials you need." And another one - do you know the difference between accuracy and precision? They're really different things. And so, the best example that came from the book, which I thought was interesting, was pi, so pi is what?

Dave Johnson: Round.

Pat Loehrer: Okay, this is going to be painful. Pi is 3.14. Right? So that's accurate. But if you say pi is 3.1415926535, that's accurate and precise. And if you said pi is 3.98, that's just inaccurate and imprecise. As I think about engineering as we move forward, I'm thinking about the Lung Pragmatic trial that has just been announced, where we're trying to do trials a lot more simply in which I think we can be accurate, but perhaps not as precise as we always deem to be important. And I think we're really excited about that and that project.

Dave Johnson: Well, that's really all the time we have for today. And we really want to thank you, Miriam, for a wonderful interview. And knowing that you're up very late at home makes it all the more special.

We also want to thank our listeners to Oncology, Etc. This is an ASCO educational podcast where Pat and I will talk about just about anything. If you have an idea for a topic or a guest you'd like us to interview, please email us at education@asco.org. Thanks again.

Pat, I have an important question for you before we leave. What do you call a snail that's not moving?

Pat Loehrer: You got me, man.

Dave Johnson: Escarstay.

Pat Loehrer: I love it. Miriam, Asante sana.

Dr. Miriam Mutebi: Nime Shukuru.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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"Battling cancer takes place in many parts of the world and our next guest has led initiatives to do just that. In Part Two of this Oncology, Etc. Podcast episode, Professor of Cancer and Global Health at King’s College London Dr Richard Sullivan shares with us his research into cancer care in conflict zones around the world (0:58), his thoughts on “colonial” cancer research (5:50), his advice to people interested in pursuing a career in global oncology field (10:08) and using “pooled procurement” as an innovative approach to cancer care (11:13).

Participant Disclosures Dr. Richard Sullivan: Honoraria – Pfizer; Consulting or Advisory Role – Pfizer Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical

If you liked this episode, please follow the podcast. To explore other episodes, as well as courses visit https://education.asco.org or contact us at education@asco.org.

TRANSCRIPT

The disclosures for guests on this podcast can be found in the show notes.

Pat Loehrer: Hi. I'm Pat Loehrer, director of Global Oncology and Health Equity at Indiana University. I'm here with Dave Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas, and a friend of mine. This is the second half of our Oncology Etc. conversation with the professor of cancer and global health at King's College in London and the director of the King's Institute of Cancer Policy and the co-director of the Conflict and Health Research Group, Dr. Richard Sullivan. In part one, we chatted with Professor Sullivan about his international travels as a child to his transition from biochemistry and finally to a great career in health policy and research. Today we're going to continue our conversation with Professor Sullivan by asking him about his insight into the current state of the progress in global health care.

Richard Sullivan: Conflict and fragile populations around the world are sadly growing. They're unique ecosystems for a whole variety of reasons. I think fundamentally, though, to do research in those systems requires a huge amount of sensitivity and experience and expertise because you're dealing with the most vulnerable of the most vulnerable. And then, of course, whatever research you do, you're constantly thinking in the back of your mind how you then tie this into any form of impact. There is a tendency, often with research in these populations, that the research is just done for the researcher's sake rather than actually being utilized to help improve those lives you're actually involving and studying. But I admit it's a very tricky area to work in.

Cancer in conflict populations, a particular interest is a relatively new domain. It's only really been around for the last eight to ten years for a variety of very understandable reasons. Let's be honest, 30 years ago, cancer was not a significant factor in humanitarian conflict operations. You were dealing with demographically untransitioned societies, much younger. Really the group one, infectious diseases, child and maternal mortality, et cetera, were the primary foci. That still is the case. But what we're seeing now is much more transitioned populations being impacted by conflicts.

And you think about in Mexico, in the Narco Wars, Syria, Iraq, even Afghanistan, and all of those have changed dramatically the nature of how care is delivered and how patients move. And we call these new therapeutic pathways, and we consider them kind of post-Westfalian. We're not talking about cancer care anymore that's boundaried within nation states. Patients moving across national lines, we have patients moving in pathways which are absolutely unique and we've never experienced or seen before in the high-income West. And that means you have to have a different paradigm for care and a different paradigm for building cancer control systems. And I guess for the last ten to fifteen years that's what we've really been interested in is this dynamic of conflict populations and how you deliver care and who delivers it. And there, of course, you're talking with a very mixed act, a bunch: humanitarian organizations, the big NGOs, the ICRCs, Medecins Sans Frontières. You're talking about the militaries in many countries. The militaries are very powerful in many countries in terms of providing care. And then finally there is, of course, the health services or systems that exist to varying degrees in the individual countries infected by conflict. So our program really tries to understand how you strengthen health systems per se in these conflict populations. And obviously, my particular interest is in cancer and palliative care. But I'm going to be honest, for that we have a very large team, some remarkable colleagues I've worked with over the years, sub-Saharan Africa, the Middle East, and increasingly, there's a lot of leadership coming out from these countries taking these sorts of programs forward.

It's an important time, and I think Ukraine has taught us as well that if you don't think about, for example, cancer care within humanitarian operations, within UNHCR, you can end up in serious trouble in terms of planning, financing, sustainability. So I think Ukraine is going to be an interesting turning point in generally thinking about cancer care and conflict and humanitarian operations because it's really illuminated to everyone very clearly in Europe and the USA, what cancer and conflict really is, because I think the Middle East has felt a little bit far away, and it's been quite difficult selling all that kind of policy and work. But Ukraine is really having a dramatic impact and I think it's producing a lot of learning points.

Dave Johnson: You recently published, along with colleagues, I thought, a very provocative paper in JAMA Open Network about the participation of lower and upper middle-income countries in oncology clinical trials led by high-income countries. You made the point, be sure to correct me if I'm wrong on this, that first of all, Ukraine and Russia are actually two of the top participants in these kinds of trials. Number one. Number two, the question is, is it exploitative of the higher-income countries to be conducting these trials in these two countries and then more particularly, what the recent conflict in Ukraine has done to the participation of patients? And I wonder if you might comment on those points.

Richard Sullivan: I’ll maybe talk to the last point first. The conflict has been devastating for recruitment. It's also important to realize a lot of these sorts of clinical trials are funded by industry and they've been the backbone of funding research and also to a greater degree also access to certain types of medicines in these countries.

Is it exploitative? I think it's a very hard judgment call to make and I think if you ask my Ukrainian colleagues, the answer is no. We know exactly what we were getting into. When companies work in these places, they pay and they pay properly. The difficulty I think is, generally speaking, there is obviously this discussion now ongoing about neocolonialism and exploitation of low middle-income settings more generally. It's very hard, all the research we've been doing, it's very hard to make generalizations. There is absolutely no doubt. I want to recognize right up front that there has been some appalling exploitation and what I would consider to be colonial cancer research going on over the last 20 years. And it's blindingly obvious when you read papers, when you look at authorship, when you undo this sort of analysis, that there has been a lot of exploitation where high-income countries are parachuted in. Investigators have taken whatever they needed data, samples, interview data, made good careers on the back of it and good research funding, and not really put much back into the ecosystem they've been working with. So that's absolutely clear up front.

Then we have this other problem, as well as research funding generally, because if you step back and look at the data, and this is something we've published on, actually, with Julie Gralow, and ASCO, we talk the talk about funding global cancer, that's big, high, powerful, wealthy, high-income countries. But when you actually look at the data and you ask that question, of all the cancer research publications, how many from the USA, the UK, the Frances, the Germany are actually with lower middle-income countries, you barely get above 4%. It doesn't take a rocket scientist to realize we taught the talk here, but we're not walking the walk. The money is not being provided to do genuinely equal collaborative work. We've not built capacity and capability in many countries in terms of clinical research methodologies and strengths. We failed to back up a lot of the rhetoric. We talk about global cancer with actually proper cancer research system strengthening. And I think there's that realization, and there's been that realization over the last five or six years that that's been the case.

And when you take countries like India who kind of realized, you know, maybe ten to fifteen years ago this was the case, they've obviously gone themselves and driven their own agenda. So the National Cancer Grid of India, the development of Credo, the methodology workforces led by Dr. C.S. Pramesh from the Tata Memorial Centre, has been absolutely superb work. I mean, it's been amazing. A real master class in national development. But I think we do, as high-income countries have to think, look ourselves in the mirror and ask the question, is this what we mean by global cancer? Are we really putting enough money in? And are our research priorities right? You've heard me argue about this enormous amount, about how much money goes into discovery science and biopharmaceuticals. Where's the money going into implementation science, health services research, social science research, health economics, all the stuff that actually leads to direct improvements by strengthening cancer systems. It's a drop in the ocean compared to the billions and billions a year that have been spent in these other areas. So I think the agenda is unbalanced. But I think when you talk about exploitation, you have to be kind of more nuanced about that argument.

Pat Loehrer: Richard, we were just at the World Cancer Congress and it was heartening to see all these wonderful young people from around the world thinking about global oncology and various different aspects of things. But I'm thinking about Brexit. I'm thinking about some of the issues going on in our country in which we are hunkered down to issues in our own country. P30 grants for the cancer centers are focused on issues in our catchment area. They have an illusion of global stuff, but it's really not a priority. What would you say to young people who are interested in pursuing a career in global oncology? Is this something that's worthwhile for them to do, and what would you advise them?

Richard Sullivan: Yes, it's absolutely worthwhile to do. And I think two pieces of advice I would have is develop, first of all, your interests with friends. The work we do around the world is with friends. These are close colleagues. This is not some instrumental transactional research program of sending your samples to a genome lab for them to sequence it and send back to you. These are really long-term true friendships. That's what makes the difference, is that long-term commitment, year after year, decade after decade. So find out where it is and what it is you're really passionate about. Make those friends and then develop the suite of knowledge that you're going to require to do the kind of research. I mean, the thing with global cancer is it requires a very broad outlook. It doesn't matter what you are the master of; whether you're an epidemiologist or social scientist - mixed methods is absolutely the way to go. What you have to be able to do then is sort of think more broadly about other sorts of disciplines to bring out, because most of the really complex problems require a very transdisciplinary approach methodologically, and that takes a few years to build the insight into these other disciplines and also to make research relationships. And again, there is no substitute for experience in terms of going to places, working with people, working on projects.

And of course, with that comes the advocacy. Cancer crosses borders, the advocacy for global cancer. You need people who are going to be passionate about this, who are really going to stand up and shout from the rooftops what's really needed and change, I think, the minds of both national and the philanthropic funders, which, as you said, Pat, you're spot on, are still very, very insular, very inward looking in terms of how they see the world of cancer research. And I think it needs a bit of a sea change. But the opportunities are out there. There's some, as we know, wonderful, wonderful people working all over the world on really, really different problems. Building capacity in surgery in Zambia is not the same as building capacity in surgery in one of the states in India, for example. So there's an incredible richness and diversity. It's a really, really important area. And I think younger crowds don't get put off because there's no clear pathway and there's a reason there's no clear pathway. It's so diverse, but it's absolutely worth it. And there's plenty of us, I think, out there now that can help. There's some great conferences like the Word Cancer Congress, amazing regional conferences like AORTIC, which is happening in Senegal next year, the big conferences in India. Absolutely superb. Just go immerse yourself in this.

Dave Johnson: You've talked about a lot of different innovative approaches to cancer care and lower- and middle-income countries. One thing that I read that you'd written about was something that I had never thought about. I think you called it pooled procurement. Can you talk about that? Where maybe two countries can join together? It seems irrational to me that we could expect something like that to happen. Are you aware of any examples?

Richard Sullivan: It's interesting because I’ve the pleasure of working with a lot of colleagues over the years on access to essential cancer medicines. And it's interesting because we're now getting into a domain in global health, which again is very rich for more learning, for more people coming into which is the political economy of cancer. Because this is where the disciplines of health economics, decision procurement, logistics, all kind of fuse together, as well as an understanding of power and decision making in individual countries. So, in and of itself, procurement is where groups of countries or centers within a particular country will come together to create sufficient volume to negotiate with suppliers for a particular consumable. And that drives down the prices. You become much more powerful in negotiating prices if you can all get together.

One of the biggest problems, and again, there's some amazing work that's been done, for example, by Chai on this, who have really innovated in the pool procurement medicine space. But we've also seen pool procurement as well for radiotherapy. If you can come together as large groups with common needs, you've got a lot more power to negotiate prices with individual suppliers. And more importantly, one of the problems with suppliers, whether it's essential medicines or other sorts of consumables, is if the market is too small, if you're trying to negotiate on a center by center basis, it's often it's just not worthwhile for the supplier to come to attend a deal with you. They don't want to contract with you because the volumes are too small and the margins are therefore too small. So pooled procurement is one way of getting around this.

But I speak very easily about something that's actually a very complicated and complex subject. There's a lot of law involved in this, there's a lot of economics in this, there's a lot of business work in this. Again, it's one of those areas of research and expertise in the cancer area that's really quite thin and really needs to be bolstered. And here we're talking about the second translational gap is you've got the Essential Cancer Medicines list - how on Earth do you deliver that in an equitable and affordable manner to population X and country Y? That is in of itself a research question, that falls under the political economy of cancer in terms of research, but again, also falls out with most research funding organizations who don't quite know how to handle supporting this sort of research and capacity building. But as you can see, absolutely crucial. Great. You've invented the drug, you've invented the new surgical technique, or the new form of radiotherapy. It delivers clinically meaningful benefits. So how on Earth do you embed that in a sustainable manner in a health system? And that is a big missing gap in the global research agenda.

Pat Loehrer: You can have all the drugs and radiation equipment in the world, but if you don't have the healthcare professionals trained to give it, it's worthless. I think one statistic was that there's 176 physicians in the United States for every one in Uganda. And how do you deliver cancer care by trained oncologists? It's getting more and more complex for us, too.

But this has been just a wonderful discussion. Just as a quick question, though, Richard, Dave mentioned his book. Anything you're reading right now or anything of interest?

Richard Sullivan: Yeah, yes, I've just started reading a fascinating book called Dadland by Keggie Carew. And it's fascinating because this is a marvelous piece of work, actually. And this is a daughter trying to make sense of her father's life. And she really sort of spends years patiently collecting all these details of her father's life and growing up with it. And she sort of takes, juxtaposes– when she starts the book, he's got dementia. But this is a man who in his early days was in Jedburgh, was a Special Operations executive, fought behind enemy lines in France in D-Day, went to the Far East in Burma. And there's this extraordinary pathos and sensitivity in this book about watching his decline with dementia, as she puts it, as he slowly disconnects from reality and then he disconnects from himself, and trying to make sense of it with the individual he once was and the kind of individual. And through that, she gets to explore all the kind of boxes of letters and things that were all stuck in the attic. Memento mori, essentially, of his time in Burma and France.

But it's very, very touching, and I would really recommend your listeners to read it because it unpacks dementia in a way I've never seen a book unpack before in terms of the impact it makes to an individual. And it asks that question about - what makes you you? And when this father, he dies, is he still the same man who jumped out of airplanes in the middle of the night in France? Is he still the same man as he was in Burma? It's very touching. It's one of the most impressive books of exploration into human nature and an identity that I've read for a long time. So, yeah, Dadland, excellent.

Pat Loehrer: I'll get it.

Dave Johnson: Absolutely. Sounds great.

Well, that's all the time we have for today, and I want to thank Richard Sullivan so much for joining Pat and me. This has been a fascinating conversation and you're to be congratulated on all of your many accomplishments and all the things that I'm sure you'll do in the future.

I want to take the opportunity to thank our listeners for tuning in to Oncology, etc. This is an ASCO Educational podcast where we'll talk about almost anything and everything. So if you have an idea for a topic or a guest you'd like to hear on our show, please email us at education@asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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Diffuse Large B-Cell Lymphoma or DLBCL is the most common type of lymphoma. Much progress has been made in treatment of the disease lately, particularly with emergence of CAR T-cell therapy, but not all patients are benefiting from it. This episode of Cancer Topics features Drs. Loretta Nastoupil and Chijioke Nze exploring treatment approaches for two cases of refractory DLBCL: a 60-year-old man with no comorbidities (1:30) and a 39-year-old woman with HIV (18:35). The guests also discuss improving patient access to CAR T-cell therapy and managing its toxicities (10:35), as well as emerging therapies for DLBCL (14:30). To learn more about management of refractory DLBCL, check out the ASCO course linked bellow.

Guest Disclosures:Loretta Nastoupil, MD: Honoraria – Gilead Sciences, Novartis, Bayer, Janssen Oncology, TG Therapeutics, Bristol-Myers Squibb, ADC Therapeuitcs, Morphosys, Epizyme, Genmab, Takeda, Genentech/Roche; Research Funding – Janssen Biotech, Celgene, Genentech/Roche, Epizyme, Novartis, IgM Biosciences, Caribou Biosciences, Gilead Sciences, Allogene Therapeutics, Takeda Chijioke Nze, MD, MPH: No Relationships to Disclose

Resources:

ASCO Course: Second-line Therapy for Relapsed/Refractory Diffuse Large B-cell Lymphoma (Free to Full and Allied ASCO Members)

ASCO Podcast: Cancer Topics - New Therapies for Lymphoma (Part 1)

ASCO Guideline: Management of Immune-Related Adverse Events in Patients Treated With Chimeric Antigen Receptor (CAR) T-Cell Therapy

ASCO Article: Navigating the Evolving Treatment Landscape of Diffuse Large B-Cell Lymphoma

If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

The disclosures for guests on this podcast can be found in the show notes.

Dr. Loretta Nastoupil: So, I do have optimism that as we have more and more treatment options entering into the treatment landscape, we'll have fewer patients that are experiencing a refractory disease, and potentially succumbing to the lymphoma.

Hello, my name is Dr. Loretta Nastoupil, I'm an Associate Professor and Deputy Chair of the Department of Lymphoma and Myeloma, at the University of Texas MD Anderson Cancer Center.

Welcome to this ASCO Education podcast episode. It's my pleasure to welcome Dr. Chijioke Nze.

Dr. Chijioke Nze: Hello, everyone. I'm Dr. Chijioke Nze, a Hematology/Oncology fellow at MD Anderson, I'll be co-hosting this episode with Dr. Nastoupil.

Dr. Loretta Nastoupil: We've seen notable advances in diffuse large B-cell lymphoma research lately, with novel treatments including CAR T-cell therapy, offering the prospect of long-term remission for some patients, yet many patients are not even receiving second-line or later therapy, and even fewer are treated beyond the second line.

How do you approach a patient with refractory diffuse large B-cell lymphoma? In today's episode, we'll explore strategies for management of refractory diffuse large B-cell lymphoma through two patient cases. So, Dr. Nze, walk us through our first case.

Dr. Chijioke Nze: Our first case is Frank. Frank is 60 years old and has no comorbidities. He presented with severe back pain in September 2021, and was evaluated locally. He had a CT scan that showed retroperitoneal mass, prompting further evaluation. He had a biopsy of the left retroperitoneal mass in November 2021, which was consistent with diffuse large B-cell, germinal center B-cell of phenotype Ki-67 of 90%. He had a subsequent PET-CT scan, which showed a large conglomerate, and invasive left retroperitoneal hypermetabolic mass with satellite nodularity and contiguous bulky retroperitoneal adenopathy. He had bulky, FDG-avid metastatic retrocrural and intrathoracic adenopathy as well. He was treated with R-CHOP for six cycles, and at the end, achieved complete remission.

He had a PET-CT a year later that showed new and worsening intensely FDG-avid abdominal adenopathy. This was new from a PET scan he'd had in January 2022 of the same year. He had a biopsy of this retroperitoneal adenopathy, which was consistent with relapsed diffuse large B-cell germinal center phenotype, also Ki-67 of 90%. Locally, he was treated with ICE, times five cycles, and had a follow-up CT scan at the end, which showed persistent bulky nodal disease with periaortic regional nodes with double 5, consistent with persistent disease. He also was found to have new and more conspicuous nodes in other areas as well. He presented for his first visit at MD Anderson in September 2022.

Dr. Nastoupil, when you see a patient like this coming into your clinic, what's your typical approach?

Dr. Loretta Nastoupil: For a diffuse large B-cell lymphoma, we are always hoping for cure with frontline rituximab, containing anthracycline-based chemotherapy. And so, it's always a gross disappointment when patients experience relapse. The timing of that relapse right now informs our current approach. And the reason I mention that, is because there have been three large randomized studies conducted and reported out just in the last year demonstrating that CAR T-cell therapy is the preferred option for patients who experience either primary refractory disease, or relapse within 12 months.

And that is because they resulted in better outcomes than standard salvage-based chemotherapy and high-dose therapy autotransplant in the setting of chemosensitive disease. I have to acknowledge, of the three studies that were done, two were positive trials, so that's why currently, we have axi-cel or Axicabtagene ciloleucel, or Lisocabtagene maraleucel, and not tisa-cel or Tisagenlecleucel, as CAR T-cell therapy options. And again, that's because two of the three studies were positive trials.

Now, the challenge is why would we have two positive studies in one negative trial? There are a lot of caveats to how those studies were conducted, but I think one of the biggest important lessons to be gained is that if you're going to consider CAR T for these high-risk patients, you want to do it as soon as possible, because that delay from identifying CAR T as a preferred option to actually infusing cells in a disease-- in a case particularly like this, where patients may have bulky, aggressively-behaving disease - that prolonged time may actually have an impact on outcomes.

Dr. Chijioke Nze: Excellent. Thank you. So, you've mentioned he had an early relapse. How would you define early relapse in this patient population?

Dr. Loretta Nastoupil: Thinking back to how we've been approaching diffuse large B-cell lymphoma over the last two decades, the PARMA study, which was done prior to Rituximab, suggested that for patients who had chemosensitive disease to a platinum-based salvage chemotherapy, which generally, was at least a partial response on CT, if they went on to high-dose therapy autologous stem cell transplant, 50-60% of those patients could anticipate cure. Whereas for the folks who continued on salvage chemotherapy, 10-20% of those patients had favorable outcome.

So, we generally do try salvage-based chemotherapy, and for patients with chemosensitive disease, go on to high-dose therapy autotransplant. However, in the modern era where we've approached patients who've had rituximab as part of their frontline therapy, at least two studies - the ORCHARD study, and the CORAL study suggested that only 20% of patients who relapse in the post-rituximab era, particularly within 12 months, were successfully salvaged with platinum-based chemotherapy and high-dose therapy autologous stem cell transplant.

Now, fortunately for patients who fail salvage, we have had CAR T-cell therapy as an option based off of three pivotal phase II studies, demonstrating about 40% of patients could anticipate a cure with CAR T-cell therapy. So, it only made sense to try and move that therapy up into second line, and the preferred population was those that had progressed within 12 months of frontline rituximab and anthracycline-based chemo. Now, to qualify for those studies, patients had to be considered fit for the control arm, which was salvage and auto transplant. Nonetheless, I do think for a patient like this, who's 60, without any other significant comorbidities, whose biggest challenge to longevity of life is his aggressive lymphoma, CAR T-cell therapy should be considered as soon as possible for this patient.

Dr. Chijioke Nze: Is there still a role for high-dose therapy and autologous transplant in the new era, given the efficacy shown with CAR T-cell therapy?

Dr. Loretta Nastoupil: I think there is. And the reason why I say that is, the trials that were done really did focus on the highest-risk patients, which were those with primary refractory disease or those who progress within 12 months of frontline. Now, there are patients that will have later relapse. And so, I do think for those patients, particularly those who are young and otherwise fit, should be approached first with a platinum-based salvage chemotherapy, in the setting of chemosensitive disease, proceed onto high-dose therapy and autologous stem cell transplant.

Now, what do we do for those patients who have a late relapse but are otherwise older, or who have comorbidities that would make them suboptimal candidates for the high-dose therapy preceding stem cell transplant? I have a couple other options for those patients - so, there was a trial done with liso-cel for patients who were otherwise older, or not fit for intensive therapy. It's a single-arm phase II without a randomized comparison, but also demonstrated that liso-cel in second-line, later relapsed patients who are not fit for intensive therapy, resulted in comparable outcomes to what we would anticipate on that third-line or later setting.

We also have other non-CAR T-cell therapy options, such as tafasitamab, which is a naked CD19 antibody, which has been combined with lenalidomide in the L-MIND study, again, for patients without primary refractory disease and who would not be appropriate candidates for intensive therapy. So, I do think we have alternative options, it's just when we look at the totality of the data right now, my conclusion is that CAR T-cell therapy, particularly for high-risk patients, is the most likely chance to result in cure.

Dr. Chijioke Nze: Excellent. In a patient who we are considering CAR T-cell therapy, what are some of the short-term and long-term consequences, or toxicities that we should worry about?

Dr. Loretta Nastoupil: One of the challenges right now with CAR T, and why it's still only available in specialized centers, is the acute toxicity, which is really a derivative of its mechanism of action. We take patients' own T-cells, we use a viral vector to introduce extracellular receptor, but also a co-stimulatory molecule. So, once these cells engage their antigen, sort of prime to react to that, and that can lead to pretty rapid T-cell expansion, release of cytokines, recruitment of other inflammatory cells to that tumor bed, and as a result, a large portion of patients can anticipate to experience cytokine release syndrome, which again, is the result of the activation of these T-cells, the expansion and the recruitment of other inflammatory cells.

Fortunately, for most patients, this results in fever alone that can be managed with supportive measures. Occasionally, they'll have concomitant hypoxia or hypotension, and unfortunately, few patients will have significant or severe toxicity. The other toxicity that's less easily manageable or less predictable is the neurotoxicity that can vary according to patient-specific characteristics, such as age, and the amount of tumor burden, their performance status going into CAR, but even more importantly, the construct that's utilized, with highest rates of neurotoxicity associated with axi-cel. Again, likely speaking to its construct and the CD28 costimulatory domain that is unique to axi-cel.

As a result of these acute toxicities, patients are required to stay within two hours of their treating center for the first four weeks, and they're also discouraged from operating heavy machinery, such as driving, for the first eight weeks following CAR T. So, I do you think this creates some barriers to access to this therapy, particularly the patients that are treated in community settings that may reside long distances from these certified CAR centers.

Dr. Chijioke Nze: So, you mentioned that obviously, given the specialized care needed for the CAR T therapy, that they're kind of localized in certain sites. What are some of these issues with access that you're noticing both in the logistics of giving CAR T, and also in patient access?

Dr. Loretta Nastoupil: I'm hoping we're going to address one of those issues right now, which is, education and awareness, because we've had these three randomized studies, and two being positive readouts just in the last year. It's important to get the message out that CAR T-cell therapy for high-risk early relapsed refractory large cell lymphoma patients can result in a significant improvement in event-free survival and progression-free survival over the standard of care. And so, being aware that this therapy can result in more favorable outcomes is step one.

Step two is, we have to ensure that there are minimal barriers to getting those patients into these treating centers as quickly as possible. So, recognizing who delivers the care - is it your traditional stem cell transplant physician? Is it a lymphoma doctor? What centers are certified? Some of these issues can be addressed with quick internet searches. So, for instance, in our center, we have a 1-800 number for anyone who's interested in CAR T-cell therapy that connects them directly to a CAR T coordinator who can help them understand do they meet the FDA-approved indication? Would they be interested in seeking consult? And we try and prioritize getting those patients in the door as soon as possible since time likely does have an impact on outcomes. And then, partnering with our community oncologist - you're going to be the primary oncologist for these patients leading up to CAR, and then after that four-week window, when we're keeping the patients in close proximity to our centers, we often send them back. And so, making sure that they're comfortable knowing what potential late toxicities to be on the lookout for, which include B-cell aplasia and risk for infection, or prolonged cytopenias, beyond just lymphopenia. And so again, there's a need for education and partnering with our community sites to make sure that there is successful handoff of these patients back after they've completed the monitoring for the acute toxicity. And then, really trying to explore opportunities to utilize some of the better tolerated CAR T, such as liso-cel, in your non-traditional academic centers. Those that are equipped to handle phase I studies or stem cell transplant, for instance, may not be affiliated with the university.

So, I think those are all types of strategies that could be employed to try and improve access for patients.

Dr. Chijioke Nze: And then, you mentioned the liso-cel, but in some of the toxicities, are there ways of predicting which patients will do better or worse? Are there ways to reduce toxicities? And is there any hope for things such as outpatient administration of CAR T?

Dr. Loretta Nastoupil: So, my answer today may improve over time as we get larger numbers and more experience, but what we currently understand is that the patient performance status, their degree of tumor, how quickly that tumor is increasing, LDH and some inflammatory markers such as CRP or ferritin pretreatment can provide some insight into a higher risk of toxicity. And then obviously, the construct that's utilized. Again, axi-cel has higher rates of neurotoxicity. All will have some form of cytokine release syndrome, generally speaking, but rates of grade three or higher are quite infrequent, particularly with liso-cel and tisa-cel. So, it's multifactorial. That then raises the question, can we do anything to alter those modifiable risk factors? Can we reduce the disease burden? Can we improve the performance status? Can we do anything to reduce the inflammatory markers pre-treatment? And so, those are strategies that are being discussed, and I think in general, as we get more effective therapies that enter into the treatment landscape, it's probably some of the best ways to try and reduce some of those risk factors.

Dr. Chijioke Nze: Rounding that up, are there any exciting developments or things to look out for, for exciting therapies in the relapse setting?

Dr. Loretta Nastoupil: A couple of things beyond CAR T that I think we should all be aware of and anticipate to be in our toolkit relatively soon; probably, one of the most exciting, is the development of the bispecific antibodies.

So, another challenge with CAR T is the requirement to collect these patients' own T-cells and send them off to a central manufacturing site, and the turnaround time can be anywhere from 3-4 weeks. And again, in a situation where you have an aggressive disease, that can be a long time to wait. And so, is there any treatments that are more readily available, that again, will be effective at reducing disease burden? And so, by specifics kind of fit those unmet needs to some extent - you have essentially two heads; one head is going to bind the endogenous T-cells that eliminates the need to leukapherese these patients and manufacture, and then the other head is going to generally engage CD20, which we know is an effective targeted antigen, particularly in B-cell lymphomas. And there are a number that are under development. We saw preliminary phase II data with glofitamab, epcoritamab, as well as combination strategies with mosunetuzumab.

So, I do have optimism that the bispecific antibodies will potentially enter into the treatment landscape. I anticipate they'll probably be used first post-CAR T, but will likely move their way into earlier lines of therapy. I've already mentioned tafasitamab in combination with lenalidomide, which is an effective non-chemotherapy option. We have antibody-drug conjugates, such as Loncastuximab, which is a CD19 antibody-drug conjugate. It's essentially targeted delivery of chemotherapy, and it looks to have a pretty promising activity as a single agent in that third-line or later space, and then polatuzumab, which is a CD79b antibody drug conjugate, in the relapse setting has been combined with bendamustine and rituximab, but also demonstrated significant improvement in the frontline setting in the POLARIS study where vincristine was replaced with polatuzumab. So, I do have optimism that as we have more and more treatment options entering into the treatment landscape, we'll have fewer patients that are experiencing refractory disease, and potentially succumbing to the lymphoma.

Dr. Chijioke Nze: And then, one additional question: How do you approach a patient who is not quite as fit, in thinking about what their options are for later-line therapies? You already mentioned some of these, but which of those would you prioritize in this setting?

Dr. Loretta Nastoupil: Again, as we get more experience, we develop skills that help us sort of navigate all these different options. In my practice, if I'm even considering CAR T, I'm going to delay bendamustine until after I've collected those cells. I think that's one caveat that-- we do get nervous about the quality of those autologous CAR Ts if they're generated in someone who's had recent exposure to bendamustine. So, that may help me sequence that later on. We have questions right now about what's the optimal sequencing of CD19-directed therapy because we have several options beyond just CAR T-- As I mentioned, we have Lonca, we've got tafasitamab and lenalidomide. Currently, we don't have prospective data that really informs that question, and there's a number of research studies underway to try and help us understand if there is a preferred sequence, or even if it matters how we handle CD19 targeting.

For my older, frailer patients where I'm really worried, they're not going to be able to tolerate something like liso-cel, or they're not going to be able to have that caregiver, and they're uncomfortable relocating to an area where CAR T might be available, my general approach right now is to consider tafasitamab and lenalidomide first in that relapse setting, followed by either Lonca or Pola-BR. Selinexor is another option. It's an oral agent, though again, in my opinion, if we look at the totality of the data, may be less effective than the other options. So, I might reserve that as a last option for someone, again, with relapsed/refractory large cell.

Dr. Chijioke Nze: Excellent. Thank you. This has been very helpful.

Dr. Loretta Nastoupil: All right. So, Dr. Nze, now I'm going to turn the table and ask you some questions.

I'm going to change this up a little bit - she's now a 39-year-old female. She has significant comorbidities. She has HIV, and again, large cell lymphoma. So, let me walk you through her case, and then we'll discuss some of the challenges, again, in a very different scenario, albeit a similar disease.

So, our female is, I mentioned 39, pre-existing HIV, she's treated frontline with six cycles of R-CHOP and intrathecal methotrexate for CNS prophylaxis. Because of her comorbidities, again, not well controlled HIV, she also has a poor functional status at the time of relapse. This was a couple years ago, and CAR T was not an option in second line, though she is someone who had a relapse that was beyond 12 months. So, for her second-line approach, because of her comorbidities, she actually receives rituximab in combination with high-dose cytarabine, dexamethasone, and oxaliplatin for three cycles, and actually achieves a chemosensitive disease and is referred to our stem cell transplant colleagues.

Unfortunately, at that time, due to comorbidities, she was deemed not to be an appropriate candidate for high-dose therapy, and she's been monitored for signs of relapse. Despite being in the minority, she actually does not have a recurrence of her lymphoma but has a number of other, again, challenges in regards to her comorbidity, including multiple infections, resulting in recurrent hospitalizations. And so, it's always been a challenge for me in being intimately involved in her case, deciding when she's presenting, how alarmed to be about recurrent lymphoma versus infection, and how I might approach her in the setting of relapsed large cell lymphoma.

So, what role does prior type and response to therapy play in treatment selection at your next line of treatment?

Dr. Chijioke Nze: I think in this patient, it sounds like she got one adequate therapy on and the initial presentation with R-CHOP, and then with IT chemotherapy as well. She looked like she had a good response. I think the fact that she achieved a complete response and the duration of her response, lets me know that she likely has chemosensitive disease. This, in turn, helps me to pick what to do next. As you mentioned previously, we know how efficacious the CAR T therapy is, but in someone like her who had a long duration, trying salvage therapy and proceeding to autologous transplant might make sense.

I'd be interested in your thoughts.

Dr. Loretta Nastoupil: Yeah, I agree. And I think part of the challenge, particularly when we're facing patients with HIV, they're often excluded from prospective studies. And so, we're often in a scenario where we may not have the wealth of data to inform our treatment decision. But I do think in general, comorbidities play a major role-- we're navigating treatment options. Because again, traditionally, we've used intensive chemotherapy as our mainstay of treatment, and there are clear criteria that patients generally should meet that help us predict how likely they are to have significant or severe toxicity from high-dose therapy. And this is a prime example of even though she was young, her comorbidity made her a poor candidate for intensive therapy.

I think the other sort of non-clinical factors that we sometimes take into consideration, because CAR T was approved off of single-arm phase II studies, again, none of which would've included someone like her, because of her HIV status, how do we extrapolate-- for instance, if she had relapsed in that third-line space, and suggesting that she did not have significant infection or other significant comorbidities, do we have experience to proceed with an autologous CAR in that setting? So, again, there've been a few cases where we have case reports where people have reported on their standard of care outcomes, particularly with CAR T in patients with active HIV disease, but one of the concerns I have in these scenarios is very selected. If you have active infection, that can make the acute toxicity with CAR significantly worse. And so again, we're trying to navigate a sort of limited data zone to try and help her and choose the right therapy.

Again, you've met this patient with me, you helped care for her for some time, and you have a unique experience of also practicing in a county hospital where comorbidities, particularly, like HIV, can be much more common. What is your perception regarding barriers to accessing CAR T as it pertains to social factors, clinical factors, and again, this is a case that highlights some of those issues.

Dr. Chijioke Nze: You mentioned at first that she had uncontrolled HIV. So, I think which, one, speaks to her treatment reference of her non-malignancy-related diseases, and trying to get that under control would be one of the first things I could think about. Thinking about how her care is managed and what kind of support she has are very important for us to think about as well. The other thing that's very important is, a lot of patients who we're seeing in the community may not have access to such specialized centers such as MD Anderson, where patients do have access to clinical trials and CAR T therapy. So, patients who are unlike her, who might qualify, may not actually be able to get these therapies as well.

Part of the reason is, it can be insurance status, which is what we see in a lot of our patients. So, a barrier to get into the door. And then too barriers, lack of social support can be a big issue as well. And then there's also a big push in the community to improve the trust and awareness of these novel therapies, as you've mentioned.

So, in a lot of the community practice, some of the community practitioners may not be comfortable with these, and a lot of the patients may not have heard of these new technologies, and also want to defer trying new therapies before having other people try new therapies before they consider them themselves. I think all these things present specific significant barriers to patients in the community. One, their ability to adhere to care, two, their insurance and their ability to get care and the financial toxicities associated with that. And then third, really understanding the options that are available.

Dr. Loretta Nastoupil: And again, just to try and illustrate a couple other points. You know, we use a case here, which is a real case, with significant comorbidities such as HIV, which again, is something that is not frequently encountered, and will have a large impact on treatment selection. What if I just told you this patient has comorbidities, but she has moderate type-2 diabetes, and as a result, she has mild renal insufficiency, ejection fraction is actually adequate, would you have done anything different in this case?

Dr. Chijioke Nze: No. I think in this particular case, I do think the fact that she did have a good response for a long duration of time, and did seem to have chemosensitive disease, I would probably still have tried a salvage therapy and autologous transplant in this patient. In the event that she was refractory, or had early relapse, and in that case, I would consider her to not be chemosensitive and would definitely have sought some more active therapies such as CAR T cell therapy through available products.

Dr. Loretta Nastoupil: And then one last question for you: What if we just changed her age and we made her 79, but no other significant comorbidities, how would that have impacted your approach?

Dr. Chijioke Nze: I'm going to turn that one over to you, I'm not exactly sure how I would treat with older patient with the same disease.

Dr. Loretta Nastoupil: That's fair. So, if you have an older patient who has a late relapse, but not necessarily someone you would consider appropriate for salvage chemotherapy and high-dose therapy, then I think tafasitamab and lenalidomide would be probably my first choice in that setting, just based off of the L-MIND study.

Dr. Chijioke Nze: Thank you, Dr. Nastoupil, for a great discussion of the management of diffuse large B-cell lymphoma.

And thank you to all our listeners. We appreciate you tuning in to this episode of the ASCO Educational podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

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Battling cancer takes place in many parts of the world and our next guest has led initiatives to do just that. In Part One of this Oncology, Etc. Podcast episode, Dr. Richard Sullivan, Professor of Cancer and Global Health at King’s College London, shares with us his intriguing life trajectory, encompassing a childhood in various parts of the world, aspirations for a veterinary career that turned to basic science, medicine, health policy (4:27), and even a long-term stint with the British Army Intelligence (12:22). Dr. Sullivan, who served as Director of Cancer Research UK for nearly a decade also discusses traits he looks for in a cancer investigator (19:21), and how to be happy (21:16)!

Guest Disclosures Dr. Richard Sullivan: Honoraria – Pfizer; Consulting or Advisory Role – Pfizer Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical

If you liked this episode, please follow. To explore other episodes, as well as courses visit https://education.asco.org. Contact us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Hi, I'm Pat Loehrer. I'm director of the Center of Global Oncology and Health Equity at Indiana University Cancer Center.

Dave Johnson: And I'm Dave Johnson at UT Southwestern in Dallas, Texas.

Pat Loehrer: And this is Oncology, Etc. Dave, what book have you read this last month?

Dave Johnson: I have one I wanted to recommend to you. It's very interesting. It's by Steven Johnson, not of the syndrome fame. It's entitled Extra Life: A Short History of Living Longer. You may have heard of this because PBS made a special documentary about this particular book. But in it, Johnson talks about the remarkable increase in human lifespan, especially over the 20th century, and the various factors that contributed to increased years of life from on average in the United States of about 48-49 in 1900 to just about 80 in the year 2000. So that beats anything in the history of mankind before.

And he has a chapter about each of the factors that contribute to this, and some of which I think we all recognize. Things like antibiotics playing a role, but some of the things that I hadn't thought about were improved drug regulation and the development of randomized controlled trials, which all of us have participated in. How important that is.

He also talked about, at least in the United States, the importance of automotive safety. And I'm sure some of us on this podcast are old enough to remember cars that did not have safety belts and certainly not other safety maneuvers that have really improved lifespan in that regard. So I found it a fascinating book. I think our listeners who are interested in medical history would also enjoy this text.

Pat Loehrer: Did he mention this podcast?

Dave Johnson: No, actually it wasn't mentioned, and I thought that was a tremendous oversight. So, I've sent him a letter and recommended that he add it.

Pat Loehrer: We may not live longer, but it just seems like we're living longer. When you listen to this podcast, time stands still.

Pat Loehrer: Well, it's my real great pleasure to introduce our interviewee today, Richard Sullivan. I met Richard several years ago through the late Professor Peter Boyle in Leon, and it's one of the greatest highlights of my life to be able to know Richard.

Professor Richard Sullivan's Research Group studies health systems and particularly chronic disease policy and the impact of conflict on health. He's a professor of cancer and Global Health at King's College in London and director of the Institute of Cancer Policy and Co-director of Conflict and Health Research Group. As well as holding a number of visiting chairs, Richard is an NCD advisor to the WHO, a civil military advisor to the Save the Children Foundation, and a member of the National Cancer Grid of India. His research focuses on global cancer policy and planning and health system strengthening, particularly in conflict ecosystems. He's principal investigative research programs ranging from automated radiotherapy planning for low resource settings to the use of augmented or virtual reality for cancer surgery through the political economy to build affordable equitable cancer control plans around the world.

Richard has led more Lancet Oncology commissions than anyone else. In fact, Lancet is talking about calling it the Sullivan Commissions. He's led five Lancet Oncology commissions and worked on four others. He's currently co-leading the Lancet Oncology Commission on the Future of Cancer Research in Europe and Cancer Care and Conflict in the conflict systems. His research teams have had major programs in capacity building in conflict regions across the Middle East and North Africa. He's done studies on the basic packages of health services in Afghanistan and worked in Pakistan, Syria, and the Democratic Republic of Congo. He's been a member of the British Army, intelligence and security, and in that capacity he's worked many years in biosecurity and counterterrorism issues. I think in some ways, this is the most interesting man in the world, and it's our pleasure today to have Richard join us. Richard, thank you for coming.

Richard Sullivan: Pat, Dave, you're really too kind. Marvelous to be with you. Thank you for the invitation.

Pat Loehrer: Can you tell us a little about your upbringing and early life before you became Dr. James Bond?

Richard Sullivan: I'm not sure that's anywhere close to the truth, sadly. But, yeah, I have had a very interesting, eclectic life. I was born in Aden just on the cusp of where the British Aden Protectorate met a country which actually no longer exists, the People's Democratic Republic of Yemen. Because after the British left Aden, essentially the East Germans, and what was then the Soviet Union took over southern Yemen. So I was born in a very unusual part of the world, which sadly, since then has just deteriorated. I spent many years of my life with my parents, who were in the diplomatic service and doing other things, wandering around the globe, mainly in the Middle East and East Africa. We spent quite a lot of time, strangely enough, we washed up on the shores in the USA once as well. Dayton, Ohio, and eventually-

Pat Loehrer: Not to interrupt you, Richard, there are no shores in Dayton, Ohio. So just correct you there.

Richard Sullivan: That is so true. My memory - cornfields everywhere. I had a wonderful dog then, that's how I remember it so well. And I didn't really come back to the UK until, oh, gosh, I was nearly 10-11 years old. So, coming back to the UK was actually a bit of a culture shock for me. And then relatively classical in terms of the UK, sort of minor public school and then into medical school. In the old days when it was in the 80’s. I had a fabulous childhood, going all over the place, seeing lots of things, being exposed to lots of different cultures. I think it remained with me all my life. I never really feel a foreigner in a foreign land. That's nice. That's really unique and it's been marvelous being able to tie in the passion for global health with my upbringing as well. So, yeah, I had a wonderful childhood.

Dave Johnson: Would you mind expanding on your medical training, Richard? Tell us a little bit about that.

Richard Sullivan: Yeah, so when I, when I went to medical school in the UK, we were still running the old system. And by the old system, I mean, you know, these small medical schools with entries of, you know, 70, 80 individuals, particularly in London, you had that St. Mary's Hospital Medical School, which is where I went, Charing Cross, Guy’s, St. Thomas', and they were all individual medical schools. Now, most of these now have merged together into these super medical schools. But certainly when I went to medical school, I'll be absolutely honest with you, I wanted to be a vet to begin with, but actually discovered I wasn't bright enough to be a vet. It was harder to become a vet than it was to become a doctor. In my day going into medicine, and people listening to this, or some people who understand the A level system in the UK will recognize if you're offered a BCD, that's quite low grades to get into medical school. So I went to Mary’s, to be absolutely honest with you, because I heard that they took people that played rugby, and I came from a rugby-playing school. And sure enough, 90% of the interview was based on my rugby prowess, and that was St. Mary's Hospital Medical School. So it was wonderful.

And we'd already had people going there who were big rugby players. And again, it was, I remember thinking to myself, am I making the right decision here? But it was interesting, as soon as I went into medical school, I realized that was the life for me. I had done myself a favor by not going into veterinary science, which I would have been awful at. We had six years of very, very intensive pre-medicine, the classical medical rotations, and then that movement into the old schools of pre registration house officers, registrar jobs. We were quite an early stage. I kind of slightly went off-piste and started doing more academic work. Interestingly, most of my academic early days academic work was not in health policy and research. It was actually in very hard core cell signaling. So my doctorate was in biochemistry, and we worked on small GTPases, calcium-sensing proteins.

There were some really extraordinary heady days, and I'm talking here about the early nineties and the mid-nineties of tremendous discovery, real innovation. I was at UCL at the time, but mixing and matching that up with a sort of surgical training, and again, surgical training in those days was pretty classical. You went into your general surgery, then sort of specialized. It was really, really interesting but it was full on. I mean, you spent your entire life working. Morning to night so these were the days of 100 hours week rotations. You were doing one in twos, one in threes. That's every other night and every other weekend on call. It was incredibly intense, but there was a lot more diversity and plasticity in those days. You could dip in and out of medicine because of the way you were chosen and how you were recruited. So it suited my personality because I liked moving around and doing different things and that sort of took me through, really until the late 1990s.

Pat Loehrer: You became a urologist, right?

Richard Sullivan: That's right. Exactly. So I trained up until the late 1990s, it was all pretty standard, I would say. And then I decided I was bored and moved into the pharmaceutical industry and I went to work in for Merck Damstadt at the time, which was relatively small. I was going to say family owned, but it was quite family-owned pharmaceutical company that was just moving into oncology. And because I'd done the background in cell signaling and cell signaling was really the backbone of the new era of targeted therapies, this seemed like a great move. To be absolutely blunt with you, I didn't last very long, less than a couple of years, I think, mainly because I just found the whole environment way too constraining. But what it did provide me with was a springboard to meet the wonderful late Gordon McVie, who I met at a conference. And he said to me, ‘You're absolutely wasting your time and life by staying in the pharmaceutical industry. Why don't you come out, get an academic job at University College London and become my head of clinical programs?” - for what was then the Cancer Research Campaign. This Cancer Research Campaign and the Imperial Cancer Research Fund were the forerunners of Cancer Research UK. So, you know, this was an offer that was too good to be true.

So I jumped ship immediately, went back into academic life and joined CRC. And really the next ten years was this extraordinary blossoming of the merger of CRC with the Imperial College Research Fund, the creation of Cancer Research UK, and that was Paul Nurse, and obviously Gordon and me, bringing that all together. And it was the heady days of that resurgence of cancer, the importance of cancer care and research in the UK. And coupled with that, of course, it was the blossoming of my interest, really then into the global health aspects of cancer, which really, Gordon, people like you mentioned already, the late, wonderful Peter Boyle, all those individuals were already engaged in and they were the ones that really kind of catapulted me into a more international scene.

Dave Johnson: Did you know Dr. McVie before you met him at this conference, or was it just a chance encounter?

Richard Sullivan: No, he actually met me via John Mendelson, because John had picked up a paper I'd been writing on basically the very early versions of Rituximab that we were working on and we were looking for pharmacodynamic endpoints. And of course, one of the things I noticed with the patients is they were getting all these skin rashes on their faces, and I thought, that's terrific. Just seemed to be the skin rashes seemed to be together with those individuals that had better responses. And I remember writing this paper for Signal, which was a kind of relatively minor journal, and I think it was John Mendelson who picked it up and must have mentioned something to Gordon. Gordon hunted me out down at a particular conference, said, "How on earth do you know about this, that you're not anything more than a surgeon?" He was absolutely right about, goodness sake, what do you know about pharmacodynamic endpoints, and I kind of had to sort of confess that I've gone kind of slightly off-piste by doing biochemistry and cells signaling and working with these extraordinary people. And that's how I essentially met Gordon. He was very good for spotting slightly unusual, eclectic human beings.

Pat Loehrer: I'm very curious about the intersection of your work and how you got into the British Army and Intelligence with medicine and how that even may continue even today. So explain that story, that part of your life a little bit to us.

Richard Sullivan: Yeah, it was very early on, as I went into medical school, one of the key concerns was making money. I looked around for ways of doing something interesting to make money, and most of the jobs on offer were bar jobs, et cetera. Then I thought, what about the Territorial Army, which, in the early days of the 1980s, was, and still is, a very large component of the UK Armed Forces. So I actually joined the Royal Army Medical Corps, as you would expect for someone going into medicine. I thought, okay, I'll join the Royal Army Medical Corps, and I was a combat Medical Training Technician, et cetera. So I went along, signed up, and I think I was about three months into training when I was at a place called Kew Barracks and some chap came up to me and handed me a little bit of paper. It said "Intelligence Security Group" and gave a phone number. He said, "This is more your line of work. Why don't you give them a ring?"

It was interesting because, in those early days, they were looking for analysts who could work on lots of different areas. In those days, most of the work was domestic.. Of course, there was counterterrorism with Northern Ireland, but there was also the Soviet Union, and the fallout from the Warsaw Pact, so they were still actively recruiting into that area. There are lots of details I can’t talk about, but it was relatively, to begin with, quite hard work and low level. It was a lot of learning foreign equipment recognition. It was what we consider to be standard combat intelligence. But the more time you spend in it, the more interesting it gets.

One of the areas they were looking to recruit into, which I didn't realize at the time but only later, was bioweapons and biosecurity. They needed people who understood biotechnology and the language of science, and who could be taught the language of infectious disease on top of that. That is quite a difficult combination to find. It’s very easy to teach people trade craft and intelligence, it’s very hard to teach them subject matter expertise. And they were really missing people who specialized in that area.

It was interesting because it was still a relatively open domain. There was still a lot of work going on in the counterterrorism front with biological weapons, and a lot around the Verification of the Biological Weapons and Toxin Convention. And it was an interesting, and I'd almost say parallel life. But your medical knowledge and the scientific knowledge I had already gained and was gaining was what was being looked for. So that was very early on and it has expanded over the years. More and more now we talk about health security and intelligence so that goes beyond what you would consider classic medical intelligence or Armed Forces - this is more about putting together the disciplines of intelligence with the securitized issues of, for example Ebola. That is a classic example. The big outbreaks in West Africa, the DRC, these are sort of the classic security intelligence issues - even COVID 19 for example - and mostly around the world, what we've seen is the intelligence apparatus taking front and center in that, whether you're looking at states like South Korea, et cetera. So I've moved more into that, and we do a lot of work and research into this as well. So we look at, particularly now, how to improve human intelligence in this area, the pros and cons of signal intelligence collection. And we go as far as to kind of ask sort of deep ethical and moral issues, for example, about how far should these sorts of apparatus of state be applied to public good issues like health. Because at the end of the day, when you're talking about the armed forces security sector, their primary job is for defense of the realm. So applying them in other areas obviously comes with a whole load of moral and ethical challenges. So, yes, it's been a fascinating journey, which, as I said, it extends all the way back to the late 1980s. It's been both complementary and different.

Dave Johnson: So, Richard, there's so many things in your resume that warrant exploration, but you served as Clinical Director of Cancer Research UK for nearly a decade. What was that experience like, and what accomplishment are you most proud of?

Richard Sullivan: It was an enormous privilege. In your life, you always look at some jobs and you think, “How lucky I was to be there at that time with those people.” I think, first of all, enormous respect for the people that ran both Cancer Research Campaign, Imperial Cancer Research Fund – I mean, Paul Nurse and Gordon McVeigh, Richard Treisman – I mean, some extraordinary people who were leading both of these charities. And so to be there at that moment when they both came together, but more importantly as well, they had this most amazing global network of literally the illuminati of cancer research, spanning from basic science all the way through to epidemiology, public health, health systems. And in those days, of course, those individuals would come on site visits to the UK to look at the different units and evaluate them. So you can imagine when you're bringing those sorts of individuals across, you get a chance to go out with them, go drinking, talk to them, learn about their research, and also learn about the extraordinary breadth of research that was there in the UK. So you're condensing almost a lifetime's worth of learning into a few years. It was an absolute privilege to have been able to serve the community like that.

What I'm most proud of? Gosh, I like to think I suspect that most proud of trying to help a lot of the fellows get through to where they were going to actually get the most out of their careers. When I look back, there are lots and lots of names of people who started at a very early stage with funding from Cancer Research Campaign or the Imperial College Research Fund, who are now very, very senior professors and global research leaders. And I like to think that we did a little bit to help them along that way and also help to support individual research programs actually reach their full potential. Because I think research management and planning is often overlooked. People think of this as very transactional – it's not transactional. It's an incredibly important, serious discipline. It requires very careful handling to get the very best out of your research ecosystem. You've really, really got to get under the skin and really have a clear view of how you're going to help people. So I think that's what I'm most proud of – is the individuals who made it all the way through and now these great leaders out there.

But it was also, let's be honest, it was halcyon days. Great innovations, great discoveries, new networks growing, incredible expansion of funding in the UK, in Europe, in the USA. They were very, very good days. And it was, as I said, it was a real privilege to be there almost at the center for nearly a decade.

Dave Johnson: Let me follow up on that, if I may, just for a moment. You have had such an incredible influence. What characteristics do you think are most desired in a cancer investigator? What sorts of things do you look for, especially when you're thinking about funding someone?

Richard Sullivan: Creativity. I think creativity is really important. We talk about the word innovation a lot, and it's an interesting engineering term, but creativity is that spark that you can see it in people, the way they talk about what they're doing. They have this really creative approach. And with that, I think you have to have the passion. Research careers are long and difficult, and I'd probably suggest there's probably more downs than there are ups, and you have to have that passion for it. And I think along with that passion is the belief in what you're doing – that first of all, you have that belief that actually drives you forward, that what you know you're doing is good work, and that you're really dedicated to it. But obviously, hand on heart, when you're looking at researchers, it's that passion and that creativity.

I think it's a brave person to judge how any person's career or program is going to go. I don't think any of us are prophets. Even in our own land. We might be able to see slightly into the future, but there are so many elements that make up “success”. It's funny when I look back and I think those who've been successful, it's people who've also been generally happy in their lives. They've found their careers in whatever shape or form, fulfilling, and they've generally been happy human beings, and they've managed to create a life around research which has given them meaning.

Pat Loehrer: Richard, you have reinvented yourself a number of times – this transition of going from like a basic scientist, a surgeon, moving into public policy and global policy. Tell me a little bit about the journey that's been in terms of academics. How do you learn? What were the transition points in each of these things to get you now to be, as I mentioned before, kind of the key person for Lancet’s commissions to somebody who was a rugby player?

Richard Sullivan: I suppose if you're being mean, you say, he clearly gets bored easily. But it's not that. Actually, I'm not very instrumental about life either. I mean, there are many people you will meet who have got their lives and strategies mapped out. They know they're going to do X next year, Y the following year. And for me, it's never been like that. For me, it's that excitement, that creativity of working on new and interesting things, but also knowing when you've run out of road in a particular area, where it no longer gets you out of bed in the morning, where you no longer feel happy, where you no longer feel you’re contributing. All of us talking today have the great privilege of having choice about our lives, about what direction our lives should take. And it's not a privilege one should squander lightly because many people do not have choices about their lives. It's all about chance. And having that choice to be able to move into different areas is really important because I said you can stick in the same thing because you think you have to. And you can become an unhappy, miserable human being. And that makes you a miserable researcher to be around. It makes you a terrible doctor. Probably makes you a terrible person, actually, generally, if you're having a miserable life.

So finding new things, that really you're passionate about how you do it, there's no shortcut in this. It's hard work. Readily admit I went back to law school of economics, retaught myself lots of things. There are no shortcuts for. Deciding if you're going to a new area is learning, learning, practice, practice, practice, and just doing the hard work. I think that's an ethos that was probably drilled into us quite early anyway in medical school, because that's how you approach medicine. That's how you approach science when I was growing up. And it was that idea of humility that you can never have enough learning, you will always learn off other people. That's probably what drove me and how I've managed to change and as I say, who knows what the future is? I don't know. Maybe one day I'll think about doing a bit of poetry.

Dave Johnson: Your comments about happiness and work resonate with Pat and me. I think we both feel like humor is really important for happiness and career success. And, you know, Osler once said, “The master word of medicine is work.” You can't get around that. It is what it is. And I think you just reaffirmed that.

Well, this concludes part one of our interview with Richard Sullivan, professor of Cancer and Global Health at King's College, London and director of the King's Institute of Cancer Policy and co-director of the Conflict and Health Research Group. In the second part of this episode, Professor Sullivan will speak about the progress of global health, especially in conflict areas, and the need for young people to enter into the world of oncology and oncology research.

Thank you to all of our listeners for tuning into Oncology, Etc. This is an ASCO educational podcast where we will talk about just about anything and everything. So if you have an idea for a topic or a guest you would like us to interview, please email us at education@asco.org. Thank you again for listening.

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Getting into oncology requires a lot of education and training. How does one deal with the success and stress of such a journey? In Part Two of this ASCO Education Podcast, moderator Dr. Aakash Desai – fellow at the Mayo Clinic along with guests Dr. Madison Conces – fellow at Cleveland Clinic, and Hematology/Oncology fellowship program directors Dr. Lori J. Rosenstein (Gundersen Health System) and Dr. Deepa Rangachari (Beth Israel Deaconess Medical Center) explore the past, present, and future of Oncology Training. They discuss the transition from training to clinical practice (1:02), how to stay current with new treatments and guidelines (6:39) and what oncology training should look like in the future (12:12).

Resources:

ASCO Education Podcast: Cancer Topics - Burnout in Oncology: Trainee Perspective

ASCO Education Podcast: Cancer Topics – Career Paths in Oncology (Part 1)

ASCO Education Podcast: Cancer Topics – Career Paths in Oncology (Part 2)

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Learn more at education.asco.org, or email us at education@asco.org.

TRANSCRIPT TO COME

View Details

Getting into oncology requires a lot of education and training. How does one deal with the success and stress of such a journey? In Part One of this ASCO Education Podcast, moderator Dr. Aakash Desai – fellow at the Mayo Clinic along with guests Dr Madison Conces – Hem/Onc Fellow at Cleveland Clinic, Dr. Lori J. Rosenstein, Hematology and Oncology fellowship program director at Gundersen Health System and Dr. Deepa Rangachari, fellowship program director explore the past, present and future of Oncology Training. They discuss their motivation of pursuing oncology (1:55), the rewards (5:51) and the stresses (8:44) of fellowship, coping with the loss of a patient (12:52) along with methods to keep up with advances in the field (19:50).

TRANSCRIPT

Dr. Lori Rosenstein: What I learned in fellowship is completely different than what I know now. And I passed the Boards, I did well on the Boards, I stressed about them, but the Boards do not define who you are as a cancer doctor; they are just a step along the way. And so, really, I am much happier if a fellow has that thought process and that self-reflection and knowledge of what they do and do not know; they're going to be amazing when they're done.

Dr. Aakash Desai: Hello, and welcome to the ASCO Education podcast. My name is Aakash Desai, and I'm a Hematology/Oncology fellow at Mayo Clinic in Rochester. I will moderate this episode focusing on how Oncology training has changed in the last couple of decades.

Do you think today's fellows have it easier with the electronic medical records, or is it rather harder with that? Given the much bigger pool of treatments to choose from and the constant stream of information, is it more difficult for Oncology fellows in this day and age? On a personal level, what challenges persist? How might we reimagine Oncology training in the future?

To discuss all these questions and more, I'm joined by current Oncology fellow Dr. Madison Conces from Cleveland Clinic and two former fellows; Dr. Lori Rosenstein, a Hematology/Oncology Fellowship Program Director at Gundersen Health Systems in La Crosse, Wisconsin, and Dr. Deepa Rangachari, a Medical Oncologist, Assistant Professor of Medicine at Harvard Medical School, and Director of Hematology/Oncology Graduate Medical Education at Beth Israel Deaconess Medical Center in Boston.

As we are all colleagues, I'm going to refer to everyone by their first names, if that is okay. And so, I'm going to pose my first question to Madison. Question is, what motivated you to get into Medicine and specialize in Oncology? And then, I will have Lori and Deepa answer the same.

Dr. Madison Conces: Thank you, Aakash, for having me join this conversation today.

So, I'll kind of answer the Medicine and Hematology/Oncology portion at the same time. I was in college when I actually was shadowing Dr. Pat Loehrer at IU over the summer, and I worked in the lab while also doing clinic with him one day a week. And I think being able to see the science and working to improve patient care while also witnessing the patient interactions, and the relationships, and the trust between the physician and the patient, is something I really admired, and that really drew me. So, I think that's kind of when it first sparked.

And then, just during residency in medical school, my recurrent interactions with Oncology patients is what kind of definitively made me go that route.

Dr. Aakash Desai: Lori?

Dr. Lori Rosenstein: So, I was a little bit slow to figure out what I wanted; I thought Neurology or Internal Medicine, and then I had no plans after that, and I really debated a long time. You know, ultimately, now that I'm a Hematologist-- and this totally makes sense with my personality and everything else, what I love about Hematology is the mystery and the detective work that happens. It also happens in Neurology. That's what I liked was figuring out where the lesion was based on your exam. But in Hematology, we figure out where the lesion is, and then often, we can fix it. And to me, that was really exciting.

So, I joke with my fellows all the time that I'm a blood detective, and the best thing ever happened yesterday - is that one of my fellows knocked on my door, and she came in, and she said, "Today, I'm a blood detective. I figured this out." And it's super cool. I think that's a really fun part about Hematology and Oncology.

Dr. Aakash Desai: How about you, Deepa? What are your thoughts on this?

Dr. Deepa Rangachari: My inspirations mimic those shared by my colleagues already today. At a very young age, a very dear family friend whose mother is a Pediatric Hematologist/ Oncologist, and I think I was immediately enthralled by her demeanor. And later in life, as a medical student, I had the opportunity to shadow her and really see her in action. And I think she really embodied all of the things that I always considered in terms of being a consummate physician.

And I think, on a daily basis, what inspired me to become an oncologist is, really, what to this very day holds me deeply, devotedly to this lifelong career which is the ability to exhaust and frankly apply all of my intellectual, emotional, and interpersonal skills to achieve the best possible outcome for a patient and their loved ones in what is often very challenging and/or devastating circumstance.

The inspiration, in many regards, from years ago is the ongoing inspiration. Even today, I'm very much informed by early experiences, seeing such folks practice in a way that I felt was truly the art and science of Medicine.

Dr. Aakash Desai: I guess the next question I would want to ask both of you is: What is the most rewarding part of the fellowship? Lori?

Dr. Lori Rosenstein: I hate to say this; I'm the oldest one of the group here, so I've been here the longest since I did my fellowship.

But I will say, the best part of being a Heme/Onc doctor is the longitudinal relationships that you develop with those patients over time and the difference that you make in people's lives in the really short amount of time that sometimes you're with them. I think fellowship-- we'll talk later about the stresses and difficulties of fellowship - but knowing that you're in that final stage, you know, everything up until fellowship is, "I'm doing this to do the next thing. I'm doing this to do the next thing."

There is really not a next thing after fellowship. That is what you're going to do. And I think that's the most exciting part - everything you're doing is for that purpose. You know, once you pass the Boards.

Dr. Madison Conces: I agree with what Lori just said, and I think as someone who's in their final-- I'm a third-year Heme/Onc fellow right now, and I would agree where you're just like, "This is it. This is what I am going to do for the rest of my life." And there's excitement with that, there is some little bit of anxiety, I guess, under it, but there's a lot of excitement with it, and I think-- like when I sit and talk with patients now, I know we keep kind of reiterating a human connection, but I feel like at least as a fellow now, I'm able to explain things or understand things in a way I didn't before.

And I feel like that makes me even more connected in their care, and also in a way kind of, I wouldn't say I understand, because I'm not in their position, but I'm able to, I feel like, meet them closer to the middle than I was before. So, I really appreciate that, I guess, growth I've had during fellowship, that's allowed me to, I think, be closer with patients and their journey.

Dr. Lori Rosenstein: Madison, this is Lori. So, I was just going to ask based on that; I see externally as my fellows are going through their training, there's usually just this moment where I can suddenly see that it's kind of clicking, and, you know, the hardness of first becoming a fellow all of a sudden, starts to get easier; and they really start to fly - they start to do fantastically. Do you remember if that was something that you experienced?

Dr. Madison Conces: So, I was on Oncology consults August of my first year of fellowship, and I am September of my third year of fellowship. And I just noticed how quick I can be. Like in July, I was like, "Oh my gosh, I'm a third year. How am I going to be ready for next year?" But now that I'm on Oncology consults, again, seeing every type of solid tumor malignancy, specifically for solid tumors, obviously, but I see the pace I'm going compared to before; I know the depth of knowledge I have is much greater, I kind of am more aware of my deficits of knowledge.

So, I would say, just even in the past week, I've noticed, like, "Wow, I've definitely gotten better." I don't know if I'd call that an aha moment, but I've definitely had that perception of myself in the past week.

Dr. Aakash Desai: Yeah. I think, as a third-year fellow myself, I agree. I think that's, you know, very rewarding. Essentially, recently, I was giving a talk to our first-year fellows as a primer talk on lung cancer. And, you know, I realized like some of this comes so naturally to me now, and I remember myself being a newly-minted, first-year fellow, and just thinking like, "How am I ever going to make sense of all this data and everything that's coming out?"

That's also, I think, the part of the personal growth - you grow as a fellow. I think it's also very rewarding, as the fellow that I've found.

So, with that, I think one other thing that's been, you know, obviously, more recently brought out is resident burnout, fellow burnout. Just in general, position burnout has been the theme, and we are becoming very aware of this. And I think fellowship, being the training, it obviously has its own stressors. So, what are the most stressful aspects of fellowship that you've found? Tell us about the most stressful day you've had so far and how do you cope with stress and workload. And any tools or strategies that you would recommend to current fellows and other peers that would be useful.

Dr. Madison Conces: I would say, probably, it's twofold in terms of what's most stressful about fellowship; one is the information which you had already mentioned, Aakash, and I think with that, is kind of the research aspect and balancing that. Like, how do we dive into research and look into spaces that are unknown, if you will, and then at the same time, know the data of the cancers we're already treating?

I think the outpatient stressors are different from the inpatient stressors in a way because I think during inpatient, you're constantly engaged in these difficult situations patients are in, and there's not much of a break. And so, I think sometimes, not that we don't have difficult clinic days, but I think there can be a little bit more emotional drainage, and I think, in terms of trying to deal with that stress, like you mentioned-- I'm a distance runner. And so, even when I'm on service, I actually still make time for a run, even if it's just a quick run in the evening, or get it in before work if I'm on call that night, or something, sometimes just some light weights. That's been my crutch, if you will. I've done that all my medical training; I've been running for most of my life. And I've been very deliberate and diligent about continuing that, and I think, somehow, it kept my head above water some days. I do wonder what else I could do to help because I definitely have days where I feel like my running isn't enough.

I think, as many people have felt since the COVID pandemic started, there's been a real struggle with burnout.

Dr. Aakash Desai: Lori?

Dr. Lori Rosenstein: Yeah. I think there's a lot that's stressful about Heme/Onc fellowship, and as a Program Director, you see the cycle. You know, first-year fellow comes in; they're brand new. That first six months, as I said previously, is just so, so hard, and you, as a program director, want to help. You know you want to get them through that. Because, you know, many people are coming in, it's a new hospital, it's a new system, it's new diseases, it's working in the clinic instead of the hospital-- most Internal Medicines are very, very hospital-focused. And then all of a sudden, you're in a clinic where it's almost all outpatients, and you don't know how that works, even though you should.

You know, like people think, "I could be an internist; I could be done.” And yet all of a sudden, I'm right back at the bottom of the barrel, so to speak. You know, not knowing how to do anything.

And so, that first six months for sure is really stressful because you feel like you've had autonomy; when you're a third-year resident, you're ready to go out, and then boom, you don't know what you're doing again. And so, at the same time, you are a young adult who often is having families, thinking about settling down, buying homes, you know, growing up, and that just adds to all of the stress because you have the stress at work, and then potentially, stress at home.

For me, I had my first child when I was a resident and then had my second as a third-year fellow. And so, I had these different stresses as I was going through my training. You know, some of my fellows have had parents die while they've been in fellowship or parents that they're helping to take care of.

So, not only are us older people in kind of the sandwich generation, but I think younger people in fellowship are seeing that as well. So, yeah, I think there's a lot going on that can make it challenging.

But my encouraging part of it is that it gets easier. You start to figure out where you can find the information that you need, how to make things happen, and there's just this tipping point where suddenly it becomes easier, and then I see that they're back having fun again. You know, that, "Oh, this is such a really interesting disease, and I've never seen this presentation before, and I looked in the literature, and there's only three cases."

You know, that passion and that excitement for finding new things, or, you know, "I wasn't sure if this chemo was going to work, and I gave it, and they're back today, and they are so much better." Just that excitement and passion. It's so wonderful to see as a program director.

Dr. Aakash Desai: The other thing is also; I feel like the stresses are different as you kind of evolve through your fellowships. So, I think, as Lori very rightly pointed out, like the first year is, you know, just getting used to the information, the flow, and everything.

But what I've found particularly challenging is, as you enter the second and the third year, and when you have patients that you continue to follow, just by the nature of the disease and the field that we are in, you will end up having some patients who you lose along the way. And I think that dealing with it emotionally; I think because during the first two years of your fellowship, you know, you meet them every few weeks, you kind of get attached to them, and you know what their life is like, you share part of your life with them. How have you found your way of coping with loss of the patients that you kind of have a deep connection with? I think that's part of the stressful aspect of, like, later years of your fellowship, I feel.

Any insights on that, Lori? I mean, you've obviously been doing this much longer than me and Madison. How do you deal with this kind of loss and keep going every day, even with the same enthusiasm?

Dr. Lori Rosenstein: Yeah. I think that absolutely is a really challenging part of our field, but it's also part of the blessing of our field - is that we are there, and we can help negotiate people through difficult times. And if we're doing this well, we have seen this coming. We have been able to prepare people; we've been able to make sure that we're honoring the things that are important to them at the end of life, and we're working to make sure they're not in pain and that they have their family members near them.

And so, for me, that's always that rainbow at the end - is that I was able to assist them in this process. We all know we can't stop death. We may, you know, fool ourselves into thinking this carbo/etoposide is going to change the world for this patient. But I think being realistic about what we can and cannot do. For me, having a great conversation with a patient and their family and knowing that I've helped them, even if the end result is not that they have another 20 years to live, is super meaningful. And I think most oncologists that can do this for a long time find the value and the meaning in that part of their job.

I think if you're constantly trying to stop death and trying to, like continue chemo till the very bitter end, this could be a very draining job.

Dr. Aakash Desai: You know, and more and more, we are realizing the importance of supportive care in Oncology. And I think what you just pointed out is that, you know, improving someone's quality of life, even for two months, is also very rewarding in its own way. So, thank you for saying that.

The next question I have is especially geared towards you and Deepa for fellowship program directors: How has Oncology training changed since you were a fellow? And is training for current fellows harder or easier do you think?

Dr. Lori Rosenstein: You know, any program director who trained a long time ago will give you the woes of, you know, ‘I had to walk both ways with no boots in the snow’.

I think that probably the biggest change since I was a resident is work-hour restrictions, which came sometime during my residency. So, I was a fellow when there were work-hour restrictions. But to be very honest, in fellowship, you almost never are reaching that 80-hour work week like you would've been when you were on an ICU rotation in Internal Medicine. Most of my fellows, you know, they log their hours every week, and we're somewhere around 40 to 45 hours a week, depending, you know, there's going to be times where it's busier.

So, I think the work hours are less of an issue, but that doesn't mean it's easier. And I think now, the most difficult challenge is, all the new treatments, all of the options-- it used to be-- we had two choices; you could do this, or you could do this. And now, there's all these nuances, and nuances are very challenging when you're first learning. You know, you can see this study, and it was this compared to this, and option A was better. But then you would talk to your attending, and they say, "Well, option A was better unless you were from some esoteric country," and then you know you did worse. So, you start to really piece apart, and you know, you gain your basic understanding, but then start to try to apply that to your patients. And that is, I think, a very big challenge.

Dr. Aakash Desai: How about you, Deepa? What are your thoughts on this?

Dr. Deepa Rangachari: I think it's become harder in that it has become incredibly more nuanced than incredibly more sophisticated. Three things, in particular, come to mind; one's are the burgeoning evidence basis for what we do and the prospects for advancing our knowledge and understanding and thereby have better interventions that's certainly been a seemingly explosive growth in our knowledge and understanding, especially considering the humble origins of our field. They work daily with colleagues and friends who remember those days when Heme/Onc was sort of an esoteric field of people whose methods were considered bizarre at best, and that's absolutely not where we are anymore. It's an incredibly exciting time, so a lot of information to keep up with.

Secondly, one of the things that maybe we didn't really appreciate at the time was true before but is increasingly true now is the importance of recognizing your role as the leader of a very sophisticated interdisciplinary team. Thankfully, I think this is true for all patients with any illness, but thankfully, in our disease area, care by an expert village is really the new norm, not the exception. And sort of learning how to function in those interdisciplinary teams in an incredibly collaborative and productive way across the spectrum of a patient's care and needs is incredibly nuanced, more so than ever before. And something that fellows, at the earliest instance of their training, really need to learn to be agile with. So, I think that's something that is also both a sign of progress, but also an added layer of nuance and sophistication.

And I think the final thing is that there are so many diverse ways in which someone can have it truly impactful and fulfilling career within Heme/Onc, and I think this makes fellowship also that much more exciting and complicated, nuanced, really trying to understand within your career span, what is the pathway or the different pathways, honestly, that you may choose to train and prepare for and conduct yourself is really dizzying.

And I think we really are expecting a lot in terms of our fellows these days to sort of be willing to understand those options and understand which options are most meaningful to them and then prepare in a very deliberate and rigorous way for those specific career interests. So, kudos to all of you. You guys are doing an incredible job; you are the future of our field. And those of us who run programs, direct such programs, we really have a continued challenge and inspiration to meet your needs.

Dr. Aakash Desai: The field is moving so fast that I can say, like when I joined fellowship in first year compared to now, I think there is a lot more treatment options. And I think as fellows also, it's so difficult to keep up with this, you know, constant stream of information. So, Madison, how do you think things have changed since you joined fellowship, and how do you envision yourself, you know, resources to use to kind of keep yourself updated?

Dr. Madison Conces: I would agree with both of you. It's definitely changed. It's also interesting because it's not always the addition of treatments; it's sometimes showing that adding this extra drug does nothing. And so, all of a sudden, you've now changed the paradigm again for how you treat that patient.

And I think for me, what I've found during fellowship is-- and maybe Lori would enjoy this part, but the thinking of it, right? So, even Hematology, I definitely think of as the puzzle, but in general, all these patients, there's something about them, whether their tumor's genetics, or the family history, or any of their germline mutations they have. So, there's always this kind of; every patient is very specific.

And so, I think what has helped me, at least during fellowship, is in clinic, to go through that, in that mindset with the staff I'm working with. And I think sometimes, at least, I've been fortunate to have staff who do a great job of making sure I'm thinking of everything, which is like, "Oh, if this doesn't work, what are you going to do next?", which makes me think about, "Well, what do we know about the patient? What do we know about their tumor? What are the other options?"

I'm someone who learns by doing, which I think is many of us at this point, and so, I think the constant feedback from staff of kind of pushing us to think on our own is going to be helpful in the long term, rather than expecting us to come in remembering, you know, every part of the NCCN guidelines, because those are going to change as well.

So, we've really got to be able to think through these patients' cases like puzzles, and also, you know, a lot of these patients don't read these textbooks a lot of times.

Lori was talking about seeing the excitement of her fellows. Again, you know, yesterday I saw a patient who has paraneoplastic nephrotic syndrome. It's like these things; we have to be able to keep pace with essentially our patients in their pathophysiology. And the more we learn, the more kind of breath that's going to be. It's going to be wider and wider in terms of what we have to know, and I'm not sure knowing it all is going to be the way to go. And for me, I try to know the basics, and then beyond that, really look at the patient. And instead of thinking about every treatment for that whatever cancer of the patient, look at, "What do we already know about it, and what can I go from there?"

Dr. Lori Rosenstein: That's so interesting, Madison. And Deepa and I had talked about this; you know, as program directors, my goal for fellows is that they learn how to think about cancer, and how to have a really regimented way of going through a new patient, and thinking through, "Do I have the diagnosis? Do I have the stage? Based on those things, what do I know about the patient and their disease to make my treatment plan?" And that's the same for every cancer. Essentially, you're going through this regimented process.

If I have a fellow that I know can think through a cancer, to me, it doesn't matter if they know that Merkel cell is associated with the Merkel polyomavirus virus. They may never see a Merkel cell, or they may see it once. So, that regurgitation of information that you are so used to doing for Boards and for tests, to a program director, is really so much less important than, "Can you think through the process? Can you find the own holes in your knowledge base? And then, can you find where to fill those holes so that you can take great care of patients?"

If I could tell any first-year fellow coming in, don't panic about your knowledge base because what I learned in fellowship is completely different than what I know now. And I did well on the Boards, I stressed about them, but the Boards do not define who you are as a cancer doctor. They are just a step along the way. And so, really, I am much happier if a fellow has that thought process, and that self-reflection, and knowledge of what they do and do not know; they're going to be amazing when they're done.

Dr. Aakash Desai: This kind of reflects how the program directors in our field actually, you know, are thinking beyond just like, "Oh, you need to score good on the Boards," because they realize the importance of thought process, and how to come up with treatment plans.

So, thank you, Lori. I think this is phenomenal, and I'm sure all the fellows listening to this podcast will be delighted to hear what you just said.

Dr. Lori Rosenstein: Now, you still have to pass the Boards; that's still a key component. But I think if you polled program directors about what we think about Board passing, most of us would say it's probably sixth or seventh on the list of importance.

Dr. Madison Conces: Yeah. I would actually add onto that. We've been talking about thinking through processes, and through these cases, and using, you know, the thinking process more than just memorization. And I think also in fellowship, we are trained to also have these conversations with patients, right? Because it's not always what would be the right answer when we think about it in a treatment sense, but if that doesn't match what the patient wants, then it's not the right treatment. And how do we adjust that based on what's in the patient's best interest or what the family wants, depending on what the situation is, obviously? I think fellowship is about this critical thinking, but also in the context of the fact that we're taking care of this human being in front of us.

Dr. Aakash Desai: Well, this concludes part one of our discussion on the past, present, and future of Oncology training. My guests have been Dr. Madison Conces, Hematology/Oncology fellow at Cleveland Clinic, Dr. Lori Rosenstein, Hematology and Oncology Fellowship Program Director at Gundersen Health System, and Dr. Deepa Rangachari, Fellowship Program Director at Beth Israel Deaconess Medical Center.

In the second part of this episode, we will explore the different ways to stay current with new treatments and guidelines, as well as our guests' insights into how Oncology training should look like in the future.

Thank you to all of our listeners for tuning into this ASCO Education podcast. If you have an idea for a topic or a guest you'd like to see on the show, please email us at: education@asco.org.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click "Subscribe." Let us know what you think by leaving a review.

For more information, visit the Comprehensive Education Center at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Resources: ASCO Education Podcast: Cancer Topics - Burnout in Oncology: Trainee Perspective ASCO Education Podcast: Cancer Topics – Career Paths in Oncology (Part 1) ASCO Education Podcast: Cancer Topics – Career Paths in Oncology (Part 2)

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org

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Vaccine development is a tremendous scientific breakthrough. In Part Two of this ASCO Education Podcast episode, Dr. Doug Lowy, Principal Deputy Director of the National Cancer Institute describes overcoming the hesitancy of taking vaccines in the era of Covid (:57), the scientific impacts of other nations like China (3:54), the importance and the standing of the NCI (5:10) and the future of oncology (10:36).

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global Oncology and Health Equity, at Indiana University. I'm here with Dave Johnson, a colleague and friend, and Medical Oncologist at the University of Texas Southwestern in Dallas, Texas.

This is the second half of our Oncology, Etc., conversation with Principal Deputy Director of the NCI, and Chief of the Intramural Laboratory of Cellular Oncology in the Center for Cancer Research, Dr. Doug Lowy.

In part one, we chatted with Dr. Lowy about his interest in cancer, which was developed through his personal academic experiences, including that of his parents, as well as his groundbreaking work on the HPV vaccine with Dr. John Schiller.

Today, we're going to continue our conversation with Dr. Lowy by asking him about overcoming the hesitancy of taking vaccines in the era of COVID.

Dr. Doug Lowy: Pat, it's very difficult. There was some vaccine hesitancy when the HPV vaccine was introduced initially. My view is that the people you want to speak to and with, are the people whose minds can be changed. So, I don't try to change the minds of people who are opposed to vaccination for one reason or another, but instead, try to talk with people about evidence, but directing it towards those people whose minds potentially can be changed.

A big advantage with the HPV vaccine is that this has been going on over a number of years. With COVID, everything happened in a greatly truncated way. So, the vaccine was introduced less than a year after the pandemic. But concomitant with that was a lot of vaccine hesitancy, and I think that that's going to be difficult to overcome.

What I have really worried about is whether the vaccine hesitancy associated with COVID might extend to other vaccines and not just to the HPV vaccine, but to childhood vaccines, et cetera. The national data for 2020 and 2021 for HPV vaccination is almost counterintuitive and provisionally reassuring, both. Compared to 2019, the last full year without the pandemic, the number of people being vaccinated with the HPV vaccine went up between '19 and '20, and between '20 and '21, went up again. So, at least by that metric and through that time, it doesn't look as though the vaccine hesitancy associated with Covid is extending to the HPV vaccine, at least in the short term.

So, what we've seen between 2019 and 2021 is that HPV vaccine uptake among teenagers actually has gone up each year. So, at least in the short term, the vaccine hesitancy associated with the Covid vaccine does not seem to have extended to the HPV vaccine.

Dave Johnson: So, Doug, I'm going to shift gears just a little bit. I read recently, in Science, that China had overtaken the United States in terms of scientific publication and impact; and I'm wondering what you think about that, and what we need to do to retain our longstanding leadership in that role. Or does it really matter?

Dr. Doug Lowy: If China's research, if their quality is outstanding-- I mean, there's nothing wrong with another country making important contributions to biomedical research. I don't see this, per se, as a competition. Perhaps, it's because I'm just looking at it through the lens of cancer research, and we think that cancer research is much too big to be done exclusively through support of NCI, exclusively in the United States, et cetera. So, to me, if other countries are doing high-quality research that can help people all over the world with regard to cancer-

Pat Loehrer: -Let me ask you this, Doug, you've been at the NCI for 50 years. And I calculated that you've served under nine presidents, and of the NCI's 16 directors, you've served with 10 of them-

Dr. Doug Lowy: Really ancient. Thank you.

Pat Loehrer: -so, with all that, what do you think; one, about the importance of the NCI, and then also, we'll ask you a little bit about the reflections of the directors, and lessons learned from them, and maybe, some good stories. So, where do you think the NCI stands, and why is it important for the world, and for the country?

Dr. Doug Lowy: What's really important is the funding from Congress. It is long-term and sustained. Cancer research can't be done in two or three years. It just takes a while to do really high-quality cancer research. And what really counts, from my perspective, is you can rely on the government to be strongly supporting cancer research through the NCI.

In other words, private philanthropy is very important, but private philanthropy can decide, "Tomorrow we don't want to be doing what we have been doing." It's very much like pharmaceutical companies - they can decide that they're not going to be doing it. But it's almost impossible for us to say, "We are no longer going to support basic science research. Okay? We're not interested in investigator-initiated research," because, of course, we are. And that's the bedrock of development. We can't say, "We're no longer interested in doing clinical trials," because, of course, we are, because we can't make the progress that we need to make without clinical trials. We can't say, "We're not interested in doing implementation research," because it's one thing to have a new approval, it's something else to have it widely and equitably disseminated, and doing some kind of research with implementation.

Science is critically important, and this applies for prevention, screening, diagnosis, treatment, survivorship, all of these areas that NCI supports, and will continue to support. The proportion may vary from one year to another, from one director to another, but all of those areas are going to continue to be supported.

Dave Johnson: So, Doug, during your various tenures as the interim director, what program or programs are you most proud about?

Dr. Doug Lowy: Instead of programs that I'm most proud of, I would say that working with NCI staff is what enables the achievement. The mission of the NCI is just incredible, and virtually everyone on the staff buys into the mission; which is, to help people live longer and healthier lives through research-related advances in cancer. That's what people do. And the first time when I was Acting Director, was the first Cancer Moonshot, so I was involved in that. But tremendous amount of credit needs to go to the Obama administration for wanting to do it, to the Congress for its strong bipartisan support for the initial Cancer Moonshot, and to my NCI colleagues, and then extramurally, for everybody who really got on board and tried to do things.

So, this is very much a team effort, and it's not limited to NCI, you know, extramural colleagues are critically important to everything that we do.

Pat Loehrer: Doug, you've alluded to the fact that you've served under so many different presidents and directors, and they all have different leadership styles. If you were gonna be a mentor on leadership, what advice would you give to the listeners as to what makes a good leader, and perhaps, what makes a not-so-good leader too?

Dr. Doug Lowy: I think that there is a spectrum - there are some people who lead by intimidation, and some people who lead by example; and all of them can be effective leaders. My own view is that I like to lead by example because I really feel that that leads to very high morale. People who lead by intimidation may get a lot of work out of people, but it is nowhere near as satisfying as knowing that you are an extraordinarily, highly-valued member of a team and that the whole is greater than the sum of its parts. So, I think that having tremendous admiration and respect for the people that you work with, is absolutely number one, and number two, is listening to them.

You don't always need to do what they advise, but people really thrive on being listened to, and everybody wants to make a difference. And so, help them to achieve that goal. When they look good, you'll look good.

Dave Johnson: So, Doug, I'm attending on the general medical wards right now. Just got asked today by the medical students to give them some advice about the future of Oncology, and where did I think it was going. Before I go back and meet with them, I'd love to get your thoughts.

Dr. Doug Lowy: Well, the future of oncology is extraordinarily bright. On the one hand, we've made tremendous progress. On the other hand, there are still 600,000 people dying every year in the United States from cancer, and worldwide, the problem is even greater. But what's going to happen in the future is, we will understand the causes of cancer better, and so, that will enable us to prevent more cancers. I think there's going to be an enormous increase in the opportunities for screening, and to reduce either the incidence of cancer or increase the outlook for people with cancer, because asymptomatic cancer will be diagnosed at a substantially earlier time point.

And then when it comes to treatment, my view is, we've barely scratched the surface. With the opportunities for making drugs, immuno-oncology, and who knows what other areas lie in front of us, are almost limitless. The Biden administration has a goal for the reignited Cancer Moonshot of decreasing the mortality rate over the next 25 years by 50%. What I think we need to do is to decrease mortality over the next 25 years by even more than that, and in addition, to make progress against those cancers where progress thus far has been limited. Take pancreatic cancer as a specific example; 10 years ago, the RAS oncoproteins were thought to be undruggable targets. But last year, we had the first approval from the FDA of a RAS-specific inhibitor.

The good news is, that can target about half of lung cancer that has mutant RAS. The bad news is, it targets very few people with pancreatic cancer who have mutant RAS. On the other hand, there now are G12D inhibitors where there's excellent preclinical data and hopefully, sometime next year, be starting clinical trials. G12D mutations account for about half of people with pancreatic cancer. If the success there mirrors the success that we've seen thus far with lung cancer, it means that we are potentially on the way to actually making a difference in outlook for people with pancreatic cancer. But I just see this as one of many opportunities as time goes forward.

Pat Loehrer: You did, this week, something that no one has done, and that is, to turn the reins of the directorship of the Cancer Center, over to the first woman director, Monica Bertagnolli. What was in your letter that you left on the desk that you gave her? What kind of advice did you give her?

Dr. Doug Lowy: My advice that I gave her was really, "How can I help you the best and the most?"

Dave Johnson: That's awesome advice. No doubt about it. It's a really historical moment, and of course, we, who are members of ASCO, are particularly proud that Monica has taken the reins, as a former ASCO president. And Doug, we really appreciate you taking the time to spend with us. It's been incredibly interesting, and congratulations on an amazing career.

Pat Loehrer: Absolutely.

Dave Johnson: And also, thanks to our listeners for tuning in to Oncology, Etc. As you know, this is an ASCO Educational podcast, where Pat and I will talk about just about anything. If you have an idea for a topic or a guest you'd like us to interview, please by all means email us at: education@asco.org.

Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click, "subscribe". Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center, at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

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Vaccine development is a tremendous scientific breakthrough benefitting countless human lives. In Part 1 of this ASCO Oncology, Etc. Education Podcast episode, you will hear from the pioneering co-developer of the HPV vaccine Dr. Doug Lowy who serves as Principal Deputy Director of the National Cancer Institute , He speaks about how he got into the cancer field through the influence of his parents (4:49), the path that led him to focus on HPV (8:04), and his collaborative professional partnership with fellow HPV vaccine developer Dr. John Schiller (9:31). He also discusses his ongoing trial of one-dose administration, which promises to boost HPV vaccine uptake and reduce the burden of cervical cancer globally. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Hi, I'm Pat Loehrer. I'm Director of the Center of Global Oncology and Health Equity at Indiana University.

Dave Johnson: I'm Dave Johnson. I'm a Professor of Medicine at UT Southwestern Medical Center in Dallas, Texas.

Pat Loehrer: And this is Oncology, Etc. Dave, what have you been reading lately?

Dave Johnson: Well, you and I have talked about a couple of books, but I thought in light of our guest today, I would mention a book I actually read probably nearly 60 years ago called The Microbe Hunters by Paul de Kruif - very interesting book, written, if memory serves me correctly, in the '30s, about many of the early bacteriologists and physicians who were interested in microbes; Pasteur, for example, and others. And I don't remember all the details, but it certainly was one that was influential for my choice of Medicine as a career, much like Arrowsmith. It was a really impactful book. I doubt many of our listeners today would've read that book, but if one is interested in the history of Medicine, it's a really interesting book to read.

Pat Loehrer: You said 60 years ago. Okay, when I was reading books back then, it was about Dick and Jane.

Dave Johnson: It's my understanding that you're not past Dick and Jane yet.

Pat Loehrer: Good, good point. Good point. Well, it's such an incredible honor today, we have Dr. Doug Lowy as our interviewee today. Doug is the Principal Deputy Director of the National Cancer Institute and Chief of the Intramural Laboratory and Cellular Oncology Program at the Center for Cancer Research. He has served as Acting Director more than any other person - he served as Acting Director between April of 2015 and October of 2017, between April of 2019 and October of 2019, and most recently, he served as an Acting Director until Monday of this week, October 3rd. I had a chance of seeing Doug, I think, about a year ago, a week after he took over, and this is great to have that bookend here.

He has had this title of Principal Deputy Director since July of 2010 and he leads many of the NCI's key scientific initiatives. He graduated from Amherst College, I think in Art History, I may be wrong on that, received his medical degree from New York University School of Medicine, trained in Internal Medicine at Stanford, and did a Dermatology Residency at Yale.

His focus has been on papillomavirus and the regulation of normal and neoplastic growth. The papillomavirus is in close collaboration with Dr. John Schiller with whom he's co-authored 150 papers over the last 25 years.

In the 1980s, he studied the genetic organization of papillomaviruses and identified oncogenes that were encoded by the virus, and he's been integrally involved and instrumental in the development of the papillomavirus vaccine.

His laboratory did work with the RAS gene family and other suppressor genes, and as you can guess, he's just one heck of a smart guy.

For his body of work and together with Dr. Schiller, they received the Federal Employee of the Year Award in 2007 and the Partnership for Public Service Award, the Dorothy P. Landon American Association for Cancer Research Prize for Translational Research, the Albert B. Sabin Gold Medal in 2011. In 2007, he got the Medal of Honor for basic research from the American Cancer Society, and President Obama awarded him the National Medal of Technology and Innovation in 2014. And in 2017, he received the Lasker-DeBakey Clinical Medical Research Award, which is considered one of the most prestigious honors in biomedical research.

He is listed in the Institute of Scientific Information as one of the most highly-cited authors in Microbiology, and obviously, he's a member of the National Academy of Science and the National Academy of Medicine.

Although these are notable honors, I'm told that none of them match the opportunity to speak with Dave and I today, and we really thank you so much, Dr. Lowy, for joining us. Thank you.

Dr. Doug Lowy: Pat, I am speechless.

Pat Loehrer: I so wish that Dave Johnson was, but could you tell us a little bit about your upbringing and your early life?

Dr. Doug Lowy: Sure. I grew up in The Bronx, in New York City. I'm the younger of two boys. My brother is two and a half years older than I am. Both of my parents were general practitioners. My parents were both Americans, but my father had a classic sophomore slump when he was an undergraduate and was unable to get into a medical school in the United States. And so, he actually went to medical school in Austria, in the University of Vienna, and needed to learn German in order to go to medical school.

But my parents were both very successful private practitioners. They had separate practices but practiced in the same office, and I learned about medicine, in large part, through them. They would go to lectures, and from the time I was probably nine or 10 years old, they would be telling me about cancer, and I became interested in that area. And then, when I was 16, my mother developed a deep melanoma on her leg, and so, cancer literally came home. And luckily, she had very good surgical treatment and lived for almost another 40 years - she lived until she was 80 and actually died of metastatic stomach cancer.

But I got involved in thinking about cancer really through my parents. They talked with me about the role of tobacco in the development of lung cancer, and I heard about the Hammond and Horn report from the mid-1950s when it came out.

Pat Loehrer: That was when Dave was reading the Microbe Hunters.

Dr. Doug Lowy: I was reading it at about the same time. I must say that, although I found it very interesting, it didn't really speak to me, and now that's what I need to go and do. Although, in retrospect, that's what I've ended up going and doing.

Pat Loehrer: Was it because of your mother that you had an interest in dermatology? How did you swing into there? Because we think of you mostly as a translational researcher.

Dr. Doug Lowy: The dermatology was really when I was at NYU. I worked in the laboratory of Jan Vilcek, who had recently come from Czechoslovakia to NYU, and in his lab was Alvin Friedman-Kien, who was a dermatologist. And Alvin subsequently was among the first people to identify the AIDS epidemic through the Kaposi sarcoma. But Alvin talked with me about dermatology, and potentially, this might be an interesting field for me to go into. And then, when I went to Stanford, I did Internal Medicine for internship and a year of Medicine, and I did a rotation in Dermatology.

And I was very impressed that the people who smiled the most were the dermatologists. And they had time also to think about what was going on with patients. And since I was at Stanford, it was a tertiary care facility and so we were taking care of people who were terribly sick, largely people with lymphoma and other types of cancer. And I thought that I might be better suited to taking care of people who were less sick than that.

Dave Johnson: Is that where your interest in Papillomavirus started?

Dr. Doug Lowy: Well, that was indirect. I first went into dermatology and then said, "Well, I want to be doing research. What can I do in research that might be connected both with dermatology as well as with cancer?" And the closest that I was able to come was Papillomaviruses. And when I started working on them, they were not yet clearly associated with cancer the way they are today. It was known that they were associated with an uncommon condition called Epidermodysplasia Verruciformis or EV and this is a condition where people have widespread HPV infection. And on sun-exposed areas, a subset of them develop skin cancer, but it's distinctly uncommon.

The real interest, if you will, came from the identification of HPV infection and cervical cancer, which is one of the more common cancers, especially on a worldwide basis. And that was really the link with cancer.

Pat Loehrer: You had an incredibly long-term collaboration with John Schiller, and as I mentioned, you published more than Dave and I have written letters to our wives with this man. Tell us a little bit about that relationship, that friendship, and that professional partnership.

Dr. Doug Lowy: John, actually, he was at the University of Washington in Seattle doing his PhD, and it was so long ago that he sent me a letter, and I had been doing research on retroviruses. He sent me a proposal that he was doing his PhD in bacterial genetics, but he wanted to learn about mammalian viruses and so was writing to me about doing work with retroviruses.

I wrote back to him and said, "That's very interesting, but I had just started working on papillomaviruses." And I thought the room for development and learning more was even greater there than with mouse retroviruses, which is what I was working on and what he was proposing to do some post-doctoral research on.

Of course, he had never heard of papillomaviruses, so he had to look them up. But he developed a project with papillomaviruses and was able to get an NIH award to come as a postdoctoral fellow to work in my lab, and he actually did the research that he proposed, and it led to our improved understanding of the genetic organization of papillomaviruses.

But then, it was clear that John and I got along very well, and it looked like both of us might be able to work together. So, he ended up getting tenure after he had been at NIH for about 10 years. And it's just been an amazing collaboration for me because John knows a lot of things that I don't know, and he thinks that I know some things that he doesn't know. And working together has been terrific, really, because when one of us doesn't want to do anything about something, the other one tends to step in. And so, it's been an amazing partnership that we have had for this time.

Dave Johnson: This is really important. One of the reasons we agreed to do this podcast is to provide insight to up-and-coming faculty and fellows about mentoring and partnerships.

What is the most important aspect of your partnership with Dr. Schiller?

Dr. Doug Lowy: I think treating him as an equal colleague from day one, that probably is important. And then, since I was senior and he was junior, trying to make sure that he got credit when discoveries were made because the default, otherwise, was going to be that it was Doug Lowy who was doing things, whereas it was very clear that John was a key part of this collaboration.

Dave Johnson: Now that your relationship is a long-lasting and mature one, how do you make those decisions now?

Dr. Doug Lowy: Well, we've just worked together for a long time, and we enjoy talking, and actually, over the last few years, we are collaborating less rather than more. We're still very close colleagues, and we're in the same lab. But since I've been Deputy Director, especially during the last seven and a half years, I've been Acting Director for about three and a half out of the last seven and a half years, and there just isn't enough time to devote to the lab. And it would've been inappropriate for me to have been considered a co-principal investigator with John, who has gone off and done a lot of amazing research, more or less independent of me.

Like everything else in this world, it develops, it continues to evolve, but we still are very close colleagues. As Pat was mentioning, this is my first week in several months not being Acting Director, and yesterday, John and I simply reveled in the opportunity to talk informally for 30 minutes without having to look at my watch because I needed to go someplace else.

Dave Johnson: I'm glad you've reviewed that. I think a lot of junior faculty and fellows think that being in a leadership position is a cush job, and I'd tell them that it defies the laws of Physics because all poop flows uphill in this setting, and you have to deal with it.

Pat Loehrer: I do want to spend some time talking about the NCI and your role there, but talk a little bit about how you have seen and where you envision that vaccines, particularly, HPV and maybe hepatitis vaccine - where you see it's been, and where it's going, and the impact that this potentially has on cancer worldwide?

Dr. Doug Lowy: Well, one of the areas that John and I are continuing to work on closely is more research on the HPV vaccines. We noticed, quite a number of years ago, that the HPV vaccine performance was quite different from that of other so-called subunit vaccines. So, this is not an attenuated live vaccine, but instead is a subunit - it's just made up of one protein of the papillomavirus, the protein that gives rise to the outer shell of the virus. And what we noticed in a clinical trial that we were doing with colleagues in the intramural program, but who are medical epidemiologists - they are the leaders of the research, and what was happening was that although everyone was supposed to get three doses, there were some young women who were getting either two doses or one dose, in the trial, and this is in Costa Rica, where historically, cervical cancer has been the number one cancer of women.

And it turned out that there was no difference in level of protection whether the women got one dose, two doses, or three doses. And even more surprising was that the antibody levels over the first few years were remarkably stable. And this led John and me to wonder whether it might be possible to get away with just a single vaccine dose. So, a lot of the research that we have been doing with our colleagues over the last few years is to develop stronger evidence that one dose of the vaccine would be sufficient to confer strong protection that's long-lasting.

We've now carried out the studies in Costa Rica, with the initial trial to more than 10 years, and the antibody levels continue to be very stable, and the protection does not seem to have waned. Because this was not a pre-specified outcome, it's not enough to change standard of care. So, we and our colleagues are conducting a non-inferiority efficacy trial that is comparing two doses versus one dose of two different FDA-approved vaccines. One, GARDASIL 9, which is the HPV vaccine that's available for sale in the United States. But also Cervarix, which is made by GlaxoSmithKline, it's approved by the FDA, but it's no longer sold in the United States.

And we anticipate that the results will read out in another couple of years. And if the results show that one dose and two doses are pretty comparable, we're expecting that this will lead to a worldwide change in recommendations for the HPV vaccine.

So, whether you are in a high-income country or a low or middle-income country, that one dose is what will end up being recommended.

Pat Loehrer: They could almost completely eradicate this disease, the most common cancer around the world. It's huge.

Dr. Doug Lowy: So, Pat, the problem is that although the vaccine was approved 15 years ago, only about 10% of eligible young women in low and middle-income countries have actually been vaccinated up to now.

And we think that the logistics and the cost of one dose could really be transformative, especially for those young women. It also would save the United States a great deal of money because needing only one dose would be far less expensive, and the government actually pays for about half of the HPV vaccine that is delivered to teenagers through the Vaccines for Children program.

Dave Johnson: Well, this concludes part one of our interview with Dr. Doug Lowy, Principal Deputy Director of the National Cancer Institute and Chief of the Intramural Laboratory of Cellular Oncology in the Center for Cancer Research.

In the second part of this episode, Dr. Lowy will give his insight to vaccine hesitancy in the COVID era and the evolution of accomplishments over the past 50 years working at the National Cancer Institute.

We want to thank all of our listeners for tuning in to Oncology, Etc. an ASCO Educational podcast, where we will talk about just about anything and everything. So, if you have an idea for a topic or a guest you would like for us to interview on the show, please email us at: education@asco.org.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click, Subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center, at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

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In Part Two of this Oncology, Etc. episode, hosts Patrick Loehrer and David Johnson continue their chat with hematologist-oncologist Dr. David Steensma. They explore his views of key opinion leaders and a lifelong passion – collecting rare stamps, including medical stamps.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University. I'm here with Dave Johnson, a Medical Oncologist from The University of Texas, Southwestern in Dallas, Texas.

Welcome to the second half of our Oncology, Etc. conversation with Dr. David Steensma. He's a highly accomplished physician and scientist in the field of Hematology/Oncology.

In the first part of this episode, Dr. Steensma told us about his Dutch immigrant roots, and how a single college biology course changed his career interests from astronomy into medicine. Today, we'll explore his views on Key Opinion Leaders and another passion of his, and an interest of ours - collecting rare stamps, including medical stamps.

Dave Johnson: So, David, in addition to your scientific writing, you've been a prolific writer in many other sort of viewpoints and opinion pieces. There's a lot to choose from, but I know you've been interviewed in the past about your column called ‘The Raven’, which I won't ask you about, as an Edgar Allen Poe fan. You also wrote a wonderful piece called, ‘Key Opinion Leaders’, which I thought might be quite interesting to ask you about, now that you might be calling upon KOLs. Do you want to tell us a little about that?

Dr. David Steensma: Yeah, that's not my favorite term. Thought Leaders is another kind of silly term, but we know what we mean when people are talking about it. Yeah, I've had a chance to write on a lot of different things over the years, and that's been great fun. And when I first heard that term, I couldn't figure out what it meant, KOL. And then, a pharmaceutical representative actually accidentally left a list of KOLs in my office and I realized that not only are KOLs cultivated very carefully, those relationships, but there's a hierarchy of KOLs. They were people who influenced the local formulary and local practice at the institution, there were those who had a regional impact, and then there were those who were on the NCCN guideline committees, and had, you know, much broader impact that they really wanted to make sure to influence the heart and minds of-- in my interactions now, this opinion piece was a sort of tongue-in-cheek about Key Opinion Leaders and Thought Leaders.

And with Thought Leaders, I was reminded of Sherlock Holmes’s brother Mycroft Holmes, who, by Conan Doyle's fiction, was a brilliant man, but unwilling to stir his ample backside from his Chair in the Diogenes Club to actually get out there, and do some real work, and solve mysteries. And so, it fell to his slightly less brilliant brother, Sherlock, to become the consulting detective. So, that was fun. Now, we're sort of on the receiving end of wisdom from people who are experts in the area. And it's very important what doctors think, and in different geographies about how they think their patients will be potentially treated in a year or two, five years down the road, what the issues they have with current approaches are, where they see opportunity for some of our new compounds, for some of those of other companies, and it's different in Europe versus the US versus Australia.

And so, there's a lot that we gain from advisory boards. There's an arc to an advisory board. You don't want to convene an advisory board when there's no data, because then, everybody is just speculating. You don't want to do it too late after something is already on the doorstep of FDA approval because then not anything can be changed at that point. So, you know, doing it at an in-between point where there's some initial data, but where we can really be guided by academic, clinical, and other experts, is really helpful.

Pat Loehrer: I'd encourage people to pull this article out. It is really, really good. 2015, I think it came out there. The end of it, I also love it. You're talking about Kanti Rai who came up with the Rai classification and he was at this Meet the Expert session at the ASH meeting, and he said at the meeting, and this is your quote from it, and I love it, he said, “I don't like the name of this session because no one's an expert in chronic lymphocytic leukemia. I've been studying this disease for decades, and still too many of my patients die. If I was truly an expert, the disease would've been cured by now." I just love it, but it's a great read.

Dave Johnson: Let me ask you, very seriously, if a younger colleague were to come to you, David, what advice would you give him or her about being invited to be on an advisory board? We'll skip the term KOL or Thought Leader. What advice would you give him or her, and what should they look for, and how should they prepare for that activity should you think they should do it?

Dr. David Steensma: Well, I think getting back to imposter syndrome, people should feel, if they're invited to be in such a meeting, that they're there for a reason because their opinion does matter. And sometimes, younger physicians are reluctant to speak up in this setting, especially when there maybe leaders in the field there that have been doing it for decades, and may have very strong opinions. So, not being afraid to share their perspective and realizing that they're invited for a reason.

On the other hand, I found it very helpful when I was a young faculty member and, on these panels, to listen to how colleagues were assessing data, and the recommendations they were making, and their perspective. And I learned a lot from some of those advisory boards earlier on. Many of the people who are the senior leaders in leukemia and MDS, you know, Rich Stone, Peter Greenberg, you know, John Bennett, in MDS, Marty Tallman, Hagop Kantarjian, Clara Bloomfield, just people who had decades of experience. And in part, I think it's some of my comments at advisory boards that helped get me my job at Dana-Farber, because I'd been in a number of meetings with Rich Stone, and he apparently liked some of the things I'd said about approaching patients. And so, you know, when a faculty position came open, he invited me out to come visit. And so, they can have benefits that you don’t anticipate.

Dave Johnson: Yeah, I would definitely agree with that. And there's pros and cons to being involved in those activities, but there are an awful lot of good that comes from it. And I think you've just touched on some of those.

I'm going to shift gears a little bit because Pat has been waiting anxiously to hear all about your stamps. So, out of the many, many things that you've done and written about, I would say you've got close to 100 publications on medical stamps. It's an extraordinary productivity, David. So, tell us a little about your interest in medical stamps. How did you get involved in this, and where do you find time to write about them, and how do you decide which ones you're going to write about?

Dr. David Steensma: Yeah. Bob Kyle, is really the driver on that, and we continue to do these together. Bob turned 94 this year, and he continues to be intellectually engaged. He's fun to talk to, if it weren't for COVID, he'd still be traveling and coming into the office, you know, which he was doing until just a few years ago. So, I met Bob as an intern when I was at Mayo. Somebody said, "Oh, you should meet this guy, he's really fun to talk to." And we just hit it off. And when I was a boy, my grandfather and my great-grandfather had collected stamps. And my grandfather really got me interested in it, partly given our family history, those of The Netherlands and former colonies, but also just more generally. And then as often happens, I got to be a teenager and other things took over in terms of interest, and there was less time, so, I had fallen away from it a bit.

But somehow in this conversation, Bob had mentioned this, and that they were looking for someone younger who had this kind of background, to help with this series that has been running. Initially, it was running in JAMA with a guy named John Mirt, beginning around 1960, and then about a decade later, moved to the Mayo Clinic proceedings when they published six stamp vignettes on medical science per year, and Bob has done over 500 of these going back decades. And so, I got involved in that, and writing about-- thus far, it's mostly focused on individuals, but I have done a few also about more general trends in Philately. I will say that there are fewer of us, certainly those under 50, who are involved in the hobby. There's so much other distractions, but I still find it interesting and fun. And I've learned a lot, putting those vignettes together.

Pat Loehrer: I started collecting stamps when I was young, I still have my Scott’s album down. And now it's not stored, in properly, but I remember US Number One, I could have bought for $35, but I was only like 10 years old, and that was, you know, like $500 to me. So, I still regret that. Are you collecting stamps yourself now, still that you've resumed the collection part of it?

Dr. David Steensma: Yeah. I would say, only a little bit. So, my Netherlands and Colonies collection is now actually complete, except there's one elusive. There's always one, right? Can't find this thing, even at auctions and such. And I also collected coins as a kid, and you know, still have some involvement in that. It's hard to find the time because I do do so many other things, and my wife and I have children, they're now college and PhD age, so I do woodworking, I have a telescope, so I never lost the love of astronomy. It seems like there's always other things to do. But I still have my collection over there on the shelf.

Pat Loehrer: Did you inherit it from your grandfather too?

Dr. David Steensma: Some of it I did. Yep. The core of it, I inherited from my grandfather and my great-grandfather. And then once I paid off my substantial medical school debt to the University of Chicago with the help of, in part, from advisory boards, but also mostly from moonlighting in emergency rooms around rural Minnesota-- during fellowship, I was like a full-time ER doc who happened to be doing a Hem/Onc Fellowship on the side, and finally got it paid off and then I could start on filling in some of the gaps.

Pat Loehrer: Before we change this thing, what is your most cherished stamp that you own?

Dr. David Steensma: Oh, my most cherished stamp is not a Dutch one. It is a set of national park stamps from 1934, authorized by James Farley, who was the Postmaster General at that point. 10 stamps, different colors about, you know, Zion and Acadia-- and it was my grandfather's favorite, and he was a big fan of the national parks, took two big trips there back in the '50s out West. And so, at his funeral, I put together a little display of those hanging with the photographs of other things from his life. I have that display, it's very meaningful to me - it's a connection with him. He was certainly very influential in my life. I never imagined I'd be working for a Basel-based pharmaceutical company, like he did for his whole career. Never thought that that would happen, but life has some unexpected twists.

He worked for Roche in Nutley, New Jersey for much of his career as a research chemist. And ironically, when my grandmother was diagnosed in the 1990s, pancreatic cancer, and she saw the oncologist and was offered a 5-FU infusion after surgical, he said, "5-FU. I worked on that in 1959, 1960, that's still the best that we have to offer?" He was shocked by that. I was a fellow at the time. I said, "We need better drugs."

Dave Johnson: For sure. So, do you have a favorite medical stamp, David?

Dr. David Steensma: A favorite medical stamp? Gosh, that one's I think a little bit harder. I certainly have medical stamps that have piqued my interest. One of the sort of most moving is one of the US stamps that came out in the 1950s that has the Sir Luke Fildes’ ‘The Doctor’, on it. You know, with this concerned physician at the bedside of a young boy, and I actually wrote a vignette about the history and background there, and I think that connection with patients at the end of the day when we don't have good drugs, that connection with patients is still so meaningful, isn't it? As you guys really know. So, and as many of our listeners know, and so much of what medicine remains despite the molecular glue degraders and CAR T and gene therapy, is still that human connection, and being there for our patients. And so, I would say that that is probably one of the most meaningful.

There's some real quirky ones, too. Austria's come out with some stamps in the last few years; one made of toilet paper, when the toilet paper shortage was happening, another, made of the mask material and the shape of the mask to remind people to mask up. You know, there's been a lot of creativity. And the Dutch are very good about design. They come up with just some brilliant innovations in postage stamps.

Dave Johnson: I mean, stamps are really quite artful, by the way, the Fildes painting hangs on the wall of my office. You can't see it, but it's on the wall. And then behind me, you can perhaps see a couple of framed stamps that are some of my favorites. One was a gift to me from a former Group of Chief Residents, of an Osler stamp that Canada put out, and the other is one I received actually as a gift, as part of an award. It's the first cancer stamp that was produced in the United States. So, I love them both. They're quite nice. The Fildes stamp is actually my favorite of all, so I think that's a great stamp.

Pat Loehrer: I have actually looked behind me. I've got a stamp collection on the frame that was given to me too that I love. It's stamps of medicine. There was one, a Dag Hammarskjöld stamp, that was famous because they printed it upside down when they put the color in, and I think it created a huge controversy from-- you know this better than I do because they decided then just to overprint them. Instead of making a few sheets that were incredibly valuable, they ended up printing out thousands of these things, which I have one now. It's only worth 7 cents, but at the time, it seemed really cool to have a misprinted stamp in your collection.

Dr. David Steensma: Dag Hammarskjöld, there's an interesting connection with what I was talking about a little bit earlier with St. Elizabeth's Hospital. So, this relatively small teaching hospital had, at one point, a very strong hematology research program led by a guy named Fred Stallman. And in 1974, Fred Stallman, who was coming back from ISH, International Society Hematology, which was in Tel Aviv that year, and his plane exploded somewhere over the Aegean Sea, ultimately thought to be related to the PLO, and so he died. There was a big painting on the wall, in the hospital of him. And Dag Hammarskjöld also, at the peak of his career, you know, as the UN Secretary-General, was killed in a plane crash. But the interesting thing about Fred Stallman is, here, you have somebody who was so important in hematology. None of the fellows had any idea who he was or their connection to hematology. You know, it shows how fleeting fame is, unless you're an Einstein or Babe Ruth level. So, that was a good thing to keep in mind as well.

Pat Loehrer: We could talk for another hour or two on this. Dave, we really appreciate it. But unfortunately, this is all the time we have for today. And I really want to thank you for joining us, Dave. This has been a wonderful conversation.

I also want to thank all our listeners for tuning in to Oncology, Etc. This is an ASCO Education broadcast where we will talk about anything and everything, as you can imagine. If you have an idea for a topic or a guest you'd like to see on the show, just email us at: education@asco.org.

Thanks, again. And, Dave, I've got a quiz for you here. Do you know why pirates don't take a shower before they walk off the plank?

Dr. David Steensma: I do not.

Dave Johnson: I have no idea.

Pat Loehrer: It's because they wash up on shore.

Dave Johnson: Oh boy.

Thank you for listening to the ASCO Education podcast. To stay up-to-date with the latest episodes, please click, "Subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

View Details

"What exactly is implicit racial bias? How does it manifest in physician-patient interactions and what is the potential impact of such bias on oncology patient outcomes? In this ASCO Education Podcast episode, Dr. Lauren M. Hamel (Wayne State University) and Dr. Nimish Mohile (University of Rochester) share their insights and perspectives on these topics with host Alissa A. Thomas (University of Vermont).
If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

Resources:
Blindspot: The Hidden Biases of Good People by Mahzarin R. R. Banaji and Anthony G. Greenwald
Implicit Associations Test
21-Day Racial Equity Challenge

TRANSCRIPT

Dr. Nimish Mohile: We had a patient a few years ago who had presented to our clinic, who ended up having a diagnosis of primary central nervous system lymphoma, and she was a young black woman, and it took about nine months for her to get that diagnosis. She had gone into multiple emergency rooms, she was only 22, had not had prior interaction with the medical system, but based on some of her socioeconomic demographics, her skin color, she was never given the kinds of testing that any other patient I think should have gotten at that time.

Dr. Alissa Thomas: Hello, and welcome to another episode of ASCO Education podcast. Today's topic is, 'Implicit racial bias and its impact on patient care.'

My name is Alissa Thomas, and I'm a Neurologist and Neuro-Oncologist at the University of Vermont College of Medicine.

I'm delighted to introduce our two guest speakers; Dr. Lauren Hamel, who is an Associate Professor of Communication and Behavioral Oncology at Wayne State University, and the Co-program Leader of the Population Studies and Disparities Research Program of the Karmanos Cancer Institute. Her ongoing research explores racial attitudes in non-verbal behavior of oncology patients and physicians, and how those behaviors influence treatment decisions.

Dr. Nimish Mohile is a Professor of Neurology and Oncology at The University of Rochester. He also serves as the Diversity Officer, Associate Chair for Career Development and Leadership, and Neuro-Oncology Division Chief.

I'll get us started with the first question, really a definition. What do we mean by the term, ‘implicit racial bias’?

Dr. Lauren Hamel: I'm happy to go first. I think understanding what the definition of what implicit racial bias is is really important. You know, for good or for ill, over the last few years, it's gotten a lot more attention. And I think what's important to remember about it is that it's not a cognizant or a conscious bias, and it really is implicit, and it really is more of an association than it is anything else. It's sort of like the built-up associations that we have for anything. You know, could be race, could be gender, any number of demographics, or other factors that make our lives as humans. So, you know, associating certain aspects of people with positive or negative valuations.

I think when we're talking about implicit racial bias, it's kind of like the gut associations we have for members of different racial groups. So often, it's kind of paired with "white is good, black is bad." It's a very rudimentary description of it, but that's a real kind of basic association that this kind of definition is built around.

Dr. Nimish Mohile: Yeah, I would agree with that. I think that's a great discussion of what this is. I think it's really important for us to remember that these are really ingrained behaviors. It's, based on, you know, how we've been socialized and conditioned. And I think it's helpful to also put it in the framework of knowing that we all have some biases, we all probably have racial biases, and age biases, and other kinds of biases, and there's no sort of good or bad about having these biases. And the important part of this is, how do we recognize some of the biases that we have so that we can be more conscious about how we might fix those or think differently about the patients that we're seeing so that it doesn't result in actions that can be harmful.

Dr. Lauren Hamel: Yeah, I agree with everything that Dr. Mohile just added. It is these ingrained associations. Really, it isn't about blaming ourselves for them because it's kind of the result of how our brains are structured. But to his point, it's once we know that we have them, and you know, we have data showing how they affect our behavior, it's then on us to identify them and then work to mitigate them.

Dr. Alissa Thomas: Thank you. How do racial biases in patients and physicians influence treatment decisions or ultimately, how does this affect patient outcomes in Oncology?

Dr. Lauren Hamel: You know, I think the direct relationship between certain biases and outcomes is still kind of being uncovered and investigated. But there are some interesting patterns that have been uncovered in data, specifically in the Oncology context too, because as you can imagine, a variety of professional organizations and groups examine the influence of bias. But just within Oncology, we see physicians who have higher levels of implicit bias who tend to see their patients who are black as less trustworthy, less educated, and less adherent to treatment recommendations.

We also know that higher levels of implicit bias may be associated with less aggressive treatment programs recommended for black patients. We see some associations between levels of implicit bias and verbal dominance. But what was I think, especially interesting, is that we also see patterns of kind of perceptions from the patients that these physicians are communicating with. So, we see some manifestations in behavior, but we also see patients kind of “picking up” on some of these, whether or not they can identify them as bias necessarily. But for example, we see that patients who are seeing a physician with higher levels of implicit bias tend to see their physicians as less patient-centered, and less trustworthy.

And I think that's a really important piece to identify because these biases are by definition kind of operating outside of our own consciousness, but they're manifesting themselves in a way that the people that we're communicating with are noticing.

Dr. Nimish Mohile: We had a patient a few years ago who had presented to our clinic, who ended up having a diagnosis of primary central nervous system lymphoma, and she was a young black woman, and it took about nine months for her to get that diagnosis. She had gone into multiple emergency rooms, she was only 22, had not had prior interaction with the medical system, but based on some of her socioeconomic demographics, her skin color, she was never given the kinds of testing that any other patient I think should have gotten at that time.

That was a real sort of wake-up call for our clinic, because as some of you know, this is a disease that we can really treat, especially in younger patients. So, there's real consequences to these kinds of biases. And some of them are personal, the ways they're ingrained in us, but some of them are built into our systems, and it's based on; what our ERs are designed like, where our hospital systems are, what kind of relationships we have with primary care physicians in different communities, what kind of access some of our patients have to primary care physicians. This patient in particular didn't have great access to primary care, so she didn't have this other team of people to advocate for her and to say, "Hey, you know, this is something really different in this patient, and we need to take this seriously."

So, I think it can get complicated as we think about biases in ourselves, in other people, in the whole health system, and then also as we get out of our health system, some of these things are so influenced by what's going on in our communities.

Dr. Lauren Hamel: Yeah, I think that's a really important point. At least with my work, I examine kind of at the interpersonal level, but these biases, as Dr. Mohile points out, exist in all levels of our society, and they interact, and they're-- I don't want to say additive, it's probably much more exponential. But yeah, it's a layer, on top of layer, on top of layer problem.

Dr. Alissa Thomas: So, Dr. Mohile, you commented earlier that part of it is recognizing these biases in ourselves. Can you discuss how we might approach this with the impact of an anti-racism education program has been in your department and applications for that?

Dr. Nimish Mohile: So, we've worked on anti-racism in our department on a couple of levels. One of the main levels is just building awareness for individuals to understand that they have biases, that they have racial biases, and starting to understand why they have those. So, we've gone through exercises like book clubs and talks, for people to really do some of that self-reflective work to understand how they've been conditioned as they grew up.

I've personally done that and have found it very revealing and understood some of the biases that I grew up with based on people I was around, and based on my schools, and based on segregation within my school systems. So, I think that that's one piece of it.

I think another piece is we don't often get taught about the history of racism in the United States, and how widespread it is. It's a very small part of our curriculums, and I think we have to take it upon ourselves now in our medical systems to go through that education. Education that we probably should have had all through elementary school, high school, college, we have to do that learning now because then we can really start seeing that impact of race on our society.

And I think for physicians specifically, what is that impact of racism on patient care in our medical systems and how it's been ingrained in US healthcare. Understanding that we had segregated hospitals right until the 1960s, those are all things that were in the lifetimes of still practicing Oncologists.

One of the things we did for our other professional society that I belong to, The American Academy of Neurology, is we did develop an anti-racism education program that focused on understanding this history and this historical lens in healthcare, reviewing the impact that anti-racism has on our colleagues. So, what does that mean for black physicians or physicians from other underrepresented groups and how they interact with our health systems, how they're treated, what does it mean for their roles in academic departments? Then talking about how we can connect being anti-racist with the goals of health equity. So, how can we change the systems that we have control of to have healthcare that's more fair?

And then finally, how do we engage trainees and physicians in really developing anti-racism action plans? One of the important things about anti-racism is that you really have to be active, it's not a passive experience. You have to take action to change all these systems around us that are embedded with racism.

Dr. Alissa Thomas: Thank you. Along the same line, Dr. Hamel, you recently co-authored a study of a longitudinal implicit bias training curriculum. And can you tell us something about this project and what’s come of it?

Dr. Lauren Hamel: Yeah, so it came about a little more than a year ago and kind of coincided happily with an executive directive made by our state’s governor requiring implicit bias training, so we were able to kind of design it so it met those requirements. But really what the goal is, is to approach implicit bias with a 360 view. So, what are all of the issues related to it? What are the scientific underpinnings? What are the measurements? What are the pros and cons of those measurements and what we’ve used, and what they’ve shown in terms of influence on our individual behavior, our decision-making, kind of how we relate to people who might be different than us. And certainly, expanding beyond racial groups — we’ve looked at gender, we’re looking at age, things like structural racism.

So, we’re trying to kind of have a comprehensive view of it. And I think, you know, one thing, and it sounds like Dr. Mohile and his group have done a really nice job of tracking what happens after those. Because, you know, I think one-off sessions are better than nothing, certainly. Awareness is critical, but also, tracking like, what does this do for our attitudes, perceptions, and behavior? And that’s not easy. And so really, you know, trying to invest in tracking how things change. So, we’ve had a full year of assessments, we’ve seen some improvements in people’s attitudes and perceptions. But now what we really need to start doing is tracking certain behavioral aspects, and I think that’s where the next step needs to be. Our next year is just about to kick off in a couple of weeks. So, I think that that’s where we need to start putting our effort where it’s—okay, we’ve gotten kind of institutional support, the leaders of both the University’s School of Medicine and also the Cancer Institute have been encouraging this, which I think is really critical, because even though it’s a lot of individual work if you want these changes, you really have to have the support and buy-in from the leaders of the institution.

So, we’ve got that, we have interest, you know, we’ve established a really consistent and impressive participation in terms of each session. We’ve had upwards of 200 people attending each session, so people want this information. Now, according to the state, they also are required to have it. So, I think building up on that now, we’ve established a lot of good pieces of it, but now let’s start doing a better job of tracking how does this affect long-term perceptions, attitudes, and behavior.

Dr. Nimish Mohile: Every cancer center and department should be doing what Dr. Hamel is doing. The risk of the one-off trainings is that people come out of an implicit bias workshop and think, “Well, I’m fixed. I don’t need this anymore, now I can go on and take care of patients without bias.” And you really need that time to really work on those things and start to fix some of those attitudes that we have.

Dr. Lauren Hamel: Yeah. Because the associations get built up over a lifetime. You know, that's not something you're going to fix in an hour. It's a campaign, it's a marathon, to be sure.

Dr. Alissa Thomas: So, you've both touched on something that a lot of this is about perception, and it's not just what we say verbally, but non-verbal behavior. It plays into implicit racial bias.

Dr. Hamel, can you talk a little about your study of non-verbal synchrony, and can you describe differences between non-verbal behavior with doctors and patients of the same race compared to those of different races?

Dr. Lauren Hamel: Yeah, absolutely. And you know, a lot of my work focuses on nonverbal behaviors. On the study you referenced, we were looking at something a little bit more kind of in line with how implicit bias acts. It sort of manifested unconsciously. So, this whole idea of non-verbal synchrony is kind of this non-conscious coordination of movement that happens between two people. And this is a construct that's been studied for decades in a number of settings, but we were the first to be able to examine it in an oncology setting, and also comparing diads of different racial makeup.

We were able to take like real video-recorded data of naturally-occurring treatment discussions. We had a set of videos that included black patients in a similar set with white patients. And we used automated software to track their behavior and determine how coordinated they were over time. We actually observed more coordinated behavior between black patients and their physicians compared to white patients and their physicians. Some literature is non-verbal synchrony is sort of seen as always good, and there's also some new data showing that maybe it could be evidence of trying to repair a relationship. We’re very early phases, I'm not in a position to offer kind of a best practice with this, but I think the point is, is that we do see differences. There is a coordinated behavioral difference between dyads. We're also starting to look at how that level of coordination is influenced by attitudes including implicit bias. So, I think identifying a difference is important, but now I think it's on us to now figure it out. Like, what is that the result of?

And then, what does that do for the patient in terms of short and long-term outcomes? So, does that affect their perceptions of their physician? Does it affect their perceptions of the recommended treatment? Does it affect adherence to that treatment?

Dr. Alissa Thomas: How can we do better? How can doctors improve non-verbal and verbal communication methods with our patients?

Dr. Nimish Mohile: I can speak a little bit about verbal communication. I think this work on non-verbal communication is fascinating. I'd love to hear where that comes out because it's something I think we're not really thinking about very much, and I'm not surprised that there's differences there. I think sometimes with communication, just having an awareness in that you might be communicating differently with someone can be helpful. In many of our institutions, we sometimes go through coaching with our communication, particularly with Oncology patients, where you have someone witnessing how you're interacting with that patient, and what kind of verbal and non-verbal cues you're giving, how you make eye contact. I think there's models there that we could really be thinking about, not just focused on some of the stuff that oncology has been focused on, like, delivering bad news or end-of-life discussions, but also on these issues of racial bias or age bias, and see what we could do differently in those areas.

Dr. Lauren Hamel: Yeah, I completely agree. And I think decades of research have shown that patient-centered communication skills are something that can be taught, learned, and improved upon. Maybe not just regarding the issues related to racial bias and other racial attitudes, but you know, for helping to improve a number of outcomes for patients. So, I think, that kind of focus, I mean there are very clear, well-established frameworks and methods around that, I think that was just, you know, something we already have in our toolbox that we can use. But I think also things like building up trust within a community, I think is critical, for really any kind of medical institution that operates within a community should be, you know, trusted by the community it's in.

And there's a number of strategies that can be implemented to build up that level of trust. So, you're kind of looking at like the outside going in. A lot of these the data that I'm referring to right now are coming out of the primary care setting. But I think people like us that are in an Oncology setting are certainly well poised to start testing these in Outpatient Oncology clinics. And I think just like what we're doing right now, making the topic of race, racism, implicit bias, something that we can have in a number of settings. And I think Dr. Mohile made a really good point. Like, we're not taught this like we're taught like grammar, and, you know, math. This is a part of our lives too, and you know, it's having big effects on huge swaths of our population. So, I think normalizing these conversations is a really important step, too.

Dr. Nimish Mohile: In the United States, we're particularly uncomfortable talking about racism. Even within our medical teams, we don't know how to do that. So, what do you do if you're on rounds and you see another provider have some kind of verbal or non-verbal communication that, you know, might not be appropriate, or you think that there's a racial bias in the way we're treating or talking to a patient? That's not something we know how to deal with. We don't know how to bring that up. And so, I think that that's something that within health systems, we need to start working on. We have great models for this.

When we think about the transitions we've made over the last 20 years in patient safety, we have elevated these conversations about patient safety. If there's a medical error by anyone on a team, it's something we're open to discussing, not blaming, and then really having a conversation about how can we fix this next time. You know, can we work towards doing that with something like racial bias?

One of the things we've started doing in our department is that one of our mortality and morbidity conferences each year is focused on racism. So, a scenario where we think that there might have been differing treatment to a patient based on race, and then having an open discussion about that, going through some of the literature about that, and just practicing some of those conversations with each other as faculty, and medical providers, physicians, nurses, advanced practice providers, of being able to name racism as one of these problems.

And then we really try to model that behavior on teaching rounds, so that with our medical students and residents, and fellows, we're also having these conversations about how could racism be at play in this patient's story, and how they got to their diagnosis, and in their outcomes, and an acknowledgement that racism is having some effect on this patient's ability to get screened for cancer, and potentially, their ability to have the same survival as another patient.

Dr. Alissa Thomas: Thank you. That's so helpful to think about how to elevate this through departments and people who may be less aware of the issue and raising awareness. You both have touched a lot on communication between patients and providers, and there's a theme here that it's not just the doctor-patient relationship, but also the patient's community, and the medical team, that support that physician. Can you elaborate a little bit more about that, about how we communicate to the patient and the community they represent, and the provider and the team that they represent?

Dr. Lauren Hamel: Having active, mature, genuine involvement of community members within a cancer hospital or cancer institute, I think is really important.

I know my work has benefited from those who have come before me that established really strong connections with people who are, either survivors, care caregivers, advocates, you know, people who are very devoted to their particular neighborhood, community, that work really closely with us and provide feedback on a lot of the interventions that we design. So, one thing that I work in with all of my research is, as I'm developing an intervention that I think will improve either communication with a physician or another care provider, I certainly would never implement that without getting that thoroughly vetted by the people who it's going to affect.

My clinician colleagues are always really generous with their time. It's a little bit more challenging to get community member feedback, but I do believe that it is, I mean, not just worth it for my own research success, but also for the mission and the purpose of what we're trying to do here. So, if you seek out feedback from a community group or community members who are willing to give you their honest opinion, and you know, you have to be in a position to receive that feedback with grace and professionalism, I think that's an important piece of it. Like, you want to have that connection, you don't want to just kind of have a checkbox. You know, you really want them involved in what you're doing. I'm using my own personal experience, but I'm sure there's far greater levels of, you know, system-level issues where something similar could be implemented.

Dr. Nimish Mohile: I agree with that. I think this is really hard, and I think our medical systems are just starting to learn how to do some of this work. So, I'd echo what Dr. Hamel said about really getting input from members of those communities. I think many cancer centers are trying to do more outreach into communities, and that's not that easy. We have to really start by kind of building that trust, and building a philosophy where it's really about helping that community, as opposed to getting more patients from that community, or getting more trial participants from that community, or being able to check off boxes for our NIH grants from those communities. It really needs to be a genuine approach of, what does this community need? Because we don't often know that answer. And so, we have to start with that curiosity, and then determine how can we help those communities with the resources that we have. And I think cancer centers can do this optimally if the entire health system does that, that's where you can really start building some of that trust.

Dr. Alissa Thomas: Thank you. For those of us that want to know more, would you be able to share some practical tools or resources that are available for healthcare professionals who want to learn more about implicit racial bias, either on an individual or institutional level?

Dr. Lauren Hamel: I think one of the first things someone can do is take an Implicit Association Test, or an IAT, as it's often referred to. They're all housed at Project Implicit, at Harvard's website - google IAT, it'll take you right there. No identifiable data are collected from the individual test taker, but it gives people a sense of what's being measured. You know, it's not a character assessment, it's a measure that's designed to test your associations. And I think just having that experience makes you a much more informed consumer of this kind of science because I think it's important to keep a critical eye. You know, if we're scientists, we have to be critical. And I think this really helps people kind of get to a point where they can understand the science a little bit more effectively, but maybe also can reduce a little defensiveness that inevitably comes up when these kinds of data are discussed.

So, I would do that. And then the second thing would be, there's a wonderful book called, Blindspot: Hidden Biases of Good People, it's written by Doctors Greenwald and Banaji, and they are basically credited for creating the Implicit Association Test, as we know it. It's a relatively easy read, and it can really give you a sense of how these kinds of associations affect our decision-making and communications. I would take those two, as a way to start.

Dr. Nimish Mohile: I agree with both of those. I'd say that many of our health systems have implicit bias workshops and trainings, and sometimes they're online, sometimes they're in person. They do have varying sort of quality. I encourage people to just look at those trainings a little bit differently than they look at all of the other trainings that we're forced to do. To go into those with a little bit of an open mind and a learning experience, rather than one to just sort of check boxes and move on. I think you can learn some things about yourself from them. One of the things I encourage folks to do if they're interested in more information about anti-racism is to do something like the 21-day Racial Equity Challenge - you can Google that. Kind of small bite-size openings, and then there's talks about biases, but also helps you sort of understand some of the foundations of racial inequity in this country.

Dr. Alissa Thomas: Thank you so much. That's all the time we have for today. I really want to say thank you to Dr. Hamel, and Dr. Mohile for sharing your perspectives on addressing implicit racial bias in oncology, and tips for improving communication with patients and providing culturally-sensitive care.

And thank you to ASCO for providing this platform for us to discuss. Thank you to all of our listeners, we appreciate you turning into this episode of ASCO Education podcast.

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In this Oncology, Etc. episode, hosts Patrick Loehrer and David Johnson interview hematologist-oncologist and scientist Dr. David Steensma, who currently serves as Head of Global Hematology at Novartis. In Part One of the episode, Dr. Steensma shares about his career journey from astronomy to medicine, and from academia to industry. We’ll also learn about the discovery and significance of a new pre-malignant condition - Clonal Hematopoiesis of Indeterminate Potential (CHIP).

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org."

TRANSCRIPT

Dave Johnson: Hello, everyone, I'm Dave Johnson at UT Southwestern, in Dallas.

Pat Loehrer: And I'm Pat Loehrer from Indiana University, in the Center of Global Oncology in Indianapolis.

Dave Johnson: And this is another episode of Oncology, Etc.

Pat Loehrer: Yeah. Before I get started, I'm going to ask you a quiz. Do you know what a myrmecologist is, Dave?

Dave Johnson: Is that somebody who studies snails and conches, or no?

Pat Loehrer: No. Not even close.

Dave Johnson: Okay.

Pat Loehrer: Do you know what a philatelist is?

Dave Johnson: I thought it was maybe a small cardiologist.

Pat Loehrer: Someone who studies mermaids - no, no. A myrmecologist, actually, is a subject of this book that I just read called, Scientist, it's a story about E.O. Wilson. It's a biography of him. And I didn't know that much about him.

Dave Johnson: Oh, ants.

Pat Loehrer: Yes. Yeah. Richard Rhodes wrote this book. Actually, it's a great read. I mean, he grew up in Alabama, at the age of seven, he was fishing. And fishing, the hook got caught in his eye, he kept on fishing. He didn't seek medical attention. And later on, he ended up losing his vision in that eye, and his other eye was perfect. So, he used that to focus on little things - he loved ants and butterflies, and at the age of 18, he discovered the first colony of fire ants in the United States, eventually, went to Harvard. He was instrumental in creating the Encyclopedia of Life in which they're basically doing this global database for 1.9 million species. He was a bit of a controversial, but a very proactive person with conservation. He said basically that destroying the rainforest for economic gain is like burning a Renaissance painting to cook a meal. And he's talked about the Brazilian rainforest in which less than 1% of it is now present as it was compared to 100 years ago.

It's really quite amazing. His study of ants, the best quote I have from that is he said, "Karl Marx was right." He says, "Socialism works, it's just that he picked the wrong species." So, that's my book today, but I'm gonna turn it over to you, Dave, to introduce our speaker.

Dave Johnson: Well, we're very fortunate today to have David Steensma on this episode of Oncology, Etc.

Dr. Steensma is a highly accomplished physician-scientist, and an internationally recognized expert in the diagnosis and management of myelodysplastic syndromes. He has numerous academic accomplishments, ranging from characterization of the prevalence of JAK 617F mutations in MDS, first description of the involvement of the IR3G in human neoplasia, and more recently, the initial definition of Clonal Hematopoiesis of Indeterminate Potential, or CHIP - more about that later.

Dr. Steensma is a graduate of The University of Chicago Pritzker School of Medicine. He obtained his Internal Medicine and his Hematology-Oncology fellowship training at the Mayo Clinic in Rochester. In the early 2000s, he served as a post-doctoral research fellow and visiting scholar in the molecular biology hematology laboratories of Dr. Douglas Higgs, and Richard Gibson at Oxford University. He has served the medical community in many ways, including on the FDA ODAC Committee, a fun activity if there ever was one, Educational Chair of the 2015 ASH annual meeting, and also as a member of the ABIM Hematology Examination Committee, as well as many others.

He is currently the Global Hematology Head at Novartis Institute for Biological Research, where he oversees early-phase development of malignant and non-malignant hematology drugs within Novartis. Prior to moving to industry, he served as the Edward P. Evans Chair in MDS Research at Dana-Farber Cancer Institute in Boston. He's an enthusiastic philatelist. We'll talk about that a little bit more later in the podcast.

So, David, welcome to Oncology, Etc, and thank you so much for joining us.

Dr. David Steensma: Thank you for having me. Honored to be here.

Dave Johnson: Well, why don't we start by asking you just to tell us a little about yourself. Give us a little of your background, where you grew up, about your family, and very importantly, what and who influenced you to pursue Medicine as a career.

Dr. David Steensma: Yeah. So, my family is mostly in Michigan. My parents live there now, my sister, you know, extended family - my wife is from there. And when the Dutch came to the US during the great immigration wave around the turn of the 19th into the 20th century, a lot of them settled in Western Michigan-

Pat Loehrer: Dave Johnson was there.

Dr. David Steensma: -watching this happen? So, a lot of them settled in Western Michigan. I think it reminded them of home, you know, flat, sandy, big body of water to the left, similar kind of climate, and that's really my origin as Dutch immigrant community on both sides. I grew up in New Jersey though, partly because of the Vietnam war. And my dad getting a low number when he was drafted and having to move there, and then they stayed there for decades, and that's where I grew up.

I went to college thinking I wanted to do Physics and Astronomy - was fascinated by Astronomy, Astrophysics. Thought that that was gonna be my career, had a job as an undergraduate, working as an observatory assistant, to this day, probably the best job I've ever had. And then, I finished all the courses for my major, I took a course in Cell Biology just for fun, and I thought, "Wow, this is really interesting," and started thinking about going to medical school instead, and took Organic Chemistry over the summer between my junior and senior years of college, and one thing led to another, I ended up applying to medical school instead.

I don't have any doctors in my family. My grandfather worked for Roche as a chemist, his whole career. That's the closest we get to Medicine in previous generations. My father was an Aerospace engineer, my mom, a school teacher. You never know what pathways life is going to take you down.

Dave Johnson: Actually, I majored in Mechanical Engineering and I love Physics, so I get it. I mean, there were answers there. Medicine has always been a little more puzzling where they create these different words that you have to memorize. But I love people who have gone through the sciences like this.

Again, you've had a terrific career in academics, and now you've moved to industry. Tell us a little bit about that transition. What was the attraction, and what have you found to be the differences between the academics and your role now in Novartis?

Dr. David Steensma: I love being an academic, and you know, I envisioned that I would retire as such, but you know, things changed a little bit in 2020. It was a very unsettled time, I think, a lot of us thinking about what we were going to do for the next stage of our career. I was also turning 50 at the end of that year, so, milestones like that tend to make us think about where are we going. And Jay Bradner, the head of Novartis's Research Institute, called and said, "You know, we could really use a hematologist for leading our Early Development." And I initially said, "No." I didn't think about it. Although, tremendous respect for Jay, he had been a colleague at Dana-Farber, brilliant guy. I had first met him as a medical student at The University of Chicago some decades earlier, and then he called back and said, "Well, just come out and visit and see what we're all about."

And the research institute's just based in Cambridge, Ma. So, it was an easy visit, and one thing led to another, and a few months later, I was leading Hematology Development for Novartis. It really has been a fun transition. I think one of the big attractions for me was being able to do things at a different scale, and I loved Dana-Farber, but I was really getting frustrated with all of the staffing shortages. Clinical trials were really moving slowly, and so, the ability to work with a large range of centers around clinical development was very attractive. And there's a lot of great people at Novartis's Research Institute, it's like a biotech within a larger pharmaceutical company. It's been fun for me also, not just to have that narrow focus on CHIP and myelodysplasia, like I had before, but to be able to be involved in drug development, and lymphoma, and in CAR T, and in sickle cell gene therapy and all kinds of other really fun programs.

So, one of the things I've been a little bit shocked by is actually how similar life as an early drug developer is compared to academia. I mean, the biggest difference is not seeing patients, although Novartis would've let me, Dana-Farber did not. So, I've stopped seeing patients, at least for now. But there's a level of emphasis on science, and on careful clinical trial development that I really appreciate. And in many ways, academia has become a little bit more corporate. You know, greater proportion of the funding comes from industry. There are companies that are spinning off all the time from academic institutions. I like to say my Conflicts of Interest declaration has gotten much easier now because there's only one company to declare compared to before. It was, you know, anyone who you'd done a trial with or an advisory board participation. So, it's more similar than it is different.

I think it would be different-- People have different roles within companies, and I think if I was in late-stage development, really focused on what's gonna be the big value return for the company, that would be a different type of job, and I'd have to think more about the financial implications and the regulatory to a greater degree than I do. I get to work with scientists who are coming up with new molecular glue degraders and calling and saying, "Hey, where's the disease where this might be applicable?" And talking to the chemists about engineering out different liabilities that might be an issue for our patients, and you know, that really is energizing.

Pat Loehrer: You're one of the pioneers in CHIP. Can you talk a little bit about it, and what it means to the average clinician or to the patient?

Dr. David Steensma: CHIP is one of the coolest discoveries in the biology of aging, I think in the last 20 years. And we had long had the sense that as people age, the number of hematopoietic stem cells that they have is reduced. In the late '60s, early '70s, there really seems to be a bottleneck, when in childhood, in young adulthood, we have thousands of different hematopoietic stem cells contributing in our blood cell production. And then, there's like a colony collapse that happens and, you know, at age 75, it's a much smaller number, 10 to 12 in most people. In some people hematopoiesis is dominated by a single clone. But we really didn't have an understanding of the mechanism of why that happened. Until 2014, several groups, including Ben Ebert’s, led by Sid Jaiswal, a young investigator who's now at Stanford, found that somatic mutations that are common in MDS and leukemia, like TET2 and DNMT3A, these are actually common in aging people with totally normal blood counts.

And similar to monoclonal gammopathy of undetermined significance, there's just a portion of the older population that has these somatic mutations. And so, we kind of needed to name for it, and I feel a little bit like what my mentor, from Mayo, Bob Kyle, just one of my personal heroes, you know, he had taken an observation in plasma cell disorders that Jan Waldenström made, that was being called ‘benign gammopathy’, and didn't really have a good name. And he called it MGUS, Monoclonal Gammopathy of Undetermined Significance, a name that, now for more than 50 years, has been part of the medical lexicon.

And so, we did that with CHIP. I wasn't the guy who discovered CHIP, clonal hematopoiesis; it was somebody else's discoveries, but we came up with a definition for it, and a term for it, and it really took off. I mean, that paper has been cited a couple of thousand times already, and it's part of the new World Health Organization classification of hematologic diseases that just debuted this summer. So, that's been a fun world to be involved with, and it has clinical implications. And so, with Irene Ghobrial, who has a special interest in MGUS and smoldering myeloma and their progression to overt myeloma, I founded a clinic at Dana-Farber for patients with CHIP and other related precursor conditions.

So, the most interesting thing about CHIP, I think, is that it not only predisposes the human malignancy, but because these cells, these clonal cells, circulate, they interact with the vascular endothelium in different ways. It's a risk factor for cardiovascular events, it's a risk for death from cardiac cause, it's a risk factor for worse gout, worse COPD, but it protects, mechanisms that we don't fully understand yet against dementia. And we think that what's happening is these cells are getting in the brain and they are replacing some of the microglia that just undergo attrition with aging. So, that's fascinating. Somatic mosaicism has been described in lots of different tissues now; the esophagus, the liver, the gut, the skin. You know, these mutations that we normally think of as associated with malignancy can be found in many different tissues as we age. It's just part of life, as part of the entropy of existence. But in the blood, it's special because there's no anatomical constraints on that tissue in the way that there is with a clonal proliferation in the esophagus. And so, the circulation of the blood is what really makes that special.

Dave Johnson: So, I'd like to go back just for a moment and talk about your corporate life, if I may. I think many of, if not the majority of our listeners, come from the academic world. And so, they're familiar with the day-to-day activities of an academic such as yourself, but perhaps, less so with what do you do during the day as someone who is responsible for early-phase drug development in industry, what does your day look like? Do you come in every morning and meet with the basic scientist, or is there a corporate meeting? How does your day-to-day activity go?

Dr. David Steensma: That's a great question. It's one I get a lot actually, Dave, and I think, you know, because all of us train in academic medical centers, that's a life that's very familiar to us. And what happens in these other arenas - government, industry, biotech - is maybe a little bit less familiar. So, there's a lot of meeting that takes place; meeting with clinical trial teams, meeting with basic scientists, meeting with different operational experts and program managers. So that might involve, "Okay, we have a molecule that this is the safety profile of it. We have two other similar molecules that could go into the same indication, their safety profile is a little bit different. Which one is the one that is most likely to be tolerated and beneficial for patients?"

It might then be submitting packages for regulatory consideration by FDA and other health authorities around the world, and then responding to their feedback when they come and say, "Hey, we're not ready to give you this investigational new drug designation and let you start on clinical trials until you do ABC, and then we have to think about how we're going to do ABC.

It can involve business development, we call it, which is, "Okay, this is our portfolio, but we really need an X or we really need a Y, and biotech company A has these. Are they willing to talk?" And sometimes they come to us and say, "Hey, we've come up with this compound, we really need the power of a big company to take that forward and do a full development. Are you interested in partnering with us?"

I meet with my team members quite regularly in one-on-one meetings, both to talk about specific projects, but also their career development - make sure they're happy and you know, just as in academia, people want to progress to different roles; that's true in the industry world too. You know, connecting people to others and helping them think about what's their next promotion, what's their next role going to look like.

And then, there's a lot of governance meetings. So, these are meetings where we say, "Okay, this clinical trial, should we go forward with this or not? It's gonna be $100,000,000 investment, this is the data we have to this point, you know, should we do this? What are the considerations?" That's a big part of it.

There is travel, you know, during the COVID pandemic era, been much less so. The one thing I always heard people in industry complain about before I made this switch was the travel. There's been a lot less of that, so it's made me happy because it's been a more balanced lifestyle, that's for sure. But there is still some of that; travel to investigative sites, travel to the big meetings like the ASCO annual meeting, EHA, the ASH annual meeting, and some smaller meetings. So, it's a real mix of things.

Dave Johnson: So, let me just follow up with one further question. Do you find that your reading has changed?

Dr. David Steensma: I think that my reading has changed a little bit, but mostly because of the breadth of programs that I am now responsible for. So, in the past, I was very heavily focused, at least within Medicine, on the myeloid world and trying to keep track of developments outside of that.

But now, I really have to pay attention to new findings in lymphoma, and myeloma, and non-malignant hematology to a greater extent than I was. My reading of things outside of Medicine has also been a little bit broader and there's more time for it because there's not the, you know, staying three hours at night and finishing your Epic EMR inbox. One of the things I've really been impressed by is that in industry, there's not a lot of time wasting. A lot of things that we were asked to do in academic medical centers are things that doctors really don't need to be doing. So, I get to read lots of other things too.

Pat Loehrer: Let me follow up on Dave's question. This is a confession on my part. There's so many things that I have done that I don't feel like I'd really qualified to do. There's this imposter syndrome that we talk about. You're now the Head of Global Hematology. Was there a sense as you're taking these steps that, "Wait a minute, this is really a job really too big for me, and I'll try it," or do you just have this innate confidence? How was that?

Dr. David Steensma: I am definitely affected by that, it's a major transition. I'd never done anything like this, and even with the assurance of knowing a number of the people at the research institute that I was going to, being confident in Jay Bradner's leadership, and that of Alice Shaw, who is our Translational Clinical Oncology leader, a wonderful colleague, this was still unlike anything that I'd ever done. And so, I was anxious about it.

You know, ironically, sometimes the things that we complain about become the best preparation for what's coming in life. And about six years ago, Dana-Farber affiliated with a community-based practice in the Brighton neighborhood in Boston, called St. Elizabeth's Hospital and provided hematology oncology services there, and they really needed somebody to go out for heme malignancies. And talk about taking me out of my comfort zone, instead of having a very narrow clinic where I was seeing marrow failure, and MDS, and leukemia, and MPN, and CHIP, patients with these conditions where I really had a comfort level, I was treating patients with HIV-associated lymphoma, and myeloma, and calling a lot of my colleagues back at Dana-Farber for advice.

And I grumbled about being the guy that was asked to do this, but it turned out to be terrific preparation for what I'm doing now because my myeloma knowledge is not obsolete from fellowship 20 years ago. It's up-to-date, I've prescribed, you know, a lot of the newer agents and seeing what the adverse events were, and same with lymphoma, and seeing where the patients' needs were. So, I'm actually really grateful for that experience now, in retrospect. At the time it felt like a nuisance. I had to leave the site and go to the other site, and I had patients in two hospitals, which is not easy, but I'm glad it happened.

Pat Loehrer: I think that's an interesting observation. I, too, was at one point in my career spending time between two facilities, with essentially a private practice that was broad and general, versus the more narrow practice I had at the university. And it was challenging, but I think, like you say, it's so rewarding in many ways, and helped me in my transition from being an oncologist to a Chair of Medicine of a major department, in my later years.

Dave Johnson: Well, this will wrap up part one of our interview with hematologist, oncologist, and researcher, Dr. David Steensma. In the second part of this episode, we'll ask David about an article he wrote on key opinion leaders, published in the JCO a few years ago - very provocative paper to be sure. We'll also explore how he got into and stayed passionate about stamps; a subject about which he's written extensively.

Thank you to all of our listeners for tuning in to Oncology, Etc. This is an ASCO Education podcast where we will talk about just about anything and everything. If you have an idea for a topic or a guest you'd like to hear on our show, please email us at: education@asco.org.

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"An advanced practice provider’s scope of practice can vary drastically depending on where you practice; listen to the ASCO Education’s third episode of the advanced practice providers series, and learn more from our co-hosts, Todd Pickard (MD Anderson Cancer Center) and Dr. Stephanie Williams, (Northwestern University Feinberg School of Medicine), along with guest speaker Heather Hylton (K Health) on what scope of practice is, who or what defines it, and why knowing this information is critical to your oncology care team success.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org

TRANSCRIPT

Todd: Hello everyone, and welcome back to the ASCO Education Podcast, and the third episode of the Advanced Practice Provider series. I'm Todd Pickard, your co-host for this series, along with Dr. Stephanie Williams.

We'd also like to introduce you to our guest panelist today, Heather Hylton. Heather, why don't you share a bit about yourself, what you do, and where you're from.

Heather: Sure. Well, thank you so much. It's a pleasure to join you in this podcast. My name is Heather Hylton. I'm a physician assistant based in New York.

Most of my career has been in oncology, but I've been fortunate to have been able to serve in administrative and clinical roles in organizations in multiple states. So, I'm currently working in the remote care space, and I'm excited to bring this experience to our conversation.

Todd:And Stephanie, why don't you remind our listeners today about your background, and why you have so much experience and really just have a really true appreciation for working with advanced practice providers.

Stephanie: Thanks, Todd. I've worked in oncology for almost 40 years and I've had the opportunity to work with advanced practice providers, both physician assistants, and nurse practitioners for a couple of decades now.

I've been in stem cell transplants and cellular therapy, and they’re absolutely integral to our practice, both inpatient and outpatient in that particular field.

Todd: Well, in today's episode, we're going to be talking about advanced practice providers’ scope of practice; what it is, what it means, who defines it, and why it is important for oncology APPs to know and understand what their scope of practice is.

So, why don't we jump right in? So, I think it's important to define scope of practice first. So, I would like to just offer a little bit of a perspective around that language of scope of practice.

Generally speaking, it is what is allowed by law at any particular state for an advanced practice provider to perform care on patients; what types of patients they can see, what kind of medications they can prescribe and write, what kind of activities they can be in, what kinds of relationships they have to have with other providers and delegating or collaborating physicians.

So, generally speaking, a scope of practice can be very, very broad or it can be very, very narrow. And it really depends on the state and how the state defines it.

So, I'm going to ask Heather to jump in here and can you provide an example or a story, or a case that comes to mind that helps illustrate scope of practice for an APP?

Heather: Sure, I'd be happy to, you know, in terms of how I think about this, very simply stated is, what it is that I'm permitted to do as an advanced practice provider. And the boundaries, as you said around this, are really determined by a number of factors.

So, education, training, experience, my competency, federal law in some cases, state laws, regulations. And this may also include, as you mentioned, specific physician collaboration requirements, facility policy, clinical privileges that are granted by that facility, sometimes payer policy factors in, and then of course, the needs of the patient.

So, one very common question that comes up in the oncology space is, can APPs order or prescribe systemic therapy? And the answer of course, is really going to be determined by going through that checklist of the entities that determine if this is something that that APP can actually do.

So, one example I have is a facility where the module that they utilized for ordering systemic therapy provided system rates only to physicians. And the facility that had been using that module before APPs were widely integrated.

So, there were some innocent assumptions made that the absence of the APPs in the module meant it was “illegal” for APPs to order systemic therapy.

So, in working with this group, we were able to go through this checklist. So, there were no federal or state restrictions on this particular clinical activity, but it needed to be written into the facility policy.

So, criteria for establishing competency were devised. And then an education training plan was designed, implemented, and driving systemic therapy became part of that privileges requests from the APP, and then the systems' rights issues were also addressed.

So, this was truly a success story in being able to safely expand the number of clinicians, who were able to prescribe systemic therapy in a busy and growing facility.

Stephanie: Heather, what does it mean to you (this is a term that our administrators throw around a lot and our nurse managers throw around as well) to practice at the top of your license, whether you're a nurse, physician assistant, or an advanced practice nurse; what is the top of your license?

Heather: Well, this is a hot topic. And top-of-license practice really comes down to role optimization. It is just good business. It means that the patients and the caregiver's needs are being met by the professional with the appropriate training, experience and competency for each function or task that the professional performs.

And from an engagement standpoint (which I know is not the topic of our conversation today, but it is important) we know that people want to engage in work that they find meaningful.

While that definition certainly is individualized, a common thread is being able to leverage that education, training and experience you have to help others. And often, the reason why we really pursued our careers.

Todd: I think this is such an important topic to talk about, is the top of license practice, because it really impacts all of us, Stephanie.

You know, as physicians, you want to do what you've been trained to do, which is to assess a patient, have a differential diagnosis, do a diagnostic workup, arrive at a diagnosis, create a treatment plan, and have that treatment plan implemented so that you can care for the patient. And APPs are the same way.

So, when you have folks, whoever they are, whether they are the nurse or the advanced practice provider or the physician or the social worker or the pharmacist, whoever it is; if they are utilized in a way that does not take into account all the skills and competencies that they have to deploy and provide for that patient, they're really working below the top of license.

As an example, if you had an APP go from room to room to room with you seeing patients and the only thing that you had the APP doing was scribing, that APP is working well below their licensure.

And in fact it's incredibly wasteful with limited resources in healthcare, to have folks who have lots of skills and competencies working at a level where you really should have a different member of the team providing that service. Like if you need a scribe, you should get a scribe.

And so, I think that kind of illustration really makes it salient to folks to think about; we should all work to stretch the knowledge and skills and competencies that we spent so much time developing in all of our training and our certification. Because otherwise, it's just wasteful. And as Heather said, it's not very satisfying.

Stephanie: Todd, I think that those are excellent points that you bring out and I think that's very important for people to realize that APPs aren't scribes, they aren't there to extend me. They're there to help me as a physician in my practice, to help the patients actually. And then we should work together as a team to give the best patient care that we can.

But many times I see my colleagues, just as you said, going from room to room with their APP and expecting the APP, you know, “I'll pontificate and tell you do this, that, that and the other, and then you go out there.”

I think also from a career and job satisfaction rating, it's really important to have that team around that can help each other out. And I think that really does help in terms of decreasing burnout and other things like that.

Todd: So, Heather, can you give us some idea of how is scope of practice defined at a state or an institutional level? How do people arrive at those kinds of decisions or, you know, how does an institution decide what the scope of practice is? How does it work?

Heather: Taking a step back and just, you know, kind of thinking about it through different lenses. So, you know, in contrast to physicians whose scope of practice has minimal variability from state to state, we know that there can be a bit more state to state variability for APPs.

And the regulatory bodies or agencies can also be different. And there may be multiple agencies that weigh in on what that APP can do within a particular state.

And so, it's certainly important to be familiar with the Practice Act for each state in which you are licensed. And I would also add onto this, in certain geographic areas, this may be particularly relevant to you if you are in a practice that has multiple locations in multiple states, but we'll come back to that a little bit later.

But, you know, again, kind of going through your checklist, starting off, looking at what the Practice Act says, and these can all be written up in many different ways. Sometimes it comes across as what I would call like a laundry list, which when you first read it, seems pretty straightforward, but it can also kind of lead you into some issues because if it isn't on there, then what does that mean?

Some Practice Acts are written up really more on the basis of what activities are excluded or things that you cannot do as an APP. And then some are just kept very broad, which sometimes makes people uncomfortable, but I would encourage you to not be uncomfortable with that because sometimes, they're written this way in order to give you more flexibility to set that scope of practice at facility level, which is ideally where you really want to be cited. You don't want to create something more limiting or more restrictive than what the state actually allows you to do.

Todd: That is a critically important point and one that in my 24 years as an advanced practice provider who happens to be a PA, that has come up often and frequently is, “Well, it doesn't say this” or, “It doesn't specifically exclude that. And so, we're uncomfortable.”

And my response is, “Well, that gives us an opportunity to create this space”, because, you know, many times, as you point out, Heather, these kind of ambiguities are written intentionally, so that local practice decisions can be made, so that physicians and advanced practice nurses and PAs can decide as a team, how do we work?

You know, in my state, it was very specific that they wanted APPs and physicians to collaborate on ‘what does our practice look like?’ And every local level, outside of those very large kind of rules about who can prescribe and who can pronounce a patient dead or write a restraining order — outside of those very large things, they really want us, they want the care team to figure it out and to do it in a way that's best for our patients.

I think that is the best approach, is when we get to decide how we work. You know, the places, some of the states that have these laundry lists, you're right, Heather, it seems like, “Oh, that's easy,” but then you're like, “wait a minute, there's only 10 things on this list and we do, you know, 57, what does that mean?”

And so, I think it can be very disadvantageous when you have those lists. And I do think it's important to think through these things, work with your legal colleagues to analyze these things, and then take an approach, stake out some territory, you know, once you've gotten informed and say, “This is what our scope looks like, we've all talked about it and this is how we're going to work as a team.”

So, that's wonderful when you've got that level of flexibility. I think that's really great.

Stephanie: Does insurance reimbursement play any role in terms of scope of practice, either locally or nationally?

Heather: It absolutely can. And it's important to know, for example, if you are in a practice, where you're seeing Medicare patients, to understand Medicare conditions of participation.

If you are in a practice where you are taking care of patients with Medicaid or certainly private payers as well, like understanding what is actually in those contracts, so that you can make sure that you are either updating them if you need to, or making sure that what you need to be able to bill for is billable within those contracts.

Todd: It's really interesting because I always have a sense of feeling like I need to cringe when somebody says we can't do this because of a reimbursement issue, and also, partially laugh.

And the reason why I have both of those reactions is it's typically a misunderstanding, because saying that we won't reimburse for oxygen unless a physician's order is present to prescribe the oxygen does not equate to only a physician can do this.

And so, you constantly have to kind of explore these issues and say, “Okay, so yes they use the word physician, but as an APP who has a collaborative delegatory relationship with a physician, and according to my state license and scope of practice, I write physician orders.”

So, if you connect those dots, if I, as the APP, have written the physician order for the oxygen, it meets your criteria. It doesn't say a person who holds a medical license, it says physician order.

And so, I think that's where you have to really constantly be on guard about these misconceptions, misunderstandings, and these ambiguities.

And as Heather said, working with APPs, you just have to say, “Look, there's going to be ambiguities, we're going to work it out, we're going to figure it out. And, you know, reimbursement is important.”

But you have to remind folks that reimbursement doesn't define practice, it defines how you get paid.

Stephanie: Excellent point, Todd. Excellent.

Heather: I'll add a story to that as well. When I first came to New York, I became aware of a situation where the narrative at a particular facility was that a major private payer would not reimburse for services provided by PAs.

Now, I thought that was a little strange, but, you know, I was a new kid in town, but at that time — there are more now, but at that time there were 10,000 PAs in New York. That's a pretty big number. And so, I thought, you know, I probably would've heard something about this if this major payer would not reimburse for these services.

So, to help with the situation, I started doing the research, you know, looking at specific information from the payer, checking with connections at other facilities to learn about any issues that they may have experienced with this payer, checking with our national organization and so forth. And really, nothing was coming up, suggested that the payer would not buy reimbursement for services provided by PAs.

And ultimately, it came down to something very simple, which was the facility just didn't have this in their payer contract, they hadn't needed it up to that point. So, it made perfect sense and it was fixed once the issue was identified.

So, this goes back to just being very vigilant about the research that you're doing. And sometimes, it takes a little time to get to the solution, but really that perseverance does pay off.

Todd: Heather, I'm sitting here, I'm laughing because I just had a recent example of where the right and the left hand within a state had no idea what was happening.

So, an employer who does ambulatory outpatient treatments at different retail locations (we'll just leave it at that) there was this concept that PAs as an example, were ineligible because of the state requirements that then were reflected in this company's policy.

And what was so interesting is that a PA colleague of mine started investigating and I said, “Well, what does the state law say?” And she went and she looked and she said, “Oh, it was changed last year that this thing that was causing this policy in this employer was changed.” And I said, “Well, does the company know that the law was changed?”

So, she reached out to the medical director who was a physician, whose daughter was happening to want to go to PA school. So, she had an in, she had an in right away, which serendipity does play a part here. And she said, “Did you know that the state law changed?” And they said, “No.”

And so, she sent them the state law and then within a week, the medical director said, “Oh, just so you know, we're hiring PAs now, we've updated our internal policies to reflect state law.”

So, sometimes it's just these small things that people forget the details, that when something changes, you have to reflect that in your policies of companies or institutions or your practice group.

And that's the one thing that I think is so different for APPs from physicians. Physicians are kind of just granted this big broad authority and it rarely changes. It's very stoic and it's kind of fixed. But for APPs it is constantly in flux, constantly in flux.

And that's just the nature of it. I don't know why it's been that way. We've organically developed this in the United States over the past 50 years, maybe 50 years from now, it'll be different, but right now, it's not.

And so, I think that's the important thing is there's more space out there for advanced practice, scope of practice and top of licensure, than you think is possible. It just requires a little work.

Heather: I will say that I 100% agree and, you know, when you take a step back from some of these, like these Practice Acts, they tell a story about the climate in the state and the history in the state.

And it's quite fascinating if you like that. I'm not the most fun person at a party, but, you know, these things, they tell a story and it gives you a good sense of what's actually going on in the micro environment in that state.

In the last year plus, I've spent a lot of time reviewing Practice Acts of most of the states of the union, and so, I have this ability to really compare. And I also know which states I really, really like and which ones are a little bit more challenging.

But there are things like even legislation that’s left over from the industrial revolution that's actually influenced how a particular pharmacy interprets, you know, whether or not they can accept a prescription without a counter signature from a physician.

And so, some of these things, like when you start drawing some of these lines, it becomes very interesting and it definitely comes down to some interpretation as well.

So, always being able to work with a good legal team or people who do understand Practice Act information and working with your state resources as well, as well as your national organizations can be very impactful.

Todd: I would also say step one is to pull up whatever Practice Act is influencing something and read it. They are in English, they're not in Latin or French, they're in English.

And many times, you can find something very plainly said. Other times you do need your legal friends to help you understand, “Okay, now what does this mean? I read the words but it's not clear.”

But sometimes it will say, you know, “An APP may prescribe a controlled substance.” Period. So, oh, well, there's an answer right there. Now, there may be a how-to section later, in another part of the regulatory or administrative code within a state, but for the most part is, don't be afraid to look, don't be afraid to phone a friend and explore and ask questions.

Stephanie: You're eligible though for controlled substance licenses nationally, right? A DEA number?

Todd: That's a hot topic.

Stephanie: Is it?

Heather: There may be other things that you need to do within a state as well in order to prescribe.

So, for example, in Massachusetts, even to prescribe legend drugs, you need a Mass Controlled Substance Registration, because any substance that's not a DEA scheduled substance is considered a category 6 substance in Massachusetts.

So, if I'm going to write a prescription for Omeprazole, I need to have a Massachusetts Controlled Substance Registration, as any prescriber would in the state.

So, again, some of these little nuances, making sure that you're very familiar with that and doing the research.

Stephanie: So Heather, you're in New York, I'm sure you get patients from Massachusetts. So, you have to make certain that you can prescribe both in New York and Massachusetts and probably, Rhode Island and all the states around there?

Heather: Well, you bring up a really good point, which is, you know,when you are in a practice that has locations in multiple states, and we can talk about telehealth a little bit later.

But if you are in a medical group that has practice sites, say in Connecticut, Massachusetts, and New York, licensed in all three states, and you work at sites in all three states, say you're an APP who likes to float and you make these commutes each day.

So, all three states may have significant differences in their Practice Acts or what you need to do in order to optimize your practice in that state. And that includes collaboration requirements.

So, some states have the ability for nurse practitioners to have autonomous practice, but there may be other steps where you may need a particular license, in order to be able to do that within that state.

So, again, being very aware of those steps that you need to take is really important.

Stephanie: So, Heather, you mentioned telehealth, which is a big topic through COVID. I don't really have to tell people how big a topic that is. So, what are the changes or what is going to happen with that now that we're “getting to the other end of COVID”?

Heather: That's a big question mark, right? So, certainly, the advancement of telehealth was an important development during the pandemic. And many states have a separate set of laws, regulations that govern delivery of healthcare services through telehealth.

So, if your practice is utilizing telehealth to deliver medical services, it's necessary to be fluent in this information. So, this can include important information such as how a patient provider relationship is established. And, you know, it may also include information on prescribing practices, what may or may not be permitted or the conditions under which a prescription can be provided and so forth.

And so, some states relaxed telehealth-related rules under state of emergency declarations. And so, making sure that you are up-to-date on this as some of those rules have returned to the pre-pandemic state and some of those relaxations actually became permanent.

And of course, if you're billing for these services, knowing the payer requirements and then the policies and procedures you need to follow, in order to bill for those services.

And where the patient is physically located at the time that the service is being provided, is the state in which you need to be licensed in order to provide that service.

So, if Todd is performing a telehealth service for a patient in Oklahoma and he's not licensed in Oklahoma, he won't be able to see that patient.

Todd: It's really strange because telehealth has brought a different layer of perspective around scope of practice and licensure that we hadn't really faced as much before, right?

So, for example, I've been a PA for 24 years. I have been able to call across state lines and interact with patients and talk to them on the phone, get updates on their surgery, if they're having, you know, a postoperative infection, get them an antibiotic and do that kind of work forever.

But as soon as you add that technology and that billing entity called a telehealth encounter or a virtual encounter, it becomes a different animal all of a sudden. And this really came to light during the pandemic.

And we quickly realized all of these things made it impossible. And that's why all the states did all of these emergency declarations saying, “Just forget it, just take care of people.”

But now that we're getting past that, we're kind of going backwards, not because anything bad happened, but because folks are saying, “Well, we want to go back to the older ways where, you know, every state could have differences in regulations and make folks pay those professional fees to get licensure.”

So, it'll be interesting to see how this space develops, particularly since our patients are becoming more consumers. Really, they want to talk to who they want to talk to, when they want to talk to them, and they want service here and now.

And I think we're going to have to continue to respond and adapt to that. And some places will lead and some places will lag. But those lagging places quickly are going to start having conversations within the state and our legislators will respond. I mean, politically, it will change over time. It just, you know, matters how quickly.

So, it's really an interesting thing to watch unfold in real time.

Stephanie: Heather, any final remarks, concerns, advice to those out there, both physicians and advanced practice providers, about how to handle questions about, my God, what is your scope of practice?

Heather: I'm so glad you asked Stephanie because I have a list I might be able to pass them along. So, here we go.

Do take the time to review the state Practice Act information and laws and regulations and of course facility policy governing a practice where you are.

And as the license holder, you are responsible for knowing what you are permitted to do. Please do not make any assumptions about others' knowledge of this. Unfortunately, I've seen people get caught up in that and always own it, yourself.

Generally, recommend facility policy not be more restrictive than what is permitted under the Practice Act of the state. Fact check, challenge your assumptions, and if you haven't had the chance to already do so, do check out the ASCO Advanced Practice Provider Onboarding and Practice Guide for more resources.

Stephanie: Well, I'd like to thank Heather for her excellent insight into this very complicated topic.

Todd, as always, is always on top of everything. And sharing both your experiences and your ideas with us on APP scope of practice, which can vary quite drastically depending upon the state and also the type of institution you practice in.

Stay tuned for our next episode. Until next time, take care.

Voiceover: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review.

For more information, visit the Comprehensive Education Center at education.asco.org.

Voiceover: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

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"Have you ever struggled to remember or pronounce a colleague’s foreign name? In part two of this ASCO Education Podcast episode, host Todd Pickard (MD Anderson Cancer Center in Houston, Texas) continues the conversation on creating more inclusive oncology practices with medical oncologist Dr. Timothy Gilligan and clinical psychologists Dr. Lauren Wadsworth and Dr. Stephanie Pinder-Amaker. They explore identity-related aggressions in the workplace and tips for practicing to recognize and address them.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org."

TRANSCRIPT

Todd Pickard: Hello, my name is Todd Pickard. I'm a PA specializing in genitourinary cancers at MD Anderson Cancer Center in Houston, Texas.

This is the second half of our Cancer Topics conversation on increasing diversity in Oncology, with Clinical Psychologists, Dr. Lauren Wadsworth and Dr. Stephanie Pinder-Amaker, and Medical Oncologist, Dr. Timothy Gilligan.

In part one, we discussed workforce diversity in Medicine in the various prejudices, biases, and microaggressions that can take place in the workplace. We also explored real-world examples of bias in healthcare from Dr. Wadsworth and Dr. Pinder-Amaker's book, Did That Just Happen?!

Today, we're going to continue our conversation by exploring cultural-sensitivity tips for individual healthcare providers and practices. Welcome, everybody.

You know, we could have a great conversation about this for hours, I'm really enjoying this conversation, but I do want to get back to the book. Dr. Wadsworth, are there any anecdotes from the book that you would like to share with us that might illustrate some of the things that we've been discussing so far?

Dr. Lauren Wadsworth: Yes, we would love to. So, each chapter of the book starts with a real story. So, a vignette that's been de-identified of an identity-related aggression happening in the workplace, or some other type of, Did That Just Happen?! moment, as we like to call them. And then after the vignette, we break down what was problematic about that dynamic and what to do about it, both in the moment how to make a repair, and how to change your workplace culture to prevent this kind of thing from happening again, or to reduce the incident. Our hope was that if we started with vignettes, to a point that you made, Todd, earlier, we might be able to welcome folks in that are maybe on the fence about reading a book like this, and instead of bringing up defensiveness, trigger empathy. So by telling a real story, our hope is that folks will have empathy, come up, and then curiosity about how they might be able to do things differently.

Dr. Stephanie Pinder-Amaker: The title of the chapter is, “What's in A Name?”, and this is Dr. Daisy's story.

"Adaeze Adebayo-Opeyemi arrived as the highly recruited young doctor to a tier-one academic medical center on the West Coast. Like many young professionals of color, she had grown accustomed to being one of the few or the only physician of color in her class. Throughout her medical training, she'd rarely seen her identities reflected among the professional staff but knew that she could readily find people who looked and perhaps sounded like her among the hospital's food services and environmental services staff. Sometimes she retreated to those spaces for respite."

"Dr. Adebayo-Opeyemi knew exactly how to respond to her patients' surprise when she introduced herself as their doctor. She knew to pause and wait for them while they awkwardly set aside the meal-request cards they had hurriedly tried to complete when seeing her enter the room. She knew to take a deep breath when they scanned the room for some external confirmation of her credentials - perhaps a nod from an approving white hospital staff member - if she was headed toward their medical chart. Along with reading a chest X-ray and delivering devastating lab results, she had honed these skills in medical school. Still, she was unprepared for the series of identity-related aggressions (IRAs) she faced in this prestigious setting. IRAs, a term we coined to remove the "micro" from microaggressions, would come in all forms - from patients, fellow peers, and supervisors."

"First, due to a misspelling of her last name in the hospital system, Dr. Adebayo-Opeyemi was not able to begin the year with the other incoming physicians. Until the error could be rectified, she was locked out of the medical records she would need in order to care for her patients and complete their orders. Two weeks later, when she was finally permitted to start, her supervisors were frustrated that she was "just learning" to access the medical records and complained to the training director that she was not of the "same caliber" as the other residents. In addition, she found that some of her colleagues struggled mightily to pronounce her name. Others barely attempted. Dr. Adebayo-Opeyemi, ever mindful of how awkward these interactions could be for her colleagues and patients alike, quickly granted everyone permission to "just call me Dr. Daisy!" Unbeknownst to her colleagues, however, in Nigerian culture, an individual's surname is a source of great pride and significance. "Dr. Daisy's" father, Onye Opeyemi, had been a chief. Dr. Adaeze Adebayo-Opeyemi is a descendant of royalty. Her gesture of collegiality in the context of a seemingly simple clerical error had not only undermined a critical professional transition, but it had also begun to erode her sense of self and reputation in the workplace."

Dr. Lauren Wadsworth: Why this is problematic: Dr. Adebayo-Opeyemi's experience illustrates how institutions that are ill-equipped and under-practiced in working with individuals with a range of ethnic backgrounds, and other rising identities can erect significant barriers to employee success. It's easy to see how enduring an environment like this could lead anyone with an underrepresented identity to shut down, lower expectations, and bring only part of themselves to the work. Only a culturally humble and responsive setting would recognize that when Dr. Adebayo-Opeyemi acquiesced, asking the staff to "just call me Dr. Daisy!", and staff complied, they became co-conspirators in the erasure of her ethnic identity. This is an extremely common occurrence where individuals are urged to take on an ethnocentric name, to make things easier for the privileged group.

Todd Pickard: You know, this vignette really resonates with me because I work with many individuals, and I've worked in ASCO with many individuals who have very different names than my European name. Even though people might want to say, “Picard” versus “Pickard”, they're both pretty close. And I find it interesting how many folks will take on an "American name." They may be Asian and they'll say, "Call me Steve," because people can't say their real name.” Or they'll have a very long last name which is very common from where they're from, and they'll say, “Just call me Dr. O." So, I can only imagine how that resonates with folks who experience this.

So, what can we do about this? You know, on an individual level, how can we learn to recognize and ultimately overcome biases and assumptions? I'd like to ask all of you, but I'll start with Dr. Gilligan to bring him back into the conversation, and then we'll each take a turn.

Dr. Timothy Gilligan: Well, I want to start with the brief observation. One of the things I took out of that story, which I think is really central to this whole conversation is, "Whose identity is centered?" And I have many colleagues who don't have European names who adopted European names. My sister-in-law is a Urologist at Harvard, and her name is Golbarg. But in training, she went by "Cathy." "Cathy" is not a name from her family or her background, but it was to make it easier for the white European mainstream American culture. And I think one of the things our trainees encounter when they enter the training environment is that very certain identities are centered, and other identities are not. And for underrepresented minorities and other people with marginalized identities, typically their experience is not centered, and they notice whose identity it is.

And when you have a privileged identity, and I hold multiple privileged identities, you get used to being in a world that caters to you, and I think we have to become aware of this. And this issue of learning people's names is not trivial. When we survey our medical students about their complaints, one of the top two is students of color getting called the wrong name, because they get mixed up, because residents or the faculty don't distinguish different black students from each other or different Asian students from each other.

Todd Pickard: It's a great observation. One of the easiest places to start to have awareness and to be open to learning is to take the time and effort to learn somebody's name, and to recognize people as individuals because we all are. I, myself, have difficulty with names that are not Eurocentric or Czechoslovakian, because I'm also am Czechoslovakian, and also am French. So, anything outside of my comfort zone is difficult for me, but I recognize it, because I respect and value my colleagues. And I know if somebody called me Fred all the time, I'd be like, "But my name's Todd." So, this is something that's important, and I think you bring a great point. I mean, that's a great place to start, but there's more, right?

So, Dr. Wadsworth, what else can one do to learn to recognize and ultimately overcome biases and assumptions?

Dr. Lauren Wadsworth: So, one of our favorite things in life and in the book, for Dr. Pinder-Amaker and I, is to come up with real-time practices that people can do. So, our experience is that so many books on diversity, equity, inclusion, really emphasize what you were just talking about, Todd - building awareness. And then they kind of stop there. You know, it's like focus on building awareness and then get better. And what we're finding is that people really want to do better, and are expressing that desire, but are really struggling to say things like the word "racism" in the workplace, or name “I think a microaggression just happened.” We were socialized not to do that, not to talk about race, but we think that practicing words, practicing language, practicing names, can be so helpful.

So, when it comes to names specifically, some practices that we recommend in the book, and that we've expanded on since are; one, asking someone if you can record their name when they share it with you the first time, so that you can practice it independently, maybe download the VLC app and play it on loop while you're driving into work one day, and that would probably be sufficient to learn it. We also have met with groups that whenever a new person joins, whether their name is Eurocentric or not, everyone in the group repeats their name four or five times as you go around the circle. So, I would introduce myself as Lauren, and everyone would say that four times, and same for anyone else.

You could also, say you are teaching a class, or you have a new resident coming in and you're going to have to take attendance, and you might have to say people's names for the first time before they introduce themselves, which is something that gives people a lot of anxiety. Many of the names that folks have are on YouTube, and you know, three-second clicks, you can look up common pronunciation and do some of that practice on your own independently. You might be wrong about how they're pronouncing it, but you're probably going to be a lot closer than just making something up in your own mind.

We can also practice things like using they/them pronouns in our groups by doing things like deciding that every staff meeting from now for the next three months, we're going to only use they/them pronoun to refer to everyone. So, whether it's a patient or a colleague, we know their gender identity, or we don't, we're just going to use they/them pronouns for everyone so that we can get better at integrating that as something that we do in our everyday language, so that when a patient comes in that uses they/them pronouns, we are able to just do it automatically versus stumbling and trying to learn it for the first time in the presence of someone that could be hurt by our never having practiced it before.

Todd Pickard: That's really an interesting point about practicing. You know, practice does make perfect, right? And you learn from the mistakes along the way.

So, Dr. Pinder-Amaker, what other advice would you have?

Dr. Stephanie Pinder-Amaker: One of the things that we really emphasize in the book and in working with organizations directly is giving people both permission and the opportunity to practice naming the -ism. As we talked about earlier today, for reasons that go directly back to some of the research cited at the outset of this podcast, as society, we have become much more comfortable, for example, with naming sexism, when it occurs in the workplace, right? We know how to use those words. It's not uncommon to hear someone maybe call someone in for a sexist remark, or to call someone out, as the case may be, for having made a sexist remark. But what we're finding is that as people are increasing their sense of urgency and desire to get some of this right, that it's really important to give people permission to name additional -isms, to name racism when they see it. And to hear themselves saying the words, and to hear each other saying the words, because as we talked about earlier, historically, we've really been taught not to say these words in the workplace.

And we really struggle with calling a thing, a thing. To the point made earlier about the importance of validation, that's a big part of validation. Being able to say, "I hear that that happened, and you know what, that really sounds like it stems from a place of racism and it's not okay." That's what validation sounds like. And it's important to give people opportunity to practice saying those words.

Todd Pickard: This is such a fascinating conversation; I'm really enjoying it. I know that we are getting close to our time, so I'll start to wrap us up with a final question for the three of you.

Dr. Gilligan, I'd like to start with you about what tools and strategies and medical practices are you aware of, or that you have used to increase diversity or at least to do diversity awareness and reduction of microaggressions or biases within your own practice.

Dr. Timothy Gilligan: So, my approach, I think is very similar to what Dr. Wadsworth and Dr. Pinder-Amaker are talking about in terms of trying to develop some muscle memory, that this isn't a question of transmitting cognitive knowledge, and if someone just understands it, they'll stop doing it. They need opportunities to practice.

Recognizing it, and then also to practice responding to it when they see it. Whether it happens to you or whether you witness it happening, people need to feel some confidence. Because I think just like oncologists are notorious for talking about death with patients who are terminally ill, even though patients with cancer naturally think about death because people associate cancer with death, I think we have the similar version to talking about racism, as she said. And yet it's guaranteed that the other person's already thinking about it, you're not introducing a new topic. But people need comfort bringing this stuff up and knowing what are some skillful things to say.

I mean, I have a colleague who uses the phrase, "I'm curious why you're comfortable saying this to me," which I thought was a wonderfully gentle way of pushing back when a microaggression was committed. So, we could teach people phrases that work for them. And what works for me may be different than what works for you, but people need a chance to build on that.

And I think the other thing that we're trying to do is, honestly, there’s huge disparities in care. There's abundant evidence that black patients are treated differently than white patients, and Latino patients are treated differently than white patients, and women are treated differently than men. There's actually a meta-analysis in a major journal showing that if you're a woman with an acute coronary syndrome, you're 5% less likely to die if you have a woman taking care of you than a man, because men don't follow guidelines when they take care of women with acute coronary syndromes. And so, just getting the news out there that bias is real, is measurable, is well documented. So, the question isn't whether or not it's happening, the question is, how do we reduce it? And the skills practice I think is really fundamental to them, in addition to the awareness.

Todd Pickard: You know, one of the things we've done in my practice is, we have cultural-sensitive care. So, when patients with different cultures request respectfully, you know, “I want a woman provider because I'm a woman,” and that makes complete sense, it's very easy to accommodate those. But when we find overt aggressions, "I don't want to see a black person. I don't want to see an Asian person." We frame it in terms of safety, and quality, and competency. And so, we change the conversation around the concern and we frame it in, "Well, this is our healthcare provider who is best qualified to give you this safe, quality care." And so, this is how we make sure that you get the care that you need. That generally has worked for us, not always, of course, but I think that's a good way to remind folks that, yes, you can provide cultural-sensitive care, but when there's overt aggression or microaggression, you have to have a strategy to address that with patients, or even with other coworkers.

So, Dr. Pinder-Amaker, what are some other advice that you would give for practices to do better in this arena?

Dr. Stephanie Pinder-Amaker: I think another bit of advice that we often recommend and find helpful, at least we get feedback that people find it helpful, is to decide together as organizations, as groups, as practices, how you want to receive feedback around some of these issues. Really doing that proactively acknowledges that we are going to mess up, and can help free people up from the state that we often experience of paralysis, that we're so afraid that we're going to make mistakes, that we do nothing, and that is not acceptable, that is not going to get us where we need to be.

And so, it's sort of, again, about giving permission to folks to say, "Yeah, we're going to get better at doing this, and it's not going to be perfect, but we are perfectly committed to doing this. And one way that we're going to demonstrate that is to think together as a group, as a practice, how we want to receive feedback when we do mess up, when we make an identity-related aggression, or practice racist behavior, or oppressive sexist behavior.” How do you want that feedback? So, it just gets people sort of comfortable and thinking about not being comfortable with making mistakes, but comfortable with the inevitability that they're going to make a mistake. But as an organization, as a practice, we're going to be able to move through this so that we can keep getting better.

Todd Pickard: Good advice. Dr. Wadsworth, any final thoughts or recommendations, or things to bring to our listeners' awareness?

Dr. Lauren Wadsworth: Sure. I think I'm going to build on Dr. Gilligan and Dr. Pinder-Amaker here and say that it can be helpful to build very explicit step-by-step guidelines for what to do when we've messed up. This is an awkward, uncomfortable, unpracticed topic for, I think, everyone. It's uncomfortable for folks making mistakes, it's uncomfortable for folks who are being harmed, and it's uncomfortable to then talk across identities about these things. So, one example of something that people can do, building on talking about how they want to receive feedback is to make a series of community guidelines for exactly what we want to strive to do when we've messed up.

So, for example, on the table in our meeting room, we have, when you've messed up when you've received feedback that you've engaged in an IRA: Step One: Take a deep breath, you know, notice any defensiveness coming in. Two, say ‘thank you’; express gratitude for people taking the great risk, and great labor, an emotional labor of educating you in a moment when you've caused harm. Three, recognize and name where your IRA came from. So, “That statement I just said came from racism.” You don't have to say, "I'm a racist person." We're naming the societal training that we've been given by saying, "That statement came from racism." And then, talk about, express commitment to exploring why this came up, why you said that racist thing, and a commitment to doing less of it and how you're going to work on that. So, “I'm going to do some reading on other microaggressions that come up around race by quick Google search and try to catch these in advance” and say “sorry” briefly. So, not going on and on, "Will you ever forgive me?” or, “I'm so embarrassed, I feel terrible," and then making yourself the emotional focus, taking the stage, but making a quick succinct apology.

So, by having something that's concrete like that, that's written out, giving the group permission to literally pause and pick up the sheet helps people start to do something that's really uncomfortable with a lot more structured framework, giving us permission to use supports and structures to start practicing this work together.

Todd Pickard: I really appreciate that concrete example. And in my mind, I said, "Wow, I want to use this anytime I mess up." It just gives you a framework to acknowledge it, but not to suck all the oxygen out of the room and take the stage. It's just to say, "Here it is." Well, you know, this has been a wonderful conversation. I'm so appreciative to all of you.

So, thank you so much, Dr. Pinder-Amaker, Dr. Wadsworth, and Dr. Gilligan, for all of your candid and insightful conversations today about the lack of diversity in the workforce, and microaggressions, and implicit biases. I'm sure our listeners are going to appreciate the personal anecdotes and these practical communication tips that you have all shared today on how we can maintain awareness and work together to sustain a diverse workforce. So, thank you all very much.

Dr. Lauren Wadsworth: Thank you for having us.

Todd Pickard: Thank you all so much to all of our listeners. We appreciate you tuning into this episode of the ASCO Education Podcast.

Thank you for listening to the ASCO Education Podcast. To stay up-to-date with the latest episodes, please click "Subscribe." Let us know what you think, by leaving a review. For more information, visit the Comprehensive Education Center at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions.

Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

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"In part two this ASCO Education Oncology, Etc. podcast, healthcare policy expert, pulmonary physician, epidemiologist, and writer Dr. Peter Bach shares what it was like to face his wife Ruth’s cancer and eventual passing − as a husband and as a doctor. The episode also explores delivering difficult news to patients.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

Resources:

• Cancer Topics - Delivering Serious News"
• The Day I Started Lying to Ruth by Peter Bach, MD
• After a Cancer Diagnosis, Wishing for a Magic Number - The New York Times

TRANSCRIPT

Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University. I'm here with Dave Johnson, a Medical Oncologist at The University of Texas Southwestern in Dallas, Texas.

This is the second half of our Oncology, Etc. conversation with health policy and payment expert, pulmonary physician, epidemiologist, and writer, Peter Bach.

In part one, we chatted with Dr. Bach about his upbringing, the trajectory of his career from English Literature to Medicine, and from academia to industry. We also explored his seminal work on drug pricing and improving health equity.

Today, we're going to continue our conversation with Dr. Bach by asking about something deeply personal: his wife, Ruth, who sadly passed away from cancer at the age of 46.

Probably about seven or eight years ago, you wrote a wonderful article in The New York Times, and there was another article you wrote, but the one that I liked reading was called, “The Day I Started Lying to Ruth”, and this is where cancer stabbed you very personally. Can you tell us a little bit about that, and tell us a little bit about your wife, Ruth?

Peter Bach: So, it was in New York Magazine, just to give credit where it's due, I'm very grateful to them for running it. I wrote that after she died, and it followed on a series I had in The New York Times called, The Doctor's Wife, which I wrote while she was getting her initial treatment for breast cancer, and then I walked through the steps of adjuvant therapy that she received, in my experience.

And then the piece in The New York Magazine talks about her last months basically, and my experiences then. The story goes that she was tragically taken from us and tragically taken from my son when he was very young, and my experience being at her side-- and I think I was a good husband, I was present -- was an alarmingly dissociative experience along every dimension. You know, I'd go to her appointment, I would swipe in with my badge. You know, this was my place, and the doctor who took care of her is and was a dear friend, and so were the other doctors in most cases. And the visits, you know, I had nurses and people in the hall would say "Hi" to me. And then I was going through this absolutely devastating experience, you know, tearing apart the sort of prevailing narrative and experience and structure of my life and our family.

And so, for whatever reason, it was this out-of-body experience where I could see stuff very, very clearly. Not only clinical realities, like I knew what was happening, but also the mechanics of healthcare, the interactions, and I felt like I should journal it, if you will. And then when I journaled it, I thought I should publish it, and so I wrote about what it was like to stand there when my friend, Chip Cody, the surgeon said, "This is cancer, I can feel axillary lymph nodes, you’ve got cancer."

And what that morning was like between the-- look, most people have a lump, what's the big deal? We'll go, we'll deal with it. She's young. She had just had a mammogram actually, to that. And then the experience of, you know, and I was in Biostat at MSK. So, I'd sat for a gazillion protocol reviews, I'd read a gazillion informed consent forms, and then there was one in front of her for a randomized trial for adjuvant therapy. I mean, it was Avastin versus placebo versus a longer period of Avastin, if I remember correctly, and ultimately a negative trial I saw at ASCO. But sitting there and actually thinking about like, "What is this like for somebody who doesn't know all of this stuff?" And my wife was way smarter than me, that you guys know me, that is the least surprising fact ever. But it was still dizzying for her.

And so, I wrote about that, like, hawt was our conversation like that night after that whole, like, “Do you want to join this trial?" And her peppering me with questions, like, essentially, “What the hell is wrong with you guys? Why don't you know these answers?" And it was sort of like, "Okay, this is why we do randomized trials, this is why we have placebo. This is–” And she's smart, not irate. She was much more relaxed and philosophical through the whole thing up until the day she died, or a few days before, than I ever was.

So, I wrote about that. Like, what was that conversation like? What was she being asked to do, and how important was it that she did it? And I remember sitting in the room when that trial was presented, and The Kaplan-Meier overall survival curves, and I was pretty sure I saw the step in that curve. I'm pretty sure I saw her on that graph. And it made me-- obviously, I'm desperately sad that she's gone - but it made me proud that she had contributed to it, even though, you know negative studies are important, too.

So, I wrote about those things, and I wrote about prognosis and what it was like to have a conversation when she asked about prognosis, and in an article called ‘Waiting for a Magic Number’, where I described her oncologist saying, "Fine, I'll tell you what are your chances of living five years, you tell me what's the cut point. Essentially, above or below, what number are you going to change things in your life? When you tell me that number, I'll tell you whether you're above it or below it." And it was like, "Wow, philosophy from an oncologist, fantastic." Really sunk in with both of us, and that was it. We never asked that question again, he never gave us a number. And I've been greatly rewarded over the years to run into people from here and there who say, "You know, I always hand my patients that article to put that in perspective."

And then when she died, I wrote about the sheer horror of what was happening to me. And the title wasn't mine, but it was worked right on point. I found myself in a situation where I didn't want to reveal to her just how bad things were, and it was terribly weak of me. And ultimately, and I describe it in the article, got to a point where I just was ready for it to be over, before it was. And I think it's actually not that hard, to be honest, after you've gone through something like this like I don't really care what people think of me. I went through something really hard.

And again, I'm someone with resources, I'm someone with knowledge, I could call her oncologist at two in the morning and he'd answer, that's not something normal people get. And you know, even for me, like this was completely disorienting. And so, that article was very rewarding to write because it allowed me to put it somewhere where I've gotten to revisit it. A couple of years ago, of course, he was young when I published it. He said he had read it; he liked the part about the dog. But I got a lot of notes afterwards from strangers saying that it provided them some comfort that even someone like me went through basically the same experience they went through. And look, this whole, like, "even something like me” seems odd, but I think to the external world, somehow, we're like, "You know, we get those white coats. Stuff is different for us," and of course, it isn't at all.

Since that time, and we're all in the same world, so we have the same sets of friends. We probably have many of our overlapping friends who we know have lost spouses. In recent years, I routinely get phone calls from folks like, "I'm going through this, what's the first step?" You know, and it's about everything. "How do I deal with my kid? Should I go dating?" Stuff like that.

Dave Johnson: You know, Peter, that article should be required reading for every Oncology fellow. I think it was beautifully written, clearly from the heart. I think your undergraduate degree shows in terms of your writing style, but to write that, I'm sure was emotionally challenging and difficult. In fact, Pat mentioned at the start of our podcast, Trillin's book, About Alice. In a book review that was written in The New York Times, About Alice, Trillin made a comment similar to the one you just made, where people that he didn't even know wrote letters in which they conveyed to him a sense of knowledge of Alice, even though he knew they had never met Alice. And I think your article about your wife conveyed that same sense to anyone who did not meet her. And I think you memorialized her in ways that are really fantastic.

But I want to just read something from an article in The New York Times, and this is quoting Trillin. He says, "They may not have known her, but they knew how I felt about her." And he went on to say, "Yes, I got a lot of letters, like the one from a young woman in New York who wrote that she sometimes looked to her boyfriend and thought, "But will he love me like Calvin loves Alice?" I think the same could be written about your relationship with Ruth. And thank you for sharing that. I can't imagine how challenging that must be even all these years later, and I'm glad your son had the opportunity to read that. He should be proud of both his mother and his father.

Pat Loehrer: It was a gift to all of us and mankind. You know, again, as I saw that article, there's a photo of you and Ruth on your last vacation. I think it was from Versailles, and I think you were in the Hall of Mirrors. And I think there's a poignant metaphor there about the reflection of your lives and being with her at that time, and we really thank you. We have all experienced this and it's so powerful there. There's this time when you get a result of a test of someone that you know and love and there's this limbo between, they're so naive and life is good, and it really is a time between heaven and hell in which you're the only one there, in which you know that you're going to go in the room now and change their lives forever by sharing this news. And we've been there and we pause, and again, you talked about that - I think being in a car looking at the x-ray. And that's the essence of when you said, the day you started lying to them, which is understandable because you just don't want to shatter that moment there.

You know, we pause and reflect on that enormity of the moment there and I thank you deeply for sharing that with us because it's something that we physicians find, and this uniqueness of being a physician, and having someone you care about and knowing something that they don't quite know yet. Thank you for all of that.

Peter Bach: The important message is that to patients, it's very isolating. And part of what I think the article did, and this was the message I got at least, was, send a message to other people that you're not alone. That others are going through it, others have gone through it, and I don't know what "it" is in that context, but loss. And there's that wonderful article in The New Yorker called ‘The Aquarium’, which is by man who had a sick child-- and I don't remember all the details, but the aquarium metaphor is, I can't remember if he's in the aquarium and the rest of the world's outside or the other way around, but it's that isolation that is particularly frightening.

And when I talk with my friends who've gone through it, it's part of it. As I just said, you know, there's a lot of us out there. I don't know if it gives so much reassurance. You know, 40,000 women die a year of breast cancer, so there's a lot of people out there.

Dave Johnson: Pat, you had, I think, a final question?

Pat Loehrer: Briefly. You know, now I'm asking to be an academic person there, but if you had a young medical student and you were going to try to give them one lesson about communicating bad news to patients, what would that be?

Peter Bach: I've obviously been in this situation many times. I'm a Pulmonary Critical Care doc, so I've watched bad news be delivered many, many times. And the first mistake I see people make is trying to fill the silence with words, and I think I made earlier reference to it. One of the key skills doctors need to develop is the ability to listen. And sometimes listening to silence is a version of listening, but it's delivering what you have to say without euphemism, with directness. Not everyone's enamored with it, I am. But then giving time to listen, even just space for people to feel safe, that that communication is part of a relationship, not a sort of text message. You know, in today's metaphor, right, that just arrives and the person moves on. That is really hard for people to do; not experienced doctors, for trainees because it's frightening for a lot of reasons.

Over my career, I've certainly rehearsed it many times with people. I made the mistake myself too, of just sort of talking over the thing in the room to avoid, you know, just sort of as you said, the enormity of what you just communicated.

Dave Johnson: So, Peter, I think you're right on. I think that's one of the most difficult things to do, is to allow that pause to take place. And so many, even highly experienced physicians attempt to fill that void when it doesn't need to be filled. Been there, done that, been on the receiving end as well as the delivery end of that. It's always challenging.

You know, we're out of time, and I'm sad about that because we could go on, I'm sure for quite a long time. Want to end this by asking you, Peter, we talked about a book on the front end, both Pat and I love to read, and we share recommendations all the time.

I wonder, is there a book or a podcast, or anything that you think we should read or you think our listeners should know about? And by the way, you can include anything that you wrote if you'd like.

Peter Bach: Yeah, it'd be very au courant to pitch my own stuff here, I would never do that. I like to read as well. And so, I just finished Rules of Civility by Amor Towles. Of course, there's a few health events in it, but it's not to do with anything, but, you know, it's a book about New York. I live in New York, so I just enjoyed every single word of it. I'm newly married-

Dave Johnson: Congratulations.

Peter Bach: -thank you. I feel very lucky. And my wife has noted that I often like to read nonfiction at night. Typically, books about how the world is just going completely to hell. And she's noted that outrage is my happy place, that I sleep extremely well if I read something that's absolutely infuriating. So, the other thing I'll recommend is the book about the Department of Justice has essentially lost its mojo when dealing with corporate crime.

If your best soporific is being absolutely furious, it's right up there with a full dose of Ambien. So anyway, those are my two recs.

Pat Loehrer: I love it. Yeah, Dave and I both love non-fiction. We love that. So, it's great.

Dave Johnson: We've come to an end of another podcast, and we want to thank our listeners for tuning in. We really appreciate your participation.

Remember, Oncology, Etc. is an ASCO Educational podcast, where we’ll talk about virtually anything and everything.

So, if you have an idea for a topic or a guest you'd like for us to interview, please email us at: education@asco.org. Thanks again.

You know, speaking of interesting nonfiction, Pat, if ‘pro’ and ‘con’ are opposite, what’s the opposite of progress?

Pat Loehrer: Oh, I love that - Congress.

Dave Johnson: Yes, Congress. I knew you would get that.

Peter Bach: That is a ‘Dad joke’ if I ever heard one.

Dave Johnson: We don’t have good jokes on this show.

Pat Loehrer: We’re going to have to redo the ending to this because, Dave, you said this was an ASCO Education Podcast. I’m not sure we’ve taught anybody anything on this one.

Dave Johnson: Now, Peter has taught us a lot.

Pat Loehrer: That's for sure. Thank you so much, Peter, for a wonderful interview.

Dave Johnson: Absolutely perfect. Wonderful.

Peter Bach: Thanks for the privilege. It's wonderful seeing you both.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click, "Subscribe." Let us know what you think by leaving a review.

For more information, visit the Comprehensive Education Center at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

View Details

"In part one of this two-part ASCO Education Podcast episode, host Todd Pickard (MD Anderson Cancer Center in Houston, Texas) sits down with licensed clinical psychologist Dr. Lauren Wadsworth, Harvard Medical School professor Dr. Stephanie Pinder-Amaker, and medical oncologist Dr. Timothy Gilligan, to discuss diversity in the US oncology workforce today. Dr. Pinder-Amaker and Dr. Wadsworth share excerpts from their book “Did That Just Happen?!” along with personal experiences to illustrate how various prejudices and micro-aggressions can impact healthcare providers and practices.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org."

TRANSCRIPT

Todd Pickard: Hello, and welcome to the ASCO Education Podcast series. My name is Todd Pickard, and I'm a Physician Assistant specializing in Oncology at the MD Anderson Cancer Center in Houston, Texas. As today's host, I will be moderating a discussion on increasing diversity in Oncology practices with three guest speakers: Dr. Stephanie Pinder-Amaker is a Clinical Psychologist and Harvard Medical School professor; Dr. Lauren Wadsworth is a Licensed Clinical Psychologist in New York and Massachusetts, specializing in OCD and anxiety disorders; and Dr. Timothy Gilligan is a Medical Oncologist and Associate Professor of Medicine at the Cleveland Clinic Taussig Cancer Institute.

Welcome everybody to this interesting discussion today. I'm very much looking forward to hearing from all of you about this important issue.

Let's start with Dr. Gilligan. How diverse is the US oncology workforce today in terms of race, ethnicity, gender, age, culture background, and any other identity factors?

Dr. Timothy Gilligan: Not nearly as diverse as we'd like, particularly, with regard to race. We've made significant progress with gender diversity, and there are many more women in Oncology now than there were previously, and more and more in leadership roles as well. But if we look at underrepresented minorities in medicine, Latinos, Blacks, other groups, the numbers are still very low. 3% of practicing oncologists are black, and 4% of oncology fellows are black, for instance. Fewer than 5% are Latino. And we haven't seen a lot of progress over time with those numbers.

Todd Pickard: That's really interesting to me, Dr. Gilligan, because our population has changed. So why are we not reflecting that? So, can you think a little bit about that? What have you noticed in the diversity in medicine - oncology specifically? Has there been any kind of change in the past couple of decades, or have you observed any cultural shifts during the span of your career?

Dr. Timothy Gilligan: I don't know how to explain the racial disparities other than obviously, the broader issues of systemic racism and bias and gaps in educational opportunities. But even if we look at medicine, 6% of graduating medical students are black and we're still seeing a significantly lower percentage going into oncology. Specifically, if we look at even just Internal Medicine subspecialties, oncology is at or very near the bottom of subspecialties that black residents apply to, to train in. So, I think we haven't done a good job of recruiting black doctors into oncology, and we certainly need more black doctors. And similarly, we need more Latino doctors in oncology as well.

And it's a complicated issue. I think honestly, those of us who are working on that now really see it as a pipeline issue that we need to start as early as high school, to make this career seem attractive. First of all, to get more students of color to go into Medicine in the first place, and then hopefully, once they're in Medicine, to see oncology as an attractive subspecialty to go into.

Todd Pickard: That's really interesting, because we see the same thing in advanced practice for PAs and Nurse Practitioners that we still have a diversity issue in recruiting folks. So, this is something that is widespread in our medical teams. So, this is a really important conversation to be having.

I'm going to start with a different series of questions, and I'd like to ask Dr. Pinder-Amaker if she could respond first. What are the benefits of having a more diverse workforce? What's the impact on our wellness as teams, but also the patient experience? And then we'll ask Dr. Wadsworth to also chime in.

Dr. Stephanie Pinder-Amaker: Thank you for the question, and thank you for having me. The evidence is compelling, and it's overwhelming. We know that there are many, many benefits. Diverse teams are stronger, they're smarter, they're more innovative, more profitable even. We know that this is true across industries, and across organizations, including medicine, and therefore, in academic medical centers. The challenge is that many organizations and systems and academic medical centers struggle to create a true culture of inclusivity and belonging.

So, while there is, and has been an increased focus on the recruitment of individuals who historically have been underrepresented in Medicine, we know that the increase in recruitment doesn't necessarily translate into retention. There's a gap there, and it's really incumbent upon us to close that gap so that we can not only recruit, but retain diverse talent and achieve some of those superior outcomes, including improved patient care, more innovative research, and so forth. And we're aiming to close that gap in a very specific way by creating systems and organizations that are much more culturally responsive.

Dr. Lauren Wadsworth: Yeah. I will just add, this is Dr. Wadsworth speaking, that when we have more diverse clinicians, we know that patients that have minoritized identities like black patients or queer patients, feel more comfortable working with their teams. This might be due to experiencing less microaggressions from black doctors to black patients, for example, and could also be for a number of other reasons. But additionally, we know that even if a patient isn't being seen by a provider that identifies the same as them, teams that are more diverse have the opportunity to have more cross-pollination, more conversations about cultural practices, microaggressions, et cetera, that can then improve the ability for the whole team to provide culturally-responsive and humble care to the patient.

Dr. Stephanie Pinder-Amaker: Incidentally, the whole practice of cultural humility was originally founded by two women physicians of color, specifically to address this gap within hospital systems. And now it's of course taken root across other industries and other relationships that where there's sort of a critical imbalance of power, but it originated to look at addressing the power imbalance between doctors and patients.

Todd Pickard: I am really fascinated to hear Dr. Wadsworth and Dr. Pinder-Amaker's perspective because they are both authors of a recent book, Did That Just Happen?! And I want to talk a little bit about the book, but before that, Dr. Wadsworth, you used the term microaggressions. Could you let our listeners know a little bit about-- I think they may assume what that means, but I'd like to hear an official version of what it means.

Dr. Lauren Wadsworth: Sure. You might be sorry you've asked, because I actually have a lot to say on this topic. So, microaggressions historically has been a term used to describe often common, subconscious slights or statements, or physical movements that enact stereotypes. So, for example, a white woman seeing a black man walk down the street from the other direction, might clutch her purse or change her purse to the other side, which would be a physical manifestation of a stereotype that black men are dangerous. And that would be a microaggression, whether or not she was conscious that she was doing it.

Dr. Pinder-Amaker and I believe that the term microaggressions is really helpful in starting to bring white people and other folks with privilege into the conversation, to start to recognize these unconscious biases playing. And the micro part of that term, we think really prioritizes the person with privilege, in that, it focuses on the smallness of it, the unconsciousness of it, which makes it a bit more palatable for people with privilege to recognize that they might be doing these things if they're not intending to. In our book, we actually coined a new term, 'Identity Related Aggressions' or IRAs, which is a new way of describing the same concept, but prioritizing the impact or prioritizing the person that was hurt or harmed in the instance.

So, by saying Identity Related Aggressions, we're taking out the 'micro' and acknowledging the exponential burden that these experiences can have much like IRAs in financial terms.

Todd Pickard: Yeah. It's really interesting because, as a person who might be identified as a person of privilege, it's really difficult to remember…you may meet somebody that you don't know, and they may have a very interesting accent. And I've done this before, and I've said, "You have a really interesting accent, where are you from?" And I had some social workers with me at the time, and they said, "Todd, I can't believe you're having these microaggressions." And I said, “I am?”. And so, it really is so easy just to slip into these things without even realizing it. And it's great to have this conversation.

So, Dr. Pinder-Amaker, what was the reason to write this book? Why now? What was that about? Tell us more.

Dr. Stephanie Pinder-Amaker: We had many, many motivating factors for writing this book, as you can probably imagine. I'll start with a couple, and then Dr. Wadsworth, you can take it here. One thing is, really to focus on what we're talking about now, like, how do you address this disconnect between diversity and create real inclusivity? It's pretty accurate to say we're fascinated by, intrigued by the practice of inclusivity and cultural humility. How do we work with organizations and people within organizations to move beyond what we refer to as, diversity by the numbers, which also matters, but to actually create systems that are welcoming and inclusive so that when people of diverse backgrounds do enter our spaces, in this case, we're talking about oncology, which have been historically white, that that diverse talent feels welcome, and valued, and seen, and heard. So, we're just really intrigued; What does that look like? What does inclusivity in practice look like? How do you break it down? How do you teach it to people? How do you explain the skills so that people feel empowered to learn them?"

You mentioned, Todd, having been maybe called in by a social worker-- I'm not sure if you were called in or called out in that instance, but even knowing the difference there, is a skill that we want to be able to teach people so that we can get better at creating inclusivity and belongings. And there's real significance in those kinds of details.

A second motivating factor; we're both psychologists, we're both clinical psychologists, we're practitioners, but we're also researchers. So, we were highly motivated naturally to apply evidence-based practices from within our field to understanding and explaining, operationalizing inclusivity. We wanted to do it in a way that would be accessible so that people could really hear it. Like, keep the science, but lose the jargon. How do you make this information practical, accessible, so that people can hear it, not turn away from it, lean into it, and also feel empowered? Like, “I could actually do this.” So, there's effort to both do it, but also to make it plain. And those two things were significant motivating factors. And Dr. Wadsworth, why don't you talk about a broader one?

Dr. Lauren Wadsworth: Sure. I'm guessing you mean our personal motivations? Am I right?

Dr. Stephanie Pinder-Amaker: I think you're right.

Dr. Lauren Wadsworth: Okay. So, as people who hold marginalized identities or rising identities, which we're also trying to use both of those terms interchangeably, me as a queer woman, and Stephanie, as a black woman, we often had the common experience of being the only, or the pioneer in each of the places that we worked. Coincidentally, those were often medical settings or academic medical centers. So, to Dr. Gilligan's point, we experienced the lack of diversity ourselves. As a result of being the only, or the pioneer, we frequently experienced not only Identity Related Aggressions, but simultaneously requests to train those of our colleagues on how to become more culturally aware and responsive.

So, we were given the label 'diversity expert' just by entering the room, in Dr. Pinder-Amaker's case, or coming out, in my case, in the workplace. And so, there was a lot of ambivalence there. We didn't seek to become diversity experts in our careers yet we're continuously given that forum and felt that we did have things to share just from our personal experiences. So, over the years, we ended up working in the same institution, and experiencing the same pattern, and finally finding each other, and finding a lot of support and solace in our work, discussing that experience together. And our hope was that we could create a booklet of advice that could be both validating, to those who are also experiencing Identity Related Aggressions in the workplace, and informative, and welcoming, for those in leadership to change things at their institutions.

Todd Pickard: I really enjoy your story. And if folks could see us, they'd say I'm nodding my head a lot when you guys were talking, because so much of what you say really resonates with my own experiences and the things that I've witnessed in my 24 years practicing. I appreciate the fact that you are trying to make this welcoming, because when people become defensive, they stop hearing, and they don't learn. So, when it is presented in a way that brings them in and gives them permission to engage and ask questions in a truly thoughtful way, I think that's where you have the most impact. I'm very, very much aware of and appreciate the fact that y'all are doing it. I want to pull Dr. Gilligan back into the conversation, and I do want to hear more about your book, so we'll come back to that.

But Dr. Gilligan, from your experience as the Diversity, Equity and Inclusion Officer for the Cleveland Clinic's Graduate Medical Education Council, could you tell us about diversity and inclusivity in medical training programs? Are the trainees prepared to succeed in a diverse workforce, or do they experience any issues in this area?

Dr. Timothy Gilligan: They certainly experience issues. And you raised one of the issues; microaggression and Identity Related Aggressions are commonplace. That's been studied and documented, that trainees experience these regularly, both women and people of color. I don't know as much about the LGBTQ space in terms of how much that's been documented, but I do know anecdotally from colleagues here, that that happens as well. So, it's a big issue. This takes place at some of the levels that we already discussed; you show up in the program, and you're the only person who looks like you. And you're trying to find a mentor, and you can't find a mentor who looks like you. And so, there's structural problems that the lack of diversity makes it harder for people of color and other oppressed identities, for people to feel welcome, at home, competent.

There's an issue of stereotype threat, which describes the process where people underperform because they're worried about conforming to negative stereotypes that people hold about their identities. And so, there's been interesting research on this, that black students or other students of color may not perform to their potential if they're noticing they’re not set up to succeed intentionally. So, I think the learning environment issue is important. One of the things that we're trying to do is to train faculty to be more aware of these issues, issues of implicit bias. There's evidence that people performing at the same level are judged differently based on their identities, particularly around racial identities. Written documents; if you tell someone that is written by a white person it will get evaluated at a higher score than if you tell them it was written by a black person, there's been evidence in the legal world about that.

So, students come in and they encounter the same bias in medicine that they're going to encounter everywhere else and that can feel like a hostile environment, or unwelcoming environment. So, I think a lot of the stuff that has been discussed here already in terms of making people aware of oppressive behaviors of microaggressions, of implicit bias, so that we can start to do those behaviors less, or at least be aware of them when they have been, and respond to them. And then put into place support so that people feel like they are supported. So, one of the things we're doing is put in mentorship programs so that people can find mentors who look like them, and talk about their experience. It doesn't mean that all your mentors are going to share your identities, but at least to have access to people who share your identities, and could share the difficulty attached to those identities, of succeeding in a world that is to some extent, still dominated by white men.

But again, it's a multifaceted thing. I think we're trying to change the culture from the top-down. If we diversified the institution, then the students are training in a more diverse environment, and feel more welcome, feel more supported. As people have more tools for recognizing bias, and reducing it, and responding to it when it occurs, people feel, I think, more supported there. I think one of the things that I find is that there's a sort of crazy making psychology where someone experiences bias and no one believes them. And then they're left wondering, "Is it just me? Is it just in my head?" And so, I think validating people's experiences…

The last thing I'll say, one of our Diversity Officers we asked him, "What are some things that we can do today?" The first thing he said was to begin validating other people's experiences of their own life. If we just do one thing, like just focus on microaggressions, that's not going to do too much, it requires a much broader strategy from recruitment to faculty training, to the educational environment.

Todd Pickard: I think that what you've said is so important. I want to highlight; it is not just about microaggressions. Implicit biases that we all bring from our experiences are really important to acknowledge. It's very easy to say, "Oh, this person looks like me, so they must act like me, and share the same values as me."

And I'd like to ask Pinder-Amaker, what we're discussing is something that is not just a white person issue. It's about all of us, all of us depending on where we come from, and our background, and our experiences may have biases. Can you expand on that a little bit? I have friends who are from Africa, they're from Ghana. They have black skin, but they have biases against American black people because they think American blacks are lazy. And so, what I'm talking about is how it's not just the color of the skin that makes you capable of having implicit biases or microaggressions. It's larger than that.

Dr. Stephanie Pinder-Amaker: In the opening question, there was a nod to what we mean by diversity. We're talking about diversity across social-cultural identities. We use a specific framework to help remind us about how expansive social-cultural identities are. And that happens to be what we often refer to as probably the longest acronym in the world; it's The ADDRESSING Model, by Dr. Pamela Hays. And ADDRESSING each letter of the word reminds us, directs us to a very specific aspect of identity, so that we are focused on, "Oh yeah, there's diversity." Yes, we're talking today, a lot about race and ethnicity, but also, there's age, ageism and ableism. And people hold historically minoritized identities, and oppressed identities, and statuses across these social-economic status, and sexuality, national origin, as you may have referenced earlier, religion, and so forth.

And so, when we're working with systems to think about just what Dr. Gilligan mentioned earlier - why it's so important to have multi-pronged, systemic and holistic approaches - we don't have time to do one thing at a time when it comes to really addressing some of these very structural and systemic barriers that occur across a broad range of social-cultural identities.

Todd Pickard: Well, this concludes part one of our discussion on increasing diversity in Oncology, with Clinical Psychologists, Dr. Lauren Wadsworth, and Dr. Stephanie Pinder-Amaker and Medical Oncologist, Dr. Timothy Gilligan.

In the second part of this episode, we will discuss the importance of using correct pronouns, and consider different approaches to learn or pronounce a person's name.

We will also explore culturally-sensitive tips for individual healthcare providers.

Thank you to all of our listeners for tuning into this ASCO Education Podcast. If you have an idea for a topic or a guest you'd like to see on the show, please email us at: education@asco.org.

Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click "Subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at: education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

View Details

"In part one of this two-part ASCO Education Oncology, etc. podcast, hosts Patrick Loehrer and David Johnson chat with health policy and payment expert, pulmonary physician, epidemiologist and writer Dr. Peter Bach about his background and career. Dr. Bach, who created the Drug Abacus, shares his views on cancer drug pricing, based care, and health equity.
If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org."

Dr. Patrick Loehrer: Hi. I'm Pat Loehrer. I'm Professor of Medicine at Indiana University and Director of the Center for Global Oncology and Health Equity.

Dr. Dave Johnson: And hi. I'm Dave Johnson, Professor of Medicine at UT Southwestern in Dallas.

Dr. Patrick Loehrer: And this is Oncology, Etc. Welcome to the show. Dave, what have you been reading. There's a book that we chatted about earlier that I think might tie in today's discussion. It was called About Alice. And we both had a chance to read that book. I've met Calvin Trillin.

Dr. Dave Johnson: Yeah. We read it a few years ago. I think I recall us being at a meeting in San Francisco, and you mentioned the book to me. And actually, Calvin was a guest and a speaker at that particular meeting, so we both got a chance to have our copies autographed by him. It was an amazing book.

Dr. Patrick Loehrer: Yeah, just for the listeners, Calvin Trillin is a wonderful writer for The New Yorker, and his wife had cancer, had treated, and unfortunately developed complications in that. And this was kind of a memoir to this. One of the things I love is when they first met, they met at a cocktail party, and Alice was just stunningly beautiful—there's a picture of her in the book—and Calvin is not. He looks like Dave and I combined. But their eyes glanced, and in the book, he talks about the fact, years later, Alice said to Calvin, “You have never been as funny as you were that night.” And Calvin says, “You mean I peaked in December of 1963?” And Alice goes, “I'm afraid so.” So that resonates with me a lot, actually. But Dave, why don't you introduce Peter?

Dr. Dave Johnson: Yeah, happy to do so. It's been terrific to have him on today. Peter is a health policy and payment expert, pulmonary physician and lung cancer epidemiologist. He's a true Renaissance man. Peter spent nearly a quarter of a century at Memorial Sloan-Kettering, where he served as director of the Center of Health Policy and Outcomes. He has devoted his career to repairing defects in the healthcare delivery system that impede access to high-quality cancer care, and working to ameliorate healthcare cost crises. His work spans seminal studies, including the identification of racial gaps in lung cancer care, the development of the first lung cancer risk prediction model, lead authorship on multiple lung cancer screening guidelines, and definitional work on pharmaceutical pricing and value.

Last year at about this time actually, Peter moved to become the Chief Medical Officer of Delphi Diagnostics, a developer of blood tests for early detection of multiple types of cancer. Peter received his undergraduate degree from Harvard and medical degree from the University of Minnesota. He then took internal medicine training at Johns Hopkins, followed by a fellowship in pulmonary and critical care at the University of Chicago, where he served as a Robert Wood Johnson Foundation clinical scholar.

Along with his prolific scientific writing, Peter is a regular contributor to The New York Times and other newspapers. He is a frequent but fair critic of pharmaceutical drug pricing in cancer and a staunch advocate for value-based drug pricing. In addition, he has written extensively on a number of personal and provocative topics ranging from the death of his wife, medical school tuition funding, to setting physician reimbursement based on market forces.

Not surprisingly, he's amassed a number of accolades over the course of his stellar career, including, to mention a few, election to the American Society of Clinical Investigation, the Association of American Physicians, and the Johns Hopkins University Society of Scholars.

So Peter, welcome. Thank you very much for joining us.

Dr. Peter Bach: Oh, it's a real pleasure, Dave and Pat.

Dr. Dave Johnson: Well, why don't we kick things off by starting with a question we ask almost all of our guests? And perhaps just give us some little of your background, your upbringing, your early life?

Dr. Peter Bach: I'm a faculty brat from the University of Wisconsin. Both of my parents were on the faculty there. I grew up in Madison, which was a bucolic place. And I think early on was expected to be a doctor. My major defection from that was I majored in English literature in college, but I ultimately had a chance to circle back to that opportunity, spend a month with Nancy Ascher actually following her around one summer after I graduated from college, holding retractors during liver transplantation surgeries and other things. And it was a transformational summer for me. I hadn't been, you know, sort of pre-med, but that summer after college, the proximity to the human experience that being a doctor afforded and the opportunity to help people and use the few abilities I had in a productive way convinced me I had to go be a doctor.

And so I taught English for a couple years after college at two different boarding schools, and then went on to medical school with that very much in mind. I’m really privileged to have practiced for as long as I did before I turned most of my attention about a decade ago exclusively to research and policy.

Dr. Dave Johnson: That experience as a literature major, I think, is really an important one for medical students today. We still focus on science, which of course, is absolutely critically important. But the humanities are also extremely important, in my opinion, to that transition from being a doctor to being what I call a physician, someone skilled in the art of healing, and not just the knowledge of science itself.

Dr. Peter Bach: I agree with you. I think a core competency of practicing doctors who are empathetic and also who are better diagnosticians is having good listening skills. Listening and elicitation skills. I don't know if that comes from majoring in English, but you know, I think those sorts of perspectives that the person is more than just a vessel of signs and symptoms, I think, lays the groundwork for doing that well, I hope. The origin of the word doctor is, of course, teacher also. And so, communication is vital.

Dr. Dave Johnson: You mentioned that your parents were teachers at the university. What were their specialties?

Dr. Peter Bach: My father, who's gone now was a physician, but never practiced. He was a transplantation immunologist, laid much of the groundwork for solid organ transplantation and major histocompatibility complex was defined in large measure by his work and several others. He was the scientist who did the immunological compatibility work that led to the first bone marrow transplant, actually. And then my mom is a biochemist and also worked in genetics on the faculty there. And then they both moved, although separately, to the University of Minnesota, where I ultimately went to medical school.

Dr. Patrick Loehrer: So did it break their heart when you said you wanted to go into literature?

Dr. Peter Bach: No. What broke my father's heart was that I became an epidemiologist, which he always considered not really science.

Dr. Patrick Loehrer: Actually, I was thinking one of my favorite poets is William Carlos Williams, who just hung out in Paterson and delivered, I don't know, 1000 babies, but he used that experience with the patients to help guide his poetry. But I think as we get older, every patient we see, there's a little story in there that's really kind of unique. And so it's a great opportunity. Tell us a little bit about this transition from academia to industry. Is that an easy role? Tell us a little bit about that journey.

Dr. Peter Bach: Yeah, the transition was easy although not pre-planned, expected at some point. I'd reached a point in my life where I had done a great deal of things in the academy that I'm mostly proud of. I had accomplished a number of things that I wanted to accomplish. And like many researchers and, my health care policy work I consider to be research and exploration, I had reached one of the many plateaus you get to where I thought many of the questions and issues I'd worked on, I'd sort of resolved. Not that they had been fixed, but I had done the amount of disarticulation that I sought to do in that work.

And so I had reached a point where I wanted to figure out what my next new topic was, which I do, and have always done in my life for about a five-year cycle. And I decided my next topic was I wanted to do something new and work on something totally different, although with a lot of resonance to my past work. And the new thing I wanted to do was to be an operator, to work in a in a startup environment where I could play a small role in developing not only potentially important technology, and there's a scientific question in there that matters, but also build the culture of an organization and take the management and leadership abilities that I did trying to hone in the academy into other environments.

The most sophisticated word I can think of to describe it as it's awesome. I went not understanding the first thing about the technology, but understanding the clinical use case of it pretty well because of my background in prevention, early detection in lung cancer screening particularly, which is our first product is lung cancer prescreen biomarker test. I’m lucky to work with serious scientists who are also educators like Victor Velculescu who spends a huge amount of time, especially early on, spent a huge amount of time just teaching me about the technology, about echoes of DNA fragmentation, changes that you see as a result of cancers, abnormal mitotic cycle. All words I knew, but none that I've seen put together in a cohesive way. So I'm really excited about it.

And I think it may be the case that circulating DNA analyses or other kinds of biomarker assays for early detection of cancer, it could be that these are really transformational discoveries. I want to be part of defining that field of keeping the rigor at the level it needs to be to think first and foremost about the tested subjects rather than sales of a test, and making sure that clinical studies and clinical use are carefully defined to ensure or make as likely as possible that the benefits exceed the risks for everyone who has a test like this.

That is difficult to do. The field is quite nascent. The reason we started in lung cancer, and the reason I was attracted to Delphi specifically, was that lung cancer has established clinical utility for screening itself. And the real problems we have with lung cancer screening relate to uptick, where at about 5% of eligibles being screened right now, even conservative calculations suggest we're losing 10,000+ people a year due to that shortfall. And my entire career has been focused on access to technologies, treatments, and other things like that, procedures at the level where we're bringing some of the health benefits that the technologies could provide. And so this is a different version of that same story.

Dr. Patrick Loehrer: If I can take you in the past a little bit, we had Deborah Schrag on a few months ago, and we were talking about Zaltrap and your role in that. It was really a rebellious moment, when you, I think, led the charge to challenge the price of this drug. Can you briefly tell us that story for our listeners? I think it's kind of interesting.

Dr. Peter Bach: Zaltrap. So I didn't lead the charge. I happen to be first author of the op-ed, but Len Saltz who ran Pharmacy and Therapeutics Committee is obviously a world-famous GI oncologist really was the motivating source of this. I got involved because he reached out to me and said, “There's this new drug, and I'm on the P&T committee. And we're going to reject it because it costs too much and it's no better than this less-expensive drug Avastin.”

He called me. We're friends. And I said, “Okay, you know, that's outrageous and exciting. How can I help?” And he said, “Well, I want to make sure we're right that it costs more than Avastin” We already had this system in place at that point. Since 2009, we've been posting cancer drug prices, which we calculated in certain ways that were robust and defensible and in the peer-reviewed literature and stuff. And so that got my interest very considerably. And then as he and I started to talk about it, I honestly don't remember which of us first proposed the idea that we not only reject it, but we announce it in some very flagrant way.

And I think for whatever reason, you know, we ended up saying, “Okay, let's just write an op-ed. Let's see if we can get an op-ed into a major outlet.” Then I'd written about this extensively. The basic argument is, there's so many layers of opportunity where pricing could be dealt with where it isn’t. And we were sort of the last frontier. So FDA could care about price. It doesn't. The Medicare could care about price. It doesn't. Although the new legislation that passed the Senate will change that if it passes the House and it's signed by the President, but back then that wasn't true.

And so we were like, look, we're the last man standing, if you will. We're experts in this. We can say definitively, we're comfortable with not having this drug because we have this other drug Avastin, which costs half as much. That means it costs half as much for patients, means it costs half as much for society. We're not going to use it.

And so we wrote an op-ed in The Times that got more coverage than we expected. Then a miracle happened. The maker of the drug, Sanofi, lowered its price to match Avastin. There was a little kerfuffle prior to that which all played out in the Cancer Letter where they initially said that our math was wrong. And then I think that was a mistake because then we showed that our math was right, at which point they had used up the one shot in their musket.

So yeah, so they lowered their price and a lot of good things happened as a result. Not the least, of which patients had access to Zaltrap, a perfectly good product for less money. But it was one of the events over the early last decade, that showed what a Potemkin village, this whole drug pricing thing is and has been all along, that these prices are not calculated based on the therapeutic value or the value to patients. And they're not carefully constructed, back calculated from the years of R&D from which they emerged or carefully titrated like the launch coordinates on a moon shuttle or something. They're made up simply based on what the market will bear. And that market has continually softened by rapidly rising prices. And the truth is the market isn't the patients paying for drugs, it's the doctors administering them. And because this was an infused drug, doctors make more profit on drugs that cost more.

So, what was terrific about Sanofi, essentially, overnight, although I think it was about a week, cutting its price by half, is it revealed the fact that the price in the first place was just a paper tiger. And they could just as easily charge half as much, just as easily cost twice as much. And that was terrific, because I think then, like I said, it was one of the events that began to drop the veil on how all of this pricing worked and how little it had to do with any of the claims the industry was making.

Dr. Dave Johnson: I mean, I saw that as a transformational moment. I think kudos to all of you - Len certainly and yourself, for bringing that to the public's attention. And you've actually even created a tool that I think you refer to it as your abacus. Could you tell us a little bit about that, perhaps?

Dr. Peter Bach: The Drug Abacus was a 2015 thought experiment. My team and I built it to essentially empirically counter or, if you will, test the pharmaceutical industry's narrative that their pricings were based on therapeutic value. And so the narrative up till then went like this: “Well, we price our drugs based on the value they deliver to patients.” That's what someone would say. And then I or somebody else would say, “Great. How do you define value?” “Oh, you know, it's like love. You can't really define it.” Which makes the supposition or assertion both untestable and de facto untrue.

But nevertheless, the exercise was about okay, fine, let me dimensionalize love or value along the maximum number of dimensions I can think of. And actually, we did an update where we added more dimensions after we heard objections to the first. We basically said, “Look, the only things this could be is if it lengthens life, has low toxicity, it's for a rare disease, it costs a lot to develop, it's a particularly novel compound.” We just gleaned from prior statements from the industry and different companies what these dimensions would be. And then we took, I can't remember off the top of my head, 50, 60 of the most recently approved cancer drugs. And we measured each of these things. And we normalized them and we put them into equations. What was I think a good idea at the time, and the Drug Abacus, is the name of the tool is we didn't assign any values to each of these dimensions. Instead, we built a calculator, essentially a slide rule, where you could go in and whatever your vision was for how you should value a drug, like really life expectancy gains matter, really scientific novelty matters, or orphan status matters, you could re-weight them, essentially change the coefficients in mathematical language to see like, what should the prices be if you really care about X and care less about Y or whatever.

And then the other thing we did is we summed the total spending on these drugs based on real sales figures, and then allowed the total spending to change based on the modulated prices emerging from this calculator and carried with it two lessons. One was, there was no way to set these dials, and they were pretty close to infinitely flexible, to achieve current prices. There was no solution equation. And other people had shown that as well using different methods.

But the other is that you had to trade things off or you spent more money. And that is a key issue that I think has been recapitulated a lot over the last several years. And it's recapitulated again in the bill the Senate just signed, which was we want to lower out-of-pocket costs and total spending amongst Part D Medicare beneficiaries, we are capping it at $2,000, for instance. And if we're going to do that, the government's going to spend more money, where are we going to get the savings? It will be through lower drug prices on older drugs.

And so there's that classic trade off. The drug advocates illustrated both of those things. Then, like I said, we updated it later and added some other, I think, two more parameters. Results were the same, but if you will, it's a sort of classic empiric debunking tool with a lot of computer programming behind it. A lot of the work I'm proud of may not seem very ‘researchy’, but it derives the ability that my team developed to operationalize and empirically test claims about pharmaceutical innovation. And by doing that, you can essentially debunk if your instincts are right, or reaffirm or whatever.

Dr. Dave Johnson: I find it a fascinating tool. And, again, kudos to you and your team for doing so. I think it helps bring to light the challenges of pricing a drug appropriately in the market.

You've mentioned a couple of times now, the Inflation Reduction Act. What are your thoughts about that? Are you happy that this is happening? Do you think it's finally time that Medicare has the opportunity to negotiate drug prices, although hidden beneath that statement is for some drugs, I think is what the real bill says, but what are your thoughts about that?

Dr. Peter Bach: This is considerably more than half a loaf. You'd really have to never walk out and come out of the Ivory Tower to say it's not exactly what I would have done. And so I'm dissatisfied. The burden in just the Part D part, just if you look at the burden that beneficiaries in Medicare face on Part D drugs, it is alarming and unconscionable. The majority of people in Medicare, all of us, come from lives where we cannot relate to this, the median income in Medicare is $28,000 a year. And most people, they are not sitting on a few million dollars in savings. There's a sort of drip, drip declining asset value for them. And one of the five purposes of insurance is to catch people when something catastrophic happens to them and D doesn't do that.

People are wiped out. A third of people stop taking medicines and, recapitulating this theme of my work over, not just me, of course, many people work in this area. But from earlier, I think failure to develop new therapies is a scientific reality. Failure to figure out a way to make sure people can get them and benefit from them, that shows that we don't care as a society. And then I was really glad our team has done, back when I was at MSK, a ton of work clarifying that the real problems with drug spending were due to a fractured implementation of an established policy approach to how we pay for drugs, which is that they get time-limited monopolies during which the market sets their prices. And then those monopolies are over. And then society gets the benefit afterwards.

So there is this very clear transfer of who's getting the benefit, from the drug company to the people. And the people are taking the risk in that, in the sense that those new products are routinely eclipsed in terms of technological breakthroughs before it's time for us to get them super cheap. So we're bearing all that risk and that system has been broken. Like in the biologics, we still see biosimilars just chipping away and in some cases many biologics that should face competition don't.

And this institutional, and this is what we've been pushing for, for years, is that if you're going to talk about negotiation or changing prices or price controlling in certain markets, you need to focus on older drugs. Let the companies have their return and then focus on the older drugs and institutionalize that transfer the benefits to people and away from the companies.

And so that absolutely thrilled me. That is a recent change. The original propositions were all about launch prices, which I think is much harder to do. And if you want to do value-based pricing and assessment, with the current FDA standards about drug approvals, not necessarily even focusing on clinical endpoints, you are guessing, and so are the companies. But I think it's a much harder math problem and much more prone to error to do launch prices. This is like axiomatic. Since the ‘80s, this is the idea, the time-limited monopoly. So I'm thrilled about that. That's really appropriate. And then the whole insulin thing is just a mess. And I'm sure you've or maybe you haven't, but Mark Trusheim at MIT and I have been calling for profit regulation of insulin for a very long time. It's not full-on socialism, but this could be done at production plus, and it should have been done that way a long time ago.

Dr. Dave Johnson: Yeah, no doubt.

This concludes Part 1 of our interview with health policy expert and author Dr. Peter Bach. In the second part of this episode, Dr. Bach will share a deeply personal story of what it was like to care for his beloved wife, Ruth, who unfortunately succumbed to metastatic breast cancer at the much-too-young age of 46. We will also explore the challenging topic of delivering difficult news to patients.

For now, thank you for all of our listeners for tuning in to Oncology, Etc. This is an ASCO educational podcast where we will talk about just about anything and everything. If you have an idea for a topic or a guest you'd like us to interview, please email us at education@asco.org.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

View Details

"There are different types of advanced practice providers that you may meet in an oncology practice - PAs, APRNs, NPs, but what’s the difference between them? In the second episode of ASCO Education’s podcast series on Advanced Practice Providers (APPs), co-hosts Todd Pickard (MD Anderson Cancer Center) and Dr. Stephanie Williams (Northwestern University Feinberg School of Medicine), along with guest speakers, Leslie Hinds (Centura Health), Martin Clarke (Arizona Oncology), and Kathleen Sacharian (Main Line Health), break down the differences and similarities between physician assistants and advanced practice registered nurses, share what their days might entail in each of these roles in an oncology practice, as well as address some common misconceptions surrounding these types of APPs. Duration 35:52.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org."

TRANSCRIPT

Dr. Stephanie Williams: Hello and welcome to ASCO Education's Podcast Series Advanced Practice Providers, APP 101: Physician Assistants and Advanced Practice Registered Nurses in Oncology. I am your co-host, Dr. Stephanie Williams, with physician assistant, Todd Pickard.

Today, we are joined by Leslie Hinds and Kathleen Sacharian, both of whom are nurse practitioners, along with physician assistant, Marty Clarke. All three of today's guests are a part of the APP Task Force. Thank you all for being on our panel today. Leslie, Kathleen, and Marty, could you please tell our audience a little bit about yourselves, starting with you, Leslie?

Leslie Hinds: Good morning! I am a nurse practitioner in the Denver, Colorado area and I am in community practice.

Kathleen Sacharian: Good morning, everybody! I'm Kathleen Sacharian, and I'm an oncology nurse practitioner. I've had over 20 years of experience in both academics setting and community practices in the Philadelphia area.

Marty Clarke: Hello, everyone! I'm Marty Clarke. I'm in Tucson, Arizona. I've got closer to 30 years of practice in general medical oncology, as well as a fairly lengthy stint in cancer psychiatry. I'm also a clinical psychologist.

Dr. Stephanie Williams: Thank you all. Today's episode will be a deeper dive into the specifics of what physician assistants and advanced practice registered nurses or nurse practitioners do on a day-to-day basis in an oncology practice, as well as addressing some common misconceptions of what PAs, APRNs, NPs do in practice.

So, jumping right in, I'd like to ask you all to shed some light on the general differences between a physician assistant and an advanced practice registered nurse or nurse practitioner. Who would like to start?

Todd Pickard: I'll get the ball rolling. This is Todd. This is a great question. It's one that people ask a lot, you know, what is the difference? And honestly, in the clinical setting, there really is no difference.

When you see an advanced practice provider, whether they be an APRN or a PA, you're going to get the same kind of team-based care with quality and safety and that really focuses on the totality of the patient.

PAs and NPs arrive to their clinical work from different educational perspectives. But the work we do really is the same high-quality level of care. I'll defer to my colleagues to add some to that conversation.

Leslie Hinds: Yeah, I would agree with you, Todd, that in practice, NPs and PAs provide the same quality of care and the same type of care but our education and background is oftentimes different from a nursing role versus a medical role.

Kathleen Sacharian: I'll add that, you know, I think when we think about some of the main differences, really focusing, as Leslie said, like how are we prepared? How are we trained? A nurse practitioner is typically a registered nurse with a bachelor's degree and then goes back for a graduate degree in either a Master of Science in Nursing or a Doctorate in Nursing Practice. And typically, some of the main educational differences in a nurse practitioner role are that their focus in education is population-based, meaning it's based on a specific patient population or health condition. So, you might have an adult gerontology nurse practitioner or a pediatric nurse practitioner.

Marty Clarke: Kathleen, I have a daughter that happens to be a GYN oncology nurse practitioner. And so, her focus is a little different than mine but it's always fun when she reminds me how much smarter she is in certain areas.

Dr. Stephanie Williams: Just from my standpoint as a poor old physician here, are there differences from state to state between what you guys can do? That’s one question. Two, your histories are so different in terms of how you came to become PAs, how the field of PAs and how the field of nurse practitioners developed, which is, in my opinion, very fascinating. So, I wonder if there are any comments on any of those issues?

Todd Pickard: Yes, Stephanie. That's a great question. I was just thinking about how really, when people see differences between APRNs and PAs, it's generally because of state law or an institutional policy. And that's what's very unique about advanced practice providers is that their practice can vary wildly from state to state, unlike physicians, who basically have one standard national type of practice.

An APP in Texas looks very different than an APP in New York or Alaska or Hawaii or Mississippi. And so, you do have to be very cognizant of the fact that it is important to be aware of what each state says or what even individual institutions say.

Leslie Hinds: At my institution, physician assistants are not allowed to supervise infusion, which is a big part of medical oncology. So, unfortunately, in my practice, we have nurse practitioners only and have been unable to hire PAs because of that limitation.

Dr. Stephanie Williams: So, these institutional guidelines, are they based on state regulations or just based on current practices at those institutions?

Kathleen Sacharian: Well, I think it's really dependent on the institutional experience, you know, there might be a large academic center that has a very well-developed advanced practice provider program compared to maybe a smaller community practice that has one nurse practitioner or PA.

So, I think the experience with the individual institution or clinic, but overall, that really is dictated by the state licensure and regulations. So, that is the first thing that needs to be looked at when considering these roles and responsibilities of advanced practice providers.

Todd Pickard: Stephanie, you bring up a very good point, which is whenever an institution or an individual practice takes a position, it's always good to explore the 'why'. Is this customary? Is it a habit we've been in? Or is it based simply on a misunderstanding or even a preference?

Many times, when you go to explore these things, you'll find that it's either a misunderstanding or a preference. It's not because something is required that way. At my institution, for the longest time, we only hired nurse practitioners on the inpatient side, because somebody thought that PAs didn't learn how to take care of patients in the hospital. And we had to have a conversation. I said, “No, actually, when I was in PA school, I actually had to sleep in the hospital, and for 6 weeks on my inpatient medicine rotation, so that I could give care 24 hours a day.”

So, no, we are trained there. So, it was completely a misunderstanding. And so, I think that's why it's very important that you have advanced practice providers who are part of your leadership in your governance, so they can help you craft good practices, good policies, top of license practice so that you really maximize all the team members.

Marty Clarke: All these points are really poignant. The example of PAs not being able to oversee infusions, that probably stems out of an assumption that PAs, unlike oncology nurses that then become NPs, are more qualified somehow for infusion.

And it goes back, I think, to what we talked a little bit about the training, where PAs are trained in the medical model. There are assumptions that are made around that that sometimes are not correct, just as the nurses are trained under nursing theory. And there are assumptions that are made around that. In my practice, there's a belief that the nurses can't function in the hospital, which is, you know, kind of ironic to me. And I think it's an assumption based on their training and an incorrect assumption.

So, again, Todd, you're right. You need leadership and an open mind to this and also, you've got to pay close attention to what the individual, you know, state laws are, but they're more similar than they are different, I would say.

Dr. Stephanie Williams: Just as a for instance, guys, I practiced for several years in the state of Michigan, the law has changed now, thankfully, but I had a combination of nurse practitioners and physician assistants, and my nurse practitioner, by law, could not order a consult for physical therapy, only my physician assistants can.

So, I think it gets frustrating for physicians, because then how do I know what a PA can do and what an NP can do if, you know, I go to Illinois now and I practice under a different set of state laws.

When I started in my career over 30 years ago, PAs were quote, “surgical”, they held retractors, they stitched people up, they did our urology consults for instance and put Foleys in. And nurse practitioners were more bedside, taking care of patients. I think some of that has changed.

But I don't know if you guys have any comments, how does a physician who's in practice in the rural community, and a more cosmopolitan community and academia, how do these things differ in your daily day-to-day routines?

Todd Pickard: This is a great transition, you know, Stephanie, that's a very salient point, is really to take a little bit of a deeper dive into thinking about how PAs and APRNs are trained. So, Marty, we’ll get you to say a little more about PAs, and then Kathleen and Leslie a little bit more about the APRNs.

But generally speaking, PAs attend schools which are generally housed in medical schools. And so, we share the same faculty, we rotate with the medical students, sometimes we take the same courses as the medical students, and we're really trained in that medical model, which is basically a little bit of everything, the same thing as medical students.

And one thing that we have included in our training, which is different than nurse practitioners and APRNs, generally speaking, is we have surgical training, not to say that APRNs cannot be in the OR, they do some extra training as an RN first assist certification for that type of role. But for PAs, that's just simply built into our training.

And the reason that PAs are trained in this way is, you know, because we have our background in the military. In the military, we were part of the medical units. We were field medics. And then, after folks started coming back from their military service, they realized there really wasn't any civilian role for those highly trained folks.

So, some physicians at Duke University created the PA profession. And of course, they built it to work alongside physicians. So, they taught them the only way that they know how, which is the medical model, which is how they were trained, and it's interesting that PAs and nurse practitioners were born in the same year, 1965, but just in two different parts of the country. So, Leslie, Kathleen, tell us a little bit more about the training that you receive, and why does the population model matter?

Kathleen Sacharian: So, I'd say when you think about the nurse practitioner, you know, typically, and not always, but a lot of times, they'll have some registered nursing experience. And then, they decide to go back for an Advanced Practice degree.

They choose a specialty based on interests, so that might be Adult-Gerontology or a Pediatric focus. So, we're really focused and trained clinicals, you know, all of that training is really built around that population focus.

So, once you graduate, national certification, and licensure is then required. It really then takes on what happens next of roles and responsibilities, I think really goes into the training, the onboarding, and training of the provider, is a lot of times, you know, built into that on-the-job training.

There might be fellowships that the nurse practitioner is a part of. For example, there’s a lot of new oncology fellowships that are coming out for advanced practice providers, which really gives them a good additional focused training to be able to be ready to provide that advanced practice care for oncology patients. Leslie, I don't know if you have anything to add to that.

Leslie Hinds: Yeah, I agree with the background and the education. you know, there are a lot of different specialties that you can graduate with an Advanced Practice Nursing degree, and I completely agree that most of the education for practice is learned after graduation. And then, you learn the specialty that you're interested in, or family practice, whatever you choose to do, but the education that you receive after graduation is mainly affecting your practice.

Marty Clarke: Leslie, I really agree with what you were saying about, regardless of your training model, what really happens in my experience working with PAs and NPs is that you develop a way of practicing that is consistent and congruent with how the team that you're on practices, whether it's just you and a physician, that's a team, and you develop a pattern of practice that is complementary. And I think that both PAs and NPs, at least in my experience, are able to make those adjustments on the fly, really.

Having said that, there are times that I'll have questions about a patient I'm seeing. And in my practice, I can go to a PA or to an NP, and there are times that I'll go to one of the NPs because they have a just a little different flavor, a little different take on something that I think might help me sort things out a little better. Other times, I'll choose to go to a PA because I know that their training is going to lend itself to kind of my way of thinking.

The medical model piece is to me an advantage and a disadvantage, and here's how I mean that. One of the things I tell the oncologists I work with, when they're looking for us to see a certain number of patients in a certain period of time, they're operating out of their experience. And because of their training, they can see to the bottom of the bucket faster than I can, and faster than any of my peers can be it PAs or NPs.

So, I'm constantly reminding the oncologist one of the things that we all bring to the table as APPs is a little more time with the patient. But the medical model sort of is focused on the biological, the pathological aspects of what's going on with the patient.

The personhood often becomes after that. And that's sometimes why I'll go to an NP because a lot of times that personhood is closer to the surface with them. So, my personal experience with the medical model, when I applied to get into the clinical psychology program, I was told, “We can't let you in this program because you've been taught in a medical model, you think in a medical model, and you'll never unlearn that enough to be a good psychologist.”

And I had to beg and plead with them for an opportunity to prove them wrong. And fortunately, I guess I said something that allowed me to do that, but they were right, it was a very, very difficult task and challenge.

To me, the medical model is, you kind of, is a little bit like being a Marine, you sort of go for the meat pretty quickly, and there's sometimes some finesse and some touch that's lost in that. And other times, it's really great. You know, it's exactly what's needed.

Todd Pickard: Marty, you have said so many profound things in such a small amount of time that I'd like us to take a little bit of time to unpack that. And so, one of the things that you really clicked on, and Leslie and Kathleen also did this, was the concept of, we all come with our educational backgrounds with a certain foundation of knowledge, and we build upon that as advanced practice providers in our team-based care and our partnerships with our physician colleagues.

Any physician can trust that a new grad APP is going to know how to do a history, a physical, manage basic issues around a patient's symptomatology, and that they're not going to let patients get harmed. We know that much.

But the things that we have to learn are the specifics to the practice that we're in, whether it be lymphoma, leukemia, stem cell transplant, breast medical oncology, GI medical oncology, whatever it is.

And so, that's critically important that when you have an APP that comes to the table with that foundation, and then build from there, unless they've worked in that same specialty before.

One other thing that Marty said that was really important, I think, is that we all, whether we're APPs or physicians, really have to recognize that we treat whole human beings, not just the cancer cells in their body.

And so, I think that's a mindset that has changed significantly over time. I mean, I went to my medical training in 1990, and, you know, as an educator and as somebody who works with trainees now, I know that that approach is different because people think about the social networks, the support that folks have around that, their own mental health, can they comply with medication orders? Can they get to their appointments? Do they have resources? So, we're really thinking outside of that box.

And I think another thing that you said, Marty, that is so interesting to me is why do people focus on so many misconceptions in medicine? ‘Well, you can’t X because you're a Z.’ That makes no sense to me. And for some reason, we spend a lot of time, I'll just say what I think it is, with these turf battles, 'don't play in my sandbox, go be in your sandbox'.

And so, I think that's the thing that APPs are really committed to. We want to play in all the sand boxes because our focus is on the patient, not whose turf we're on. So, Leslie, Kathleen, Marty, what do you think about that kind of team-based approach and why does that matter to advance practice? What does it mean? Because I feel like it's in all of our DNA because that's how I grew up as an APP. What are your comments on that?

Kathleen Sacharian: I completely agree with both of you. I think it’s just the importance of how we work together. Our patients are at the center of all of our goals, right? Our outcomes are to improve patient care and provide them the quality of care that they deserve. And that takes a village, that takes the entire team from the oncology nurse to the PA, to the physician, to the nurse practitioner, you know, it really takes all of us to be able to provide that care that they need. And that's, you know, knowing when to say I need help, right? Who to ask that question to, using your resources.

I also think like not making any assumptions. Don't assume that because a nurse practitioner has been an oncology nurse for 20 years that she's ready to go, and to be able to provide that advanced practice care. She's going to need that support and training. So, I think just not making any assumptions and just really being open-minded and working as a team is just critically important to providing that patient care.

Leslie Hinds: Yeah, I agree with that. And I do think going more on the assumption of a nurse practitioner coming into practice: if they have oncology experience as a nurse, and they've been working as a nurse for a long time, there can be challenges with the change of the mindset between the roles between a nurse and nurse practitioner.

And I think that that is underestimated by a lot of physicians or other practices and just assuming that this nurse has a lot of experience as a nurse, so they're going to transition to this role easily. And in my experience, that is not the case, and oftentimes, the nurse practitioners that I've trained that are coming in with a lot of nursing experience are much more difficult to train to be a nurse practitioners with that mindset of an advanced practice provider.

Kathleen Sacharian: I don't want to negate that experience. I think that oncology nurse experience is invaluable for how they treat the patient, how they take care of them, how they assess the patient. And just bringing that experience to practice is incredibly invaluable. But just recognizing that difference between an advanced practice role and a registered nurse role is just important to consider.

Marty Clarke: Yeah, and I'll add to that for what it's worth, all of us work in a very demanding environment and the brain is designed to be as conservative as possible in its energy consumption. So, it takes shortcuts, cognitive shortcuts, it makes up answers to questions, sometimes whether the answers are correct or not are not important.

So, that's how assumptions I think get played out. And Leslie brought up a good sort of assumption that sometimes physicians will make about a nurse practitioner that, 'Well, they were an oncology nurse so I'm going to have them just kind of do more of that sort of thing and a little less of what I would be doing', going back to the sandbox sort of analogy.

And it's really just almost a reflex. But if we can be aware of that and train our physician partners that that may be a tendency they have to think of us in a constricted way because that's cognitively easier. It's what keeps us often from practicing to the full extent of our capability and our license.

Dr. Stephanie Williams: Todd, can I just say one thing from a physician standpoint? I mean, this is great and I agree with everything. You know, there are still physicians who think that an APP is an extension of me, and you do what I tell you to do so that you can make my life easier. That's not where the focus should be. The focus should be on that patient sitting there in front of you, and how can we make their life easier. How can we all work together in the sandbox.

Marty, our psychologist, was going through our brains and how they function. How can we work together to better the care of that patient, and the care of ourselves? We have to help prevent ourselves from burning out. How do we change that focus? There are still many physicians, unfortunately, out there who want you just to be there for them, instead of being there for the patient. How do we change that?

Todd Pickard: Stephanie, that is a profound question. I think that it is one that takes a lot of thought individually because what I think is at heart here, you know, the heart of the matter is that folks are so focused on surviving day to day. They think of the tools that they can use that make their life easier.

I think what we're all saying is that we need to flip that around and think of who are the partners on my team that help me care for the patient, and we do our work together. So, if you approach it from the mindset of 'this is all my work and what are the resources that will help me complete my work', then you don't think of partnerships in teams. You think of people who do the work the way you want the work to be done and it's all about you.

When you flip that and you really embrace the power of the team, what it is a group of folks who are all sharing the burden, and who will make sure that the patient, instead of the work, the patient is cared for, and all the services and all the things that the patient needs are done by the right people.

And so, it's not about my work. It's about our work. And so, I think there are highly-functioning teams out there and they've really embraced that concept. But Stephanie, you're absolutely right. There is a model that there is 'physician work', and everybody around the physician is there to help the physician.

But I do think that that is changing because we really are looking at how folks work in teams. So, I'd be interested to hear how, you know, Kathleen and Leslie, and Marty, think about this whole 'my work' versus 'our work' and what are they experiencing.

Kathleen Sacharian: Well, I would add to that I do agree, again with that patient-focused and patient-centered care being everybody's outcome and goal. But what does that look like in day-to-day and when talking about burnout, you know, you think if you're just being delegated all of the really difficult tasks or, you know, the things that people don't want to do, that certainly can lead to burnout.

I think we need to maximize people's interests, people's focus, and specialty. Maybe it's a procedural. You know, maybe the PA or nurse practitioner really enjoys doing procedures or doing consults.

There are so many specific examples of those roles and responsibilities of how they can, you know, take some of the burdens of day-to-day patient care and maximize them based on patient interests, specialty, and again, with that overall outcome of just improving the care and being efficient, and providing that quality of care.

But really like identifying, talking, as a team working through it, have quarterly meetings about what's working in your practice, what's not working, and how we can improve this, using your resources, too. I think there are a lot of great resources out there that can help to educate the teams about best practices in a team-based model.

Leslie Hinds: Yeah, I agree, team-based care is definitely best for the patient and whole patient care, and there are definitely still barriers out there that we deal with on a day-to-day basis that are coming in between team-based care.

And I really believe that is to the detriment of the patients. You know, I think there should be more education for physicians on how to work together as a team, instead of working together just as, 'you are my servants so you're going to do what I want you to do', and not allowing the team around them to practice to the top of their license, and ability, and interest.

Marty Clarke: Yeah, I think this real a, really important subject that needs a great deal of exploration and education across the board. My way of thinking about it is everybody has a little bit of magic and sometimes we're not able to figure out what our magic is because we're forced or pigeonholed into a certain role, but allowing every participant on the team to sort of find out what they learn, figure out, and sort out, what their magic is and to be able to bring that to the table.

You know like what Kathleen was saying, that's what keeps people engaged and what keeps them motivated. When I grew up, the term was 'scutwork' you know. I was taught 'a pound of scut for a pound of teaching', but we all have to do work we don't particularly enjoy, and that has to be rewarded by allowing us to do something we really do enjoy.

And when we do that, we bring some energy to the patient and to the team. That's when synergy starts happening. But that's not, going back to what we said earlier, that's not how the medical model, it doesn't start from that position. That's what we have to, over time needs to be I think re-engineered a little bit.

Dr. Stephanie Williams: Leslie, can you give us an idea of what your day is like?

Leslie Hinds: Sure! So, for the most part, I'm in the clinic, but we have patients who are admitted then oftentimes they do go to the hospital to see them and then run back to the clinic to see my scheduled patients for office visits.

A lot of my time is spent answering questions from the infusion nurses, from the MAs, and from patient calls coming in. We do procedures, so, bone marrow biopsies, Ommaya infusions if needed, and another good portion of my time is spent analyzing results as they come in.

The sheer volume of the inbox and the results of it coming in is quite overwhelming sometimes. But, you know, taking the time to analyze results that we're hoping not to see, like a positive scan, and then developing an evidence-based plan for what to do next to help manage these patients appropriately - that's time-consuming.

I do a lot of patient education. And also, manage a lot of emergencies that happen during the infusion. So, we basically manage the infusion center and see patients and answer questions. So, that's mostly my day.

Dr. Stephanie Williams: Thank you! Kathleen, how about you? What's your day like?

Kathleen Sacharian: Well, it depends. You know, I've been in outpatient, it looks very different from inpatient, and the outpatient experience really looks very similar to Leslie's treatment visits, seeing follow-up patients, they might be a longer-term follow-up, providing symptom management, working with our triage nurses to, you know, escalate significant problems, or treating them at home, providing that emergency and infusion-related care. But I think there's also to think about part of my role was developing a patient-specific clinic for survivorship patients.

So, my role when I was a survivorship nurse practitioner was very different. I was providing program development. I was seeing patients in survivorship in long-term follow-up providing survivorship care plans.

And I really think about that when thinking about the roles and responsibilities of an APP, just how vast that really can be. You know, there could be a genetics specialty that the APP chooses where they're providing these APP-led clinics to take care of these special populations of patients.

So, just to kind of bring another idea of what the day-to-day could look like, it could be running a survivorship clinic or genetics clinic or palliative care. You know, there are so many, so many things that the APP really can provide in that day-to-day practice. And it's really from diagnosis to survivorship to end-of-life or palliative care. So, we see the patient across that continuum.

Dr. Stephanie Williams: Thank you. And Marty, how about you?

Marty Clarke: Well, I have for the last several years been working in the office seeing patients, and what I would explain to patients is the oncologist's job really is to decide what your treatment plan is going to be. My job is to get you through that treatment plan successfully and with the greatest amount of comfort.

And so, I would see patients, you know, sort of on, sometimes weekly or every other week or every few weeks basis, assess them for where they are, whether, you know, review their labs, make sure that they're fit to continue with treatment, order and evaluate their restaging imaging studies so that we have a good sense of whether or not what we're doing is working as well as we want it to. If it's not, the patient goes back and sees the oncologist for adjustments to the treatment plan.

And that's really sort of the just what my office day was like. I did, still do bone marrow biopsies and punch biopsies pretty regularly. The last couple of months, I've been out of the office and working in the hospital sort of as the hospitalist for the group.

So, I'm doing consults in the hospital and follow-up while folks are in the hospital. At the time of discharge, I get them, if they're going to have follow- up within our group, then make sure that all that gets set up so that they're not lost in follow-up.

I just see my role as being there to help the patient negotiate this very difficult period of their life, to help the physicians that I work with, to be able to use their time most effectively. And to be able to do the things that only they can do. There are some things that I do better than them and that's what I enjoy doing.

But it always just goes back to where we started with this earlier. I show up to work every day just trying to help my patients have a little better life. I suspect I'm not unique in that regard.

Dr. Stephanie Williams: Thank you! Todd, is there anything else that you would like to add? I know you have more of an administrative lean right now.

Todd Pickard: Yeah, absolutely. When I was in full-time clinical practice, a day in my life was really focused on the patient care and how the team could get through the day because normally our schedule in a busy urology oncology practice, we'd have 70 or 80 patients per team that needed to be seen whether they needed a prostate biopsy or a cystoscopy, or they were a pre-op, or post-op, or a new patient or a consult.

And so, really, our focus was how we would get through the day, and we would all communicate with each other and support each other. But really, we were focused on each patient getting what they needed and we all were there to serve the patient.

And there was a lot of good collaboration. You know, there are times the physician would say, “Hey, I don't know how to get this thing done for this patient. How do we navigate the system?” Or times I'd say, “Hey, you know, this patient is here for surveillance and I've got some concerns about either their labs or this, and this is what I'm thinking. What do you think?”

So, it was really that collaboration. I think that's where the strength of APPs and physicians working together is. As an administrator, I spend my time thinking about how policy, and top of license practice and how we credential and make sure that people have good quality care, and I collaborate and partner with all of my other fellow physicians, administrative leaders, and administrative folks.

Thank you, Dr. Williams, Leslie, Kathleen, and Marty for sharing your insights today and giving the listeners a glimpse and a better understanding of a typical day in the life and how important it is to understand the differences between APRNs and PAs. They are all an integral part of your oncology practice.

Stay tuned for our next episode, and until next time, take care.

Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

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View Details

Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host this live ASCO podcast with award-winning documentary producer/director Bill Brummel. After undergoing a laryngectomy in 2016, Mr. Brummel produced and directed a documentary film titled “Can You Hear My Voice?” that chronicles the one-of-a-kind Shout at Cancer choir, whose members have all had their voice boxes removed, as they prepare for the most ambitious concert. This podcast features audio clips from the film. Mr. Brummel, who is joined by his surgeon, Dr. Uttam Sinha, of Keck Medicine of USC, reflects on his own cancer experience and the psychosocial impact of losing one’s natural voice.

For more information about the film or hosting a screening, visit www.canyouhearmyvoice.com or email info@bbprods.com.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Dave Johnson: So we're back here with another episode of our world-famous Oncology, Etc. podcast with two very distinguished guests, Pat.

Dr. Pat Loehrer: Well, we're thrilled to be here to record this episode in front of an audience. Usually it's just Dave and I, and supposed to be a live audience. Although after three-and-a-half days of ASCO, I'm not sure if anybody's still alive. We have two very distinguished guests today. Mr. Bill Brummel is the award-winning documentary producer and director. He and his films have been recognized with the Peabody Award, two International Documentary Association Awards, five national Emmy nominations, and have been named for the Oscar shortlist. Many of Dr. Brummel’s films have focused on civil rights and human rights issues.

After having his voice box removed in 2016 due to complications from radiation therapy, which he received for his head and neck cancer, Bill produced and directed Can You Hear My Voice? This film, which has not yet been publicly released, was shown on Saturday afternoon here, chronicles London's Shout at Cancer Choir, whose singers are living without voice boxes. It's amazing. The ASCO Annual Meeting attendees saw this on Saturday, and today what we're going to do is hear and see some of the clips from the movie and hear from the director himself.

Dr. Dave Johnson: We're also joined by Bill's physician Dr. Uttam Sinha who encouraged Bill to create this documentary about the psychosocial aspects of living without a voice box. Dr. Sinha is an Associate Professor of Otolaryngology at the University of Southern California where he tells us he spent the bulk of his life. He's also the Watt Family Endowed Chair for Head and Neck Cancer at his institution. Dr. Sinha’s holistic medical approach was really truly critical, Bill tells us, to his both physical and emotional recovery following laryngectomy. So Bill, Dr.Uttam, welcome to Oncology, Etc.

Mr. Bill Brummel: Thank you very much. But one thing your audience should know and you should know is that after having a laryngectomy, speaking with a voice prosthesis, we lose the ability to laugh out loud. So, Pat and Dave, if you happen to tell a joke or say anything funny, know that I'm laughing inside.

Dr. Pat Loehrer: I think Dave and I think that most of the people that listen to our podcasts probably have had laryngectomies because we hear no laughter at all from anything we say. So, Bill, we’re really here today to talk about your documentary. And we’re going to show a few clips. But before we show the first clip, can you set this up for us?

Mr. Bill Brummel: This clip sets up the choir and the premise of the film. We follow the choir as they prepare for the most ambitious concert they have ever attempted. So it’s really just setting up the premise.

Dr. Pat Loehrer: Now this is extraordinary. So if you could run the first clip for us. Appreciate it.

[Clip starts playing]

Speaker 1: I'll remember quite well, when I first suggested let's form a choir. They responded with laughter and surprise and disbelief.

Speaker 2: It just seemed ridiculous that you would expect a group of people with no voice boxes to stand up and sing in a choir. It didn't seem realistic. But Thomas had confidence that we could do some things. We went along with his mad scheme. And then one day was sort of now, what about a concert? What?

[Jazz playing]

Speaker 3: Well, the people in the choir are just normal people.

Speaker 4: I really admire the courage that it's kind of taken to come through all of their treatment.

Speaker 5: After all the stuff they'd gone through, they're able to turn that into something creative and artistic. That's really, really impressive.

Speaker 2: The concept is something new. It's almost a defiance, which is what people need, is to be defiant. Was that a F sharp I sang or what was it? You know, it doesn't matter.

Speaker 6: Most of them never read poetry before. Most of them never sang before. Most of them never were on stage before. And they were going to put on a show. And they're going to add this other two or three layers of emotional vulnerability.

Speaker 1: All right. Everyone, just like we prepared. We know what we're doing and we're going to enjoy ourselves. Yeah?

Speaker 6: We're doing a concert. People have paid money to come and see us. The adrenaline rush is incredible. I can't describe it really. I never thought I would do something like this.

[Applause]

[Clip ends]

Dr. Dave Johnson: Tell us a little bit about how this film came about. Obviously, you had a personal connection to it. But give us a little bit of background information, if you will.

Mr. Bill Brummel: Well, about nine months after my laryngectomy and after getting through some of the emotional and psychological problems that a lot of people who've had the surgery experience, and we'll go into that later on, I went to an appointment with Dr. Sinha, a regular scheduled appointment. And out of the blue, he suggested that I make a documentary about the psychosocial aspects of recovering from and living with a laryngectomy. Now my first thought was stick to medicine, doc. I'm the professional here. Just kidding. It was an excellent idea. But why on Earth did you suggest that?

Dr. Uttam Sinha: We never get to see the psychosocial aspect or the challenges or the suffering they go through, and most importantly, the head and neck cancer is not so well known in the society, unfortunately. So all my life, in my 25 years of practice, I always tried to promote head and neck cancer awareness in our society. One day I told my friends, 'I need to raise money for research for head and neck cancer.' So they asked me, 'What is head and neck cancer?' I said, 'This is head, this is neck – cancer of this area is called head and neck cancer.

So anyway, so that was one of the driving forces then to create awareness within the society and also how the head and neck cancer patient live after going through the treatment and surviving the cancer.

Mr. Bill Brummel: When Dr. Sinha suggested it, it was an excellent topic. But I knew I needed a story to illustrate it. So right after the appointment, I went home, fired up Google. And very quickly, I discovered the Shout at Cancer choir on a website. Shout at Cancer is a London-based nonprofit charity, that among other things, uses some breathing techniques and singing techniques to improve the vocal outcomes for laryngectomy. Now, I knew that if I could get all the pieces in line, that this would be a great way to produce the film that I wanted to produce, that of a group of people who’ve undergone a life-altering surgery, and all the hardships and drama that goes with that, but still leading a meaningful and productive lives in a very entertaining fashion.

Dr. Dave Johnson: There's some really extraordinary people in this film from the Shout at Cancer choir. How did you happen to select the specific individuals within that choir group?

Mr. Bill Brummel: Well, I took two production trips to the UK after we found funding and after I got the choir on board. I took two pre-production trips to the UK and went to every choir member's home individually and met with them and their spouses. Now, they all have compelling stories. But for reasons of time, I couldn't have personal profiles on all of them. But I eventually settled on five. And I knew even then, that only four would probably be included in the film. I say that they have compelling stories. I think I could have done a Netflix limited series 10 episodes, one on each choir member.

Dr. Dave Johnson: I think you should consider doing that.

Mr. Bill Brummel: That might be too late to do that. But they're really excellent and articulate and all have slightly different stories.

Dr. Pat Loehrer: You told their stories. And again, for those who haven't listened to the documentary, I really encourage you to do this when this comes out. But just I have a question. You've done so many different documentaries about so many important things over the years. Do you think you would have done this documentary had you not had a laryngectomy?

Mr. Bill Brummel: Definitely not. A laryngectomy was not even on my radar. I don't think I knew what it was before I was faced with having it. So no, I definitely wouldn't have done that.

Dr. Pat Loehrer: It really is a terrific service that you've done. You've helped so many people. Dr. Sinha, there may be a listener or two that listens to the podcast that is not a physician. Can you explain just in lay terms what a laryngectomy is and what it means and the process behind it?

Dr. Uttam Sinha: So, as you know, that larynx is an organ that produces sound. It doesn't produce speech. This a misconception within in our society that the patient undergoing laryngectomy they cannot talk. A laryngectomy patient, they talk well, but the patient when I remove a portion of the tongue for a partial glossectomy, then they have a hard time to speak because speech is produced within the oral cavity.

So a laryngectomy is basically, the removal of the voice box removing the trachea from the esophagus so that they can breathe well and also they don’t aspirate because that's a big challenge. Aspiration pneumonia, is a consequence to fibrosis induced by radiation.

So early on in our practice at Keck School of Medicine, 25 years ago, we started this program where we decided to do neuromuscular electrical stimulation swallowing therapy to reduce the fibrosis so that there'll be less chance of aspiration, and aspiration-related pneumonia. So the laryngectomy we perform, especially in Bill’s case, he's a cancer survivor, but he had a hard time breathing and talking and also mild aspiration. So that's why we had to do a laryngectomy where we remove the voice box, and that improved his overall quality of life.

Mr. Bill Brummel: I remember as my breathing difficulties increased, Dr. Sinha advised me that a laryngectomy was in my future. And like I said, I didn't even know what it was. But he advised me that my quality of life would improve in the long term. But I was in denial. So I stalled. I didn't have it when he first advised that I have it.

Dr. Pat Loehrer: Here at ASCO, we have 30,000 to 40,000 people there, many of them are cancer survivors, and I'm thinking about when we think about most cancer survivors, Dave is one of them, and we'll talk about that in a little bit, most of them fit in with the crowd. The cancer survivors with laryngectomies something that doesn't. This is something that not only have you survived it, but you have the wounds to show for this. Can you tell us a little bit about that and briefly the thought processes of 'Listen, someone's going to take out my voice box. I'm a director. I need to have this.' I'm sure you stalled making this decision. And what was the final tipping point for you to have this done?

Mr. Bill Brummel: Well, as my condition got worse and worse, it was really hard to speak. And it was really hard to breathe. At times, my wife could hear my labored breathing from the other rooms of the house. I couldn't even climb maybe three or four stairs without getting winded. And then I remember the date of March 10th of 2016. I went to another appointment with Dr. Sinha. And I don't think I got two sentences out before he interrupted me and said rather firmly and with a good sense of urgency, 'Bill, we have to do the surgery now.'

He was obviously concerned that I would have a breathing emergency at home or in the market, paramedics will be called in, they do an emergency trach on me. I knew that Dr. Sinha would do a much better job than a paramedic. But I remember sitting in that exam room with Dr. Sinha and my wife, and the Dr. Sinha was basically telling me I was risking my life if I didn't have the surgery. My wife was worried sick. And although I was frustrated, I couldn't come up with any more excuses. So I said, 'Yes, let's do the surgery.'

Dr. Sinha wanted to admit me right then and there, and not send me home, but the OR was booked on the next day. So Dr. Sinha, bless his heart, called an OR to come in to do the surgery on a Saturday. I was the only one in the recovery room or the pre-op room. And I remember that when we arrived at the hospital, I think we have a clip of our kids, my wife, and I, we were sitting in the admissions waiting room. And my wife got out her cell phone and asked if she could record my natural voice, although wheezy and weak, one last time. And this is the 35 seconds.

[Recording starts playing]

Frances Fitzgerald: Okay. What’s happening today?

Mr. Bill Brummel: It's 5:30 in the morning, March 12th, 2016. And today, I'm giving away my vocal cords. And walk out of here, hopefully within a few days, with voice prosthesis and a new voice. Although I won't be able to test the voice for several weeks, I'll have to be silent, which will please many people around me. So that is what is happening. Last time you'll hear this voice. So to all of you, I love you. Thank you for all your support and prayers. Here we go.

[Recording stopped]

Dr. Dave Johnson: So I'm sure that that probably brings back some very emotional memories to you, Bill, and as Pat asked, post-operatively, what did you think about your future? What was your psychological state at that time? And how did you feel physically?

Mr. Bill Brummel: Well, physical recovery from the surgery was hard. And I vacillate by saying it was hard and it's awful, but it was physical recovery. But worse yet, I was saddled with insecurity and fear and doubt. People who have had the surgery can often lose confidence. They can sometimes retreat from society and withdraw into a world where we don't have to be seen in public. But when we do that, lonesomeness and depression are sure to follow. There were times I found it easier to isolate myself rather than navigate. I didn't want to go out. I didn't want people to see me. And I got depressed. It was just natural. Losing your natural voice is really traumatic. From the time we learn to speak, much of how we perceive ourselves is wrapped up in the unique tone of our voices. It expresses laughter and happiness. And with that gone, many patients really struggle with anxiety, self-doubt, and doubting their self-identity.

Dr. Dave Johnson: So, Dr. Sinha, is that a common reaction amongst your patients post-surgery?

Dr. Uttam Sinha: Yes, it's fairly common. That's why I started 16 years ago with my colleagues a survivorship program to support the psychosocial aspect of these patients. Whenever we can, we mentor the newly diagnosed patient with the established patient. Bill has done many, many mentoring for those patients who underwent laryngectomy after his laryngectomy. And I'm so grateful that our patients are so supportive to each other for the whole organization. So yes, this is very common and that's why we always talk about not just the physical but psychosocial aspects of our health. And also in our practice, we always try to promote not only the health of the patient but also health of the caregivers and the family to improve health. I think it depends on all four dimensions of health, which is the WHO definition of health, the best state of physical, mental, spiritual wellbeing, and not a mere absence of a disease process.

Dr. Dave Johnson: You mentioned the family. We want to get back to that in a moment. I think we have a clip from Sara. She was one of the patients that was featured in his film, and there’s a wonderful clip. I want to get to that in just a moment. But I just have an important question to ask Dr. Sinha. Was Bill a good patient?

Mr. Bill Brummel: Was I a good patient?

Dr. Uttam Sinha: I have to think about that.

Dr. Dave Johnson: That’s what I thought. We'll watch this clip while you think about that.

[Video clip playing]

Sara Bowden-Evans: I have two vivid memories of those moments just before going down to theater and having the realization that when I came back out, I wasn't going to be the same person. I would never be me again because they would taken my personality which would mean my voice. And then when I came around, I couldn’t call for help. And that was so frightening, really scary.

That was pretty awful actually coming to terms with all of this. I lost all my confidence and didn't want to speak. You can sound very angry all the time, even when you're not. I didn't want anybody else to really see me or hear me and all the other things to contend with as well, not being able to swallow properly and losing all my taste with radiotherapy, suddenly gone. I think the loss of laughter is one of the most difficult things for me. So it's just one thing after another after another and it just made me angry all the time.

Speaker 7: Emotional changes were quite dramatic. She was very, very moody at times. She just felt that everybody was staring at her. And it just changed her personality.

Speaker 8: We know from evidence that people who've had a laryngectomy can be much more likely to experience anxiety, depression, social withdrawal that can have a really important impact on relationships.

Speaker 7: The emotional side is the hardest part of caregiving. That's part of a relationship. You take the bad times with the good times.

Sara Bowden-Evans: I know that I wasn't a very good patient because I know that there were times when I was really horrible to him because I was dealing with my situation, and I took it out on him. But he’s still here. He stayed with me regardless.

[Video clip stopped]

Dr. Pat Loehrer: As you watch this film, you realize what a remarkable human being Sara is. She's a writer, she's a poet, and even the title of your documentary comes from her.

Mr. Bill Brummel: I stole it from her.

Dr. Pat Loehrer: Yeah, it's extraordinary.

Mr. Bill Brummel: It's one of the poems she wrote and we use in the film.

Dr. Pat Loehrer: The question I'd asked Dr. Sinha, if you don't mind just following up on this, when a woman is diagnosed with breast cancer, as my wife was, there's this wonderful support community, and they even have a color of their own. And the women get together and they have runs and they do all the stuff. Similarly for several other cancers. I think with head and neck cancer, the inclination, I think, as Bill mentioned earlier, is to be isolated and almost withdraw yourself. This was a unique group of individuals that got together for this project. We’ll hear about it more. But how common is it for laryngectomy patients to actually bind together? Or do they typically fight this battle alone?

Dr. Uttam Sinha: So they feel very isolated, no question, and depressed. That's why it's very important to have that kind of support system. Head and neck cancer is very unique. Most other cancers, squamous cell carcinoma, the same cancer when it happens in the lung, and you remove half of the lung, nobody would know and person's quality of life would not be compromised.

On the other hand, if same squamous cell carcinoma happens in the head and neck area, it compromises quality of life because all the function that makes us human beings - speech, swallowing, hearing, balance, smell, taste, all those things happen in this area. So when this area is damaged, whether by cancer itself or treatment related, that causes tremendous depression as their functional status goes down, and also they get isolated because they cannot go to the society freely, like to go to a restaurant and feeding himself with a G-tube with the rest of their friends or family are eating by their mouth. So that's quite depressing. In fact, I have patients, couple of patients who committed suicide because they were G-tube dependent. So head and neck cancer in that regard is very unique compared to other cancers.

Mr. Bill Brummel: I would say, to just add one point in regards to Sara and other women who have a laryngectomy, obviously, we don't have a lot of breakage in our voice. Our voices are very low. And it's really the same for women as it is for men. But men’s typical voices are lower and women's are not. So that is a factor in their emotional recovery. They really don't sound how they used to when speaking with a voice prothesis or through an electrolarynx. So it's really difficult for women.

Dr. Pat Loehrer: As humans, we think in the past and the future, we go back and forth, but you've had a life as a very successful film producer, director. And I think in many ways, this is probably one of the most unforgiving professions for any kind of disability, whether it's even putting on some weight or having an accident. But tell me a little bit about your life before laryngectomy and after laryngectomy. How has this changed your life as a professional? What has happened?

Mr. Bill Brummel: Well before even my laryngectomy, before cancer, I was originally diagnosed in 1997 with tonsil cancer. It was treated by neck dissection, not by Dr. Sinha, and seven weeks of radiation antidotes over wide fields. I had been in television production for about 10 years prior to that. And I was doing mostly silly reality shows, or music video shows, stuff that didn't have really any substance to it. I had started my own production company about a year before, but after my cancer diagnosis, I really thought to myself that if, God forbid, the cancer comes back and my life is cut short, do I want to spend my days, my effort in terms of my work life producing shows with no substance. And I said, 'No, I don't want to do that. I want to produce shows that feed the soul as much as the wallet.' Unfortunately, 20 years after that, my soul got a lot better than my wallet. But I wouldn't change it for the world. But having cancer, having that diagnosis definitely changed the trajectory of my career. I wanted to have a legacy and something that my children would be proud of.

Dr. Pat Loehrer: Just a follow-up question, I had a very good friend of mine who had a glioblastoma. After his diagnosis, he said he learned things about friends. He said, there were three kinds of friends. There were these friends who were the loyal friends who he'd always had, who really were with him. There were the people that he had thought were friends that just disappeared. And then there was a third group of people who we never ever dreamed would be friends, but they came out of nowhere to become new friends for him. So reflect a little bit on that. Does that resonate at all with you?

Mr. Bill Brummel: It definitely resonates. After my laryngectomy, and I went through this period of emotional difficulty, I was still one of the fortunate ones. I was blessed to have a supportive network that included family and friends, others, colleagues aided my recovery. And obviously, the medical team at Keck Medicine of USC, a lot of them became my friends and are still my friends. So they came out of the woodwork. My laryngectomy buddies are close friends. We have a supportive group that meets two times a month. They become real good friends. I can't imagine my life without them. But Dr. Sinha talked about his supportive care. It was really important to me. He's always preached about a hollistic response approach to health that includes traditional medicine, exercise, nutrition, physical therapy, mindfulness, and a bunch of other things, occupational therapy, speech therapy. To varying degrees, I embraced each of those modalities. But back to your original question, certainly, some friends fell off the map. I made new ones, the family and friends that I had, the relationships became really strong and a really important and critical part of my life.

Dr. Dave Johnson: That certainly resonates with my own experience as a cancer survivor as well. And you've mentioned your family more than a few times. I’m confident that they were a very important part of that support system. Could you speak to that a bit?

Mr. Bill Brummel: Well, they understood what I was going through. And if they didn't understand, they asked questions. They didn't ignore the elephant in the room. My wife, as a caregiver, I really don't know what I would have done without her after my laryngectomy. She was changing all my dressings, cleaning out the stoma, stuff that I assume if I was alone, I could have done it, but I didn't want to. I didn't want any part of it. So she got me the physical recovery. And then she started getting me the emotional recovery.

When I was feeling sorry for myself and sitting at home, she very politely kicked me out of the house. And she said, 'If you want a cup of coffee, you get it.' I would drive down to Starbucks. It took me three months to speak because the swelling wasn't going down. But she kicked me out of the house and said 'Go to Starbucks' And I would just write on my phone my order and show it to them. And that seems like a very easy thing to do, but it was a big step for me.

But it also started me thinking, well, maybe people are going to stare. But it seems like most people are understanding. And that's been my experience. I get stared at a lot all the time. And when I speak, people turn their heads. But most people are really understanding and want to help. In fact, they might even take the extra step for me that they wouldn't for some other person.

Dr. Uttam Sinha: We established a caregiver support group, Coffee with Caregivers, and Frances is the president.

Mr. Bill Brummel: Frances, my wife, yes, she facilitates the weekly meetings.

Dr. Dave Johnson: Well, there's so many rich aspects of your film. For those who have not seen it, you really do need to see this film. But there are a couple of areas that really resonated with me and reflected my experience, one of which we have a clip from this family. But I have a daughter, who was 10 at the time that I was diagnosed with lymphoma. And my wife and I did our best to shield her from the possibility that I might not survive that. In retrospect, I'm not sure we handled it quite the right way. But you have a clip from Pug and his wife, Kat, and their daughter, Lily. And I think it so reflects my own personal experience with my daughter and her reaction to me. So maybe you might want to just comment on that before we show the clip.

Mr. Bill Brummel: In the pre-interviews I did and selected a choir member for shooting, I developed an outline of what I thought the segment with life would look like. And you know when you do documentaries, you had to be able to change it at a moment's notice. So I had three interviews with Pug and Kat and came up with a sweet story that involves just them. When we recorded the interview, I was just blown away by Pug’s daughter, 12-year-old Lily, and completely changed the focus of Pug’s presence in the film to illustrate the impact that a cancer diagnosis and a laryngectomy has on families.

[Video Clip Playing]

Interviewer: When your dad got the laryngectomy, how did you deal with it?

Lily: I think I was probably more upset than dad seemed because I thought he was really going to die.

Pug Halliday: It's hard because we were always honest with Lily. But no matter how many times we said it was going to be all right, you know, you were worried, weren't you?

Kat: Basically after the operation, Pug had a lot of black, like Frankenstein stitching and drains and tubes. And Lily hadn't really seen that sort of thing before. Because she was younge,. I didn't want her to be frightened, so I waited and I spoke to Pug. 'When shall I bring her up?' And he said, 'Why don't you take a photo?'

Pug Halliday: The drain’s around, so that would be five, seven days after my operation.

Mr. Bill Brummel: And Lily, so that didn't scare you, the photo?

Lily: No, because he was—well, I think that yeah, it scared me a little bit, but in that photo, he’s like really happy, so-

Pug Halliday: By the time when we asked Lily, she said, 'You were smiling and had both thumbs up.' So, you were reassured a bit by that, weren’t you?

Lily: Yeah.

Mr. Bill Brummel: Lily, what did you do to try and make your dad feel better during his recovery?

Lily: I made tea for him.

Pug Halliday: Yeah, you came and you read me stories instead the other way around.

Lily: I read you stories, and I made him lots of things as well. Like, I don't know, like little books where he was really amazing.

To you, my favorite person in the world.

You are the best.

You're my inspiration.

I love your facial hair and your mustache presentation.

When you were ill, feeling depressed,

I knew you’d make it because you're the best.

You're kind.

You're brave.

You're funny, too.

I'm so happy I have you.

I can't believe that you're my dad.

It turns out that you’re not so bad.

[Giggles]

Pug Halliday: I keep these by my bed. And when she turns into a teenager and hates me, I shall read them regularly.

[Video clip stopped]

Dr. Dave Johnson: If that poem doesn't melt your heart, you have a heart of stone.

Dr. Pat Loehrer: What you can't appreciate on a podcast this incredible poem. It's just incredible.

Mr. Bill Brummel: He's a marvelous character. You know, you're mentioning your daughter, my daughter was eight years old. And my son was five-and-a-half in terms of when I had my original cancer diagnosis. In fact, we celebrated his sixth birthday in the hospital. On the last day of my radiation treatment I had to be hospitalized three times because I couldn't keep anything down. But my daughter commented, this was when she was graduated from high school, I think, that she really thought that I was going to die. And we said no such thing. In fact, like Pug, we tried to reassure her that my tonsil cancer diagnosis was not life-threatening. But in her mind, she remembers it as being a case that my dad might die.

Dr. Dave Johnson: Yeah, my daughter reacted the same way. And she kept a diary at the time. When we went back and read her diary, she actually wrote, 'My dad is going to die.' Yeah. The other clip that really stood out to me also involved a poem, and it comes from Sara. Sara is a real star in this. It's a poem to her husband, Nigel. It's a cancer survivor's reflection on how they dealt with their cancer and their spouse during the intensity of the treatment. I wonder maybe if you could make a few comments and maybe we could show that clip.

Mr. Bill Brummel: Well, definitely. The spouse or partner, the impact can be great. And in Sara’s case, in her words, she took out her frustrations on Nigel. And Nigel was a great caregiver and just dealt with it and never stopped loving her. Interesting thing about this poem, it was not a poem for the choir. It was after we finished shooting one of the rehearsals. I was talking to Sara, and she casually mentioned that, “Oh, I’ve written a poem to Nigel, but I'm scared to show it to him. Like he hasn't seen it or heard it.” And being a film producer, I said, “Wait. Don't read it to him. Don't show it to him.” We were scheduled to go out and shoot the segment with her at her home in a week or two. So I said, 'If you would read it on camera, I would love you forever.' I would have loved her forever anyway. So what you see, it's almost one take of her reading the poem to Nigel. And none of us in the room, of the crew and me, Nigel, had ever read the poem. And Nigel had never heard of the poem.

Dr. Dave Johnson: This is very real and in many ways, raw. I think it really illustrates that relationship. Again, not to talk about my own illness, but I felt the same way Sara did.

[Video clip playing]

Sara Bowden-Evans: So I need to read you something.

Nigel: You need to read me something?

Sara Bowden-Evans: Yeah.

Nigel: Go on then.

Sara Bowden-Evans: I wrote another poem that is for you.

Nigel: For me?

Sara Bowden-Evans: Yeah. I’m going to try to read it very easily now.

Nigel: When did you write this? Kept that very secret.

Sara Bowden-Evans: Because I don’t know how else to say what I needed to say.

Nigel: Okay.

Sara Bowden-Evans:

I'm sorry for the pain I caused.

I’m sorry for the hurt.

You were always in the firing line

To take the brunt of course

It’s not that I’m actively directing it to you.

It’s just you’re the one that’s always there.

And that’s the truth.

They say we always hurt the ones we love.

And there’s a reason.

And that's because the ones you love the most know all your feelings.

You’ve suffered with me.

All the pain, the sadness, and my darkest days.

You forgive whatever nastiness I throw.

But I don’t know how to ever repay all the things you’ve done,

apart from writing down in words.

Nigel: That was so beautiful. Thank you. That’s amazing.

[Video clip stopped]

Dr. Dave Johnson: I know that there are no words that can describe that.

Mr. Bill Brummel: Yes. Sara really is the emotional center of the film. And from a producer's standpoint, I don't mean to sound crass, but you always can get behind a person cry on camera.

Dr. Pat Loehrer: When I was watching the movie, though today, could you get behind me because I was crying.

Mr. Bill Brummel: Well, I usually, at any public screenings, and because of COVID, there hasn't been a lot of them, but I try and view the film from the back of the audience. And I'm scouring the audience to make sure they're laughing or crying at the appropriate places. And they usually are.

Dr. Dave Johnson: So Bill, what message would you like for oncologists to take away from your documentary?

Mr. Bill Brummel: Well, very simply. It's the message I would like oncologists to hear and implement, and a lot of them do, but it's to treat the patient and not just the disease. And that's it in a really simple form. The psychosocial consequences of any cancer diagnosis are challenging, and especially as Dr. Sinha said, in head and neck patients, where the treatments often leave a patient disfigured in a noticeable and visible way. Shame, anxiety, and depression are common enemies. Support the psychosocial health of your patients. And I'm convinced that if you do that, their physical condition will improve.

Dr. Pat Loehrer: Well said. We certainly can't let you out of here without showing a clip from the choir’s performance at the concert that you filmed. In fact, there were several, several songs. I think we're going to show one of them there. But can you tell us a little bit about the film distribution plans, the business of this, how will the public be able to see this film? What's happening on that end?

Mr. Bill Brummel: Well, we have a commitment from PBS if I want to show it on the PBS network of stations. We're aiming for a 2023 broadcast, probably spring. Currently, I really want to maximize the impact the film will have with the general cancer community. And for the last six months or so, we've initiated impact and outreach campaigns. And by that I mean we're doing branded screenings and webinars and speaking and showing films at conferences. We're aiming at the cancer advocacy and support communities, universities, medical schools, clinician associations. We've done a bunch so far. We're doing more. We're also trying to partner with corporations or nonprofits to bring these screenings to cancer advocacy and organizations that might not be able to afford a screening. And we're looking for underwriters with the PBS podcast. But the film will get out there. I just really, for the time being, want to concentrate on the cancer community.

Dr. Pat Loehrer: That's terrific. So we're going to show a one of the performance clips. Do you want to set that up for us, there.

Mr. Bill Brummel: COVID shut down the choir. So every time I see a performance, it makes me long for more and more performances. But this clip is as rendition of Ain’t Got No, which was popularized by Nina Simone in the ‘60s. It was originally written for the musical 'Hair', but one of the unique things about the choir is that they at times rewrite lyrics to songs to make them more illustrative or the lyric to explain the full impact of having a laryngectomy. So this is the song we're playing last, it's the finale of the concert and the film. The first half of the song speaks to all the things we've lost by not having a voice box. Second half, which we’ll see, speaks to all the things we still have, can still do in life. Sara helped adapt the words. It was a group effort.

[Video clip playing]

Singer: [singing] What have I got? Why am I alive anyway? Yeah. What have I got? Nobody, nobody can take it away. I…

Choir: [singing] got my hair, got my head, got my brains, got my ears, got my eyes, got my nose, I got my mouth. I got my smile.

Got my health, got my tongue, got my teeth to make these sounds, in my head I change my breath, I got control. I got voice. I got poems, I got friends, got my songs, got my limbs, got my heart, got my soul, got my pride.

I got my voice.

Opera Singer: [singing] What have they got? Sing, what have they got?

Choir: We’ve found our voice.

[Applause]

[Video clip stopped]

Mr. Bill Brummel: Obviously, the woman that sang at the end did not have a laryngectomy. She's a professional opera singer.

Dr. Dave Johnson: I think I can safely say, for all of us here today, that we thank you for producing such an inspirational film, and one that really I think captures the emotions that go along with, one, being diagnosed with cancer, two, going through treatment, three, experiencing survivorship and the support. And Dr. Sinha, to you, thank you for inspiring Bill to doing that.

We have maybe just a couple of minutes if there any questions from the audience. We haven't received any via the text. So if there's any questions, there's a microphone here. And as an added incentive, if you ask a question, you get a free Oncology etc. t-shirt.

Dr. Pat Loehrer: Better yet, we may not give them. That might be a great incentive.

Dr. Dave Johnson: Don't trample one another running to the microphone. I see, there are people who want their t-shirt. So please.

Question 1: Thank you so much. That was a beautiful film. I'm a nurse, and it's a great inspiration. And I'm sure it's a great inspiration to the patients. Are there any similar organizations in the United States doing a choir?

Mr. Bill Brummel: Not that I know of to the extent that Shout at Cancer does. There's several laryngectomy support groups or laryngectomy clubs around the United States. And every once in a while, you'll see one that the patients get together and sing for fun or they do a Christmas performance at some event. But Shout at Cancer takes it really to an unheard of level. I've never heard of anybody doing this in the world as much as they do in terms of the original writing, the professional musicianship, the rehearsal. So I'm not aware of any that take it to that extent.

Dr. Pat Loehrer: I just want to say from my own behalf, we're in this world. The best thing you can do at the end of your life is to say that you made a difference. And this film, what you have done has made a difference. As long as I have the capacity to remember, I will remember you and I will remember this film. So thank you very much.

Mr. Bill Brummel: You're welcome. And thank you for saying that. I’m touched. And that exactly was the point. I think that was the point when Dr. Sinha said, 'You should do a documentary about the psychosocial effects of having a laryngectomy recovery and living with a laryngectomy.' I don't know that he thought I’d do it to this extent, but that is the message I want to inspire people who’ve had a laryngectomy, and I want the world to know and to relate better to people and understand people.

Dr. Uttam Sinha: That gives me a lot of joy in what it means to recognize leaders like you and the society of head and neck cancer patients. And Bill has been a driving force for me to stay in head and neck cancer surgical oncology care.

Dr. Pat Loehrer: The world's a better place because of both of you.

Dr. Dave Johnson: Yeah, for sure.

Dr. Pat Loehrer: For those that were here in the audience and those at home, don't forget, you can claim credit for this. Provide feedback. And if you could, I really would like to have a little bit about who's the best-looking podcaster, if you could.

Dr. Dave Johnson: I think that's critically important. And I appreciate Dr. Sinha’s recommendation. It's made me rethink my take two aspirin and call me in the morning recommendations. So I'll have to be more productive in the future.

But this brings us to the end of this podcast. I don't know if any of you in the audience have listened to our previous Oncology, etc. podcasts. We hope that you did. And we hope that you will. As we've said at the end of each of our podcasts, we welcome ideas. We will literally talk about almost anything oncology related or not. That's why we have the 'etc.' on and it's been a great joy for Pat and me. Both of us enjoy doing this. We've been great friends for over 40 years. And it's a wonderful way of cementing the friendship.

So thank you for all of you who are here in the audience. It'll take about an hour to file out with this large crowd so please be careful as you move to the doors. Thank you.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

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Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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In part two of this two-part ASCO Education podcast episode, host Dr. Jeremy Cetnar (Oregon Health & Science University) continues the conversation with Drs. Lauren Abrey and Jason Faris, whose careers have criss-crossed academia and industry. They share words of advice for trainees today. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Jeremy Cetnar: Hello, and welcome to Part 2 of the ASCO Educational Podcast episode focused on career choices and transitions. My name is Jeremy Cetnar. I'm a Medical Oncologist and Associate Professor of medicine at Oregon Health and Science University in Portland. In Part 1, Dr. Lauren Abrey and Dr. Jason Faris about their motivations for pursuing medicine, and how they arrived at the different positions they've had. Today, we'll further explore career fulfillment, maximizing impact on patient care, and differences between working in academia and industry.

Dr. Faris, what have you learned from the different roles you have had, and what aspects of your current work do you find most rewarding?

Dr. Jason Faris: So, there's a lot to discuss here. In my academic and patient care roles, I felt extremely privileged to forge strong bonds with patients and their families, to offer support, counseling and hope in the context of making really difficult, challenging decisions... to rejoice in the individual victories, whether that was clean scans and normal tumor markers after adjuvant therapy for Stage III colon cancer, using the neoadjuvant therapy in locally advanced pancreatic cancer and watching them go to resection, helping to maintain quality of life by addressing key symptoms that a cancer patient unfortunately must endure, and providing emotional support when things do not go as hoped.

Whereas the latter times in GI cancer patients are unfortunately all too common. And the moments or clinic visits where the cancer has recurred, or the treatments aren't working really do take their emotional toll on clinicians. I'll just say I took many of those losses personally. And as a general rule in medicine, I tend to wear my heart on my sleeve, which can be a mixed blessing. But that shared sense of purpose and the many times where you were able to offer something meaningful to patients and families provided real fulfillment and joy. I think at the time of the two transitions I've had, this was fundamentally the most difficult part for me, which was relinquishing these direct patient care interactions.

So, another highly rewarding part of my role in academia was working with colleagues to open clinical trials or conduct clinical research. I had opportunities to be mentored by or collaborate with multiple people Ted Hong, Dave Ryan, Chin Wu, Jeff Clark, David Ting, and others at Mass General, as well as Lionel Lewis, Konstantin Dragnev, and Steve Leach at Dartmouth. Treating patients on clinical trials was always a stressful enterprise but highly rewarding, and I had the chance to be part of some really amazing groundbreaking trials at MGH, in some cases witnessing breathtaking responses in patients who were out of treatment options, in some cases for many months.

Another highly rewarding aspect of my role in academia or my roles in academia involved all of the many opportunities to engage in teaching and mentoring, whether that's with medical students, residents, or fellows, where the enthusiasm for helping patients and learning was always infectious. Finally, I'd be remiss not to mention the wonderful nurse practitioners that I've worked with like Patty Tammaro at Mass General, with whom I cared for many GI cancer patients for years, and Elizabeth McGrath at Dartmouth, whose wisdom and dedication to patient care was really inspiring.

On the industry side, on the NIBR side, I've had the opportunity to work on novel therapeutics that are making a bench to bedside transition from a drug candidate to a first in human Phase 1 trial, which to me is a thrilling, complex, and highly fulfilling endeavor that contributes critical knowledge to advance the field. And in the best of cases, identifies therapies that has the potential, that have the potential to alter the prognosis for thousands of future patients. As a clinician or clinical investigators, those times where your patients are responding to their treatment, whether it's on or off a clinical trial are wonderful and so incredibly rewarding. And I would argue that there's a similar phenomenon in running trials in industry, where there's nothing quite as magical as having a cadre of patients who had run out of treatment options, enrolled to a clinical trial designed based on compelling science, go on to experience sustained and significant responses.

I absolutely love the commitment to patients and to follow the science, the collaborations among our teams, and interactions with our academic colleagues which I really treasure. I'm part of a team whose responsibility is to ensure the development of a clinical protocol to safely evaluate the potential of that therapeutic, carefully monitor for adverse events, evaluate the emerging pharmacokinetic and pharmacodynamic data, and most fulfilling of all, begin to observe responses in patients whose cancers had progressed on standard of care therapies. So I think the chance to have an opportunity to explore new therapeutics that might impact the eventual treatment of thousands of people with cancer is what keeps me engaged and fulfilled. It's been a wonderful opportunity and applies the clinical skills and patient focus from my prior roles and combines this with the resources and expert teams to run and analyze clinical trials.

Dr. Jeremy Cetnar: If I can opine a little bit and ask you guys some philosophical questions. I think what I'm hearing today and what I've heard from other folks who have made that transition is that in industry versus academics, you work in a team, and you're evaluated as a team. And that's very different than in academics. You're very much rewarded for, whether it's patient volume or number of papers or leadership. That seems to me like a very big difference in terms of academic versus industry. And I'm wondering if you guys can comment on that a little bit more. Then you guys also mentioned, at least you just mentioned this, Dr. Faris, is that some will also say that when you go into industry, you're able to just impact a much bigger population of folks rather than typically in an academic setting where you are working one on one with patients. And yes, you have your IETs and whatnot, but there's just a bigger vision. Would you say that those are two accurate differences that are fairly significant, Dr. Abrey?

Dr. Lauren Abrey: Yes. You are certainly part of a team. But I think if we're honest, you're part of a team when you're in the hospital. So I ran the team of research nurses. I ran the fellowship program. I needed people to manage the patients who were in-patient and to help me look after the clinical trial conduct paperwork, etc. and so I think that does translate into the setup that you find when you move to industry. It may be a little bit that your personal success, and industry can get very sometimes focused on metrics, like what have you contributed? What has the team been successful? So you do need to think about how to set yourself up for success. If you're leading the team, how do you set the team up for success? To me, that doesn't feel terribly different than academic medicine, but I could see where it could be a change depending on what your role was in the academic world. So I think that's reasonable.

The other part of what you said, I struggle with that sometimes. I feel like we tell ourselves, that we're impacting more patients. And I think that's true. If we get a drug approved, and potentially that drug is used, not only in the US, but across western countries, in Europe, potentially in China, you get a sense of that. But it's like how do you feel that? You feel the story of an individual patient. Sensing the scale can be hard. News media know this well. They often tell the story of a particular person in the Ukraine right now to try to help us understand the scale of the war, because otherwise, it's a little impossible to digest. So for me, that doesn't always resonate. I think it resonates when I go out and talk to the different physicians practicing in different parts of the world. And I think that has been an incredibly eye-opening experience for me being in the global organization, is seeing the impact well beyond the US, because I think most companies are very indexed on the US. And we understand US practice well, but I think understanding the impact we can have across the world is also really inspiring, humbling, challenging, and something I think we all have to contend with because it's not the same everywhere. So yes, no, and in between, that's where philosophical lives, so thank you.

Dr. Jeremy Cetnar: Yeah. Well, that's a fascinating perspective, the international perspective. Very interesting. Dr. Faris, how about you?

Dr. Jason Faris: I completely agree with Lauren. I think on the team question, I definitely feel like we worked on teams in academia as well, whether we're talking about the multidisciplinary groups that are needed to take care of GI cancer patients, which always involves multiple specialties. I think at MGH, in particular, we would tend to go see the patient as a group, which is a bit unusual, to try to get everyone's schedules aligned, to be able to go into the room together. But it really presented an opportunity for the patient and the families to ask questions of us as a group and hear any disagreement that's in the room between the providers right there.

There's absolutely a ton of teamwork that goes into taking care of patients. But what you were alluding to, I think, is also right, which is your promotion, your opportunities for advancement are sometimes couched on or developed from accomplishments on the individual side. And I would say more so than is true in industry. I think that's correct as well. I mean, certainly there are multidisciplinary grants that I was a part of, of course, publications that had multiple authors to which I was a contributing author. Sometimes I was first or last author, sometimes I was in the middle, but contributing to the paper. So there was teamwork there, but no question that there's an element of individual accomplishment. How many first- and last-author publications do you have? What's the grant situation look like in terms of ability to supplement the RVUs that you need to generate your clinical…? There's no question that there's an element of that that's not a present to the same degree in an industry role.

And I just wanted to speak to the impact side, because I also agree with what Lauren said here. I think the idea and the hope is that in industry, we have an opportunity to potentially affect the lives of many, many, many patients, thousands of patients potentially, with a given cancer type if a new therapy is a homerun and takes off and is approved. That's a huge draw and I think something that motivates all of us is to be a part of something like that. But of course, not every drug, far from it, unfortunately, is going to end up as an approved drug that impacts thousands of patients.

So I think it requires some recognition of that fact and patience and continuing to work on multiple projects, and always under the prism of doing the right thing for the patients while those trials are open. And I think that's the key, as well as working on scientifically exciting projects, really proud to say in NIBR that we follow the science. If there's an indication to be explored, based on the science, it may not be the most common indication in cancer, but if the science leads us to that place, that's what we work on. I think that decision making gets tougher, obviously, as you move through the system into a later stage, more commercially informed decision.

But I think and certainly on the early phase trials side, that's something that's really exciting. I think on the academic side, taking direct care of patients, you have incredible impact on individual patients, and there's a lot of individual patients. I think you have tremendous opportunity for impact there as well, and your impact can be measured by those that you mentor and teach as well, the committees that you serve on influencing other trials that may be open at your institution. So I would in no way suggest that the impact is less in academia. I don't think that's true at all. I think it's just a different approach.

And it is true that if you're lucky enough to work on a program in industry that ends up being an approved drug, you can help thousands of future patients or your team has helped thousands of future patients. That's also true when you're on the academic setting, serving as a PI, contributing safety data and efficacy data, really giving the best information back to the sponsor that you can or maybe you're running your own investigator-initiated study that can change a standard of care down the road. So that's the homerun. That's kind of the Grand Slam of situations that might develop as a medical oncologist on either side of the divide.

Dr. Jeremy Cetnar: Thank you. I'd like to shift gears just a little bit and ask you, for people who are deciding for a transition in their career, what are some characteristics or skills or other attributes that you think would make one successful in industry? What are some things that are really, really important to be successful? And that might be different than in an academic situation or not? I'm not sure. And maybe that's another question is, you know, what are some of the things that make people successful in a career in industry? Dr. Abrey?

Dr. Lauren Abrey: So I think there are so many things that you can do in industry that depending on what your strength is, I think you have the opportunity to play to that. So again, I think if you are very entrenched in the science, and that is really what makes you want to get out of bed in the morning, being in the early research group, whether it's Novartis, Roche, other companies or small biotech, you can really dig in and spend time thinking and contributing in incredible ways. And if you're the person who is much more interested, perhaps in finding out, what's influencing the patterns of care and why people are using certain drugs or certain treatment paradigms, you could absolutely work on the absolute other end and work in medical affairs and be the person who's out there, who's the critical partner to whether folks at MGH, OHSU, major cancer centers around the world, to figure out how do we bring those two together.

And I think the group in the middle typically, like the drug development group that's getting the approval, so running the large Phase 3 studies, that requires people who are in it a little bit for the long haul. Those tend to be large studies. They run over several years, you're constantly looking at the incoming data, and yet you're blind to the results. So you have to be pretty diligent while you're in that space and willing to just buckle down and work hard. But I think there are things for everyone. And I think it's a little bit similar to what I discovered when you went into medicine. Not everybody's going to be a cardiothoracic surgeon. Only a few of us end up in this weird oncology space. But I think it does give you the chance to reinvent yourself and explore a few things.

So I wouldn't say you have to have something. I think probably what you should do is talk to a lot of people. I think people make a lot of assumptions about what a change to a career in industry is or means. And you probably don't know what you don't know. So call people like me or Jason or someone who's done it and talk to people, because I think that's probably the best way you can make an informed choice.

Dr. Jeremy Cetnar: What do you think, Dr. Faris?

Dr. Jason Faris: Can I offer some advice? So are we in this kind of advice section?

Dr. Jeremy Cetnar: Absolutely. Please do.

Dr. Jason Faris: Yeah. So I would say my advice to oncology trainees would be to keep an open mind and stay flexible. I've got a Wayne Gretzky quote that I'd like to bring into this here, which is 'You miss 100% of the shots that you never take'. And I feel like I've probably taken that flexibility to a bit of an extreme with my career path and transitions. But ultimately, it's really enabled me to experience diverse career opportunities that I might otherwise not have had the chance to really experience. I think sometimes there can be assumptions or negative stereotypes about moves from academia to industry. But my own personal experience, now twice, at NIBR has been overwhelmingly positive. I've learned a tremendous amount from both environments, which I think provides me with a different perspective on design, conduct, and analysis of clinical trials and allows me to bring a patient-centric view into clearer focus in my industry role.

I think it's also really critical to recognize that there are significant stressors and positives to each of these career paths. And they're not necessarily one way. I know multiple colleagues who have made a transition from academia to industry. Other colleagues like me who did return to clinical practice in a clinical investigator role or returning from industry to an academic lab, I've seen that happen multiple times, and multiple colleagues, of course, that have transitioned to other industry roles.

So regardless of which path someone ultimately pursues, the real critical thing to me is to remember what brought us to medical school in the first place, which is a commitment and focus to patients above all else. I believe this can be achieved in many career options, direct patient care, teaching and mentoring, clinical investigator roles in the academic setting, or in industry by collaborating with academic colleagues and patient groups, focusing on programs that have high potential to advance treatment options for diseases with high unmet medical need. I happen to think GI cancers are the poster child for that, but you know, I'm a bit biased, and designing trials that are as patient-centric as possible. So that's the kind of advice that I would offer to people is not to think of these as mutually exclusive or there's only one way forward or if I make this decision, it's irreversible. I don't think any of those things are true. And I feel like I'm living proof.

Dr. Jeremy Cetnar: Dr. Abrey, back to you. Any advice?

Dr. Lauren Abrey: I can only agree with Jason, and I know a number of people who've gone in both directions, including some who have been in pharma for quite a long time, and then make a decision to go back to patient care. Sometimes, I'm going to say, like as a final career chapter, but it has been a bit like that, including in countries where it's quite difficult to return to practice, that they need to go back and redo some training.

So I think, move forward, do things that make you want to get out of bed in the morning, and that probably will change over the course of your career. But I think don't be afraid to try something because the worst thing that could happen—that's always a good question to ask yourself, right? What is the worst thing that could happen? If it doesn't work out, you can probably make another choice.

I also think you should, you know, I already said talk to lots of people. But pay attention to that network that you have and nurture it, cultivate it, because some of those people in your network might become mentors at some point, might become advocates or sponsors at some point. And always, always, always take the opportunity to mentor somebody else, including if you're young, do some reverse mentoring. I have gotten some of my best mentoring from somebody that I agreed to mentor, but he really ended up reverse mentoring me. And he's actually now leading a very small biotech and you could argue has leapfrogged part of my career. And that's a fantastic dialogue that I get to have. So, great fun. We only go around this once. So have some fun while you're doing good things, too.

Dr. Jeremy Cetnar: Ain't that the truth? And I'll tell you, this is a small world. It does feel like the more people you talk to, all of a sudden, we all are connected. And so I just want to thank you, Dr. Abrey, Dr. Faris, for your time today, for your perspective, your interesting stories. And to all the listeners, we appreciate you tuning into this episode of the ASCO Education podcast.

Dr. Jason Faris: Thank you very much.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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In part two this ASCO Education Podcast episode, hosts Dr. David Johnson and Dr. Patrick Loehrer continue their conversation with Dr. Richard Pazdur, director of the U.S. Food and Drug Administration's Oncology Center of Excellence, focusing on his leadership and vision for improving cancer care worldwide. The conversation includes reflection on drug toxicities, approval processes, and complexity of clinical trials. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Pat Loehrer: Hi. I’m Pat Loehrer, the Director of Global Oncology and Health Equity at Indiana University.

Dr. Dave Johnson: And hi. I’m Dave Johnson at UT Southwestern in Dallas, Texas.

Dr. Pat Loehrer: This is the second half of our Oncology, Etc. conversation with Dr. Rick Pazdur, who’s the director of the FDA’s Oncology Center of Excellence. In Part 1, we chatted with Dr. Pazdur about his upbringing and his early career. Today, we’re going to focus on his leadership and vision for improving cancer care worldwide. But first, we’ll discuss how cancer has impacted his life personally.

I want to flash-forward. I had the pleasure of knowing Mary. And there was no question, if you had a problem in oncology, you would go to Mary and not Rick Pazdur when you were a house staff member. But moving forward a bit, I’m not sure if all the listeners know that Mary came down with ovarian cancer. Dave himself had cancer. My wife had breast cancer. It is incredibly hard to be an oncologist I think when your spouse or someone who’s close to you has cancer, and particularly, being married to a medical oncology nurse. Maybe just share a little bit about that journey of being a husband of a-

Dr. Richard Pazdur: Yeah. It is interesting because going back to the Rush story, the first patient that my wife and I had in common, and this is so ironic, was a patient with ovarian cancer. The last patient that we had in common was her, which is some ironic fate, so to speak. And the story began of her illness was right around Labor Day. We had gone to Chicago in February driving back from Chicago. I noticed that she kept on taking a whole bunch of Tums and then saying - Oh, I just got a lot of GI symptoms, and she went to see her gastroenterologist or GP and he said, ‘Oh, this is just, you know, indigestion.’ And two weeks after that or not even that, she was in the hospital with a massive amount of ascites, needed an intensive care unit. It was readily apparent just on getting her CA 125 what she had and she wound up one day in debulking surgery and then IP chemotherapy, etc.

I think something that I learned, and I think we knew from the very beginning that this was not going to be a curable illness, and how to deal with that on an emotional level. And I have to give my wife credit. She spared me a lot of the emotion because she was such a strong person. She made all of her own calls as far as what she wanted. She would ask me what I thought, but she would do her own research, she would go to her own doctors’ appointments. She said, ‘You don’t really need to come with me. I’m self-sufficient.’ She was very much interested in helping other cancer patients, and after she died, I think one of the most cherished conversations I had was a group of women that came to me and said how much she helped them during their support group because she was a nurse. She knew she was dying. She had emotional maturity not to fall apart but to accept the inevitable in a very strong way.

My wife was a very religious person, had gone to Catholic schools, really embraced religion during those terminal years basically. And I think that was a great sense of comfort to her. But it did teach me a lot of lessons when you take care of somebody that has cancer, and that is, what a bad job we do with drug toxicities. Drug toxicities to medical oncologists and especially the people at the FDA are numbered, Grade 3, Grade 4, Grade 1. These toxicities are tolerable, tolerable to who, so to speak. And how to manage these toxicities and how they interrupt your life is one of the lasting experience I have, which I always will remember. And that has been one of my roles recently is forming several programs that we have in the OCE to look at dosing, to look at what is this definition if the drug is tolerable or well-tolerated or if the toxicities could be managed.

I always say, yeah, every toxicity could be managed, even death. You call the undertaker to manage it. So what do you really mean by that statement. But I think the issue of toxicity is an important one. And then also going on clinical trials and having people considering what you want to go on, what risk you want to take, and what is actually in the informed consent and how meaningful that is.

Dr. Dave Johnson: Really glad you brought that up, Rick. That matches my own experience with lymphoma and going through chemotherapy. And as an oncologist, one would think I would know what the side effects are. I’d recounted them dozens and dozens of times to people over the years, but until you’ve actually experienced them either personally or up close as you did with Mary, it’s impossible to fully understand. I’ll give you one example.

Fatigue. Everybody thinks they know what fatigue is, but until you’ve had chemotherapy-induced fatigue, the fatigue that never abates, you just don’t understand what it is. It’s debilitating in ways that are unimaginable to most people. So I’m sure that experience certainly shaped your view and your role at the FDA.

Dr. Richard Pazdur: Correct.

Dr. Dave Johnson: I wonder, if you might share, you initiated a number of programs recently, including programs to try to improve coordination and co-operation amongst the pharmaceutical companies. Could you speak to some of those programs for us?

Dr. Richard Pazdur: I think one of my favorite programs is Project Orbis. Project Orbis is an idea I had when I was walking down the street. It just hit me. When I came to the FDA, one of the things I rapidly noticed is how isolated the FDA was, even from the rest from the regulatory agencies throughout the world. There was very little cross-fertilization there. So one of the very first things that I did was set up a monthly tele-conference first with the EMA, the European Medicines Agency, and then we ended on Health Canada, Australia, Japan, Singapore, you name it. And one of the things that became really apparent to me, we at the FDA got applications always first—always. That’s obvious. You know why they had given it to us first? The money. That’s where the finances are going to be.

So we got the application first, and it could be 2 years, 18 months, 12 months, that these other countries, Canada, Australia, Switzerland, and Brazil, Israel, would get these applications. And I said, well, this isn’t right, really, because these people, they have cancer. They have every right to get these medications as soon as possible, and also we have such a large agency. We have 80 to 100 oncologists that work there, and most of these agencies have one or two oncologists. So our expertise in oncology at the FDA is so much greater than these other regulatory agencies. How can we leverage that to help these other countries?

So we started Project Orbis, and what it was is that companies come in and they submit an application and they simultaneously submit the same application to the countries that want to participate in the program. They are all preselected and have confidentiality agreements with each other. And we worked together on the applications, basically reviewing the applications. So we had many meetings, tele-conversations, telephone conversations with countries. So that expedites these drugs. This has really had a lasting impact because from a worldwide perspective, it’s really promoted more rapid development of drugs and rapid approval of drugs, and that’s important because that establishes sooner new standards of care that will impact future trials.

So in addition to the humanitarian issue of improving healthcare for patients in these countries, it has an impact on the global clinical trial system by having new standards approved much faster and accepted by world authorities.

Dr. Pat Loehrer: Let me just jump on that for a second, just to make a comment. Back when we were growing up, there would be like three to five drugs approved-

Dr. Richard Pazdur: Yeah.

Dr. Pat Loehrer: And today, it’s like once a week, there’s a new indication for oncologists.

Dr. Dave Johnson: Our listeners have another question that might be appropriate to ask at this time. What is the most common mistake that drug companies make in their applications to the FDA or in the process of trying to get their drug approved? Is there a frequent mistake that you can advise them?

Dr. Richard Pazdur: Well, they don’t come and talk to us. That’s number one. They want, not necessarily what the best registration pathway is, but what the quickest registration pathway is. And sometimes the quickest registration pathway, especially single arm trials, are not the best registrations pathway. So my advice is rather than playing games with the FDA, to put it in the vernacular, just do the right thing and say, what is the optimal information that patients need when I develop this drug.

We’re seeing a lot of problems now with various drugs where people are developing in a refractory disease setting a drug, and they plan on getting accelerated approval on a response rate. So they push and push the dose. And with a single arm study, you can’t really evaluate safety that well. Everything is attributed to the drug, and they want to get the highest response rate. And they get it, and there’s a confirmatory study, and the arm of the confirmatory study, the control arm may not be as toxic as theirs, and we’re seeing a wave of drugs that now have inferior survival compared to controls, which probably is predicated upon, they got the wrong dose. And I think that is one of the major programs that we have, that we need to address is dosing in oncology, this ‘More is better, more is better,’ and ‘Let’s push the dose as high as possible.’

More isn’t even probably good in cytotoxic days, but certainly, not a good idea in targeted therapies and certainly not a good idea in biological therapy. So we've really got to think about dosing more, penetration of targets, what’s the optimal dose rather than what’s the highest dose. You know as well as I do, pharmaceutical companies want to go with the highest dose because the major hurdle is the demonstration of efficacy, even in a randomized study. So nobody wants to be blamed by saying, well, you spent $100 million on a Phase 3 study and it’s negative because you used too low of a dose. But then at the end of the day, we don’t have a really good tolerable dose, and it’s really hard to go backwards and look at dosing after a drug was already approved because the efficacy study has already been done.

Dr. Pat Loehrer: The other aspect of drug companies is not only getting the dosage there, but also the duration. There is motivation for money, and so patients are going to and-

Dr. Richard Pazdur: Oh, count on that.

Dr. Pat Loehrer: So it begs a question, and I know the FDA can’t do this, but in other countries, there is a monetary review together with the toxicity review. Can you reflect a little bit about that to the best of your ability?

Dr. Richard Pazdur: Well, even within our simpler agencies, they may communicate more than we do with CMS, but all oncology drugs that when they’re approved are then paid for by CMS, okay? In these other countries, that is not so. They may get approval and then they have to go to these health assessment agencies that will decide and argue with the companies what the pricing of the drug is. I think it’s a mistake, honestly, for the FDA to get into pricing. We have a hard enough time with efficacy and safety, and pricing is a very ephemeral concept because it could change on a dialing. Somebody could promise you, you should approve their drug because it’s much cheaper on Monday, and on Friday, they could say, 'Oops, we made a mistake. We really think that this dose has to be X number of dollars.' And you could see competition hasn’t worked well in oncology with seven PD-1 drugs approved, pricing has not really been of any movement here.

Dr. Pat Loehrer: I’m sorry. Dave may have another question, but let me ask you this. Going back to the clinical trials and what industry asked you- the complexity of clinical trials is going up logarithmically compared to the way they were in the ‘70s and ‘80s. In many of the trials where we have to get all this data in order to soothe the FDA, what are your thoughts about simplifying clinical trials?

Dr. Richard Pazdur: Oh yeah. I’m for it. I am for it. If you really look at it, these are not FDA requirements for the most part. The companies want them, all of this data because it’s controlled. They don’t want to be blamed at the end of the day for not capturing this data or that data. They have developed complicated bureaucracies, going back in my sociology days there, complicated bureaucracies to gather all of this data, the whole CRO industry to go out and pester you guys in practice by doing site visits. It’s a complicated situation and it’s really predicated a lot on the history and bureaucracies that have been built up and not money to strip away those bureaucracies for fear of failure, so to speak, of not catching something.

Dr. Dave Johnson: So Rick, we’re coming to the end of our time that we’ve scheduled. I actually have two questions for you. We’ve asked all of our previous guests, the first of which would be if you could talk to your 21-year-old self today, what advice would you give yourself? After you’ve done that, we’d like to know what books have you been reading lately or is there some documentary that you’ve seen that you would recommend to us and our listeners?

Dr. Richard Pazdur: I would tell myself, when I was 21 years old, relax and be less anxious. All things pass. I think we get so anxious when we’re young about relatively small things. I remember my first ASCO presentation, I was petrified. My heart was beating out of my chest. I was sweating. And like relax. It’s one of a thousand presentations at ASCO. We tend to magnify things, and I think age puts things in perspective. This in the reality of the world is a small thing, and people probably won’t even remember it.

Dr. Dave Johnson: Excellent advice.

Dr. Richard Pazdur: My favorite author that I’m reading now for the last couple of months is a presidential historical author, Doris Kearns Goodwin. I think many of you know, she’s written many books. I love her writing style. And I like non-fiction. I like biographies and I like history books, history stories rather than mysteries or things like that, fantasy books. The two books that I really enjoyed, the first one was No Ordinary Time: Franklin and Eleanor Roosevelt: The Home Front in World War II. I don’t know if anybody’s read that. It’s an excellent book. Most of our attention in World War II is directed toward Europe and what was going on in Europe, the battlefields, etc., which I’m not a big fan of reading about battles and stuff, but this was what was going on in The White House and the relationships of all of the people that came there. It was like a hotel almost with the personalities that were flowing through including Churchill and various princes and queens, etc.

But also the interesting relation, the fascinating relationship that Eleanor and Franklin Roosevelt had, I don’t know how to describe the relationship. It truly was an unconventional relationship based on some past history that they had of affairs etc., but it was just a fascinating one.

The best book, though, again I’m reading now, is written also by Doris Kearns Goodwin, and it is Lyndon Johnson and the American Dream. Doris Kearns Johnson was his biographer and spent a great deal of time with him in The White House as well as when he left The White House. But it’s an excellent book on management and reading people, success. One of the things that is most interesting about Lyndon Johnson, and especially when he was running the senate before he became president, was his ability to know what motivated people and how to use that to form a consensus. Does this person want to go on this trip. I’ll give it to him and then he could help me with this. Does this person want to go to this party or get on this position in congress? So it was really a skillset that he had, which I think most leaders need to know. You have to motivate people. You can’t lead by an autocratic masthead, but you’ve got to lead from what do people want and to make sure that they feel you have a personal relationship with them.

As I say to my staff, everything in life is personal—everything.

Dr. Dave Johnson: Well, it’s been a great session, Rick. We so much appreciate your willingness to spend time with us. We wish we had twice as much time. I’m sure we could go on for hours. Thanks again, and we appreciate all you do at the FDA. You’ve been a fabulous leader, and we hope you continue on for many years to come.

Dr. Richard Pazdur: Thank you so much, Dave, and thank you so much, Pat.

Dr. Pat Loehrer: Great to see you.

Dr. Dave Johnson: Pat, before we leave, any idea why our patients seem to get sick on Saturday and Sunday?

Dr. Pat Loehrer: I have no clue. Do you know the answer, Dave?

Dr. Dave Johnson: Yes. They have a weekend immunity.

Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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In part one, of this two-part ASCO Education podcast episode, host Dr. Jeremy Cetnar (Oregon Health & Science University) interviews two very accomplished physicians and researchers, Dr. Lauren Abrey and Dr. Jason Faris. We’ll hear about their motivations for pursuing medicine and how they arrived at the different positions they’ve held in academia and industry.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Jeremy Cetnar: Hello, and welcome to the ASCO Education podcast episode on career paths and oncology. My name is Jeremy Cetnar. I’m a Medical Oncologist and Associate Professor of Medicine at Oregon Health and Science University in Portland. I’m delighted to introduce today’s two guests, whose careers in oncology have crisscrossed academia and industry. Dr. Lauren Abrey and Dr. Jason Faris, I’m excited to chat with you about the inspiration and motivations that drive you, people you’ve leaned on, how you’ve made your career decisions, challenges you’ve faced, and more.

So let’s start by asking each of you, could you share a little bit about your early life and background, what attracted you to medicine, and who are some of your early mentors and role models? Let’s start with you, Dr. Faris.

Dr. Jason Faris: Yeah, I’d be happy to. Thank you. So, I grew up in a small town in South Jersey in Greater Philadelphia. My mom was a registered nurse in pediatrics in the maternal infant unit for many years at Cooper Hospital. I was always interested in science and medicine and my mom’s dedication to her patients. Her altruism and compassion served as a real inspiration for me, for my eventual decision to go to medical school. But I took a long time to get there. I had a bit of a circuitous route to arrive to my career in medicine though it started off conventionally enough. I was initially geared towards a premedical track in college, majoring in biology, but an exciting summer research project, working on the biochemical mechanisms underlying osmoregulation in a marine crustacean with mentoring from my first true mentor, Dr. Don Lovett, led me to apply to and attend graduate school in molecular biology at Princeton.

This was followed by a position at Merck as a molecular biologist in the genetic and cellular toxicology group. I went to veterinary school at the University of Pennsylvania where I met my future wife. And then finally, back to the original plan of attending medical school, but I have to say with a much better sense of why I wanted to attend medical school in the first place, now in my late 20s, which was a bit unconventional at the time. I really did my fair share of exploration of Allied Health careers. That’s for sure. I attended Johns Hopkins for medical school, where I quickly discovered a passion for internal medicine. And that was far and away my favorite clerkship and sub-internship. That's the background to how I got to medical school.

Dr. Jeremy Cetnar: Dr. Abrey?

Dr. Lauren Abrey: Interesting. I love your story. We share... I grew up in a small town, not so far away, but I was in upstate New York. And I think there were two influences that kind of got me to my ultimate passion for brain tumors. And this sounds a little quirky to start with. But I had a pretty serious head injury as a tween. So I guess I was about 12. I had a skull fracture, epidural hematoma. And while I would never have said I woke up at that moment and thought I have to be a doctor, I think I became fascinated about things to do with the brain.

In parallel, something that I think tinged a lot of my childhood was a number of family members who had cancer. So both of my grandmothers had breast cancer, while I was well aware of the fact that they were sick and battling this. And two of my aunts also had cancer. And I would say it's an interesting split in my family. So about half of them are survivors and about half ultimately died of their disease.

So both of these things really motivated me or focused me on the need to do something important, but also to do something that really motivated me to get out of bed in the morning. I think I was much more to the point. I went straight to college, straight to medical school. I remember calling my parents and telling them I was applying to medical school and having them say, “Wait. You? Really?” So it wasn't necessarily the family expectation that I would do this, but I was very driven and motivated to make some of these choices and then discover my particular interests as I progressed through medical school. So I went to Georgetown for medical school and then have trained at a number of places in the US. I think that's a little bit how I took my first step on this career journey, let's say.

Dr. Jeremy Cetnar: So take us through what the decisions were like in your head at the end of fellowship in terms of first jobs. Dr. Faris?

Dr. Jason Faris: In terms of my choice to pursue a career in medical oncology, this goes back to medical school during an internal medicine clerkship. I had an assistant chief of service, ACS, at the time, Phil Nivatpumin. He'd go on to become a medical oncologist. He really inspired me with his optimism and bedside manner, including with multiple oncology patients on that clerkship. His enthusiasm for science and medicine, his teaching skills, and an absolutely legendary fund of knowledge. For Phil, he was just an incredible ambassador for both internal medicine and for oncology.

After medical school, I went to internship and residency at Mass General Hospital. And in one of my first rotations, I was on the oncology service, which was not so creatively called Team Three. I think they can up the ante there, but oncology services on Team Three. I was caring for many extremely ill patients battling disease progression from their metastatic cancers, or sadly, in many cases complications of their treatments. During that rotation, I was intrigued by clinical trials offering novel treatment options based on cutting edge science, but also struck by the number of patients who just didn't have any clinical trial options. I became aware of the limitations of the conventional treatments that were offered.

I was really inspired by the patience and dedication of the nurses and doctors caring for them. And I vividly recall a roughly 50-year-old woman I helped care for with AML, watching as the 7+3 chemotherapy caused lots of side effects for her and being amazed by her strength and grace, her resilience as she faced her illness, her potential mortality, and the intense chemotherapy she was undergoing. And I knew during those moments with that leukemia patient while caring for other patients on that oncology service that this was the field I would pursue. Oncology was really the perfect blend of humanism, problem solving, longitudinal follow-up and rapidly accelerating scientific progress leading to new avenues for clinical trial treatments.

Like Lauren, I was motivated and inspired by cancer diagnoses in my own family. My maternal grandmother died of pancreatic cancer during my junior year of college. My dad was diagnosed with colon cancer during my first year of fellowship. So those are all really strong motivators, I would say. And after completing my fellowship at the combined Dana-Farber MGH program, my first position out of fellowship was in the gastrointestinal cancer group at MGH. I actually had been training in genitourinary oncology after my main clinically focused year of fellowship, but I did a chief resident year in the middle of fellowship, and that was the tradition at MGH. And as I was about to return to fellowship for my senior year of fellowship, the head of the GI Group and head of the Cancer Center at the time, Dave Ryan, offered to serve as a clinical research mentor for me in GI cancers. As a senior fellow, I wrote an investigator-initiated trial of cabozantinib for patients with neuroendocrine tumors under his mentorship that went on to demonstrate encouraging results, led to a Phase III study in that cancer population, and I ultimately accepted a position at the MGH Cancer Center in the GI cancer group about 11 years ago. And that was the start of my post-training career.

Dr. Jeremy Cetnar: And how about you, Dr. Abrey?

Dr. Lauren Abrey: So for people who don't know, I'm actually a neurologist. I finished my training in neurology and then pursued a fellowship in neuro oncology. I would say it was really patients and observations of things that were happening with patients during my residency. I did my residency at the University of Southern California at Los Angeles. I was at the LA County Hospital, which for people who don't know, is one of the largest hospitals in the country. I had the chance to see several patients who had paraneoplastic syndromes, and got the support from different faculty members to write those cases up, and really resulting in my first independent publications. That was what kind of got me bitten by the bug to understand this link between neurology and oncology.

I very intentionally went to Memorial Sloan Kettering to have the opportunity to work with Jerry Posner. And I think I no sooner got there than I got totally bitten by the brain tumor bug, which seems a little counterintuitive. But the paraneoplastic work was kind of deep laboratory work. And I realized that I really enjoyed seeing the patients having the partnership with neurosurgeons and digging into what is still a pretty intense unmet medical need.

So it was an interesting pivot because I really thought I was going to Sloane to focus on paraneoplasia. I still think I learned so much with that interest that I think we can reflect on when we consider how immunology has finally entered into the treatment landscape today for different tumor types and understanding is there a background in paraneoplastic disorders that could help us. But I have to say it was really the brain tumor work that got me focused and the chance to work with people like Lisa DeAngelis, Phil Gutin, and others that was kind of fundamental to my choices. I stayed there for two years of fellowship and then continued as faculty for about another 15 years at Sloan Kettering. So that's really the start of my academic career and the pivot to industry came much later.

Dr. Jeremy Cetnar: So both of you have impressive career CVs, have been trained at very prestigious institutions. So at some point in time, take me through, what was that transition like between, 'Hmm, what I'm doing is enjoyable, but maybe there's something else out there that I want to explore.' And what I mean by that is mostly industry at this point. So that's an important question that I think a lot of junior faculty face, a lot of mid-career faculty, maybe even later-stage faculty. But I think that's a tension point for a lot of people because I think there's a lot of fear. I think there's a lot of anxiety about moving outside of the academic realm. So, tell us a little bit about what was the pull in terms of going to industry and what were some of the thought processes that were going on. Dr. Faris?

Dr. Jason Faris: I've experienced two transitions, actually, between academia and industry. I like to do things in pairs, I guess. But the first was, after multiple years at the MGH as a resident fellow and as a clinical investigator at the MGH Cancer Center. As a new attending and clinical investigator, I was attempting to balance my work priorities, providing patients with GI cancers, which is a rewarding but complex and I'd say emotionally intense experience, given the phenomenally aggressive and devastating cancers these patients grapple with such as pancreatic cancer, alongside the other responsibilities of my clinical investigator position.

Those other responsibilities included writing grants and papers and protocols, evaluating patients who were interested in open clinical trials, and serving as the principal investigator for multiple studies. I was serving on committees, mentoring and teaching. Patient care was always my top priority as it should and really must be. And I feel incredibly lucky to have had truly amazing colleagues at MGH across several disciplines, from medical oncology, nurse practitioners, practice nurses, radiation oncologists, and surgeons. It was and continues to be a dynamic place full of extremely talented and dedicated clinicians. I think we really all benefited from the coordinated teamwork in both patient care and research in a really tight-knit GI Group.

But nonetheless, for me as someone who delighted in spending large amounts of time with my patients in the clinic rooms, and I think my colleagues would agree frequently agonizing over decisions impacting their care, achieving sufficient balance to really focus on writing and overseeing clinical trials was becoming increasingly challenging for me. And it was in that context, after spending roughly a decade and the combination of residency fellowship training and as an attending in the GI cancer group all at MGH that I made a truly difficult decision to move from my beloved outpatient clinical and clinical investigator role to industry to focus more exclusively on clinical research.

And after interviewing for several industry-based roles, I accepted a position in the early-phase group at the Novartis Institutes for Biomedical Research or NIBR as we kind of pronounced those words in Cambridge. I absolutely loved my time at NIBR. It's an incredible place with a strong history of and commitment to innovation as well as passionate, talented colleagues, many of whom I've worked with in the past. When I first started at Novartis, I was amazed at the array of experts on the teams I was helping to lead as a clinical program leader. Our teams are the definition of multidisciplinary. They're composed of what we call line function experts in multiple disciplines. This includes preclinical safety experts who design and analyze data from studies that precede the filing of an IND, research scientists, chemists, preclinical, and clinical pharmacologists, statisticians, program managers, drug and regulatory affair colleagues, who focus on the interactions with health authorities, including the FDA, operational colleagues called clinical trial leaders, and many others.

In my role as a senior clinical program leader, I also have the opportunity to collaborate frequently with research colleagues on preclinical programs, designing and writing first in human trials, followed by conducting the actual studies and in close collaboration with our academic colleagues, analyzing the clinical and translational results.

Dr. Jeremy Cetnar: Dr. Abrey, how about you? Was there a moment or what were the moments that led to you deciding to make this transition?

Dr. Lauren Abrey: I guess I have the other sort of story. I got pushed, I would say, in the sense that like many of us, I'm married, and my husband was the one who took a job with Novartis and said, “This would be an adventure. Let's go live in Switzerland.” So similar to Jason, he took a position at NIBR, and I think for many of the same reasons, he really wanted to delve deeply into early mechanism of action and allow himself to dedicate really a chunk of his career to developing key drugs. But moving to Switzerland changes your options suddenly. I think I had spent most of my career at Sloan Kettering doing clinical trials. That was really my comfort zone, my sweet spot. And when we moved over here, I explored briefly, could I set up an academic career here?

And very kindly, I was invited by a number of Swiss colleagues to look for opportunities to do that. But I realized what I loved was talking to patients, and that that was going to be difficult with the language barrier. And I equally loved running clinical trials. So I had a great opportunity to join Roche shortly after their merge or full acquisition of Genentech. This allowed me to continue the work I had been doing on Avastin for brain tumors.

But I think the other thing that allowed me to do, that was something I was really looking for was to broaden my scope and to no longer be niched as just a brain tumor expert. And if you're in academia and you're a neurologist, obviously, you're going to be fairly constrained in that space. But moving into a role in industry really allows you to look much more broadly and work across multiple tumor types. And I spent the next seven years at Roche running not just the Avastin teams that were developing drugs for a number of indications, but really overseeing the clinical development group based in the European sites. And they had about 14 different drugs in different stages of development as well as partnerships with their early research group that was European based.

So it was a fascinating time for me, and I feel kind of like I got thrown into the pond. I knew a lot about clinical trials. I had no idea about so many other aspects of what I needed to consider. And I think Jason started to allude to some of this with the different line function expertise and things I think we take for granted or maybe we simply have blind spots around them when we are sitting in our academic organizations. So it's been a really delightful plunge into the pool. I've continued to swim mostly. Occasionally, a little bit of drowning, but a lot of fun.

Dr. Jeremy Cetnar: What would you say are the major differences between an academic career and industry?

Dr. Lauren Abrey: I think, as you said, the things that are similar is that the purpose or the mission for both is in many ways the same. We would like to develop better treatments for patients with cancer. And so there's a huge focus on clinical trials. There needs to be a huge focus on patients, and that can get diluted in industry. I think the things that you don't appreciate sometimes when you're sitting on the academic side is just really the overarching business structure and the complexity of some of the very large organizations. So you suddenly are in this huge space with people focused on regulatory approvals focused on pricing, focused on manufacturing, focused on the clinical trial execution, and why you are doing it in different spots.

And so I think some of the different factors that you have to consider are things that again, we either take for granted or are super focused when you're in one organization. And I think the tradeoffs and how decisions are made, particularly in large pharma, can be frustrating. I think we are all used to applying for grants or getting the funding we need to do whatever our project or trial is. And then you just start very laser focused on getting to the end. If you're in a large organization and they have a portfolio where they're developing 14, 15, 20 different things, you might suddenly find that the project you think is most important gets de-prioritized against something that the company thinks is more critical to move forward. And that could be because there's better data, but it could also be because there's increasing competition in the space or there's a different pull for a large company. I haven't seen the early development side as much. I've seen the development. I've now seen Medical Affairs for how some of those decisions are made, but I'd be curious to hear what Jason has seen in some of his experiences as well.

Dr. Jason Faris: Comparing and contrasting a little bit between the two, because I've run early phase studies on the academic side, I'll talk more about that in a little bit in terms of another academic position that I held. So I've run early-phase studies there. I've run early-phase studies in industry as well. And they share a lot of similarities, certainly following compelling science, the excitement about new therapies that are going to be offered to patients. But I think the execution is a bit different, and I would say, when you're running clinical trials in the academic setting, you're meeting every patient that you're going to put on study or at least one of your colleagues is, if you have sub-eyes on the study, that's a major, major difference, right? You're directly taking care of a patient going on to an experimental therapy, consenting that patient, following them over time, getting the firsthand experience and data from that patient interaction, but not necessarily, unless you're running an investigator-initiated study, not necessarily having access to the data across the whole study.

You're hearing about the data across the whole study at certain time points on investigator calls, PI meetings, dose escalation meetings, those kinds of things. But you're not necessarily having access to the real-time emergence of data across the whole study from other people's patients. So you're a bit dependent on the sponsor to provide those glimpses of the data, synthesize that and present overview. So those are some operational differences, I would say, because you're not taking direct care of the patients and having your time split among different commitments in that way I have felt a greater ability to focus on the clinical research that I'm doing in my industry-based role, which I like, of course, but I also miss taking care of patients. I love taking care of patients.

So I think it's always a double-edged sword with that if we can use a sword analogy here. But I think they both offer really exciting options to pursue new therapies for patients, which for me, was one of the fundamental reasons that I pursued medical oncology in the first place. It was really this idea that the field is rapidly advancing. I wanted to be a part of that. I saw firsthand what cancer could do to my family or family members, and I took care of patients in the hospital as an intern resident and fellow where I think there's just a tremendous unmet medical need. And so having an opportunity to contribute to the development of new therapies was always a real inspiration for me.

Dr. Jeremy Cetnar: With that being said, what led you to go back into academia?

Dr. Jason Faris: This is an ongoing saga, I guess. So after several years of professional growth at Novartis, gaining experience with designing and conducting clinical trials on the industry side, I was actually at ASCO and I learned of an open role for the director of the early phase trials program at Dartmouth’s Cancer Center. After extensive consideration, which I think you can see as my trademark at this point, I made another difficult decision to interview for the position, which was focused on helping to grow the early phase trials program at an NCI comprehensive designated cancer center that's unique in a way because it's in a rural area. And it had a new director of the Cancer Center, Steve Leach, who's a renowned laboratory scientist with a focus on pancreatic cancer and a surgeon by training.

I ultimately decided to accept the early phase director position, moving my family away from Greater Boston, where we had lived for about 15 years, to the upper valley of New Hampshire. And while at Dartmouth, I was part of exciting projects, including writing and overseeing an NCI grant called Catch Up, which was geared towards improving access to early phase clinical trials for rural patients. I opened numerous sponsor-initiated immunotherapy and targeted therapy, early phase trials. Just to say a little bit about Dartmouth’s Cancer Center - I think they also benefit from tremendous collaboration, this time across Dartmouth College, the Geisel School of Medicine, the School of Public Health. I think they provide really excellent care to their cancer patients. And I was extremely proud to be part of that culture in the GI Group, which was much smaller than the one at MGH, but also an incredibly dedicated group of multidisciplinary colleagues who work tirelessly to care for their patients.

But nonetheless, less than six months into that new position, the COVID pandemic started, and that introduced some significant and new challenges on the clinical trials side in terms of staffing, infrastructure, those kinds of things. In that context, I made a decision to return to NIBR, refocus on clinical research, and hope to harness my background in running clinical trials in both settings, both academic and industry, as well as the resources and pipeline of Novartis to really maximize my impact on drug development. So for me, it was a question of where can I have the maximum impact at this crazy time, difficult time. I saw that my best option was to return to industry to work on studies to try to develop new therapies. Broadly speaking, my role as a senior clinical program leader in the translational and clinical oncology group at NIBR is to design, write, conduct, and analyze innovative clinical trials of early phase therapeutics.

Dr. Jeremy Cetnar: Wow, that's fascinating, very, very interesting. A lot of stress. You should definitely be buying lots of presents for your family for moving them all over the place.

This concludes part one of our interview with Drs. Abrey and Faris. Thank you so much for sharing your inspiring career stories. And thank you to all our listeners for tuning into this episode of the ASCO Education Cancer Topics podcast.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Partners in cancer care – who are advanced practice providers? In the first episode of ASCO Education’s podcast series on Advanced Practice Providers (APPs), co-hosts Todd Pickard (MD Anderson Cancer Center) and Dr. Stephanie Williams (Northwestern University Feinberg School of Medicine), along with guest speaker, Wendy Vogel (Harborside/APSHO), discuss who advanced practice providers are, share an overview of what they do, and why they are important to oncology care teams. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org

TRANSCRIPT

Todd Pickard: Hello everyone, and welcome to the ASCO Education Podcast, episode number one of the 'Advanced Practice Providers' series, 'APPs 101: What and Who Are Advanced Practice Providers?'

I'd like to introduce my co-host for this series, Dr. Stephanie Williams. My name is Todd Pickard. I'm an advanced practice provider, I'm a PA, and I work at MD Anderson Cancer Center in Houston, Texas. I'm also the Executive Director of Advanced Practice and my clinical practice is in urology. Dr. Williams, how about you introduce yourself?

Dr. Stephanie Williams: Thanks, Todd, and thanks for this opportunity to present this incredibly important topic. I am currently retired from clinical practice. I had been in practice for over 35 years both in an academic setting, a private practice, and more recently in a large institutional, multi-specialty institutional type of practice. My primary clinical care has been in stem cell transplants and cellular therapy. And we have used APPs, both PAs and NPs for a couple of decades in our particular area.

Todd Pickard: Great, thanks for that. I'd also like to introduce you to our guest panelist today, Wendy Vogel from Harborside, who is a certified oncology nurse practitioner with over 20 years of clinical experience and expertise.

We're excited to be chatting with Wendy today about the basics of advanced practice providers and who they are. This will be an introduction for the rest of the upcoming episodes of APP Podcasts. Wendy, why don't you tell us a little bit about yourself and your practice.

Wendy Vogel: Thanks, Todd. It is a pleasure to be here. I appreciate you asking me to talk. I am an oncology nurse practitioner as you said. I do a high-risk cancer clinic and do that a couple of days a month. And I am also the executive director of APSHO, the Advanced Practitioner Society for Hematology and Oncology.

Todd Pickard: Great! We're looking forward to a robust and informative discussion today between the three of us. So, I’d like to get started with some basics. Wendy, do you want to always start with a definition of advanced practice registered nurse?

Wendy Vogel: Okay, great question! So, APRNs or advanced practice registered nurse include nurse practitioners. It can include clinical nurse specialists, nurse anesthetists, and nurse midwives.

And generally, APRNs hold at least a master's degree in addition to some initial nursing education as a registered nurse. Some APRNs have doctorates like the DNP or Doctorate of Nursing Practice. But licensure for APRNs generally falls under the State Board of Nursing.

So, we're also required to have a board certification, usually as some sort of generalist as in family medicine, pediatrics, geriatrics, women or acute care. But in oncology, many APRNs also carry oncology certification.

Todd Pickard: Excellent! Thanks for that. I'll go ahead and add to the conversation by defining physician assistant. So, physician assistants are individuals who are trained in the medical model and are licensed to practice medicine in team-based settings with physicians.

Very much like advanced practice registered nurses, we come from a variety of backgrounds, and our education model is really focused on thinking about the patient the same way that our physician colleagues do.

We're trained in really taking a very broad look at patient care, and our education as a generalist model. PAs are certified by the National Commission on Certification of Physician Assistants, which is one national certification that includes all of the content areas in which we will practice.

Dr. Stephanie Williams: For those out there who don't know, what are the differences between a physician assistant and an APRN? Or are there differences in practical terms, in terms of how we practice our field?

Wendy Vogel: That is a great question, Stephanie, thanks for asking that. We function very much the same. The main difference is just in our educational background, where nurse practitioners come from a nursing background and the nursing model of care, and I'll let Todd speak to where PAs come from, but basically, our functions are very much the same.

Todd Pickard: I very much agree. If you are in a clinical setting, and for some reason, Wendy or myself failed to identify who we are, you wouldn't really detect a distinction between the care either of us provide, because we are there in that provider setting and we're really there to assess the conditions you have like appropriate history in physical examination, think through differential diagnosis or a workup, create a diagnosis and then a therapeutic plan and also to educate you as the patient or to make an appropriate referral.

So, really, when APPs, PAs, and NPs work side by side, there's really not a lot of difference in what people detect in what we're doing and how we're doing things. But there are some educational differences, which are pretty minimal.

So, for example, one small difference is that PAs include surgical assisting as part of our core fundamental training, and our APRN colleagues generally don't. So, in my institution, we do have nurse practitioners that go to the OR and do assisting, but in order to get there, they did a Registered Nursing First Assist Program, it's a certification. So, they learn those fundamentals of sterile technique and surgical technique. So, in essence, there's really not a whole lot of difference.

Dr. Stephanie Williams: I think what I was struck with about the difference was the history and the fact that PAs came out of the Mobile Army Surgical Hospitals. To me, that was just fascinating. I think Duke was the first graduating class.

Wendy Vogel: You know, the role of the APRN has really changed drastically. It began in the 1960s, because there were not enough primary care providers, particularly for children in the urban and rural areas of the US, and the first nurse practitioner program was in 1965, at the University of Colorado. So, gosh! Have we come a long way since then, both the PA role or the NP role. When was the first PA role, Todd, when was that?

Todd Pickard: We were born at the same time in 1965, we just happened to be at Duke University and y'all were in Colorado. You know, I think that the most important thing about working with advanced practice providers is that you look to work with somebody who has the competencies, the skills, interpersonal communication, and the pertinent experiences because honestly, I know fantastic APRNs, I know fantastic PAs, and I know some of either profession that really just don't quite fit a particular role.

And so, there is some kind of mythology around PAs and APRNs, and who should work where, like PAs should be more procedural and more in surgery, and nurse practitioners should be more in medicine in the hospital. And really, there's nothing in our training that defines that per se, I think it's just a natural progression of we're over 50 now, so our professions are middle-aged. And we're starting to really have our feet underneath us. And I think people who've worked with PAs or NPs really understand, it's about the individuals and what they bring to the table.

It's not really about the initials behind our names, because honestly, that's not what makes me do good work. It's not that I have the PA or NP behind my name. It's my commitment and dedication to my patients and supporting the rest of my team.

Wendy Vogel: I think Stephanie, that's why we use the term advanced practitioner, advanced practitioner provider because it doesn't single out either one of us because we are functioning in the same manner. It's easier to say than say, PAs and NPs, so we just say, APPs.

Todd Pickard: Yeah. And it doesn't mean that we don't identify as individual professions, because we do. I mean, I'm a PA, but I am part of a larger group. And part of that larger group is identifying as advanced practice provider because, at my institution, there are over 1000 of us, and we are a community of providers, and that's the way that we sense how we function within the team and within the institution. And so, it's really about that kind of joint interprofessional work.

And speaking of work, Wendy, tell us a little bit about what are typical things that advanced practice providers do?

Wendy Vogel: It might be easier to say what we don't do. I’ve got a list. Do you want to hear my list?

Todd Pickard: Yeah, lay it on us.

Wendy Vogel: Okay, here you go. Staff and peer education, survivorship care, palliative care, hospice care, pain management, acute care clinics, case management, research, cancer patient navigator, genetic services, lung nodule clinics, quality improvement. We're writers, we're authors, we’re speakers, we mentor, and we do all kinds of public education.

We can have clinical roles with faculty and professional organizations. We do procedures like bone marrows, paracentesis and suturing, and all that kind of stuff. We do a lot with all the other things like diagnosing, all the things you said earlier, diagnosing, ordering lab tests, ordering chemotherapy, etc.

Todd Pickard: I think what's amazing about advanced practice providers is the flexibility we have to fill in gaps on teams or in service lines, no matter what that is. You know, I like to say and I'm sure everybody thinks that they originated this, but I feel that advanced practice providers are the stem cells of the team because we differentiate into whatever is necessary.

At my institution, we recently had a gap in how our peer-to-peers were handled. Many times, you order an MRI or a PET scan, and the payer will, the day of or the day before, say, ‘Oh, I need to talk to somebody.’ How that gets to the clinical team and when the clinical team has time to do that, it’s really hard to coordinate.

So, we created a team of advanced practice providers who spend one day a week doing the regular clinical roles, but then the rest of the time, they are dedicated to facilitating these peer-to-peer conversations. They have over a 95% success rate. And the payers, the medical directors, have actually gotten to know them. And so, they'll say, ‘Hey, I want to talk to so and so because she's fantastic and knows our program, and it's really easy to have these conversations.’

And so, patients are taken care of and these business needs are taken care of, and then our clinical teams can really focus on what they're there for, which is to see those patients in and out every day.

So, that's the power of advanced practice, its flexibility, filling in gaps; we can bend and morph to whatever we need to do because one of the things that’s in our DNA is part of PA and advanced practice RN, we're here to serve, we're problem solvers or doers, too. When we see something, we pick it up and take care of it. That's just in our nature.

Stephanie, tell us a little bit about your experience working with an advanced practice provider, is what Wendy and I are saying ringing true, or what's your experience?

Dr. Stephanie Williams: Oh, absolutely! As I look back on my career, I'm not certain that I could have accomplished much of what I did, without my team members and advanced practice providers, both PAs and NPs.

We also use them in an inpatient setting. And I can’t remember Wendy mentioned that to take care of our stem cell transplant patients, because of residency, our requirements were removed from our services, and they became the go-to’s to taking care of the patients.

It actually improved the continuity of care that the patients received because they would see the same person throughout their 4 to 6-week course in the hospital, they also helped run our graft versus host clinics.

I hate that term physician extender because they're really part of our health care team. We are all healthcare professionals working together, as Todd beautifully mentioned, for a common goal to help that patient who's right there in front of us. And not only that, from a kind of selfish viewpoint, they help with a lot of the work, doing the notes, so that we could all split up the work and all get out on time and all have at least some work-life balance.

And I think that's a very important part of any team is that we can each find our own work-life balance within the team. So, I feel that they're a very important part of the oncology healthcare team. And I would recommend that everyone who wants to take care of patients, incorporate them into their team.

Wendy Vogel: Can I say something right here that you mentioned that I'm so glad you did, which was physician extender. That is a dirty, dirty word in the AP world now because we don't know what part we're extending, that is not what we do.

And also, we don't want to be called mid-level providers because – you can't see but I'm pointing from my chest to my belly - I don't treat just the mid-level, nor do I treat in mid-level care. I give superior care. I just give different care. And I give care on a team.

And the last one is a non-physician provider. That is also a no-no because I wouldn't describe a teacher as a non-fireman, nor would I describe you, Stephanie, as a non-nurse practitioner. So, I don't want to be a non-physician provider either.

Todd Pickard: It is an interesting phenomenon that even after 50 years, so many different places, whether it's the Joint Commission, or the Centers for Medicaid and Medicare Services, whether it's a state legislator, an individual state, an individual institution like Memorial Sloan Kettering or an MD Anderson or a Moffitt, everybody comes up with these different terms. And it's so interesting to me.

Physicians are either physicians, doctor, sometimes they're called providers. But as a PA, who's an advanced practice provider, those are the two things that resonate with me: either call me PA or call me advanced practice provider.

All these other names seem to just be, it’s an alphabet soup, and it really doesn't carry any meaning because some places just come up with these strange terms. And I agree, physician extenders has been the one that always has amused me the most because it reminds me of hamburger helper.

Am I some noodles that you add to the main meal so that you can extend that meal out and serve more people? I think what Wendy and I are really trying to get at, I know this has been with a little bit tongue in cheek, but we are part of the team. We work with physicians in a collaborative team-based setting, just like we all work with social workers and schedulers and business people and pharmacists and physical therapists.

I think the main message here is that oncology care and taking care of patients with cancer is a team effort because it is a ginormous lift. It's a ginormous responsibility and our patients deserve a full team that works collaboratively and works well and has them in our focus like a laser, and I know that's what APPs do.

Dr. Stephanie Williams: I think that's well said, Todd. What I enjoyed in the clinic in particular, was sitting down and discussing patient issues and problems with my APPs. And we worked together to try to figure out how to resolve issues that would come up. But we also learned from each other, you're never too old to learn something from people. I just felt the interaction, the interpersonal interaction was also very satisfying as well.

Wendy Vogel: I think that the job satisfaction that comes from being a team player and working together is so much higher and that we're going to experience so much less burnout when we're working together each to the fullest scope of our practice.

Todd Pickard: So, Wendy, one of the things that people ask a lot about when they work with advanced practice providers is, ‘Well, gosh! How do I know that they have this training or this experience or this competency?’ And then the question arises about certification.

So, let's talk a little bit about certification and what that means and what it doesn't mean. So, tell me, are advanced practice providers certified? And are they required to get a variety of certifications throughout their career? Let's talk a little bit about that. Why don't you open up the dialog.

Wendy Vogel: Okay, happy to! So, to be able to practice in the United States, I have to have a board certification. And it can vary from state to state, but generally, it has to be either a family nurse practitioner certification, acute care nurse practitioner, geriatrics, women's health, pediatrics, there are about five. So, you are generally certified as one of those.

There are a few oncology certifications across the US, board certifications to be able to practice at the state level, but not all states recognize those. So, most of us are educated in a more generalist area, have that certification as a generalist, and then can go on to get an additional certification.

So, many nurse practitioners in oncology will also get an advanced oncology nurse practitioner certification. So, that's a little bit different. It's not required to practice. But it does give people a sense that, ‘Hey, she really knows what she's doing in oncology.’

Todd Pickard: The PA profession has one national certification, and it is a generalist certification. It's probably similar to USMLE, where you really are thinking about medicine in its entirety. So, whether that be cardiology, orthopedics, family medicine, internal medicine, geriatric, psychiatry, or ophthalmology. I mean it's everything – and oncology is included as well. And that certification really is the entree into getting licensure within the states.

It's basically that last examination that you take before you can get that license just to make sure that you have the basic knowledge and fundamentals to practice. And so, I always respond to this kind of question about certification, I say, ‘Well, is it really the experience and the onboarding and the training that one gets on the job and the mentoring and the coaching that one gets from our physician colleagues and other advanced practice providers that brings them the most value? Or is it going through an examination, where basically you're responding to a certain amount of information, and you either pass it or you don't, and you can get a certification?

I'm not saying there's not value in that, but I'm also making the argument that if you are working with your APPs well, and they have good mentors, and they have good resources, they're going to be excellent clinicians. And having an additional certification may or may not make some huge difference.

Many times I see people use it as a differentiator for privileges or something. It's really an external kind of a pressure or a desire, it doesn't really have anything to do with patient care. I mean, Wendy what has your experience been around that need for additional certification?

Wendy Vogel: I've seen it used in practices to merit bonuses, which isn't really fair when a PA does not have that opportunity to have a specialty certification per se. So, I've seen it used negatively. I'm a great believer that any additional education that you can get is beneficial.

However, I will say just like you said, if you are getting your mentoring, you have good practice, you're doing continuing education, then it's essentially the same thing. To be able to have an oncology certification, I had to practice for a year and I had to take a test that really measured what I should know after one year. And that's what a certification was for that. Is it beneficial, do I want it? Yeah, I want it. Do I have to have it to practice? No.

Todd Pickard: I think that is a great way to segue to having a brief conversation about how you bring APPs in? I mean, just at a very high level, should people expect for an APP to come in right out of school and just hit the ground running without any additional investment?

And I could ask the same question about a resident or a fellow who completes an oncology training program. Do you just put those people to work? Maybe that's an older model, and now really mentorship and that additional facilitated work is, I think, critical.

So, I'll start with Stephanie, tell us a little bit about what’s your experience been with advanced practice providers, or even young physicians as they enter the workforce? What's the role of onboarding or mentoring program?

Dr. Stephanie Williams: So, it's important. We had a set process for bringing on our new APPs and it pretty much followed the guidelines from the American Society of Cellular Transplantation in terms of the knowledge base that they would need to know.

So, it was a checklist. And we would also have them do modules from ASCO’s oncology modules, as well looking at primarily hematologic malignancies, so they could get a background there. And then we would slowly bring them on board.

Usually, they would start taking care of autologous patients, a certain subset of patients, and then move on to the more complicated patients. We did the same clinic, whether they were clinic or inpatient APPs. So, it took us about three to four months to onboard our APPs.

In terms of a fellow becoming an attending physician, I'd like to say that there's specific onboarding there. Unfortunately, sometimes they're just, ‘Okay, these are your clinic days, this is when you start.’ I mean, you’re right Todd, we really need to work more on onboarding people. So, that one, they like their jobs, they're not frustrated, and they want to stay and continue to work in this field. I see many times after two or three years, if they're not onboarded properly, they just get frustrated and want to move on to a different area.

Wendy Vogel: We know that most of the advanced practitioners who come into oncology don't have an oncology background, PA or NP. They just don't, and we don't get a lot of that in school.

So, it takes months, it would probably, I dare say, take 12 months of full-time practice to feel comfortable in the role. But how many practices particularly in the area that I've practiced in you get this AP, and you throw them in there, and in four weeks, you're supposed to be seeing patients.

How can you make those decisions when you haven't been properly mentored? So, absolutely important to have a long onboarding time till that APP feels comfortable.

Todd Pickard: Yeah, I think that it is critically important that we set up all of our team members for success, whether they be physicians, or PAs, or nurse practitioners or nurses, or pharmacists, and I think that is the role of onboarding and mentoring, having people who will invest time and energy in what you're trying to accomplish. You know, Wendy is spot on.

Advanced practice providers have specific types of training within their educational program. As a PA, my focus in oncology was to screen for and detect it. So, to understand when a patient presents with a mass or some symptoms that may make you think that, oh gosh, maybe they've got acute leukemia or something else and looking at those white counts and, and understanding.

But that transition from identifying and screening and diagnosing cancers is very different than how do you care for specific types of tumors and specific disciplines, whether it be radiation oncology, surgical oncology, medical oncology, cancer prevention. There's a lot that folks need to be brought up to speed about the standards of what do we do in this practice and how do we care for these types of cancers? And that really is the role for the onboarding and mentoring.

You know, you may be lucky, you might get an advanced practice provider who used to work at a big academic cancer center in the same field, whether it be breast medical oncology or GI, and yeah, that's a much easier task. That person probably really needs mentoring about the local culture, how we get things done, what are the resources, and which hospitals do we refer to.

But for the most part, working with an advanced practice provider means that you've got a PA or an NP, who has a strong foundation in medical practice. They know how to care for patients, they know how to diagnose, they know how to do assessments, they know how to critically think, they know how to find resources, and they know how to educate. But they may not know how long does a robotic radical prostatectomy patient going to be in the hospital? And how long does it take to recover and what are some of the things you need to be considering in their discharge and their postoperative period?

That is very detailed information about the practice and the local resources. Every advanced practice provider is going to need to have that kind of details shared with them through mentorship, and a lot of it is just how do we team with each other? What are the roles and responsibilities? Who does what? How do we have backup behaviors to cover folks?

So, a lot of this really is just deciding, ‘Okay, we've got a team. Who's doing what? How do they work together and how do we back each other up?’ Because at the end of the day, it's all about the team supporting each other and that's what I love about advanced practice.

Wendy Vogel: Very well said, yes. I had an AP student yesterday in clinic, who told me - I was asking about her education in oncology and what she got - and she said, ‘Well, so for lymphoma, we treat with R-CHOP. So, a student, of course, raised their hand and said, ‘What's R-CHOP? She’s like, ‘Well, the letters don't really line up with what the names of the drugs are, so, just remember R-CHOP for the boards.’

So there you go. That's kind of what a lot of our education was like specific to oncology. And again, I'm a little tongue in cheek there also. But Todd, are you going to tell everybody about the ASCO Onboarding tool that's now available?

Todd Pickard: Absolutely! ASCO has done a really great job of trying to explore what advanced practice is, and how teams work together. All of us are part of the ASCO Advanced Practice Task Force.

One of the things we did was really to look at what are some best practices around onboarding, orientation, scope of practice, and team-based cancer care, and we created a resource that is available on the ASCO website, and I think that it is a great place to start, particularly for practices, physicians, or other hospital systems that don't have a lot of experience with advanced practice.

It’s a great reference, it talks about the difference between orientation and onboarding. It gives you examples of what those look like. It talks about what are the competencies and competency-based examinations. So, how you assess people as they're going through the onboarding period. It has tons of references, because ASCO has done a lot of great research in this field, around collaborative practice and how patients experience it, and how folks work on teams, and what do those outcomes look like.

So, I highly recommend it. Wendy, thank you for bringing that up. It's almost like you knew to suggest that.

Well, this has been a really, really good conversation. I'm wondering, what are some of those pearls of wisdom that we could all provide to the folks listening?

So, Stephanie, what are some of your observations that, you know, maybe we haven't just thought about, in your experience working as a physician with advanced practice providers?

Dr. Stephanie Williams: One, it's important to integrate them into the team, and, as Wendy mentioned, to mentor them – mentor anybody correctly, in order for them to feel that they're contributing the most that they can to the care of the patient.

I think there are other issues that we'll get into later and in different podcasts that come up that make physicians hesitant to have nurse practitioners or physician assistants. Some of those are financial, and I think we'll discuss those at a later time. But really, that shouldn't keep you from employing these particular individuals for your team. It really is a very rewarding type of practice to have. You're not alone. You're collaborating with other providers. I think it's just one of the great things that we do in oncology.

Todd Pickard: I wanted to share a moment as a PA, advanced practice provider, when I most felt grateful for the opportunity to work as an advanced practice provider. My clinical practice has been in urology for the past 24 years for the main part. I've had a few little other experiences, but mainly urology, and I'll never forget a patient who was a middle-aged lady who had been working with transitional cell bladder cancer. It was superficial. So, the treatment for that is BCG and repeat cystoscopies and surveillance. And I walked into the room and I was going to give her BCG installation, and she was so angry. I wanted to know what was going on. I thought, gosh, should I make her wait too long or something else? So, I asked her, I said, ‘How are you doing today? You seem to be not feeling well.’ And she said, ‘Well, I'm just so tired of this. I don't understand why y'all don’t just fix me. Why don't y'all just get this right? Why do I have to keep coming back?’

And as I looked at the medical record, this patient had had superficial bladder cancer for years. And I thought, ‘Has nobody ever really kind of sat down and mapped this out for her?’ So, I asked her to get off the examining table, and I pulled the little paper forward, so I had someplace to draw.

And I drew a big square and I said, ‘This is a field, just think of any big field anywhere near you. And it's full of weeds.’ And I drew some weeds on there. And I said, ‘You know we can pull them out and we can pluck them, and we can put some weed killer in that field,’ I said, ‘do you think that if you come back in three months and there will be any weeds on that field?’ She said, ‘Of course, there will be. There are always weeds because they always come back. It's very hard to get rid of.’ And I said, ‘Well, this field is your bladder. And the type of cancer you have are like these weeds, and we have to constantly look for them, remove them, and then put this treatment down, that's why you come.’

And she started crying. And I thought, ‘Well, I've blown it.’ Because this was in the first couple of years of working as a PA in urology. And I said, ‘I'm so sorry. I really apologize.’ She said, ‘Don't you dare apologize to me.’ I said, ‘Man, I've really blown it now.’ She said, ‘Todd, I've had this disease now for this many years. This is the first time I've ever fully understood what's happening to me. I am so grateful to you.’

I will never forget this patient. I will never forget this experience. And I'm extraordinarily proud. It's not because I'm the smartest person in the world. I just happened to investigate, take the time, and I drew it out. I explained it in the simplest of terms because I wanted her to understand. And then whenever she came back, she always wanted to see me. So, it was great. I really developed a really lovely relationship with this patient. It was very rewarding.

Wendy, can you think of a story that you have about an advanced practice provider that makes you particularly happy or where some big lesson was learned?

Wendy Vogel: Yeah. I love your analogy. That's a great analogy. I think that part of what I love to do is similar to you, Todd, in that I like to make things understandable because I consider myself an East Tennessee southern simple person, I want to understand things in the language that I understand. So, I like using a language that a patient understands. I think if I was to say about some of the proudest things, or what makes me so excited about oncology is what we've seen in our lifetime.

So, Todd, you and I practice probably about the same number of years and we could say we remember when Zofran came out, and how that revolutionized chemotherapy nausea and vomiting – Stephanie's nodding here, too. We all know that.

And then wow! When we found out that we could maybe cure CML, that we're having patients live normal lives in our lifetime, that we've seen non-small cell lung cancer patients living past a year that are metastatic – Oh my gosh! This is such an exciting field and we learn something every day. There’s new drugs, there’s new treatments, there's new hope, every single day, and that's what makes me proud to be a part of that.

Todd Pickard: Yeah, I think that oncology and the work that we get to do as a team is so incredibly rewarding. It's challenging, and we have losses, but we also have wins, and those wins are amazing, and transformative, not only for us but for our patients.

So, some final pearls of wisdom. I'll share and then Wendy, I'll turn it over to you. One thing that I really want to convey to folks is to know about the state that you work in and what are the practice acts for advanced practice providers. Because, unlike our physician colleagues who have a very standard scope of practice across the country, advanced practice can drastically change from state to state and place to place even from institution to institution.

So, be aware of that, so that you can build your team-based practice around what are the constraints, what is the scope of practice, and you can comply with that. It just takes a little bit of pre-work at the beginning. It's not daunting. These things are written in English. We're all smart folks. We can understand them and we can build our teams in the right way.

So, just keep that in the back of their mind. It is not an obstacle. It's the instruction manual of how to build your team. That's all it is if you just think about it simplistically like that. So, Wendy, what's one or two things that you would say you really want our listeners to understand about advanced practice?

Wendy Vogel: I loved what you said, Todd, both of our PA Associations and our Nurse Practitioner Associations have that information online, so it's very easy to find. But I think I would say, don't be afraid to stand up for yourself as an advanced practitioner or as a physician who wants an advanced practitioner. Don't be afraid to stand up for yourself and your scope of practice, know what you can do, know what you can't do, know and demand the respect that you deserve. I would always say that just don't forget that ‘no’ is the first step to a ‘yes,’ and keep on trying.

Todd Pickard: I think we can all appreciate that sentiment, whether we be a PA an NP or a physician. Many times, we're advocating for our patients within our systems or our practices or with our payers or insurance providers. And yeah, sometimes you start from a place of ‘no’ and then you work until you get to that ‘yes’, or at least a compromise, if you can get to a ’maybe,’ that's a good place too. Stephanie, any particular last words of wisdom or wrap us up with our conclusion?

Dr. Stephanie Williams: Thanks, Todd and Wendy, for sharing your insights today. It’s always a pleasure chatting with you both. Stay tuned for upcoming episodes where we plan to dig deeper into the various types of APPs, how they are trained, what a day in the life looks like for an oncology APP, their scope of practice, and the importance of team-based care, especially in oncology. Thank you to the listeners as well.

Until next time.

Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org.

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Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product , service, organization, activity or therapy should not be construed as an ASCO endorsement.

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In part one of this ASCO Education Podcast episode, director of the U.S. Food and Drug Administration's Oncology Center of Excellence Dr. Richard Pazdur talks with hosts Dr. David Johnson and Dr. Patrick Loehrer about his upbringing in Indiana, his family, and his circuitous route to oncology. If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Pat Loehrer: Hi, I’m Pat Loehrer. I'm the director of the Center of Global Oncology and Health Equity at Indiana University.

Dr. David Johnson: I'm Dave Johnson at UT Southwestern in Dallas, Texas. Pat, great to be back with another episode of Oncology, Etc, an ASCO educational podcast. We have a very special guest today, Dr. Richard Pazdur, from the FDA Oncology Center of Excellence.

I’m really looking forward to this conversation.

Dr. Pat Loehrer: This will be terrific.

Dr. David Johnson: Yeah. You were telling me before we got started about a little event that occurred this week, maybe you want to elaborate on that for us.

Dr. Pat Loehrer: Yeah, we always start out this by talking about books, and one of the books I'm drawn to today is a book called, The Emperor of All Maladies, which was written by Dr. Mukherjee several years ago.

I want to read a little bit from this because it has pertinence. This is about a guy named John Cleveland. Dr. Mukherjee writes, he goes, ‘In 1973 Cleveland was a 22-year-old veterinary student in Indiana. In August that year, two months after his marriage, he discovered a rapidly enlarging lump in his right testis. He was whisked off to the operating room for surgery and returned with a scar and he was diagnosed with metastatic testis cancer.

This was right around the time that Larry Einhorn came to Indiana University where he was treated with a three-drug cocktail of actinomycin-D, bleomycin, and oncovin ABO. And then he had a brief remission progressing and was treated with mithramycin mithrymicin.

And then in October of 1974, he once again developed progressive disease, and Larry approached him about a new cocktail with the drug cisplatin, that had never been used before in combination, and Larry's thought was to put it together with another couple of drugs.”

So, I'll just finish reading this. “In October 7, 1974, Cleveland took the gamble, he enrolled as patient zero for BVP, an acronym for the new regimen containing Bleomycin, Vinblastine and cisplatin. 10 days later, he returned for routine scans and the tumors in his lungs had vanished. He was ecstatic and mystified. He called his wife from the hospital phone. I can't remember what he said, but I told her the results.

So, John was the first one cured of testis cancer. Back then it was a 5% cure rate. Today, it's 95%. He is really the hero of heroes. Last week, at this time, John had asked me to come to his hospital room because he was diagnosed with metastatic cancer of a different type. He knew that this was basically the final hours of it. And so he wanted to say goodbye to me, and it was the most touching reunion I had.

Two days ago, John passed away. So, my thoughts are with him, especially his family. But also, when we think about heroes, John was one of them, and if it wasn't for him, and his first treatment, Larry might not have gone on and treated other patients with this regimen.

This drug cisplatin was experimental back then it caused a lot of nausea and vomiting and didn't work in many tumors, but this was a drug that was really highlighted and approved for the treatment of bladder cancer so Hubert Humphrey could get treated, and then in testis cancer, and it's really one the really success stories of all success stories in terms of oncology, and it started out with this experimental drug from the NCI that was approved by the FDA.”

So, this leads us to our guest today, Rick Pazdur who I've known for many years. He grew up in Calumet City, Illinois, which is famous as the home of the Blues Brothers and Rick Pazdur.

He got his bachelor’s degree from Northwestern, his medical degree from Loyola Stritch Medicine, and then did his hematology-oncology fellowship, initially his oncology fellowship at Rush Presbyterian St. Luke's, where I first met Rick, and then later finished his Heme-Onc fellowship at the University of Chicago.

From there, he went to Wayne State, served on the faculty there for about five or six years, and then joined the faculty at MD Anderson. He was there from 1988 to 1999. Then, we'd like to hear about this, but for some reason, it got in his head that he wanted to go to the FDA and so he moved to the FDA where he was Director of the Division of Oncology Drug Products, from 1999 to 2005, when they created the Office of Hematology Oncology Products, and he became the Director of this.

More recently, he's been made the director of the FDA's Oncology Center of Excellence. He still serves as the acting director for this OHOP. Rick is an extraordinary individual. He's been awarded a number of awards. From ASCO, he got the Service Recognition Award and the Public Service Award in 2013. And the AACR also awarded him the Public Service Award in 2015.

He's received numerous awards and he is probably one of the most respected oncologists that I know in this society. It's such a great pleasure to have you here today, Rick.

Dr. Richard Pazdur: My pleasure, Pat. My pleasure entirely. I look forward to the conversation.

Dr. David Johnson: Pat, you left out one award. He got so many awards that you can't list them all, but I was impressed that he got this award for the Massachusetts General Hospital Cancer Center's – The 100 list.

Dr. Pat Loehrer: Yeah, we made the cut-off.

Dr. David Johnson: I have no idea what that is.

Dr. Pat Loehrer: We were on the 1001 list. We made that one. The only thing I want to throw into is that when I first met Rick, when I was a resident or an intern, I think, he was on the service with Phil Bonomi, who is very important for me for my thymoma research, but there was an oncology nurse on the service, Mary Lind, who was a terrific oncology nurse as they all are. But it turned out there was more chemistry that went on. So, Rick ended up marrying Mary, and I'm sure he'll tell some stories. We'll come back to that in a little bit, too.

Dr. David Johnson: Yeah, this is really exciting. So, let's get started. Rick, maybe you could tell us a little bit about your background and what got you into medicine in the early part of your career.

Dr. Richard Pazdur: I had an interesting story. Pat had mentioned Calumet City home as a Blues Brothers. That was the orphanage in the movie. It was located in Calumet City. But what you don't know about Calumet City is that the real kind of nickname for Calumet City in the 50s 60s 40s was 'Sin City'.

It has the honor of having the greatest number of liquor licenses in the United States. And in Calumet City, which was on the border of Hammond, Indiana, and Calumet City, they're kind of Sister Cities. They're one in Illinois, Calumet City. And Hammond is in Indiana, obviously, there was this strip, and it was called ‘The Strip’ and it had all of these bars and floor shows with Sally Rand and gambling.

If you walk down there, which I never did as a kid, but drove down there with my father some time just traversing the city, those lights were so bright, it was just like Las Vegas, basically.

So, you had that Strip and that went on for maybe three, four, or five blocks. And then you have the rest of the city that I grew up in, which was primarily a Polish Catholic city, which I am kind of a representative of being 100% polish. There were scattered bars throughout the city.

In fact, my fondest memory is sleeping in bed at 3 o'clock in the morning or 2 o'clock in the morning, awakening to people running out of a bar, which was 50 feet or 100 feet from my bedroom window. They were screaming and yelling and cursing and everything and throwing beer bottles at each other. And in those days, obviously, as you remember, in the 60s, there was no air conditioning. So, the bar was called The Tropical Inn. Let me tell you this, there was nothing tropical about it and there was nothing 'in' about it.

Dr. David Johnson: That background might have driven….

Dr. Richard Pazdur: That was not what I would call a highbrow area, but I enjoyed it. It was a fabulous childhood that I had. Most people don't know this. So, I will share this with you because it really had an indelible mark on my life and something that really transformed my childhood and my high school years and my college years, and my medical school years.

When I was about in seventh or eighth grade, my father who was basically a blue-collar factory worker, developed glaucoma, and he went blind at a very early age. And that threw the family into not only emotional turmoil but also economic turmoil.

I survived basically by getting Social Security dependent income and had to work at a very early age. I started as a dishwasher. My mother lied about my age so I could start working at a crummy restaurant in Calumet City as a dishwasher and I worked throughout school, but that experience really made me grow up really fast if I could say so.

You didn't have a childhood, you had to be responsible because there was really no security blanket to fall back on. Although my parents didn't have a lot of money, they really had very good emotional support for me and both my father and my mother came from very large, Polish families.

My mother had nine children in her family. She was right in the middle. And so, I had many cousins and many aunts and uncles and my father had seven children in his family and he was the oldest boy.

So, there was a lot of support there, but obviously not a lot of financial support. So, it really made me grow up relatively quickly and really come to some of life's lessons, relatively fast like discrimination against disabled people, which I will always remember.

When I was a boy, I remember going with my father walking and obviously he had a white cane, but walking down the street, people would actually cross the street to avoid us. They just didn't want to confront that anxiety. I don't know if it was discrimination or if they just felt uncomfortable dealing with it. When you go to a restaurant, people raise their voices, like the man was mentally impaired and that wasn't the case.

Dr. Pat Loehrer: I’m sorry to interrupt you just for a second because I read this somewhere and I think it's important to throw in. So, you graduated from high school in three years?

Dr. Richard Pazdur: Yes, that’s what I was gonna say. I graduated and I worked during that time also. These jobs were not like jobs that kids have now as consultants or internships, these were like real jobs as a janitor, a gardener, or a packer in a grocery store.

You had to do it and you had to compartmentalize your life to get things done, basically. But you were driven to do things and I'm thankful for that experience really. I even use it now when I'm facing turmoil in my life. I look back at that time and say to myself, Rick, if you did it then as a 12-year-old kid, a 14-year-old kid, you could do anything.

So, it really fostered a sense of responsibility, self-awareness, and the need to do things for yourself and get going on yourself. because nobody's going to help you in a sense. I’m very grateful for that.

Dr. David Johnson: Rick, at what point did you decide to become a physician? How did that experience really drive you into that field?

Dr. Richard Pazdur: Well, I spent a great deal of time in the lobby of the University of Chicago hospital with my father. I was the primary caregiver and went with him to his doctor's appointments. I can't tell you the number of hours I spent in the lobby of that hospital.

I was very interested in science. I was very interested in really helping people because of that background. I really had a great deal of clarity, though. I remember, when I was maybe a freshman or sophomore in high school, I wrote for the Northwestern Medical School catalog, because I thought I would be going to Northwestern undergraduate, I already decided in my own mind that that's where I wanted to go.

I just got their medical school catalog and I was thumbing through it, and I remember this vividly sitting on my bedroom floor next to the window that was 50 feet away from the bar, basically, and was looking through the medical school catalog and seeing all these names of this doctor, head of neurology, assistant professor, associate professor. I said, “Hell, if I'm going to be a doctor, I want to be one of these people. I want to be the best doctor. I want to be teaching the physician here and doing research.”

So, unlike most kids today that have to find themselves, like, ‘I'm going to take 8 years to complete college or something like that and take a year off to find myself.’ I had to be very, very focused on what I wanted to do.

So, I really worked very hard during it through time. I don't regret it, as I say. I went to Northwestern undergraduate and had a fantastic experience there. I graduated in three years as I mentioned. I had a special interest there that most people don't know about. The people at the FDA know about it. I did these pre-med courses but I had a really special interest in the field of sociology, and actually was toying with the idea if I didn't get into medical school to pursue a Ph.D. in Sociology and become an academic sociologist. If you remember and both of you are of this age.

Dr. Pat Loehrer: David is, not me.

Dr. Richard Pazdur: Okay. David might know of the Vietnam War. This was right around the time of Kent State and closing down the schools, I'm sure you remember that, for the colleges, etc.

Nobody went into business or anything like that. It was a sociology, psychology, and anthropology type of things people were interested in. My love was this field, and I did a lot of research on it.

I remember one of the professors that probably had the most influence on me, a woman called Zena Smith Blau, who was a sociologist, and I did multiple research projects and independent studies. The first thing when I took her first course, she assigned us a paper and she said, write about yourself, ‘What makes you unique?

I went to see her and I said, ‘I really don't know exactly what you mean by this.’ She said, ‘Well, how different are you?’ And I said, ‘Well, my parents are children of Polish immigrants, and I really know the Polish community in Chicago fairly well.’ She said, ‘That's it Rick, that's what your specialty will be.’

I did multiple research projects on this area with her. Some of them were like the assimilation of Polish immigrants with regard to urban-rural origin. Another one was working-class youth in Chicago, and mobility based on education and high school part-time employment. So, that was a fantastic experience that is totally outside of what I did in my future.

Dr. David Johnson: We asked our listeners to submit questions because we knew you were coming on. We did get a question that perhaps is appropriate to ask at this time. It comes from a younger trainee, who wants to know what advice you would give to a trainee aspiring to have a clinical investigative career in oncology? What sort of preparation should they have?

Obviously, you've got to learn all of the techniques of clinical trial designs, statistics, etc. But what other advice would you give a trainee hoping to pursue a career in clinical investigation?

Dr. Richard Pazdur: I think one's career always has to go back to the basics and have a patient focus. So, what is your interest in the patient, so to speak? And that is what advice I would give them.

Are you interested in a supportive care issue? Are you interested in a specific disease? I think you have to follow a passion and that is what is most important to me. What is your passion in life? Because as physicians, we spend a great deal of time preparing for our careers and then subsequently afterward, in our designated careers, and you really can't approach this as a job. It has to be a passion.

So, if you do have this, what are the questions that you really want to answer? What is the field that you want to go into and make an indelible mark in? So, that's what I come from, and that's something that I tell our staff is: what do you really want to do? What makes you happy? What would make you a success in your mind? Not defining yourself by somebody else.

Dr. Pat Loehrer: Finish the story a little bit. Was it a patient then that turned you on to oncology? What brought you into oncology?

Dr. Richard Pazdur: I had a very circuitous circular route to oncology. Oh my God! I don't know if you have enough time to hear this story, but let me start though.

I originally went to medical school because of my background in sociology. I wanted to become a psychiatrist because here again, I thought psychiatry, sociology, and psychology, these are kinds of things I was interested in until I took my first rotation in psychiatry. It was nothing like I thought it was going to be. I saw my first patient that got ECT (Electroconvulsive Therapy) and I said, 'I ain't doing this.'

So, I was then interested in cardiology. Loyola at that time where I was going to medical school and where I did my internship and residency, had a huge cardiology program that was like CAST city, USA. Everybody was just coming into the hospital getting CAST and going out of the hospital.

Dr. Pat Loehrer: [Unintelligible 18:13] was there, right?

Dr. Richard Pazdur: Yes. Mary Kate [Unintelligible 18:18]'s father was the head of medicine there. And it had a huge cardiology program and an excellent cardiology program. I really did like Clinical Oncology, and I was all signed up for a cardiology fellowship, the Ts were crossed, the dots were placed, the contract signed, and everything.

And somebody said, ‘Rick, why don't you take a rotation while you're a resident in the cath lab? We have an opening and this would be a great time and opportunity for you to jumpstart your fellowship. So, you can come and work for us in the middle of your third year of residency for about two or three months.’

So, I did that and I hated it. I just dreaded it. I couldn't stand it. It was the most boring thing. I would think of every opportunity to escape the Cath lab. It was the same thing over and over and over again, inject the dye, turn on the [Unintelligible19:16] machine, and follow the coronary arteries.

So, I happened to go to a community hospital, St. Francis in Evanston, Illinois, and I met an oncologist there that had just finished her fellowship. I really was very impressed by her clinical skills. She had finished her fellowship at the University of Chicago and worked with her there and was just amazed by really the quality of care that the oncologist gave patients with cancer.

Previous to that, I had an interest also in oncology. At Loyola at that time, we had an oncologist his name was Ketty Badrinath, and he was an excellent clinical teacher.

Now that I decided that I'm not going into cardiology, the first problem I have is to find a job and to find a fellowship in oncology. So, I started investigating oncology programs at St. Francis Hospital there. I went down to the gift shop and I said, I want $10 worth of quarters. I went to a payphone, closed the door of the payphone, dialed information, and got every oncology program that I could think of from Mayo Clinic to all of the programs in Chicago.

One of my last phone calls was to Rush Presbyterian. I found that program director, Jules Harris, I don't know if you remember him, and he said, “We have an opening.” So, I accepted the position.

At the end of June, whatever it was, June 27, 1979. I started my oncology fellowship program. Now Oncology at that time in Chicago, to give you a picture of it, the largest program in oncology was at Rush. It had a total of 12 people. And the therapy started at Rush around solid tumors really in the endocrine therapies of prostate cancer and breast cancer.

So, it was a different program than most programs throughout the United States that were offshoots of Hematology programs and the treatment of acute leukemia and lymphomas. So, it had a really kind of different orientation.

So, I started my fellowship. And on the first day, I met Phil Bonomi, who had a tremendous influence and still has an influence over me. I know no doctor that I respect most more than Phil. I think the greatest compliment that one could give a doctor is to refer your own family to him. And I've done it on numerous occasions with various cousins and aunts and uncles, etc.

But as you mentioned, Pat, I also had the opportunity to meet my wife. And I met her and at first, we were very good friends and there was no romantic relationship. And then, as time proceeded, we knew that there was something special there. My wife was just a wonderful person.

Like myself, my wife was pretty much a self-made person. She was one of eight children, the oldest daughter. As the oldest daughter, she had to assume a lot of childcare responsibilities, cooking, etc, for all of her brothers and sisters and took care of the younger children. But she was an excellent student. She graduated first in her class. She was a national merit finalist.

I often asked my wife, ‘Mary, you're a nurse, are you interested in going into medicine? I'll be happy to work with you to get you into medical school.’ And she said, ‘No, you want to go into medicine, I want to go into nursing.’

That was her orientation toward other people. It wasn't about the buck. It wasn't about the title. It was about the work of helping other people. I really have to honor her mother and father who gave her that orientation. Of interest, all of her sisters are nurses. Her mother was actually a school nurse, and an original graduate of Rush. She went to Rush Nursing School in the 50s but had to leave because at that time in the 1950s, if you got married, you can't be in nursing school, they kicked you out. So, it shows you how times have changed.

Dr. Pat Loehrer: Well, this concludes part one of our interview with Dr. Richard Pazdur who is the director of the US Food and Drug Administration's Oncology Center of Excellence.

Stay tuned for part two of this conversation where we'll hear how cancer has touched his life personally and will explore the initiatives and programs, he started to improve patient care globally.

Thank you to all of our listeners for tuning into Oncology, Etc. This is an ASCO education podcast where we'll talk about just about everything and anything. If you have an idea for a topic or guests you'd like to see on the show, please email us at education@asco.org. Have a good week.

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In this ASCO Education episode moderated by Dr. Rami Manochakian (Mayo Clinic), two-time cancer survivor and patient advocate Ms. Samantha Watson and medical oncologist Dr. Lidia Schapira (Stanford) discuss the multifaceted impact of high cancer care cost on patients and survivors. They also review communication strategies and resources oncology providers can offer to help alleviate financial toxicity.

If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Rami Manochakian: Hello, and welcome to the ASCO Education Podcast Series. My name is Dr. Rami Manochakian. I'm a thoracic medical oncologist at the Mayo Clinic in Jacksonville, Florida.

As today's host, I'll be moderating a discussion on what I believe is a very important topic when it comes to cancer care and its financial toxicity. I am very excited to have two wonderful guest speakers who are joining us today. Dr. Lidia Schapira, who's a medical oncologist with a focus and specialty in breast cancer and cancer survivorship. She's a professor of medicine and oncology and director of the Cancer Survivorship Program at Stanford University.

We also have with us, Miss Samantha Watson. She's a two-time cancer survivor, patient advocate, and Managing Director of Stewardship at Expect Miracles Foundation, which is an organization dedicated to providing emotional and financial assistance to people with cancer. It's a pleasure to have you both with us today.

Samantha Watson: Thank you so much for the opportunity.

Dr. Rami Manochakian: Miss Watson, I'm going to start with you. Your story that I got to learn about is very inspiring. You had cancer twice as a young adult. You've gone through a lot. Can you tell us what was it like to go through that journey with two cancers, and a lot of treatments? Also, during that journey, definitely, you must have experienced a lot of financial and other social challenges. I'd like to hear more about that, please.

Samantha Watson: So, I was a senior in college, and I'd had recurring knee pain that nobody could really diagnose for any reason. And it would come and go throughout my years of college. And finally, when I was a senior in college, I had extensive testing and they found Ewing sarcoma, which I had never heard of.

My mom actually was an oncology nurse at Memorial Sloan Kettering. And so, I don't think it was on anybody's radar screen, but she understood the language way better than I did.

What I came to learn was that Ewing sarcoma was typically diagnosed in boys under 20. And I was female and 21 at that time, and it was diagnosed about 300 times a year. So, I had no frame of reference for this. I had been around Sloan Kettering when I was a kid because my mom worked there, but I didn't know what it meant. I didn't know what cancer felt like. And I certainly did not know anybody else who had gone through it.

But at that age and life stage, I was getting ready for my future. I was looking forward to graduating from college, I was looking forward to living on my own and everything stood still.

So, the cancer was in my leg. When I was diagnosed, I went through nine months of high-dose chemotherapy. I went through a 12-hour surgery. I had to relearn how to walk and did a lot of PT. In that time, my friends graduated and they started moving forward and they started creating their lives. And I sat back and watched.

I spent about four months at home after my treatment for Ewing's and I did my physical therapy. And I tried to figure out where to place cancer in my life as a young adult. And I went back to school and I had one semester left and I started to catch every cold that went around and strep. Just everything that goes around a college campus, I was constantly down and my doctors kept saying, ‘Don't worry, your immune system just has been devastated by this chemo and you just need time to recover.’

The day before my 23rd birthday, they did a bone marrow biopsy and found that I had Myelodysplastic syndrome, which was a very early form of leukemia. And a month before I graduated from college, I was told that I needed a bone marrow transplant.

Thankfully, because the search was long, and did not really involve me as a patient, I was able to go back to school and graduate from college. I sort of closed that chapter and had a bone marrow transplant about three months later in August of 2001.

And so, again, I was stuck in the hospital for months and months and months, watching all of my friends, again, graduate, go forward, get their jobs, and go on dates. And I sat back and watched and so my recovery, the second time, was very different because when I was freed from the hospital and able to sort of take my steps forward, I didn't really have anywhere to go. I had already graduated from school, I had not yet started working, and I have a very, very wonderful network of support from friends and family. But I wasn't really sure who I was and what I wanted to do.

So, to make a long story a little bit shorter. I started working for a nonprofit organization feeling like there was something more I was supposed to be doing. One of the things I started to become aware of, in my own survivorship experience, was that the aftermath was really hard. And it was uniquely challenging as a young adult without very much financial stability, or no experience, really in the healthcare system on my own. But also, I didn't have any peers. Everyone that I had gone through treatment with had passed away with the exception of me being one person.

So, I didn't have anyone to ask about this issue of young adult cancer and how to get my self-esteem back when I looked and felt different. And as I was sort of navigating these things, I got a bill in the mail for $275,000, which is an absurd number, anytime. But as a 24-year-old, who didn't really have any money in the bank. I mean, that was just completely impossible.

Dr. Rami Manochakian: Absolutely. Wow!

Samantha Watson: Yeah! So, very, fortunately, again, my mom was my best advocate. She spent two years fighting that bill, but I started to put the pieces together and realize that not only is survivorship hard, but it's financially challenging when you're on your own.

And so, I put those two pieces together and created an organization called the Samfund to provide financial support to young adults once treatment has finished because what I kept hearing was that we all share this experience of feeling like we got pushed off a cliff. And then they threw all sorts of bills on top of us while we were down there.

Dr. Rami Manochakian: Wow! Thank you. We're so glad you're with us after this many years. And you're doing well. That's wonderful, but definitely, I think what you've experienced on the other side, is what's after treatments. Dr. Schapira, we hear that term a lot, we as treating physicians, what does it mean to have financial toxicity and to go through it?

Dr. Lidia Schapira: Well, first of all, I do think that Sam's story is so inspiring, and really illustrates what the lived experience is for so many people treated for and living with and beyond cancer.

I think of financial toxicity as sort of an umbrella term that refers to the harm caused by the cost of receiving treatment for cancer. And the way that people are penalized with all of these bills that reflect a really difficult and broken healthcare system.

I think of it in terms of the pain and suffering in a way caused by the burden of cost. So, there can be material aspects, such as new debt accumulation, selling or refinancing a home, a decline in income, having to take loans to pay for cancer treatments, and even bankruptcy.

But there can also be psychological aspects, such as worrying about paying for treatment and being distressed. And there can be behavioral aspects, such as avoiding care or skipping doses of medications to save money. That is a story that we also hear as cancer clinicians.

Dr. Rami Manochakian: Absolutely. I think you mentioned it, and I couldn't agree more with the burden. I mean, the patients have so much to worry about, the patients and the caregivers, about their journey, fighting cancer, going through treatment, and then adding that extra burden and worrying about day-to-day life, their kids, and their future. Definitely, that's a lot.

Miss Watson, with you with the society or the organization that you're leading, you're getting a lot of calls from a lot of patients who need help. How are we doing in the last decade or so in this field, in this aspect?

Samantha Watson: On the one hand, I take it as a very promising sign that we're talking about it, because when I got that $275,000 bill in the mail, if my mom had not been a nurse and known that system enough to navigate the appeals process and all of that, I would still be paying that bill off, if I hadn't already declared bankruptcy. Nobody was talking about it back then. Financial toxicity was not a term that anyone brought it. Nobody talked to us about our bills.

So, I do think that conversations like this, and many others like it are very hopeful signs that we are headed in a good direction. That said, the costs are only getting higher and the economy is only getting harder, and I think we're starting to see the many ways in which this plays out for anyone who's touched by cancer.

At the Samfund, we were focused on the young adult population. Two and a half years ago, we merged with an organization called Expect Miracles Foundation, and we still provide Samfund grants to young adults. But we also provide funding for innovative cancer research and hear from thousands of people every year who are diagnosed with all sorts of cancer diagnoses at all ages.

One of the things that have become very clear to me is that young adults face financial toxicity in a unique way because they have a lot of things stacked on top of each other given their age and their life stage. But the issues really aren't unique to young adults at all. I think what we have seen is that financial toxicity affects essentially anybody who is diagnosed with cancer and/or as you said, is that the caregiver or family member and is directly impacted in that way too.

So, I think, on the one hand, the problem is getting worse, but I do think it's hopeful that we're getting closer to finding solutions and at least a willingness to talk about this.

Dr. Rami Manochakian: Thank you! Dr. Schapira, we live in an era of hope for patients with cancer. The number of drugs, the number of procedures or advancements in science, the research, and education really are great, and we're helping many patients live better and live longer. But that's of course, coming at a cost.

I'm a lung cancer specialist. Half of our patients now with advanced cancer have their cancer harbor mutation that we prescribe some great treatments, very effective, but very expensive bills. I think when we talk about financial toxicity, there are so many aspects, there are the drugs, the pills, the infusion, the scan, and employment, can I keep up my bills? What can you tell us about the different aspects of financial toxicity?

Dr. Lidia Schapira: As you say a lot of innovation is associated with a high price tag, and rising healthcare costs are being increasingly offloaded to patients by ways of rising premiums and out-of-pocket costs.

So, when you talk about targeted treatments that bring a lot of hope, we also have to remember that with a rising number of prescriptions, some of the drug plans have tiered formularies, where expensive specialty drugs typically fall into the highest tier.

And so, patients are often responsible for a percentage of the total cost of the drug, as opposed to a fixed co-payment. So, if we get more granular about this, we can say some of these drugs may cost in excess of $10,000 a month and are covered through some of these outpatient prescriptions as part of a health insurance plan.

But in such cases, a patient who has a tiered formulary that requires a 20% coinsurance for a $10,000 oral cancer drug may have an out-of-pocket cost of about $2,000 a month. I'm just putting some figures to this because these numbers are very hard to manage for so many of our patients, and we're all in a bind. We all want this to be different. But this is the reality that we as oncology clinicians, and our patients and families face every day.

Dr. Rami Manochakian: Absolutely. Thank you. We want and the patient wants the most effective treatment, regardless of cost. But then how can we integrate that into our shared treatment decision planning or making?

Samantha Watson: I do think that there are things that we can do, I think it's really important to recognize that this is the responsibility of a group. It is not just a provider's responsibility to bring it up, because then as Dr. Schapira was saying, you have to know the details of every individual patient's insurance situation, and income situation, there are just so many variables that can affect people. And it's unreasonable to expect any one oncologist to keep track of all of that. So, as a patient, I recognize how big that ask is.

At the same time on the patient side, I think it's one of these situations where patients don't know what we don't know. And as someone who is diagnosed with cancer, especially at an age when I have never had to advocate for myself before, I wouldn't have even known what questions to ask, I think when your doctor says, here's the drug I'm prescribing, you take it. And I think that even now, with all of the research that's been done, and all of the focus on financial toxicity, still most patients' inclination is to trust their doctor and not ask, is there a more affordable option, because there's still this perception, as you said that the most effective treatment is also the most expensive and nobody wants to sacrifice their chances of survival to save money.

And so, I think in the end, this is a group discussion. I think there need to be financial navigators or patient navigators, if they are available to the patient.

I also think that patients, caregivers, partners, parents, children sometimes, depending, can also be part of that conversation because, in everything that I have learned in the last 20-plus years, I still think that had someone tried to talk to me about my bills too early, I probably would have tuned it out. But that's not to say those conversations aren't important and sometimes somebody else in the room who can hear it better.

And so, I think if this is a collaborative effort on the part of patients and providers and family members, and other professionals within the hospital, then absolutely it should play a part because there may be other ways to either manage the high cost of treatment or lower the cost altogether. And sometimes it requires getting creative, knowing if somebody is going to need to take time off work for these treatments or to deal with the side effects that could have a devastating effect because, in the end, financial toxicity isn't just about the cost of treatment. It's about the full financial impact with many moving parts and employment is one of them.

So, I think it's really important also that this is an ongoing conversation, this is not a one-time conversation and people's situations change, and the ability to hear, and process information changes depending on where the patient is and how they're feeling on that day. And so, I think this is certainly an ongoing effort, but also has to include more people than just the provider and the patient alone.

Dr. Rami Manochakian: I love it! I couldn't agree more. Here is a caveat or challenge, which I'm going to ask Dr. Schapira. As an oncologist. I couldn't agree more with what you're saying, but I don't know and maybe a majority of oncologists, Dr. Schapira, we don't know a lot about the cost, at least upfront, we know the drug is cost like this, or the scan or what's going to happen, but an individual, we don't know what's the patient insurance plan.

I feel sometimes that I'm not able or equipped to discuss the cost of care up front. And that sometimes could create friction, because maybe we owe it to our patients to discuss. So, what do we do as oncologists or as oncology healthcare providers as a team?

Dr. Lidia Schapira: You ask a wonderful, multifaceted question. So, the first thing I would say, and what I've spent my entire career doing is we need to be empathic listeners. And we need to create a safe space in our consultation and exam rooms so people can tell us what's on their mind.

So, we may not be able to fix it but we need to be able to talk about this, if it is burdening our patient, just as we talk about any other toxic effect of the diagnosis and treatment. That's one thing we can do. We can do that by routinizing the conversation by asking at multiple points when somebody is ready, or before they're ready, perhaps talking to somebody in the family, we need to be thinking about it. But I think that it's complicated for us too because we are also stakeholders and we also are committed to treating patients with beneficence and advocating for justice, and we see all the harm that's been caused by the system where all of these burdens are placed on people at their most vulnerable time. And we all think it's not particularly fair.

So, I think that part of the conflict for us is that we feel we could do more for each patient. We feel we would like to do more collectively for all of the patients under our care and the care of our colleagues.

So, I think that part of that sensation, a feeling that we don't have sufficient power to fix it, may get in the way of us really collaborating in an open and empathic way with our patients who are experiencing these issues every day. We can think about what tests we order. We can think about the co-payments for the imaging tests. We can think about talking about whether or not they can afford those ancillary medications that we prescribe with great intentions to make their life more bearable.

So, there's a lot we can do. There's a lot we can do. I think we need to support each other. We need to link arms and advocate together for a more just system, but we can't not do anything about it.

Dr. Rami Manochakian: Thank you. This is, I think, very important. It really struck me when you say, look, even if we don't know, well, we're going to talk later on about resources and referring patients. But I do think that patients would like to see their oncologist or hear their oncologist or their treatment providers, or caring providers bring up the cost.

I think just like we asked them about their side effects and about how are you doing and what's happening and quality of life. I think bringing that up, making them feel that we are with them on this journey, even in these details, which often don't come and I'm sure many of our listeners are interested in asking what resources are out there?

Of course, each institution may have its own resources. But, generally speaking, what should we tell our patients? Where should they start from the patient caregiver? What resources are available to avoid or reduce financial toxicity?

Samantha Watson: I think in order to answer that, I also want to reiterate something that Dr. Schapira said from the patients’ side, because I think that oncologists don't have to have the answers, that is obviously asking way too much.

I think sometimes just bringing it up or acknowledging that there is a cost to this and that it is going to have an impact on someone's life is exactly the validation that a patient needs because culturally, we don't really like to talk about money. We're not really all that comfortable talking about illness either.

And so, when you put those two things together, it is a conversation that nobody wants to have. And so, what we hear from thousands of patients every year is that they are so ashamed by all of this. They feel like they have done something wrong. They feel like their doctors aren't going to get paid if they have an outstanding balance. And there's so much just misperception about how all of this works. I think just to bring it up to a patient to acknowledge it is so critically important.

As one example, when we were trying to find ways to tell the story of young adult cancer and financial toxicity at the Samfund, we ended up using 'Cancer isn't free', as our tagline. And when the team of volunteers who came up with that presented it to me, I actually cried, they will tell you that I cried in a meeting when they told me that because it was exactly what we needed.

I think, especially in the survivorship. Everyone, patients, family members, and friends assume that you're cancer free, and that, therefore you're fine. And so, to flip the script a little bit and say, ‘Well, wait for a second, cancer isn't free,’ opened up so many conversations.

We certainly didn't get any closer to lowering the cost of cancer, but not carrying around the weight of this shame and just fundamental discomfort in asking for help after treatment especially, it just opened up more conversations, and we saw so many young adults and other people take a deep breath.

And so, I think bringing up these conversations, even if they don't lead to immediate solutions is a really important first step. And so, with that in mind, I would say that any nonprofit hospital has to have a financial assistance program. They don't always advertise it very well and they don't always make it very easy to find on the websites. Some hospitals do a better job than others, but these programs are there.

The parameters vary, as you said, depending on the hospital and its resources. But I think as a starting point, anyone who's interfacing with that patient should at least say, ‘If you're struggling financially, if a bill comes in that you don't know how to handle, please give a call to this.’ It can either be the patient assistance program, a financial navigator, whatever your particular hospital calls it, and just give the person the resources that they can access it when they're ready.

So, I think that's a really important first step and a doable one, because it's a referral, nobody has to become an expert in that particular program just to know that it exists and to share that contact information.

The other thing I would say is that there are many, many more patient advocacy groups now than there were 10 years ago, and certainly than there were 20 years ago. And so many of the people that find us as one example, find us in a Google search.

So, anyone that is looking for help with finances, help with bills, cancer bills, I mean, there are all sorts of combinations of words they can search for, they will find the groups that they need. They just don't always know that they're supposed to search for it.

I think, again, bringing up this conversation, whether it's put in clinical terms like financial toxicity, or more informally, like, ‘Hey, how are you doing? How's your job? How's your stress level?’ Trying to gauge what their biggest challenge is, can sort of inspire them to go home and seek out the resources they need. But until these conversations even start, they don't know what they don't know.

Dr. Rami Manochakian: Absolutely, thank you! These are very helpful. Dr. Schapira, on our end, the providers, what tools and resources can we go to help us, clinicians, discuss financial toxicity more comfortably with patients?

Dr. Lidia Schapira: First, I would say to be comfortable in just talking about it and being open and receptive. The second is to build some expertise in the team. We don't have to carry this. We need to be part of the solution but we don't have to have all the fixes.

I think the idea of financial navigation is gaining traction with our colleagues. There are some people who actively are embarking on research, including a very interesting randomized control trial of a financial navigation intervention that's currently underway.

So, I think that we need to have people who are available to us that we can call, who can help patients understand their bills, who can help patients find sources, perhaps that can help them with payment, to find the nonprofits or charitable organizations, that can help them fill out forms, help them with legal aid, if that's what they need, help them apply for pharmaceutical assistance or health insurance.

All of these are very concrete tasks, and we need to have some capacity in a cancer team to deliver these. And I think for us, as oncologists, what I would love to leave us with is the idea that we can't wait. There is an urgency of getting all these things implemented. And we can do it in any number of ways, but it's something we absolutely need to deliver to our patients.

Dr. Rami Manochakian: Absolutely. Thank you for bringing that up. As you both mentioned, it's very good that we're talking about it more. I'm remembering a patient of mine who told my social worker, and kudos to all the wonderful social workers and case managers out there, these patients advocates out there are a very important part of the team, not just the doctors, the nurses, the others. They're looking after the patient in so many aspects.

I remember my social worker telling me, well, the patient did say, ‘Please don't bring this into much detail to Dr. Manochakian.’ And when she asked her why? And she said, ‘Well, because I don't want him to worry about that part. Let us worry about this part.’

That struck me. The patient doesn't want me to worry about her or his financial toxicity. I mean, of course, we need to but I don't want to make it sound like the sky is blue. That, yes, that should be something easy.

No, it's not easy. An important challenge is time. A lot of time the social worker would tell us, ‘Well, we also understand that you don't have time for it. Your visit with the patient is 30 minutes or an hour. We do know that in the community, sometimes visits are shorter, you don't want to just ask and then change the topic. And if you ask for a candid conversation about financial toxicity, it's gonna take time. Where do you have that time?’

So, I don't know. Dr. Schapira, if you have a solution for that, or an idea because it is, I think a major challenge is time and this is maybe where the social worker and other people help. But this conversation needs time and there is in this day and age in health care, there is not much time.

Dr. Lidia Schapira: My short answer to that is we need to build teams that have the capacity to absorb these issues, just as we've learned to deal with other difficult conversations and other difficult topics that are such an important part of people's lives.

And remember that this just doesn't affect cancer care. There may be other specialists, there may be primary care physicians who were also there trying to assist patients and families, and there may be other decisions that are linked to whether or not they receive cancer care, or what kind of cancer care they receive.

So, I think that we're all in this together and my take home is that we all need to have this capacity in our settings wherever we deliver cancer care.

Samantha Watson: One thing I would add also is that cancer is not a single appointment, right? We all know that. I probably spent more hours in the clinic, the years of my treatment, than I did in my own house.

So, we have a lot of opportunities to do this. I'm thinking about the many days either inpatient or outpatient, when, for example, a nutrition specialist would come and see me because I couldn't eat and my weight was dropping, and everybody was concerned about that. And on some days, I just didn't want to hear it, I wasn't hungry, I couldn't stomach whatever she was trying to give me. But on other days, I took it and was ready to try and put the weight back on and take her suggestions, and I was just in a different frame of mind.

And so, I think that if there is a social worker, a financial navigator, somebody who can make some of these referrals to organizations and to assistance programs within the hospital, that even joins one of the appointments for the last five minutes, or pokes their head in every so often to check-in. We have a lot of different opportunities to do that because most people also are spending time inpatient. And so, I think this probably also is a learning opportunity, right? We see what works. And we see we will learn from this because we're figuring this out in real-time. And hopefully, five years from now, 10 years from now, we will look back on this time when we started to have these conversations and try out different strategies and get to the root causes of some of these issues, and we will have figured out solutions. But I think for right now we just need to try.

Dr. Rami Manochakian: Well, thank you. This has been really very insightful from both of you. I really appreciate everything you share today. As we are reaching the end of this podcast, I'd like to ask each one of you to give all these wonderful patients and caregivers, anyone who's involved in cancer care out there, a final message. I'll start with you, Miss Watson.

Samantha Watson: One of the things that we have touched on in this conversation is that financial toxicity is not limited to the cost of treatment, and therefore the experience is not only felt while someone undergoes treatment. It extends well into survivorship. It extends to employment issues. It extends especially for young adults to family building challenges, which can be very expensive. And this is an ongoing issue but the thing that I would leave people with is that there is a way through it.

I have done this work for 20 years. I have heard thousands upon thousands of very similar stories, not just about profound financial struggle, but about resilience and about determination. And if this is just a matter of connecting the dots, and we know that there are some resources out there, we have to make sure patients know about them. We have to arm providers, social workers, and other professionals with the confidence and the information to share but I think if we can do that well, and when we do that well, we have already seen that, especially in the young adult community, which is the one that I know best, so many of these incredible patients go on to live very happy and wonderful lives.

And if I have an example, I had my bone marrow transplant almost 21 years ago. I have dealt with plenty of side effects and a lot of bills. I've been happily married for 15 years. I have a career that I love, and I'm a mom to two beautiful children. So, with the right support, and with the right mechanisms and conversations in place, people absolutely can move forward through this.

Dr. Rami Manochakian: Thank you! Dr. Schapira?

Dr. Lidia Schapira: My final comment is that we have learned a lot through research and through conversations, we know that there are some who are at greater risk for financial toxicity and harm, and those who are the younger patients are the ones with lower income, particularly black rural patients.

So, we need to redouble our efforts. We need to do this with compassion. We need to do this as part of the work that we do. We need to involve people who have special expertise in this and bring them into our cancer team. And we too, I think, need to feel that this is a general fight that we all need to get involved in to make cancer treatments, and particularly the novel, cutting edge cancer treatments more accessible for everybody who comes to our care, and without burdening them for the rest of their life with the consequences of treatment.

Dr. Rami Manochakian: Thank you! You couldn't have said it any better. I do like to mention here also since this is an ASCO podcast, I'd like to highlight the efforts by ASCO, the American Society of Clinical Oncology, and many other societies to be fair out there in their advocacy efforts with Congress, with the government about what can be done more also at a higher level to try to increase access in more effective, more affordable health care. And this was very insightful. I'm positive, it's very helpful for many listeners, patients, and caregivers out there.

As you both mentioned, to further highlight the importance of keep talking about these topics, to tell every patient out there that help is there. But you need sometimes to remind yourself to ask for help. Don't be ashamed of talking about financial toxicity, bring it up. We as healthcare providers know we're not doing a great job yet at it, but we need to help each other patients and healthcare providers, and all the team members to talk about this topic more and see how we can help.

The conversation needs to be continued about financial toxicity for patients, cancer survivors, continue to communicate, share the resources, and definitely, I think the future will be better. It needs time, but hopefully, we can get there slowly. Thank you so much, both of you Dr. Schapira and Miss Watson. Thank you so much to our wonderful ASCO staff. Thank you to our listeners. We appreciate you tuning in to this episode of the ASCO Education Podcast. Have a good day everyone.

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In the second of this two-part conversation Drs. Patrick Loehrer and David Johnson sit down with Dr. Deborah Schrag, the current Chair of the Department of Medicine at Memorial Sloan Kettering Cancer Center to continue the discussion of her roles as a leader, researcher, oncologist, public health expert, and more.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Dave Johnson: Hi everyone, welcome back to Oncology, Etc. an ASCO educational podcast. My name is Dave Johnson. I'm at UT Southwestern Medical Center in Dallas. And I'm here with my good friend Dr. Pat Loehrer who serves as a director of Global Oncology and Health Equities at Indiana University. In the second half of our conversation with Dr. Deborah Schrag, the current chair of Medicine at Memorial Sloan Kettering Cancer Center in New York.

In part one, we heard about Dr. Schrag's early life and background, as well as the importance of affordable cancer care and much more. Let's jump back into the conversation and hear about her current goals and initiatives at Memorial Sloan Kettering.

I have a question for you. Jumping ahead a little bit. But I mean, you're such a role model for all of us. But you're now in a very powerful position as head of medicine at the preeminent cancer center in the world. So, I'd be interested in knowing what are your top initiatives? What did you come to this role wanting to do short-term and long-term? I'd be curious to hear from you about that.

Dr. Deborah Schrag: Yeah. So, I have lots of specific initiatives, all the things that are probably very similar across medical cancer centers. We have to figure out the role of immuno-oncology. We have to figure out the role of CAR T-cell Therapy.

There are lots of specific things, but let me tell you about three sort of overarching principles and things that I think we need to think about. So, one of the reasons why I decided to leave my job where I really focused on training researchers and building a research program to lead a department of medicine that has a mix of clinicians, educators, and investigators is that there's really a profound sense of exhaustion and disconnection. I'll use the word even burnout or people get the sense of losing the joy in the practice of medicine.

And as corny as it sounds, and I know I'm going a little corny here, Dave. But I really want to help bring back and connect people to the joy in the practice of medicine. It's the joy that we experience when we crack a tough case, when we help a patient, when our patients make us laugh, when our patients and their families make us cry, when they drive us bananas, when they cook us food that is inedible, just reconnecting us to the joy, to the stories.

I really wanted to try to be a different kind of leader because I felt that I could make a contribution to the field of academic medicine in general and oncology in particular, by working with faculty to set them up to tap into that joy, because I know they all started with it. I know they all went into medicine because they care about those human stories, because they do want to make a difference.

This past week, a fellow intern of mine who you may know, passed away. His name was Paul Farmer. He was the head of Partners in Health and he was an infectious disease physician. There's a book about him by Tracy Kidder that's really moving. There's also a documentary about him called, Bending the Arc, which I would highly recommend.

Paul was an incredible inspiration, just incredible, but he brought so much joy to the practice of medicine. I remember when Paul was going to some of the poorest places on the planet, specifically Cange, Haiti. He got an idea that he needed to bring chemotherapy because there were large cancers that were untreated. And he wanted to get leftover chemotherapy from the Dana-Farber.

So, in the 1990s, when I was a fellow, he would ask me whether I could get him any leftover Taxol. I was like, ‘Paul, I can't do that. It's not safe. You can't take leftover Taxol to Cange’. And he said, ‘Deb, just wait, the drugs will be oral soon, and then I'll get it’. But guess what? Paul came back to me in 1999, and capecitabine had been approved. The oral equivalent of 5-FU. He held my feet to the fire. He said, ‘Every time you have a dead patient, if there's any leftover capecitabine, I want you to get it for me’.

Inspirational leadership, connecting people to the joy in the practice of medicine. I would say that's number one. There's no one simple formula or way to do that. It's hard work. It requires a team I think a lot more teamwork into the practice of medicine. I think we're coming out of a hard two years where we’ve been confined to Zoom boxes. But it's a lot easier when we can sit together in a room and have a pizza and a beer on a Friday afternoon. But we have to figure this out, and we will, step by step.

The other big thematic area, I think, has to do with the patient experience. Dave, I mean, when I started out as a fellow, patients with advanced lung cancer were living for 10 months, 10-12 months, that was a pretty good run with advanced metastatic non-small cell lung cancer.

Well, these days, it's 2-3 years, and there's even quite a tale of patients who were living 4-5 years. And that is a long journey. It's no longer the 800-meter sprint, it's a half marathon, turning into a marathon and even an ultra-marathon. So, the way we deliver care needs to change.

So, we're really rethinking here, how we deliver care. So, as an example of some, if you go back to the 80s and 90s, cancer chemotherapy was something that happened in the hospital. And in the last quarter century, we've transitioned that to an outpatient practice. I think in the next quarter century, we won't transition all of it, but we will transition a lot of it to home.

As an example, I'm struck by when patients undergo IVF, they get handed some Lupron and are taught how to self-administer Lupron every day, so they can undergo a fertility cycle. But when those same women get breast cancer, they have to come into the clinic and sit and wait and take half a day off of work to get the same Lupron. The same is true for men with prostate cancer. Why is that? It's because of policies, and it's not safety, it's not patient-centered.

So, I think we have an opportunity to change the patient experience. I think we'll be able to give immunotherapy at home, and HER-2 agents at home. We have to do the trials and make sure that it's safe, but we have to make cancer care more patient-centric and improve the experience. And that's just essential when it's a marathon that we're asking our patients to run, not these 12-month sprints. Families need this also. So, those are a few of the challenges that I want to take on. Joy in medicine, patient experience, and of course, the physician-scientist pathway needs to be strengthened.

Dr. Pat Loehrer: I love it. You can imagine between Dave and me, I think that resonates so much about having joy in medicine. I've not heard other people talk about that, but I really think that's an important vocation. But I'm going to ask you something else too because, in the efforts of being joyful and being a role model for that, there's the other side of it, where you can't actually let your hair down, and really be depressed, if you will, or down because you can't let the other side see that.

And so, who do you lean on if you will, your confessor that you can talk to when you're feeling down when you're trying to fight the anti-joy part of your job?

Dr. Deborah Schrag: I have lots of friends outside of medicine. And I've always found that that's really helpful to make time for friends outside of medicine. They help connect me to humor and other things. I'm coming up on a big high school reunion. My high school classmates and I still meet for picnics in Central Park. And there are about 120 in our graduating class. And I think we'll have about 110 of us getting together. We still have picnics with 40-50 people attending.

So, there's nothing like old friends from childhood who now do all kinds of different things. So, that's really helpful. But I've also found that my mentors and colleagues who trained me and who know me really well, are a great source of advice.

So, leaders in academic medicine, and I've always found that I've been able to get advice from people who were senior and leaders, people such as Dr. Mayer, Dr. Benz, Dr. Jim Griffin, and also junior colleagues.

I now increasingly as I get old, I rely more and more on my trainees and my mentees. So, some of the folks I know best are people who I trained. So, I'll just give you one example. Many of you may know Ethan Basch. We worked together when we were both just coming up. I was an assistant professor. He was a couple of years behind me. I mentored him.

Well, he's now chief of the Division of Oncology at UNC. He and I have written lots of grants together. We're really partners now. But it's been a lifelong professional friendship. Sometimes when I just need to let my hair down, I get on the phone with Ethan, and yeah, there's a little bit of commiserating.

But I'll give you an example that runs through Dave. Some really valuable experiences had to do with being asked to serve on committees. I think it's great. I just want to give a shout-out to ASCO. Some of my earliest professional relationships were with superstars that I met through ASCO. So, people like Joe Simone, reading his Simone's Maxims everyone needs to read Simone’s Maxims if you haven't. There was a guy by the name of Christopher Desh, who sadly passed on. But he was an ASCO member who practiced at the Virginia Commonwealth University back in the late 1990s. Boy, did that guy understand the joy in medicine, some of the early folks who started QOPI.

Being introduced to those individuals who practiced in different parts of the country and who had different kinds of challenges - having that sort of rich network has been incredible. At some point, I think through such a connection, maybe it was through Dr. Mayer, I was referred to Dr. Johnson, who was then running the American Board of Internal Medicine committee that wrote the oncology exam. I participated in that for a few years that was led by Dr. Johnson.

And I met incredible people on that committee, including Dr. Johnson, just Dr. Johnson's stories could inspire anyone and get them back on track just in terms of the humor and the joy and the love, and really the pride in the profession. But I met Jamie Von Roenn that way, who's now leading educational efforts at ASCO, she was on that committee. Lynn Schuchter became a good friend of mine as a result of that.

So, I would just say, sometimes you need to get out of your own space. And sometimes I need to get out of Dodge, as they say, I need to get out of New York, get out of Boston, and being connected to colleagues across the country has been so rewarding.

I have a network of friends at other institutions who I rely on. Serving on external advisory boards is a great place to meet people. Study section, if anyone has the opportunity to be on study section. That's a fabulous opportunity.

So, I think participating in peer review, showing up at meetings, serving on ASCO committees, or ASH or AACR. These are really important experiences. And I will say in my leadership role, I'm really trying to make it clear to faculty that I encourage them to take time to participate in these activities and attend these events and even travel because the traveling is important, too.

I could not have gotten the same dose of Dave Johnson, if I had not actually gone to the meeting, spent all day writing board review questions, and then having a nice meal afterward. That was part of the experience. I don't know what you would say, Dave, but that was my view.

Dr. Dave Johnson: So, one of the things that Osler talked about was the fellowship of the profession, and how important it is to have those relationships. Even if one can't physically be with that individual, developing that spiritual relationship is really critically important. I'm so glad you brought this up and expanded on it in the way you did because I think it's absolutely critical to retain the joy of medicine. It's our colleagues, as well as our patients that make it such a marvelous, majestic profession, in my view.

Dr. Pat Loehrer: I was going to just add something if I could. So, Deb, replace me on the ABIM, just to let you know, because we had certain slots on there. One of the not sure if it was the rules or guidelines that were mandated is that everyone needed to take the oncology boards, even though we wrote the questions, we had to take the test. And you knew that and you had such unbridled enthusiasm for this.

I still remember this deeply, and that not only did you recertify for the oncology board, but you also studied to take the medicine boards too. Your love of medicine is so contagious. And I'm sure everyone at Memorial benefits from this.

Dr. Deborah Schrag: Thank you. That's very nice to say. I do, I love the stories. I've been rounding with the house staff on the inpatient service. I think both of you know, inpatient oncology, as we're able to do more and more in the outpatient setting, our inpatients are very, very sick. And we often get a front-row seat to what I would call the social determinants of health challenges.

In other words, if you've got relatives and resources, you may be able to be at home. But if you have severe pain or symptoms, and you lack the relatives, or you live on a fifth floor, walk-up, or just don't have the resources to get the home care that you need, you're more likely to be in our hospital. But as I round with the house staff, I find myself asking them to tell me more about the patient stories. Because when I round and they tell me that it's a 74-year-old with peritoneal carcinomatosis, jaundice, and abdominal pain. I'm so old that I've seen so many hundreds of those patients and the management hasn’t changed very much. But what's really the privilege is to understand the journeys that got people where they are, and to learn a little bit about who these people are.

I try to do that when I round with house staff and I find that it makes the experience better for them. I have to say that I do worry about how we train young physicians in oncology because what they see on the inpatient side is really the hardest of the hard, that's obviously less true in a leukemia service, where they're delivering lots of curative therapy or a stem cell transplant service. But in solid tumor oncology, it's really hard. I think it's something we have to have to tackle. We have to rethink education and medical oncology. I'm hoping that we're going to do that. That's also on the bucket list, by the way. I think we have to do that as a profession. And I know both of you are passionate champions and advocates for education, as is ASCO. But I think it's really imperative that we do that if we are to keep attracting talent.

And then I just want to make one more point, which is that New York City is one of the most diverse places in the United States. I don't know about the planet, because I don't know the whole planet. But in the United States, we are incredibly diverse. But the oncology workforce does not yet look like that.

So, we have a lot of work to do to train a much more diverse workforce. We're doing well with respect to gender, very well. We're literally about 50/50, we may even have a little bit higher proportion of women on the faculty here at MSK. And I think that’s true nationally as well. But with respect to Blacks and Hispanics, and other underrepresented communities, Native Americans, we've got a long way to go. And we have a pipeline problem. And that's going to be hard. But it's hard work that we have to do, and I know you guys are working on that in your own centers as well.

Dr. Dave Johnson: Let me follow up on that. What attributes are you looking for in trainees and newly hired faculty? Whether they be junior or senior faculty? What are the characteristics or attributes you seek that you think predict, or certainly you want your individuals to possess?

Dr. Deborah Schrag: We all want people who have everything, but I would say creativity, the willingness to take risks, and the ability to ask a question. I say this to the trainees, frankly, I say it to my own children as well. ‘It's okay, take a harder course.

Yes, you may get a B minus by trying something new and different, that doesn't play to your strengths. But try something new. Take risks. Yes, the trial may fail. Yes, you may not get that grant.’ But I think a willingness to take risks, a willingness to put yourself out there, a willingness to stretch. I'm also looking for people who can work in teams because there is no aspect of medical care that happens in MSK, I suspect that it's also true that maybe medicine in Antarctica, but even medicine in Antarctica is probably a team sport.

Medicine has become a very complicated team sport. It's a very complicated dance with pharmacists, nurses, and APPs. It takes a village to give a course of immunotherapy. It is very complicated.

And so, when people like to control things and like to do everything themselves, they're going to have a hard time. And that's true I find for teaching, laboratory investigation, wet lab, dry lab, most good, impactful, important science in oncology these days, clinical trials, wet, dry, all of it gets done in teams. Teams that have people with different levels of training, different skill sets, early stage, late stage, people who are quantitative, people who can write, people who can program, people who can do lab experiments, and people who know what an organoid is. People who know how to program an in R. All different kinds of skill sets but they have to be able to work in teams.

People who can't do that are going to struggle to achieve maximum impact. I'm not saying that there isn't room at the end for the occasional genius person who likes to work solo. But that's not really what we need to move the needle.

So, I need team players. I think there is a big emphasis on collegiality. Of course, we want smart and we want brilliance. But sometimes a drop less brilliance and a drop more collegiality and being able to work together in a team, it goes a long way and it’s the difference between doing something impactful and not.

That's what I look for. I also think that it takes all different kinds of people. And no one has to excel at everything, but it's great for people to be able to excel at something. So, passion, drive, and ability to ask questions, and not being afraid to occasionally fail and having some tolerance for that and trying to make sure that leaders are able to tolerate that, too. We have to be able to.

Dr. Dave Johnson: Yeah, I think those are great suggestions. We're getting near the end of our time today, and we have a lot more questions to ask. But what's your biggest fear, as the head of the Department of Medicine, looking to the future, what causes you to lose sleep at night?

Dr. Deborah Schrag: I think the business of medicine. If medicine turns into something that feels just like [inaudible] work, and losing physicians, if we don't respect physicians’ need to take care of themselves, to take care of their families, and yeah, to find that joy, then we will not attract the top talents.

I think we need great minds and great hearts and people from all walks of life to enter the profession, because that's the talent that we need, to quote my friend, Paul Farmer, ‘Bend the arc’. And you know, we need to bend Kaplan-Meier curves in the right direction. And we need the talent to come into the profession, and if they see that we are not happy and not thriving, the next generation is going to go elsewhere.

I don't want to begrudge my wonderful endocrinology colleagues. We need people to tackle diabetes, and we need great surgeons and great anesthesiologists, too. So, it's not just oncology. In medicine, I'm responsible for all kinds of discipline. And boy, we need a lot of cardio-oncologists because we've created all kinds of new challenges.

So, it's all of the sub-disciplines of medicine, but I think physician well-being and attracting talent to the field is really essential and making sure that the business side of medicine doesn't take over and destroy the core promise and premise of academic medicine. It is a spectacular profession and calling, and it has led to so many advances that have really changed the world. And we have to, I think, preserve the good in that. My fear is that that gets further eroded.

Dr. Pat Loehrer: Just one last question from me. Thank you for all your wonderful comments. But I think I have to ask this because it's such an unusual thing as they brought up at the beginning that you're the first female Head of Medicine at Memorial and Lisa DeAngelis is the first Physician in Chief.

And so, although there is gender equity in medicine, there is not gender equity and leadership around the academic world. And this is a very unique situation there. Can you reflect a little bit about the significance of this and perhaps, lessons learned, particularly if you're speaking to a younger version of yourself or a young woman who's thinking about a career? What are the lessons between you and Dr. DeAngelis mean?

Dr. Deborah Schrag: I'm not sure I've been at it long enough to have lessons. I'm just so grateful. So, I'm not in the generation that was a trailblazer. I'm a beneficiary. So, I've had the privilege of being trained by Dr. Jane Weeks, by Dr. Judy Garber. I, myself, had so many great mentors who were women.

I would say to women, that you can have it all. You just may not be able to have it all at once. Women and men have to make choices. Can you have a lab and be a laboratory investigator? Yes. Can you do that and have a family? Yes.

I think running a high-power lab and having a gigantic clinical practice and running clinical trials, I think the three-legged stool and the so-called triple threat is really, really hard. But I think it's hard for women and men.

What I would also say to women is you don't have to be the boys - be yourself. I think the best advice I can give to leaders is to be authentic. Because everyone, men, women, people smell a phony and no one likes to phony.

So, I think if you know how to partner, you understand that it's a team sport. I think women do that really well. So, I think being authentic, and I think women need to hear that, you don't have to emulate male role models. You have to be yourself.

I would love to emulate the two of you. I have to thank both of you because the Indiana Miracle and Dave from his Vanderbilt days, Vandy, as Dave likes to call it, from his Vanderbilt days to his Texas days, like, the two of you are such incredible thought leaders and inspirational leaders in oncology, but I can't be you.

The best we can be is sort of the best version of ourselves but we can be inspired by the great qualities that we see in other leaders and carry a little bit of that with us. So, I think that goes for women and for men.

Dr. Pat Loehrer: Thank you! Well said, and I appreciate the thoughts. We've kind of gone through this and we're going to have to wrap it up. One of the questions that we often times ask our visitors is if there's a book that they're reading, a documentary that they're watching, a movie they're seeing, or anything you'd recommend?

Dr. Deborah Schrag: That's a good question. So, yes, actually. One of the ways that I learn about leadership that I find, actually a fun way that's both relaxing and educational, is to read a biography. I love reading biographies.

I'm going to name two. And these are popular books - for scholars these may not be. First really fun book is ‘The Splendid and the Vile’, by Erik Larson. It's a book about Winston Churchill in 1940, and how he has to try to persuade the United States to enter World War Two, but it's really about a particular year in history and Winston Churchill.

Dr. Dave Johnson: It's a great book.

Dr. Deborah Schrag: It's called, The Splendid and the Vile. I just learned so much about leadership from that book and the decisions that Winston Churchill makes in his bathtub. So, just read that book and think about what Winston Churchill does in his bathtub. I can't lead from my bathtub, I live in a New York City apartment, but that's one.

Then more recently, I guess there's a little German theme happening here, is, The Chancellor. It’s about the life of Angela Merkel. It's long, I haven't finished it yet. But it's incredible. What a story, East Germany, her leadership style, how she studies chemistry, how she rises. It's a fantastic book. It's called, The Chancellor. So, I will recommend that one.

Then the last one, my beloved nephew who's like a son to me. He's about 36 years old, and he has ALS. And he's completely paralyzed. He is on a vent and he has two little kids. But he released a documentary that actually won at the Tribeca Film Festival called, Not Going Quietly, which is about a cross-country trip that he made. He's a pretty inspirational character, despite the fact that my nephew was completely locked in, he communicates only with his eyes. He is living a remarkable life. I think that documentay, I know this is a shameless plug for my nephew, but he's a pretty inspirational character. I don't necessarily agree with 100% of his policy prescriptions and recommendations. But there are lots of ways to make meaning in the world. So, that's another documentary.

Dr. Pat Loehrer: That's incredible. Thank you so much for sharing that. I'm going to look it up. People think cancer is the worst thing you can get but there are worse diseases to have.

Dr. Deborah Schrag: Yeah, I think this one might change your idea. And then I would also say Paul Farmer’s Bending the Arc. I think for young physicians who haven't seen that movie, I would recommend Bending the Arc.

Dr. Pat Loehrer: Thank you.

Dr. Deborah Schrag: Thank you! It's been great to chat with you.

Dr. Pat Loehrer: It's great. So, that's all the time we have for today. And I really want to thank you, Deb, for joining us and for all your insight. It's been wonderful. I also want to thank all our listeners for tuning in to Oncology, Etc. This is an ASCO Education podcast where we'll talk about just about anything and everything, if you've heard. If you have an idea for a topic or guest you'd like to see on the show or a host that you would like not to see on the show, just email us at education@asco.org. Thanks again. And Dave, I just have a riddle for you here. How do you make an octopus laugh?

Dr. Dave Johnson: Show him your picture.

Dr. Pat Loehrer: Ten-tickles. That's all we have for today. You guys have a good evening. Take care.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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In part one of a two-part conversation, Drs. Patrick Loehrer and David Johnson sit down with Dr. Deborah Schrag to discuss her roles as a leader, researcher, oncologist and public health expert. The current Chair of the Department of Medicine at Memorial Sloan Kettering Cancer Center in New York, Dr. Schrag discusses the joy and passion she has found throughout her career, and more.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Pat Loehrer: I'm Pat Loehrer. I'm the Director of the Center of Global Oncology and Health Equity at Indiana University.

Dr. David Johnson: Yes. And hello, I'm David Johnson. I'm at UT Southwestern in Dallas, Texas.

Dr. Pat Loehrer: And welcome to another version of Oncology, Etc.

Dr. David Johnson: Yeah, great guest today, before we get started with our guests, though, Pat, what are you reading these days? What can you recommend to me?

Dr. Pat Loehrer: Well, I'm reading Jamie Raskin's book, which is about his son and about the insurrection. It's really a wonderful read so far, particularly I think about the family nature and how much he deeply respected his son who unfortunately committed suicide.

Dr. David Johnson: Right before one of the impeachment trials as I recall, right?

Dr. Pat Loehrer: It was right before the January 6 insurrection.

Dr. David Johnson: Yeah, terrible situation. I have a book I've been meaning to recommend for a while. It's one that I've given to all the chief residents I've worked with over the last several years. And today's guests made me think about this book. It's entitled, Osler: Inspirations from a Great Physician. It's written by Charles Bryan, who's the former Chair of Medicine at the University of South Carolina in Columbia.

Dr. Pat Loehrer: You trained with Osler, didn't you?

Dr. David Johnson: I was a couple of years behind him. He was my senior resident. For anyone who's an Oslerphile, it's a great book to have. But even if you're not, it's got some wonderful lessons to be learned about how to interact with one's colleagues, and a lot of information about leadership, which is why it made me think of today's guest, Dr. Deborah Schrag who we're really excited to welcome to Oncology, Etc.

Dr. Schrag is the Chairman of the Department of Medicine at Memorial Sloan Kettering Cancer Center in New York. She's a highly accomplished healthcare leader, clinician-researcher, and expert in public health and population science.

Deborah received her medical degree from Columbia University and completed her residency in internal medicine at Brigham and Women's. She obtained her medical oncology training at Dana-Farber in Boston and also received an MPH degree from the Harvard School of Public Health.

After a brief stint on the faculty at DFCI and Brigham and Women's, she joined the division of gastrointestinal Oncology at Memorial Sloan Kettering, where she was an associate member and Associate Professor of Public Health and Medicine.

In 2007, I believe it was, she returned to Dana-Farber and Brigham, where she continued her work focused on improving the delivery, quality, and effectiveness of cancer care. While there, she served as chief of the Division of Population Sciences until this past year when she returned to Memorial to chair the Department of Medicine.

I also think she's the first woman to hold this position, but we'll learn about that momentarily. Deb is internationally recognized as a pioneer for her work engaging patients in reporting outcomes as a way to improve care.

She has led pragmatic trials using informatics strategies to optimize patient and clinician wellbeing, efficiency and quality, and equity of care. In short, she's a true superstar, leading the department, the major department, in one of the world's foremost Cancer Institutes.

Deb, welcome to Oncology, Etc. Thank you so much for accepting our invitation. This is a relatively new oncology podcast, but already, we're known for our incisive, deeply penetrating questions. So, I have a question for you to start off. Do you have any carpentry skills?

Dr. Deborah Schrag: Absolutely none whatsoever, Dave. None.

Dr. David Johnson: I'm disappointed. It's my understanding that Schrag is German for cross or a slant and people who build cross-legged tables. So, I was hoping, my house was destroyed recently, and I'm looking for replacement furniture, and I was hoping you might be able to help me.

Dr. Deborah Schrag: I apologize. But I'm not going to be able to help. The name, you’re correct, though, David, is a German name. So, my family does hail from Germany and they made malt, which is the major ingredient in beer. I'm not sure where the name comes from. But they ran malt factories and shipped malt all over to all the beer, before there were craft beer distilleries, that's what they did.

Dr. Pat Loehrer: That may come in handy by the end of this podcast, by the way.

Dr. Deborah Schrag: Could be.

Dr. David Johnson: Well, speaking of your family, tell us a little bit about your background and where you were raised, and your family members.

Dr. Deborah Schrag: Sure! I'm glad you asked that because I really have been very influenced by where I grew up. And as I think about it, experiences that go back to first grade got me where I am today.

So, I am from New York City. I grew up in Manhattan in the 1970s. And as you may know, that was a pretty rough time in the history of New York, what's often referred to as the 'bad old days', although it didn't feel that way to me. But I started out attending New York City public schools. And at that time in my neighborhood on the Upper West Side of Manhattan, my first-grade class had about 45 students, and one teacher, there were about five or six of us who spoke English, and everyone else was a recent Puerto Rican immigrant. I pretty much sat in the corner and read to myself.

Now I didn't stay in the public school system for long, but I saw in first grade, how things weren't fair. And I saw and felt my own privilege, acutely. And even as a little kid, I had that sense.

Eventually, my parents transferred me to private school later on. And there were kids in the neighborhood who didn't have the same privileges that I did. But living in New York, you walk around, you're confronted with disparities every day. We still see it today with homelessness on the streets.

At that time, there was a lot of alcoholism and the use of drugs. And they were two blocks north that were safe to walk and two blocks east that were not safe to walk. So, this really stuck with me from a very early age.

As a student in summer jobs, I worked lots of interesting jobs. I started at 14 scooping ice cream at Baskin Robbins, I worked at a famous Deli in New York called Zabar’s, selling coffee. Lots of interesting jobs that I worked during holidays and vacation times. But one of my first jobs was working in an organization called the Floating Hospital, which was a big old ferry boat that circumnavigated Manhattan, and it provided a summer camp. And we would take 1800 people on a boat around Manhattan every day. And my job was to do lead testing. And I learned how to stick kids, test them for lead because there were incredible amounts of lead poisoning in New York City in the early 1980s. And then we would work on tracing the kids and these were toddlers, two-year-old, three years old.

There were many families who were living in homeless shelters in New York City in the early 1980s. And that was really the beginning of my interest in public health and inequities. And really the marriage of medicine and public health. That had a deep and long-lasting impression on me and really stayed with me throughout my career. That early experience, I think it propelled me into medicine and to medical school and also to marry medicine and public health.

Dr. Pat Loehrer: Tell me a little bit, Deb, about your parents.

Dr. Deborah Schrag: Sure! My mother was born in the United States. She was a teacher who many years later after having three children went to law school and she became a litigator. And actually, her boss was Rudolph Giuliani.

My father is a child of World War II. He was a child of German Jewish parents who had to flee the Nazis. Probably the most interesting story is that my paternal grandfather was an OB-GYN. So, I am a fifth-generation physician.

My paternal grandfather was an OB-GYN at Charité, which is a very famous Hospital in Berlin. He was the head of OB-GYN there in the 1930s. But he had, I think he was half Jewish, and the Gestapo asked him to leave and he had to leave. He was an expert in version, which is essentially flipping babies and the setting of placenta previa.

He then left for Lebanon, where he was in the French Resistance and had a thriving OB-GYN practice in Beirut, Lebanon, during World War II. And at night, there was a curfew, and he was part of the resistance and passed secrets around from the Russians to the French, so very dramatic.

My father was born in this setting, and arrived as a new immigrant to the United States in the 1940s, where it was very hard to be a child whose parents had a German accent, given the prejudice against Germans at that time, but also went to New York City public schools, had a tremendous opportunity. It’s really kind of the classic New York immigrant success story. You know, arrived in the United States with the shirts on their back and managed to work their way to a better life and achieve success and good education through public education for all their offspring.

I will also say that my father had a public health stint. He worked in North Carolina as an alternative to going and serving in the Vietnam War, he was in the Public Health Service. And he worked in North Carolina in the textile mills and worked on a disease called byssinosis, which is also known as the brown lung. It's an occupational health disease that affects textile mill workers.

As a child, I spent many dinners, hearing about byssinosis and brown lung, and black lung. I think at an early age I really came to understand how the world wasn't fair, and how it was instilled in me early on that it was important to work to try to make things better, particularly for people who didn't have privilege.

And I think when you come from an immigrant family, and you realize how much privilege has been bestowed on you, that really leaves an indelible mark. I have to say, as Chair of Medicine at MSK, it is staggering to me the proportion of faculty here at MSK, but also at Dana-Farber, where I worked previously, we have lots and lots of immigrants who've been able to accomplish just amazing things through just motivation and drive and energy and creativity. And so, I'm a big believer in how much immigrants have powered this country.

Dr. Pat Loehrer: Deborah, are your parents still alive?

Dr. Deborah Schrag: My parents are still alive. They're both in their early 80s. And they both still live on the Upper West Side of Manhattan. So, I'm very privileged and fortunate to have living parents.

Dr. Pat Loehrer: I can imagine the pride that they have for you.

Dr. David Johnson: I just want to jump in and let our listeners know that Deb mentioned Charité in Berlin. That's the home of multiple Nobel laureates that all of us would know like Ernst Chain, who was one of the individuals involved in the development of penicillin, but Paul Ehrlich, Robert Koch, Hans Krebs, and for cancer doctors, Otto Warburg, among others. So, it truly is a world-renowned institution.

Dr. Deborah Schrag: Well, my paternal grandfather was famous for this technique called version, which essentially involves putting your stethoscope next to the uterus, figuring out where the placenta was, and then essentially trying to flip the baby without disrupting the placenta or causing any harm, which required incredible skills with a stethoscope because you had to appreciate, I guess, the placental vessels.

I'm not aware that this skill is still in existence, it was an important skill to have in the 1930s. When, if you did a C-section, there was a high probability of endometritis. So, you could save the baby, but you would often lose mom to endometritis. Or you could save mom, but you might not save the baby. So, at that time it was a big deal, but thankfully no longer.

Dr. David Johnson: This is why we call it an Oncology, Etc. Our listeners didn't know that we're gonna get OB information in this particular podcast.

Dr. Deborah Schrag: Or a digression on the history of medicine. I do find that, you know, I am inspired by the generations that came before me. I think it's also true that there are many physicians who are first-generation physicians in their families and some of us are privileged to have lots of healthcare professionals and sort of feel it as a calling.

Dr. David Johnson: I think of you with many, many talents. But one of the things that I think stood out to me is, many years ago, you were in the van, talking about the financial cost of health care. I remember a very influential paper you wrote in the New England Journal, talking about the cost of treating GI cancer, colon cancer in particular. But where did your interest in that particular aspect of health care begin? What was the stimulus there? I mean, obviously you had a lot of stimulus from your family. What else?

Dr. Deborah Schrag: That's really interesting. This is a little bit of a history of oncology. At that time, I was an assistant professor and assistant attending in the GI oncology service, seeing lots of patients with colorectal cancer. And we were working on a clinical trial of a drug called ImClone C225. And that was the name of the protocol. And we were putting patients in that clinical trial. And you know what? This drug was working.

We were getting excited and the drug was moving ahead. We looked at the Phase 1 data and we launched Phase 2. We had meetings with the research protocol nurse and the research assistants, team meetings, and I would say there were about 50 people who were aware between the GI oncologists and the nurses and all the research assistants. You guys know that it takes a village and even though the villages were smaller then and it wasn't a particularly large trial, there are many, many people involved and everyone had the sense that this drug might be working.

Just for context for our younger listeners, this is back in the early aughts, and basically, the drug that we had to treat colorectal cancer was 5-FU in many different formats and Irinotecan. And that was it.

Some people thought mitomycin might work a little bit, but it was so horrible that it really barely worked. But that was what we had in our bag of tricks. So, the fact that we had this ImClone drug that eventually came to be known as Cetuximab, was remarkable.

So, here's what happened. It turned out that this is the drug made by the company ImClone. And there were some shenanigans, some insider trading. And one of the people caught up in insider trading, in addition to some people involved with the company itself was none other than Martha Stewart, sort of the famous homemaker who still publishes magazines to this day. And you may know that she actually did some time in federal prison as a result of insider trading on this drug.

I remember being a junior attending, and all the people involved in the trial and all the cancer professionals, we all knew this was working. But everyone respected the confidentiality of the situation, of the patients, and all the integrity that goes into academic medicine. And I remain inspired by the integrity of all the professionals, the doctors, the residents. These were not affluent people. I can tell you. we were not paying research assistants a whole hunk of money. They investigated every trade made by this company. There were absolutely no shenanigans or improprieties from the hard-working folks who helped bring this drug to market.

So, as this was going on, we had many patients who were not eligible for the trial who were interested in getting the trial. So, of course, we followed as this drug got FDA approved and came to market. You could check me but I believe it was February 2004, it was FDA approved.

It came out with a huge price tag. It was approximately $10,000 per month. I was mad because I was taking care of regular New Yorkers at that point. I had public school teachers, I had patients on Medicare and they couldn't afford the 20% copay. Because $10,000 a month for Cetuximab, if you have a 20% copay and you’re New York City, public school cafeteria worker, is not yet eligible for Medicare with a typical plan that a New York City public school system employee would have, that was $2,000 a month. And that did not work for one of my patients who is essentially what we used to call a lunch lady.

I was so mad that I decided to channel that anger into writing what I think is a perspective for the New England Journal called, “The Price Tag on Progress”. I wrote that piece. I know that many, many people and many of my esteemed colleagues have continued to work in that area and do research on the economics of drug pricing and there are many, many experts. I didn't stick with that. Not that it's not interesting, and not that it's not important. It's incredibly interesting and important, but I felt that the solution needed to happen in the legislature, state legislature, federal legislature.

I think that this is about social policies, and we need to advocate for appropriate health insurance programs to make it possible for people to get coverage when they have catastrophic illnesses, and we need to think about the entire approach to drug pricing in this country. I still think that's important.

I'm not convinced that what we need is more research on the topic. I think we need more policymaking and laws on the topic. I think we're still dealing with this. I'm sad to say that it's been nearly 20 years since I wrote that perspective. But I think it was motivated by frustration, not being able to get my patient what she needed, and many patients thereafter. And just the incongruity between some people benefiting from insider trading and all the good people who were doing the right thing.

Dr. Pat Loehrer: I just want to throw in one thing if I can. Len Saltz, who's one of your partners, it was a piece of that trial that he presented at ASCO talking about ImClone C225. And ironically, it had a 22.5% response rate. And Len said, it's a bummer that ImClone didn't call it C995.

Dr. Deborah Schrag: You have no idea how often we used to talk about that, joke about that in the clinic. I have another good story about that drug, which I think really illustrates something I believe and I think it's actually something that Osler said but it's also something I have to say I learned from both of you. And it has to do with listening to your patient.

So, I had a patient named Matthew, who was a young man, 34 years old. He walked into my clinic with a diagnosis of diffuse metastatic colorectal cancer with multiple bilateral pulmonary metastases, which came to light when his tennis game was off.

He was, at that time, an early employee of a newly started company called Google. And he was working on advertising algorithms, and Matt got the drug Cetuximab. And unfortunately, he was on it for quite some time. He was on it for about five or six months. But eventually, it was pretty clear that we were coming to the end of the road. And he and his wife planned a vacation. This was part of his end-of-life process planning. It was their fifth wedding anniversary in the Berkshires.

We worked so hard to get Matt to the Berkshires to a beautiful inn, and on Saturday night, my pager goes off, and Matt cannot sit up. He's weak. And he'd been complaining of terrible fatigue for weeks, to me, and I really hadn't quite figured out why Matt was so fatigued.

I mean, I just didn't understand it. And we get into this inn and I get a call from the Berkshire Medical Center, a small community hospital, 'Dr. Schrag, your patient is here. He's so weak and he can't sit up.' 'What's going on?' The ER doctor says, 'Well, he has a Chvostek sign', which is a sign of severe hypocalcemia. 'So, call me back with the calcium.' The calcium is low.

Well, I think those of your listeners who are closer to medical school know that when the calcium is low, you have to check the mag. And Matt's magnesium was 0.2. And he got some magnesium in the Berkshire Medical Center. And all of a sudden, he felt great.

He was able to go on and enjoy the second half of his fifth anniversary weekend at the Berkshire Inn and he came back. And I felt terrible because he'd been complaining to me of fatigue for six weeks and I hadn't checked his magnesium. I was like, 50 bilateral pulmonary metastases on chemotherapy. That's a fatigue explanation. Suffice it to say that we went on to start checking magnesium on everyone getting Cetuximab.

Now mind you, the drug is FDA approved and FDA labeled at this point. So, we started checking magnesium, and we find that it was low. I start getting on the phone and calling my mentors. I called Dr. Bob Mayer, who was the head of my fellowship director and was like a revered mentor to me. 'Hey, Bob, does anyone up there in Boston have low magnesium from Cetuximab?' 'We don't check magnesium.' I said, 'But can you check?'

I started calling around and that's a great example of the community of oncology. We are a community. I just started working the phones and calling friends and saying 'You guys checking magnesium for any of these folks on Cetuximab?' Suffice it to say, we figured out that their EGFR receptors in the ascending loop of Henle - so, again, back to biology and pathophysiology - the drug Cetuximab was blocking reabsorption of magnesium in the kidney, and it was Cetuximab that caused a terrible magnesium wasting. Oral magnesium did not work. You had to give it intravenously, repeatedly. And we helped eliminate fatigue for a bunch of patients.

About six months later, I showed up at ASCO with these little cardboard slides and a little poster back in the corner and put up our little case series, very little. But I'm proud to say that we changed the label of Cetuximab and it's now on the label that it causes hypomagnesemia. It might be one of my more cited papers, paradoxically. But I think it's a principle that really has stuck with me, and I've tried to impart it to all the students and residents and fellows, 'Listen to your patients because - I think it comes from Osler- they're telling you something. We have to pay attention.'

Again, I have never forgotten that. But really listening and trying to figure out how we can use our understanding of pathophysiology and what our patients tell us to ask questions and not just accept dogma and try to figure out what we can do. And you know, I couldn't have figured that out on my own. I happened to find a really smart nephrologist who happened to be able to sort of go to animal models and knew the right studies and the right people to talk to.

Dr. David Johnson: It’s one of the reasons why we are a multidisciplinary specialty. And we use the expertise of our colleagues. I think that's such a wonderful example of listening to one’s patient and it really profoundly impacted our understanding of how that drug works and renal physiology, actually.

That wraps up part one of our interview with Dr. Deborah Schrag, Chair of Medicine at Memorial Sloan Kettering Cancer Center. We hope you've enjoyed learning about her background and her early career. In part two of our conversation, Dr. Schrag will discuss her programmatic goals at Memorial Sloan Kettering, the importance of mentorship and leadership, and what it means to have joy in the profession of medicine, and, frankly, much more. So, please be sure to join us.

As always, we want to thank you for tuning in to Oncology, Etc. an ASCO educational podcast, where we will talk about just about anything and everything. So, if you have an idea for our topic or a guest, please email us at education@asco.org.

Unknown Speaker: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host the second half second half of their Oncology, Etc. interview with Mr. Paul Goldberg, the editor and publisher of the world-renowned publication The Cancer Letter. In part two, Mr. Goldberg talks about literary works he has developed outside of The Cancer Letter, his perspective on the Russian/Ukrainian conflict, and more.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Pat Loehrer: Hi, I'm Pat Loehrer, Director of Global oncology and Health Equity at Indiana University. I'm here with David Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas.

This is the second half of our two-part Oncology, Etc. A conversation featuring Paul Goldberg, who's the editor of the prestigious oncology publication, The Cancer Letter. While, part one focuses more closely on Mr. Goldberg's early life - his introduction to writing and ecology and his work with The Cancer Letter - in part two, we're going to learn more about the literary works of Mr. Goldberg which are developed outside of The Cancer Letter. We'll also learn about his insight into the Russian Ukrainian conflict. We'll pick the conversation back up with Dave asking Paul about the most important changes he's seen in oncology throughout his career.

Dr. David Johnson: What changes in oncology have you seen that have been most impressive in your mind, apart from therapeutic advances? What other changes have taken place that you've witnessed in your role as editor of Cancer Letter that you think really made a difference?

Paul Goldberg: I think there's a lot less of this kind of, I have more friends now than I've ever had before, maybe I'm just getting old and I like a lot of people. There were a lot of people that I did not like early on. For me, culturally that's a difference. I think a lot of people are thinking along the same lines. There's a language of oncology. There's an understanding of the importance of clinical trials. People are arguing about whether to randomize. It wasn't that long ago that people were wondering about whether that's even a good thing.

You mentioned Rick Pazdur. I don't know if it rises to the level of being able to say that I coined the term but the language of oncology, to some extent, is Pazdur-esque because he has gotten everybody on the same wavelength, and people do understand what it takes to get a drug to develop most of the time.

So, that would be my first observation. There’s less to argue about the fundamentals. And also, a lot of the kids I came up with are now cancer center directors.

Dr. Pat Loehrer: In one of the friendships, I think it's been really strong has been you and Otis Brawley was crucial. You guys wrote a book together. And I think part of that book, which was very interesting was the title says, First do no harm.

There are a lot of things we do in medicine that we think we're doing well, but yet, by over-testing and overtreatment, we actually don't, in the long run, help the patients or help society.

Tell me a little bit about that. You're not working on this project without us on the history of oncology. And so, the perspective of that and what are some of the most interesting historical stories that you know about?

Paul Goldberg: I think he just at one point at one of the NCI meetings might have had something to do with NSABP, he started explaining to me, the NIH Reauthorization Act of 1993, and how women and minorities’ language was bizarre in there, and the definition of minorities and definition of race.

So, here's this guy who is explaining stuff to me, which I wouldn't have really slowed down to think about because journalists generally don't slow down to think about things unless you tell them to, at least I didn't at the time. And then I said, well, this guy has been explaining stuff to me and I've been explaining stuff to him occasionally. So, it's been going on and we've been talking probably, give or take, once a day for 30 years or so.

That produced the book and the book was really funny, the first book with him. We were both wondering, where do we begin? And then I said, well, why don't we just begin with the older mastectomy? You know, the spontaneous mastectomy of a patient and he said, yeah, let's do that. So, it was like, I knew his story with which to begin. It was that kind of weird, but it was kind of fun.

Dr. David Johnson: Whose idea was the book? Was it yours or his? Was it a joint decision?

Paul Goldberg: We had been talking about that for maybe 20 years prior. And then at one point, it was very obvious because my agent even said, I think your friend and you should write a book. I think the time is now. Then I called Otis that day. But that's not a rare occasion and asked Otis to write the book and Otis said, yeah, it's time to write the book. So, we decided that we would do it.

Dr. Pat Loehrer: After 20 years, you jumped on it?

Paul Goldberg: Yeah, it was exactly like that.

Dr. David Johnson: Paul, this is a silly question. Do you actually write or do you dictate?

Paul Goldberg: I write.

Dr. David Johnson: Do you manually write or do you type?

Paul Goldberg: Yes, I type on the computer. I absolutely do.

Dr. Pat Loehrer: What do you do, Dave?

Dr. David Johnson: I actually write. I'm not a typist. I do the two-finger thing, you know?

Dr. Pat Loehrer: Yeah, I write out and then I'll type, but I write with a pencil.

Dr. David Johnson: Yeah, that's what I do as well. That's really old-fashioned.

Paul Goldberg: The young people I work with think it's pretty hilarious that I don't type correctly. But that's just not my bottleneck. My bottleneck is thinking. It's not typing. So, I'd never really learned to type properly.

Dr. David Johnson: So, you've written a lot about a wide array of different subjects. I mean, you have pointed out at the beginning, that you've written some fiction, some very successful books, it seems I came across something that you wrote on the internet. I thought it was kind of interesting, and I knew nothing about it. But you wrote a piece entitled, why every progressive should read The Good Soldier Svejk.

Paul Goldberg: Yeah, that is me.

Dr. David Johnson: I had no idea about The Good Soldier, Svejk. Maybe you could tell us about this.

Paul Goldberg: Yeah, it's kind of the fundamentals of Eastern European humor. It's also the fundamentals of all humor. It's also the fundamentals of, I would have to say, catch 22 is really impossible without Svejk.

It's basically a loosely structured novel. It's set in Prague. Svejk is the Czech national hero, kind of the Don Quixote of Prague, especially Prague. He tells old stories of, well, what it really comes down to is that he is conscripted into World War One. And he either is a complete idiot or he pretends to be a complete idiot. And that makes him a very sane person in many ways.

So, it's kind of like only a madman could survive this. But the beauty of this is that we've never really learned that he is really an idiot. And actually, he does say this, I have the honor to report that I'm a complete idiot.

So, his adventures are absolutely hilarious, and before he is conscripted, he catches dogs and sells them and just takes a mongrel dog and turns it into a terrier, by painting it black and chopping off half of its tail, that kind of stuff.

So, my mother started reading it to me, preparing me for life in the Soviet Union before there was a chance to get out. My first reading of Svejk was totally age inappropriate. And politically somewhat inappropriate. It's not an illegal sort of book. It's allowed, which is sort of a joke in and of itself because, in a totalitarian state, a book like Svejk has bragged more dissent than Bush can, who is also...

Dr. Pat Loehrer: Let me ask you this Paul, just because you brought it up and to bring it more timely to what's going on, now give us a little insight into what you think mothers and children are talking about, not only in Ukraine but also in Russia right now with this invasion that's going on? What are some of your thoughts, whatever your concerns, and just ruminate a little bit about what is in your mind?

Paul Goldberg: I keep thinking about 1968 in Moscow, in August 68, when Soviet tanks rolled into Czechoslovakia. I was nine years old, but boy I just sat down and listened, I was glued to the radio, basically listening to the voice of America and others, but I didn't know a single person who really supported that.

It's this deep feeling of shame and there's no way to hide that from anybody, children, or whoever, which is also right. At that time, actually, my mother was reading Svejk to me, which is a very appropriate book for 68. I think she started before that but here as an independent state and our leadership has decided to send tanks.

I can tell you that in 1969, during the Hockey Championship, I routed the Czechs so much. I mean, the Czech were us, they weren't them, Americans were us too. So, I was rooting for the Americans, but the Soviets beat us. But when the Czechs won against the Russians, that was the happiest day of my life, and I was like, not quite, 9.

So, it's an incredible feeling of shame and we all grew up with that. And right now, there are children all over Russia who are growing up with it. I don't know anybody who voted for Putin. I know a lot of people in Russia. Nobody I know. Maybe I never ran into anybody like that. It's just not us. It's them.

So, I guess I might as well just sort of, I grew up among the Moscow intelligence act. So, if I grew up and we had a small provincial town, maybe, definitely the feeling would be very different in the provinces over.

So, it's also, like, I'm listening to Zelenskyy speak and Russia and to the Russian people. His Russian is so much better than Putin's because Zelenskyy has read many books and Putin may have read one that was written under his name. These are the fat-faced idiots of the new nuclear bureaucracy. It's really shameful, really shameful.

There is no difference, really, that I know of between my friends there, and my friends here. Not even in age. Actually, as part of my historical stuff, I met two of the participants in the demonstration on Red Square in 1968. And I knew them fairly well, so actually, just very recently, it's my audio archive of interviews with Soviet dissidents of that time. Say, I didn't really deliberately put together that archive, I put it together to write a book but there it was, and still is.

Yeah, it hasn't changed from 1960s. It's just that there are more people, more outrage, and it's not going to go well for anybody. But Putin is one of the people for whom it's not going to go well because in Ukraine, you might be able to take Kyiv, but you're not going to be able to hold the whole of Ukraine. No way. These people are, I mean, these people my brothers culturally.

Dr. David Johnson: You wrote a book entitled, “The Yid”.

Paul Goldberg: Yeah.

Dr. David Johnson: Tell us about that. Is that from this experience that you had had?

Paul Goldberg: Slightly different, I have just finished the book that's from that experience. That's the one I've just turned in. It's called the dissident and that's coming out next year. But Yid was an interesting project for me.

I was a kid and in Moscow hanging out with my grandfather, and his various friends and my own friends, and they all spoke Yiddish, but they were all Red Army veterans. So, they're these old Jewish guys walking around with my grandfather, talking about what happened in 1943. Telling stories like, well, I took two machine gunners and we went through the swamp for three days. Then we found ourselves in the center of Leningrad, that kind of stuff.

It was just truly amazing. So, I started thinking of a way of imagining something that Stalin actually did plan to do, which was to deport all Jews. It was a kind of a holocaust that he was planning of his own. And I thought, well, what would these guys have done?

So, I wrote the comedy about Stalin's death. It begins with KGB and NKVD trying to arrest an old Jewish actor. My grandfather was a pharmacist, he was not an actor, but he did give that guy our apartment or communal flat in the center of Moscow. So, he kind of got arrested in that place. But the problem is that the arrest doesn't take place the way they usually do take place. Ths guy kills three NKVD.

Dr. David Johnson: To protect his hero he does sort of almost Spider Man-like, given your…

Paul Goldberg: Yeah, small swords number which he develops on stage. So, and then I actually, also weirdly, I was very lucky that part of my material is that my aunt comes from a very famous Jewish Intelligentsia family. And in fact, her grandfather started the Moscow Hebrews Theater, which became now the National Theatre of Israel. He was sort of a very major ethno-musicologist.

Her maiden name is Dobrushin, and that was one of the Moscow Yiddish theater playwrights. So, I was able to kind of hear the stories of my aunt telling me the stories about having seen Solomon Mikhoels, and after his trip to America, the legendary things, and they put it all together into this novel, imagining a kind of alternative history. But really, Stalin did die when Stalin died. It's just that they changed the mechanism of his death, and it's a comedy. So, it's kind of a Yiddish comedy.

Dr. David Johnson: You also wrote a book entitled, “The Chateau”, but this was more contemporary, I think, right? What was the inspiration for that book, which takes place in Florida, right?

Paul Goldberg: Right. It was my stab at Florida realism. Actually, what I did was, the characters are all fictional, and the protagonist is a journalist at the Washington Post, a little bit of a nebbish, not a little bit but very much a nebbish, gets fired for insubordination at the Washington Post, then goes over to try to write a book about his college roommate who dies mysteriously.

So, it's kind of a murder mystery. It's a kind of Florida realism. In the end, it's kind of a kleptocracy story about condo boards, which was really in America at the time. And the timeframe is right before Trump's inauguration. So, it's like Trump supporting the Soviet Jews. There's the sort of a din of, “here it comes”. And it was an interesting book to write.

I don't think I ever want to write a current - and I will write a nonfiction book - but I don't want to really write anymore about something that happens now. My model for that was Turgenev it was Fathers and Sons, so I planted it in Florida and kind of played on my fantasy of what it would be if my father was not anything like my father actually is.

Dr. Pat Loehrer: Before we wind up. Can I ask you a quick question? This comes from one of our viewers or one of our listeners. I remember when I was first dating, I would get really sweaty and nervous just calling up who would eventually turn out to be my wife. I would get that same feeling years later when I was calling a babysitter to see if she would go to take care of our kids. But the third point of terror is being interviewed by you and The Cancer Letter, and you would get sweaty palms and get really nervous. What advice would you have for someone who's being interviewed?

Paul Goldberg: I'm not a ferocious person. I just ask questions like you just did, actually, it's very strange but I wouldn't even know how to be anything but polite. Well, there are situations where you probably wouldn't want to take my calls. But you know what those situations are.

So, it's completely sort of like, not an issue. I have more friends than I have enemies by a factor of maybe 1000. It really shows, I don't think I've ever like screwed up in that way of just going after, this was the one case where I really screwed up. But this was very early, this would have been very early in my career. And now I would have just figured it out very quickly and said, oh, what the hell was I doing?

But no, I mean, I have so much respect for the people who do this work and for both of you. I have so much respect for people who serve ODAC or NCAAB, or the President's Cancer Panel, and any of these incredible groups. I have so much respect for the cooperative group system for the methodology of clinical trials. I mean, you start messing with the methodology of clinical trials. Yeah, you're gonna get me on. It wouldn't be pleasant. But you would know you're doing it.

Dr. David Johnson: I think we all agree that you've done a wonderful job of helping our field advance in so many ways, uncovering some things that aren't so good and helping us correct those mistakes. I personally want to thank you for that. I know Pat feels the same way.

Paul Goldberg: Thank you. I think I get entirely too much credit for The Cancer Letter, but it's not really been just me for a very long time. Right now, we also have the Cancer History Project and my co-editor on that is Otis Raleigh. Then The Cancer Letter operations are run by Katie Goldberg, who also happens to be my daughter, but she is also the illustrator.

Katie is the inspiration really for all the operations and she's working with Mona Mirmortazavi who's also very, very talented. On my editorial side, Matt Ong has been here for eight years. And he knows his way around oncology. Many people have dealt with him in many stories. And then there's Alice Tracy, who is an engineer, also a writer by training, and she is just a journalist with incredible talent.

Then there's, of course, Alex Carolan, who is working with the Cancer History Project. She's the staff for it. And then, of course, the web designer, David Koh, and the graphics designer, Jackie Ong. It's a big crew. It takes a lot to produce The Cancer letter and it's also really a blast.

Dr. David Johnson: One final question for you. We've asked all of our guests. We've talked a lot about your writings and your books, but if you read something recently that you could recommend to our listeners or perhaps a documentary that you've seen that you think is worthy of our time, what would you recommend to us and to our listeners?

Paul Goldberg: Well, I'm just gonna reach for a book that’s sitting in front of me right now, The Man Who Sold America. It's a story of Albert Lasker and the creation of the advertising century.

It's very interesting because one of his creations was Mary Lasker, who created the National Cancer, and it took her a while to figure it out but he taught her. He was long gone by the time this was done, but without him and the mirrors that were erected, and he taught her how to erect those mirrors and how to make it happen.

It's kind of a story of lies, lies, and lies, but then, human genius gets in there, the methodology gets put together, and everything starts happening. I mean, when they got started in this field, and this is not the book, but everybody would have a monoclonal antibody and everybody was laughing at people that had monoclonal antibodies, you know, immunology, yeah, right. Whom has Steve Rosenberg ever cured? Human genius stepped in.

Dr. David Johnson: I just clicked on Amazon to have it sent to me. It should be here by tomorrow afternoon.

Paul Goldberg: It's an interesting book about a guy with bipolar disorder, who does a bunch of weird and brilliant things.

Dr. David Johnson: Paul, thank you so much for your time this afternoon. It's been a real blast to have this opportunity to chat with you.

Paul Goldberg: Well, thank you. I'm sorry if I was being nonlinear.

Dr. David Johnson No, we appreciate your nonlinearity. Let me take the moment now and thank our listeners for tuning in to Oncology, Etc. This is an ASCO educational podcast, where we will talk about anything and everything. If you have a suggestion for a guest, you would like us to interview, please send your suggestion to education@asco.org. Thanks again. And remember, Pat is not a Russian dissident.

Dr. Pat Loehrer: Thanks, Paul. It was terrific having you, and Dave, not so much.

Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe. Let us know what you think by leaving a review. For more information visit the comprehensive education center at education.asco.org.

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View Details

In this episode, moderated by Dr. Alissa Thomas (University of Vermont), patient caregiver Ms. Sandra Klima, hospice and palliative medicine physicians Dr. Gregg VandeKieft (Providence Institute for Human Caring) and Dr. Frank Ferris (Ohio Health), and medical oncologist Dr. Charles Blanke (Oregon Health and Science University) exchange perspectives on medical aid in dying, including legal, ethical and practical aspects.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Thomas: Hello, and welcome to the ASCO Education podcast series. My name is Dr. Thomas, and I'm a Neuro-oncologist at the University of Vermont Medical Center, and Associate Professor in the College of Medicine in the Department of Neurological Sciences in Burlington, Vermont. As today's host, I will be moderating a discussion on medical aid in dying with four guest speakers, Dr. Gregg VandeKieft, who is a Palliative Care Physician, Clinical Ethicist and Executive Medical Director at Providence Institute for Human Caring in Olympia, Washington. Dr. Charles Blanke, a Medical Oncologist and Professor of Medicine at Oregon and Health Sciences University in Portland, Oregon. Sandra Klima, who is the partner and caregiver of a patient who passed away using medical aid in dying in Vermont. And Dr. Frank Ferris, who is a hospice and palliative medicine physician, as well as executive director of Palliative Medicine Research and Education at Ohio Health in Columbus, Ohio.

For consistency during this talk, we'll be using the term medical aid in dying or MAID to refer to death with dignity and physician-assisted dying. So, to begin the discussion, I'd love to hear from Sandra about your perspective as a caregiver. Can you share with us what it was like caring for your partner and what your reaction was when you learned about his wishes?

Sandra Klima: Yes. Thank you. I'm glad to participate. My partner had died of glioblastoma in April of 2018. When we found out, it was pretty shocking. The very first thing he brought up was Act 39. And initially I was very surprised and uncomfortable with it because I didn't want to think about death, I wanted to think about living. And he was very quick, Rob was very quick. We made an appointment at the funeral parlor. He wanted to get everything taken care of quickly. So I was shocked that he wanted to use Act 39. I did not feel that it was, as I said, appropriate to talk about, but he explained he had a friend who had glioblastoma and she did not take that action.

And she kept a diary and he said it was very difficult to read. And he did not want to go through that process that she went through. He didn't want to lose who he was. He wanted to die as himself instead of a short time later as a lesser person. And wanted the choice, and Act 39 gave that to him. And I respected and supported his decision once we talked about it. Cancer is a progressive disease and there comes a time when you will not be in control. Facing that and knowing it only goes downhill is scary. So having the option that looked out before the end phase is a blessing, and it is death with dignity, and that's how it feels to me.

Dr. Thomas: Thank you so much for sharing that experience. This has been a hot topic and I'd love to hear from our panel, what are some of the common misconceptions around medical aid in dying, and how is this different from concepts like euthanasia or assisted suicide?

Dr. VandeKieft: Well, for starters in the United States, all the states that allow aid in dying require the person to self administer the agent. So it's not euthanasia where somebody else administers the lethal agent. Our neighbors to the north in Canada actually do allow voluntary euthanasia and about 90% of their aid in dying individuals do it by voluntary euthanasia as opposed to self-administration. Another misconception is that it is heavily targeting the most vulnerable and disenfranchised, when in fact data from Oregon and Washington really indicate that it's mostly the well-educated, economically privileged who tend to utilize the aid and dying acts. And so there's actually been some questions in recent years about equity in rural areas and for other people who have difficulty accessing aid in dying,

Dr. Blanke: I'd love to reinforce that point. So, the Oregon data suggests that 74% of participants have at least some college, and almost 99% actually have medical insurance, although getting the insurance company to actually pay for the drugs is a different issue. I'd like to also suggest that opponents of death with dignity say that it violates the Hippocratic Oath, which I do not believe it does. Death with dignity deaths make up a tiny minority of overall deaths in any of the states where it is legal, and a good chunk of patients, somewhere between 30% and 60%, get the prescription and never even take it. So, I like to say that the act fights out of its weight class. A lot of people get the power and control of having that medication, but never actually need it.

Dr. Thomas: I understand there are a number of safeguards within the law to try to protect patients and help access and protect physicians. Would you be able to touch on the safeguards?

Dr. Blanke: I'll start there if okay, and most of the other states have modeled their law after Oregon's. So first the patient has to make multiple requests over time. They have to demonstrate a continued interest in death with dignity, and the law has built in cooling off periods. The patients have to clearly understand what will happen if they actually take these drugs, and what happens in 99.5% of cases is they will die as a result. The patients have to put in a witnessed written request for medications, and one of the witnesses cannot be related by blood or marriage, cannot be the patient's doctor, and most importantly can't be in a patient's will. They cannot have a financial interest in the death. So I think those are very reasonable patient safeguards.

Dr. VandeKieft: One exception I would call out is the state of Montana, which did not actually pass the legislation or a voter initiative to legalize aid in dying. But it was a state Supreme Court decision that said it was unconstitutional to prohibit it. So they actually don't have a regulatory framework in place, but they do offer protections to physicians. If they participate, they cannot be prosecuted. But all the other states in the US that have laws have a regulatory framework, much like Dr. Blanke just described.

Dr. Thomas: That's really helpful for the legal ramifications. What are the main ethical considerations around medical aid in dying?

Dr. VandeKieft: If you think of the classic ethical framework, autonomy tends to drive a lot of the conversation, that is the patient's right to self-determination. If they choose to pursue aid in dying, even if we morally disagree with the appropriateness of it, is it our position to prohibit them from following through with it? But then many others will also look at the concepts of beneficence, that is the obligation to do good for our patients, and non-maleficence, that is the obligation to not do harm for our patients. And people on both sides of the arguments will invoke those terms. People who oppose it would say the good is to prolong life. People who support it would say the good is to give people the right to choose the best quality of life and self-determination. People who oppose would say that the death, if it's self administered is actually a harm. The supporters would say the harm is making a person suffer, when in fact they have the potential to cut that suffering short on their own terms.

And so those ethics discussions tend to get into it fairly significantly, particularly around the public policy and social aspects. And then finally, at least within the health system I work, we've really shifted our focus away from a lot of the high-level legal and ethical debates and into what do you do for the patients who request it, and how do we make sure that there's non abandonment, accompaniment through the end of life, and that we seek out the reasons that they asked about aid in dying in the first place, and figure out how we can best serve the concerns that raised the question?

Dr. Blanke: I would love to actually strengthen that last point that Dr. V just brought up. A lot of patients use up three months of their expected six months survival barely finding me. Because what happens is they went to their primary provider, asked for death with dignity. Their physician says, "I don't do it. I don't know anybody who does. Good luck with it." This is a legal option in the state of Oregon, as well as about 11 other states. And the question as to whether or not providers have the obligation to at least refer, is a strong ethical point. A lot of the state's statutes say they can't hinder referral. They have to supply records if the patient asks for it, but I'm not aware that any of them have mandatory referral. And I think the physician is ethically obliged to offer that possibility, even if they don't want to write a prescription, which of course is totally okay.

Dr. Ferris: And if I might comment, I think the other obligation here is to, for the patient, particularly with cancer, but with anybody with any diagnosis who might be choosing this pathway is to ensure that they've had very early referral for palliative care services. That all their symptoms, any issues that are causing suffering are actually being addressed. And that as you have suggested, that they are clearly accompanied by somebody without bias, who understands how to unwrap and provide counseling in all the different realms psychological, social, spiritual counseling, to make sure that they and their families or their partners are in a really good place. Everybody's comfortable with the choice. The family lives on after a situation like this, and they need to have been comfortable with that. That the choice was the appropriate one for the person, and that what we're doing is we're respecting that person's choices and they're comfortable with it.

Dr. Blanke: I totally support that. The flip side of the coin is none of the states really say what to do if you are unable to offer death with dignity. They don't certainly mandate palliative care. I see a number of patients who really don't have terminal illnesses, or they have terminal illnesses that they are not expected to die within the mandatory six months. And I think we should ask ourselves, why are they seeking death with dignity? We have to ask ourselves, "Should we be referring these patients for psychiatric care?"

Dr. Ferris: Well, and if I could come back and emphasize that, I think oncology broadly has frequently had late referral patterns to palliative care services. I've got story after story, I'm a radiation oncologist by background, having done palliative care for the last 35 years. Even in the last couple of weeks, students learning with me have said, "We tried to get referrals and the oncologist wouldn't refer. Is there anything wrong with having a partnership?" So, the oncologist continues to do their wonderful work, at the same time we're managing the patient's experience and that people understand all their options, of which this is one of them, and they have a legal right to that in 11 states, so that we do the best possible care for people.

Dr. VandeKieft: I want to amplify your point. Dr. Ferris, if people choose aid in dying as the culmination of excellent palliative or end-of-life care, that's a very different scenario than if they're choosing it in lieu of palliative care because they don't have access. And so anybody who has access to aid in dying certainly should have access to the highest quality palliative care and hospice care and behavioral health, as Dr. Blanke pointed out, to make sure that they aren't despairing for something that could be treated more readily.

Dr. Ferris: And if I could add one more point, I think there's also a palliative care evangelist who says, "Well, if you just do this a little longer, everything's going to be wonderful." Except that we haven't made a difference. We as a community need to recognize when that's the case as well. So none of us are perfect, but it's the making sure we're a really comprehensive team and able to walk with people and honor and respect their choices.

Dr. Thomas: Thank you. We've spoken a lot about some of the logistics and legal and ethical aspects. I'd love to hear about what the experience is actually like. What are the barriers that patients face when they're trying to seek out medical aid in dying? We have a caregiver here who directly experienced this. How was it trying to access this and are their barriers either individually or systemically?

Sandra Klima: When Rob made his choice, we obviously had to go to the physicians and do the two interviews and get the approvals and wait the days in between and sign all the forms. But eventually we got to go pick up this medicine. But there was one pharmacy that had the medicine. We went, made a drive there. It was far from where we were. So we went over there. We had to plan it to be when there was a physician there who would give us the medicine. So that kind of struck me as strange. So you had to schedule everything and then you get there, and I don't know if it was my paranoia or what, but you feel like everyone's looking at you from behind the counter like, "Oh, you are the people coming to get that medicine?" And it was really just a little uncomfortable.

And you feel like you were almost doing something illegal. So that is the pressure I felt during that process about that. The only other piece is once you start this process in motion, we had the hospice people and the palliative care people contact us. We had several meetings with them. We talked about it with our cancer counselor, so I was very comfortable. And most importantly, Rob was comfortable to get the medicine that he would have to take and have it with him. It gave him peace of mind. It gave him freedom to enjoy his life.

Dr. Blanke: I'll add a few practical matters. The states that have death with dignity mandate that the patient takes it through their GI tract. That usually involves swallowing. We have a number of patients who are unable to swallow, or they have GI obstruction. They're allowed to take the medication through their rectum, although that eliminates a lot of the dignity from death with dignity. But we are not allowed to use intravenous formulations. Even if the patient self-administers. We also have patients and patients with Lou Gehrig's disease or amyotrophic lateral sclerosis make up about 11% of death with dignity users. Many of those patients do not have the use of their limbs. I had one young lady who was nearly completely paralyzed. She could move her head and she could move the pinky of one hand. And I spent somewhere north of four hours simply figuring out how she could fulfill the law by self administering a drug.

Finally we put in an NG and she was able to press a syringe plunger while I held a syringe, legal in Oregon, with that single pinky. I think the law is incredibly discriminatory against people with disabilities in the interest allegedly of protecting them. Next issue is we talked about the written request, which I do think offers safeguards, but sometimes it's hard. If patients want confidentiality, which the law allegedly is interested in, they may not want their neighbor to know that they're going to do this and they may not have somebody who is able to sign the form. Finally, we have talked a little bit about finding a participating provider. That continues to be an absolutely huge barrier, particularly because it's not just one provider, it's a prescribing physician and a consulting physician. They have to find two doctors, and if they're in say a Catholic health system or they're at the VA, sometimes it's nearly impossible for them.

Dr. VandeKieft: Loop back to Miss Klima’s comment about the peace of mind that her partner experienced, and note that sometimes even just the conversation provides that. I've had numerous patients who brought the topic up, and they weren't actually asking for requests. They were just seeking information or in one instance, trying to let her family know how badly she was suffering and bringing this up was a way of demonstrating that to them. But I had a patient with ALS who brought the question up. The fact that I accepted it, spoke back to her in a respectful and supportive manner, provided her some relief.

But then when the doctors from End of Life Washington, the advocacy group who can help provide support to people in the home, came out and visited her, she responded that it alleviated her anxiety and her depression, didn't resolve them, but eased them. And that also she learned that she didn't have to act as early as she thought she would have on her own. And so I kind of jokingly said, "So meeting with doctors may have actually prolonged your life." And she laughed and said, "You know, doctor, it did, because I would've done it earlier if I hadn't met with them."

Dr. Ferris: If I can speak to what you just said back in the era of HIV and AIDS, when we had very little, I cared for more than 1,000 people out in the community. And I would say more than 60% of them asked me that question of when they got to a spot of intractable suffering, when I hastened their death. And of course that was illegal in those days. But what I was clearly able to do, is talk about palliative sedation for them, to be clear I would look after them, clear I would look after their families. And just as you have suggested, I think one of the huge issues is, "I have an option. I have an alternative here. Somebody is going to look after me. And if I've decided, if I'm going to go to medical aid in dying, if I'm going to go the palliative route, I don't have to experience the horrible part that I don't want to experience."

We need to talk about both of these openly with people, and be clear that they and their families will be accompanied in whatever the process and as you've suggested, without judgment, maintaining confidentiality. These are super important issues for people. I think about my own personal future, these things loom. I think it is people with lots of thoughts about what might happen, maybe a bit too much knowledge, who worry about the intractable nature of suffering, whatever it is, whether it's psychological, physical, spiritual. It's being able to accompany people appropriately and respect their choices.

Dr. Thomas: Right.

Dr. Blanke: So I'd like to add one more practical detail. We talked a little bit about finding providers and how difficult that is. And if you think about the challenge of finding two providers in Portland, you have to multiply that by about 100 to find any providers in Klamath Falls or Eastern Oregon. The good news is telemedicine has made our lives and the lives of our patients quite a bit easier.

Dr. Thomas: As I listen to the conversation, I'd be curious about your thoughts about health equity issues around this. You've alluded to the fact that somebody who has physical or neurologic disability may have challenges depending on where you live. It may be challenging to access. Are there other populations of patients where you worry about health equity and access to medical aid in dying?

Dr. Blanke: Well, I can comment that most of the patients find me or my colleagues who provide this through web searches. So, they have to have access to computers, which is not necessarily all that easy for all the rural residents of Oregon. Even though I told you that 99% of patients have insurance, we also mentioned that getting the insurance company to pay for the drug is very, very difficult. Hospice almost never wants to pay for it for the usual hospice- related reasons, and the drugs are about $700 in Oregon. That is a hindrance to a lot of my patients.

Dr. VandeKieft: I think being mindful of historic disenfranchised communities, people of color, Native Americans, that the healthcare system has not always treated fairly historically, and they have reasons to be suspect at times. Now this is something that usually they will seek us out as opposed to the healthcare system promoting it, but just being sensitive to the fact that we're doing something that could be perceived as problematic by communities who have historically been mistreated by the health system as well as other systems.

Dr. Thomas: I'd like to just have a better understanding of residency and the law. I think that there is written into most of these laws, you have to be a resident of the state where medical aid in dying is available. But what does that mean to be a resident, and how do states define that?

Dr. Blanke: So for us in Oregon, it's not like the classic situation where you have to demonstrate that you have a driver's license or you have to produce a gas bill in your name. The statute basically allows the prescriber to define residency in their own mind.

Dr. Thomas: What advice would you give to oncologists and other physicians who might have patients approach with questions about this? How do you talk with patients about this matter?

Dr. VandeKieft: The very first thing I respond to is... This is a very important question. I appreciate that you brought it up and that you have the [inaudible 00:20:35] and trust in me to raise the topic. But before I get into the details, I'd like to learn more about what led you to ask me about it. Would that be okay? And even that last phrase, would that be okay as intentional and that by asking permission, I'm making sure that they have agency, and demonstrating respect to them. But that approach has made a huge difference in that I have learned on many occasions, people have no intent of actually proceeding with it. As I mentioned earlier, they may simply be asking for information.

One gentleman, his response was, "Well, my buddies told me about it, and I didn't even know that was a law. And when I started to explain it, he said, oh, that sounds too much like suicide. I would never do that. And then the other woman, I referenced, she went through it and then looked at me and said, “Doctor, I would never do it.”, and looked at her daughter and son-in-law, “I just want my family to know how badly I'm suffering.” And so starting with that open-ended question is really crucial because if we make assumptions and if we start projecting our own biases onto them, we may completely miss what they're looking for and the opportunity to provide them the best services that we could.

Dr. Blanke: If I merely mention that this is an option, the patient is going to think that I'm recommending it, and I certainly don't see it that way. It's just one of many options. If we offer chemotherapy, we are not mandating that particular drug or even suggesting they get chemotherapy at all. Certainly, with the exception of palliative care, I recommend they seek that out, that I really want them to seek it out. But I think it's incumbent on the providers if they see a patient with a terminal illness to list this among the many options that are possible for the patient living in Oregon or those other 10 states. I know that's controversial.

Dr. Ferris: Well, I really want to highlight what you just said, Gregg, about the process of inquiry. To me, everybody practicing oncology, everybody practicing medicine needs to be able to model exactly the way you opened when asking any significant question, including prognosis, "When am I going to die? What about this therapy?" Because what we know, many of the times, patients aren't asking what the words specifically say, they're calling out their suffering and how can we help them? Or they've got a plan, they've got something they want to do. So that was beautiful modeling, Gregg.

Dr. VandeKieft: Dr. Blanke, he used that example of people not hearing. And one of the cases that I still struggle with a little bit, I work in a Catholic health system, so I'm not a participating physician. And we're really counseled that we shouldn't be the one to bring it up. And I had an elderly woman. I was doing a hospice home visit and she asked me how long I thought she had. And unfortunately, Dr. Ferris, I didn't think to ask her what led her to ask me the question on that occasion. And I probably should have, because I told her my prognosis and she looked at me with a profound look of disappointment and said, "I don't think I can suffer that much longer." And a couple of days later, she died very unexpectedly. She took an intentional overdose and the fact that I didn't inform her of the option of aid in dying still haunts me that I may have failed her.

Dr. Thomas: Thank you so much for sharing that. Ms. Klima, we've heard a lot from the experts. Is there advice you'd give patient to patient or caregiver to caregiver about what to ask your physicians?

Sandra Klima: You need to ask as many questions as you want and have the doctor answer you truthfully. I think when a patient is asking a doctor a question, they're asking the doctor, "What are my options?" I'm going to assume you're going to give me all the options. I'm not going to assume you're not going to tell me the options you don't like, because I want to know what are my options. I'm the one who's suffering. I'm the one who will have to make a choice. And I can tell you the choice Rob made, to use Act 39 in Vermont, was a blessing for us. It was a peaceful death that I cannot overemphasize. It was the right decision to make. It was for his decision, but it was the right decision to make.

And I think if a physician would not have told us of that option, I would be in the same situation that you felt, Gregg, where the lady took it upon herself. Because you thought through it, you had a plan, it was planned. It was a nice wind up to an ending. And I think that physicians owe it to their patients to tell them all of the options available and let the patient make a choice. I also think physicians owe it to the patient to be clear what the end phase of their life will be. Because it's not roses. If they don't do this, they have to live through that end phase, which sometimes it's horrific. And I think they need to have a clear understanding of what's to come and a clean list of all the options. And I think that should just be required, and personal choice of a physician is not on the table.

Dr. Ferris: So it's important that we explain all the options, I completely agree, that are available within the context of the law. And certainly in the Americas, in Europe, and I've been in many other countries where palliative sedation is one of those therapeutic options. Where the patients can have amnesia, the family can be well looked after. We need to describe all the available options that are within the law, in the jurisdiction in which we live. I completely agree.

Dr. Blanke: And I'll add that that actually also applies to some of the patients who want death with dignity, are suffering horribly but don't actually qualify because they have a chronic illness expected to live too long. I just saw a patient last week and we actually talked about VCED, the voluntary cessation of eating and drinking, which is something that many, many people fear, including providers, but if done properly is fantastic. She used VCED. She passed away. She died two days later and her family could not have been more thankful.

Sandra Klima: I'll chime in on that because the comparison between my father dying and Rob dying, it really just has an impression on my mind. My father did not have a diagnosis of X amount of months to live, but my father had chronic problems and he was suffering. And the death that I watched him go through and was with him for, was nothing like Rob's death. It wasn't peaceful. It haunts me today. It haunts me. My father should have been a candidate, but he wasn't. What was the point of living four more months in this miserable state?

Dr. Thomas: You know, it dawns on me that this is a very different kind of death. It is not suicide legally or medically. It's a different process than natural death from a terminal illness. And it's not even possible in every state or every country. And I imagine it is very different for the people who are left behind, for family members and caregivers to process this kind of death and bereavement after their loved one passes. Can you comment, Sandra, on how medical aid in dying affects the caregivers and affects the family and how you can prepare for bereavement and support in bereavement?

Sandra Klima: I felt that this death was anticipated, and my bereavement, the part that bothered me about Rob's end of life, was that I was unprepared for how quickly the decision was made. The decision was made quickly because he started getting paralyzed again on the side of his body. And he decided, "Today's the day." And it was three or four hours later, and it took me by surprise at how quickly the decision was going to be made. That's the only part I regret was I didn't have a strong enough plan about what was going to happen when that decision was made. That probably needs to be emphasized because you can plan all you want when it's not going to happen. But at the moment it happens, it's like a fire drill. You got to go through and get all those things lined up. And I can tell you, I felt worse for my father's death than I did for Rob's death. So even though it's a different kind of death, it was a peaceful death with dignity.

Dr. Blanke: In terms of the bereavement, I have seen all sorts of responses from patients' families initially, from those who could not be more supportive. Sometimes they even seem to want it more than the patient does, to those who actively oppose it. But in my experience, which now numbers about 205, the families are almost always on board at the end when they see how much the patient has been suffering and how much peace the actual control over the patient's life and death gives them. I always offer after the patient is gone to the family to contact me whether it's a week later or a month later, or a year later, if they have questions about the process, if they need any help in referrals. It's never happened a single time.

Dr. VandeKieft: I think back to the landmark article that Tim Quill published in the early 1990s about his patient, Diane, and how he highlighted that she ended up committing suicide. And there's kind of a shame, it's done in the shadows, and that when you have aid in dying as an option that can be brought out into a planned open manner in the way that Ms Klima is describing with her partner. And then also with the bereavement and the partners, I think we need to listen once again. I just had a case yesterday that somebody was telling me of a gentleman who got the prescription for aid in dying, but ended up not taking it and died of "natural causes."

His wife told the bereavement counselor afterwards, “That was such a relief because I was struggling terribly with the spiritual aspects of this. And I would've really had a hard time had he gone through with it.” She had not shared that with her husband or anyone else because she wanted to be so supportive of him. And it was only by the bereavement counselor, listening and opening up that she could really understand, "What are the true struggles that this family is going through and how can I meet their needs?"

Dr. Ferris: If I can comment, it doesn't matter whether people have chosen medical aid in dying. When people die, there's a loss for anybody who's a survivor. People can be comfortable with the process that occurred or not. They can perceive suffering or not. The loss leads to changes. And what we know is the transitions through the loss period that we call bereavement for different people are profound in different ways. And what we need to make sure is that people are connected with services. It's why with every patient I care for, whatever therapy provided, I do participate in ventilator withdrawal. I participate in palliative sedation. I've done this all my career. I make sure they're in the hospice system, in the United States, which provides people with 13 months bereavement support or more, because if a death occurs in a hospital without hospice care, then the patient gets a decedent phone call from the chaplain, if they're lucky, or they're lucky enough to have a physician like Dr. Blanke who says call me.

Most people don't make themselves available and you're out at sea. And we know that the suffering of a bereavement can lead to incapacitance, people depressed, not functional, people even get illnesses in the process. So there's a huge cost to society for not addressing this issue carefully. It's about the preparation, and what I try to do is get the bereavement conversation going before the person dies, so that we're talking about it and integrating it.

Sandra Klima: Right, I agree.

Dr. Thomas: Thank you all so much for this conversation. Thank you, Sandra Klima and Dr. VandeKieft and Dr. Blanke and Dr. Ferris. I think this was such an important conversation. Talking about death can be very difficult and I just appreciate the openness and sensitivity and your willingness to share these experiences. Thank you to all of our listeners. We appreciate you tuning into this episode of ASCO Education podcast.

Thank you for listening to the ASCO Education podcast. To stay up to date with the latest episodes, please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization activity or therapy should not be construed as an ASCO endorsement.

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Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host the first of two Oncology, Etc. episodes featuring Mr. Paul Goldberg, book author, investigative reporter, and Editor and Publisher of The Cancer Letter. In part one, Mr. Goldberg reflects on his two main interests − human rights and cancer, and his early career as a journalist and novelist.

If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Dr. Pat Loehrer: Hi I’m Pat Loehrer, I'm the director of the Center for Global Oncology and Health Equity here at Indiana University.

Dr. David Johnson: Hello, my name is David Johnson. I'm at UT Southwestern in Dallas, Texas. And we've got a great guest today and we’re excited about the interview.

Dr. Pat Loehrer: Yeah, it's very timely too, I think it's terrific. Before we go on to that, are there any recent books that you've read that you want to recommend?

Dr. David Johnson: Yeah, actually, I do. It's somewhat related to our topic today. I just finished a book entitled, Presumed Guilty by Erwin Chemerinsky, who's the Dean of the Law School at the University of California, Berkeley. It's actually recommended to me by a lawyer friend.

I think most of our audience knows the fourth, fifth, and sixth amendments to the Constitution are the ones that provide protection for people accused of crimes. And I think most of us are familiar with the Warren Court in the 50s and 60s, which seemed to be a very, quote-unquote liberal court that provided many of the protections that you see on TV shows, police TV shows de including the Miranda protections, but as Chemerinsky points out in his book, that really is a historical aberration, that the Supreme Court from its founding really right through today is then on the opposite side of the fence in terms of protection to the accused can many landmark rulings over the last several years, including Terry versus Ohio and City of Los Angeles vs. Ryan, have actually provided protection and sanction stop in frisk activities, limited suits against police departments to institute reform, and even provided some benefit for the use of so-called lethal chokeholds.

Smaller than I think, in light of what's happened over the last several months, really provided some insight, to me at least, about how the Supreme Court looks at the protection of the accused. I thought it was a very interesting book to read. And Chemerinsky does a great job of explaining these landmark cases in a way that simpleton like myself can understand them. So, I recommend it to you. I think you'd enjoy it.

Dr. Pat Loehrer: Yeah, there’s a book called “Just Mercy” by Bryan Stevenson. I'm not sure if you've ever had a chance to read that. It is an outstanding read. They made a movie out of it but if you get a chance to read the book, it's really terrific. Again, it talks a lot about the inequities in terms of how our court systems have prosecuted people of color for minor crimes compared to people that are in the majority here. But I think both of those would be great reads.

Dr. David Johnson: Yeah, I haven't read it, but I will.

Dr. Pat Loehrer: Yeah, it's terrific. Go for it. Going ahead in getting started, it's our great pleasure to have Mr. Paul Goldberg join us today. Anyone in oncology knows him. He is the editor of the Cancer Letter. Interestingly, he was born in Moscow and emigrated here to the United States at the age of 14, where he went to Virginia.

He got his undergraduate degree at Duke in economics. And shortly thereafter, he worked in a newspaper in Reston, Virginia, where he met his future wife. I think from there, they went to the Wichita Eagle in Kansas. His wife was actually the daughter of the founder of what was to become the Cancer Letter, Jerry Boyd. He rose to associate editor and finally editor in 1994, and publisher and editor about a decade ago.

The Cancer Letter is the go-to newspaper for us in oncology. Over 200 institutions subscribe. There's not a cancer center director in the country that does not look forward every week. One is to see if it's in there, you hope it isn't. And then if it is, you hope that there are really some platitudes in there about how wonderful you are, and then you can go ahead and read the rest of the article.

The New York Times once said that everybody who's anybody in the cancer field reads this newsletter. He's won a number of awards, including the Washington DC professional chapter of the Society of Professional Dermatologists and some Gerald Loeb awards.

His investigative work has uncovered some extraordinary events, including the Duke scandal with genomics, the ImClone scandal, as well as some of the workings of SIPRAD and MD Anderson, and I think he is really a flashlight that looks in the dark corners of our world, but also is there also to cheer on some of the accomplishments in oncology, and he knows Brawley and have written a book together, How We Do Harm.

They're also doing the history of oncology together. He's a novelist. He's a nonfiction writer, and he's an extraordinary individual. And I think we're really looking forward to spending a few minutes with you here, Paul, thank you for joining us.

Paul Goldberg: Thank you for inviting me. This is really a pleasure to spend some time with friends.

Dr. Pat Loehrer: Well, by the time this gets aired, hopefully, the crisis in Ukraine will be over. But just last week, the Russians invaded Ukraine, and I think it's very timely to hear more about this and the fact that you grew up in Moscow and Russia. Tell us a little bit about your early life, your upbringing, your family background, and what prompted your family to immigrate here to the United States?

Paul Goldberg: Well, it suddenly became possible and it was something that my father wanted to do. So, we just sort of ran as soon as we could, and certainly, I had kind of a fascinating time that I've been chewing on for many years as a novelist.

In fact, they've just turned it into a novel, which will be published not this coming summer, but the following summer, it's called The Dissident. It's about the Soviet human rights movement and it's set in 1976. By then I was here, actually. But it's kind of like material that found me and really weirdly, it's also why I’m in oncology, where I'm covering oncology.

My material kind of found me when I was in college, my drinking friend’s mother, Ludmila Alexeiava was one of the founders of the Moscow Helsinki group. Interestingly, also, my first book was about the Moscow Helsinki watch group, which is really the beginning of human rights monitoring, which is really a staple, let's say the beginning of the NGOs. It's a staple of world order to rely on people within the country that it’s being written about covering themselves in a way. It's kind of like free social media. And then, of course, enhanced greatly by social media. That was my beginning, but what was also interesting is that being a writer, and I really wanted to be a novelist, I did not want to then write nonfiction, but the material was so good that I had to jump in.

Then I also had to, like, temporarily at least, make a living doing something else. So, my former father-in-law, my dad at the time, my father-in-law, now my late former father-in-law, terrific guy, Jerry Boyd, just hired me to do some work for him. I started some stuff and he used to brag that he's the only guy who's ever made money off son-in-law.

Dr. David Johnson: But Paul, I'd be really interested to know, where did your interest in cancer begin? Was it with the Cancer Letter or had there been some interest prior to that?

Paul Goldberg: Well, when I was working for the Wichita Eagle, I kind of got interested, I always gravitated towards stories about things like insurance, for example, the value of life, anything that had to do with these sorts of very complicated philosophical questions.

That was kind of the beginning of my interest. That's why I didn't say, oh, no, this is too wonky. I don't want to have anything to do with this. Also, when people realize, it’s always interesting, there's a fair amount of that in oncology.

So, I was trying to find that, and just the complexity and the characters. You'll run into characters in oncology that you kind of wish to run into because you can have half an hour-long conversations or two-hour-long conversations or three-hour-long conversations with a lot of folks without really getting off-topic.

I mean, I get a lot of criticism from the kids and my staff telling me that I'm nonlinear in my thinking, but that's linear in this field. It's also once you get into questions like ethics, that's really the fundamentals of oncology, and that's also the fundamentals of my other interest, which is human rights.

It's also the artistic potential of this field is incredible. It just kind of grew on me but basically, it all began as a kind of a way to make up for unevenness in cash flow from writing books. And then it just became so great. If you want, I can tell you what the actual events were that made me just say, this is my field.

Dr. David Johnson: Yeah, I'd love to hear that, tell us.

Paul Goldberg: Two early ones. One of them was the beginning of the National Breast Cancer Coalition. I was initially taking a nap at the Senate hearing. I was editing a manuscript that was around 1992. I was editing a manuscript that got a little bit boring for me to just sort of listen to most things and I just fell asleep. And then I heard Fran Visco’s voice booming through and I had no idea who Fran Visco was, nobody had any idea who Fran Visco was. He was giving her “Men in Suits” speech, which is like the beginning of the patient's movement in breast cancer.

I kind of woke up and I pushed the button on my tape recorder and I got it. It was just unbelievably cool. I said, okay, so conversations that they had in the kitchens, wherever, there are these people who are talking about setting up a public movement, because there was never a public movement really of patients in oncology.

For the most part, it just felt a little bit boring. I started working around the corners of oncology around 1985-86, really, 5 or 6 years later, I was writing other books. And I was bored a little bit because there were a bunch of white guys making decisions behind closed doors. They stopped smoking a few years before, but there were still white guys behind closed doors.

Suddenly, this was something completely different. This was a public movement. And I could recognize the public movement because I'd seen them, I'd written about them, I did a story about them.

So, there was that. Then came up about that very same time, really roughly the same time came the NSABP scandal. The Cancer Letter was writing fairly short stories. Now, it has been around since 1973. So, there's just this incredibly rigorous device for monitoring the history of oncology, you can just crack the thing. But it was different because Jerry didn't write 5000-word stories. Sometimes he did but mostly he didn’t. But I can't really express myself briefly, I kind of have to go, and so, I started realizing that I could just return to this story over and over and over till I understood it, until everybody else got, so because of drilling, probably I must have written 40 stories on NSABP, maybe more. I don't know, over the years, maybe I'd written, but they just sort of said to me, hey, this is a field that's now politicized in a way that kind of sustains journalism. Controversy is unbelievably cool with this because here's a group of patients who are saying, we don't really care about NIH funding, in this case, but we care about just funding for breast cancer, and we want to do it our way. Let's do it through DOD. That was an amazing story to cover.

Then there's the story of Bernie Fisher, who was like the great man of oncology, getting kind of pulled through the wringer on this thing, and it was awesome. Then another thing started happening. I started going to the meetings, mostly I loved ODAC. I always loved ODAC and I still love ODAC. I haven't missed an ODAC for maybe 40 years or something. And the same goes of course, for NCAB.

Basically, here is a discussion as a spectator sport. Oh, wow! I kind of got passionate about this whole thing. Like, covering ODAC like Dave Johnson's ODAC was hilarious. It was a comedy show. Basically, Dave was doing some really cool stuff. Really good material, not really quotable because the jokes were a little loud. Schilsky was hilarious in the ODAC. Raghavan was really funny on ODAC. And then there was Sledge. It was also very, very funny.

So, there was this sort of a discussion of this very complicated stuff that I just started quoting. I think I must have quoted Dave's joke. I think you learned from your grandfather, a box turtle on top of a fencepost didn't get there by accident.

Dr. David Johnson: It's correct.

Paul Goldberg: Yeah, it became an obsession to just follow the characters.

Dr. Pat Loehrer: But by the way, Paul, we did interview Rick Pazdur a short time ago, and Rick did not say that Dave was funny. I just want to let you know. There was no comment about that at all. So, there's just another side to this story.

Paul Goldberg: Well, the funniest bit was when Derek Raghavan once asked, we need a translator here for southern English, why does it need a box turtle on a fence and it gets there by accident? I don't think Dave explained that that time, but I have to look at my story because I would just get into these digressions of this. I think that was also where Rich Schilsky invented the term, toxic placebo.

Dr. David Johnson: Yes, we had a study, we had to review that showed, frankly, that the placebo was actually better in some ways than the actual alleged, like the drug but with a lot of side effects.

So, Paul, you've been in the midst of a lot of really interesting stories, some would say controversial ones. ImClone, Pat mentioned earlier, the Duke scandal, where do you get your information? Without divulging.

Paul Goldberg: Well, some of them I can't really divulge. But some of them I can. The beauty of the internet now is that people can come up with an email address and send me stuff and I can actually communicate with them, and I don't even have to protect my source because I have no idea who my source is.

There was one of these stories you've mentioned, I'm not going to say which one where I could just sort of dial in the question. Like, I could just email this person whose nickname could be Mickey Mouse. I mean, I think that was Mickey Mouse. So, I can just send the question to Mickey Mouse, what happened at XYZ? I'd like to see a picture of XYZ, and then Mickey Mouse would send me something.

Dr. Pat Loehrer: This is like all the president's men?

Paul Goldberg: It's a lot like that. It's much easier because you don't have to count back or whatever and hang up, although I've done that it's kind of funny. Yeah, sometimes things show up anonymously.

Dr. Pat Loehrer: Well, that concludes part one of our intriguing interview with the cancer letter Editor Paul Goldberg. Stay tuned for part two of this conversation, where we'll learn more about the literary works of Mr. Goldberg, who's developed these works outside of the Cancer Letter.

We’ll see and hear about his incredibly important insight into the Russian Ukrainian conflict and much more. Thank you to all our listeners for tuning into Oncology, Etc. This is an ASCO education podcast where we will talk just about anything and everything. If you have an idea for a topic or a guest you'd like to see on the show, please email us at education@asco.org.

Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education that asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO the mention of any product service organization activity or therapy should not be construed as an ASCO endorsement.

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In the second of our two-part interview, Oncology, Etc. hosts Drs. Patrick Loehrer (Indiana University) and David Johnson (University of Texas) continue their conversation with two physician astronauts. Hear the incredible stories of Drs. Robert L. Satcher (MD Anderson), Ellen Baker (MD Anderson), and their lives on and off this planet.

If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org.

TRANSCRIPT

David Johnson (Dave): I'm Dave Johnson at UT Southwestern Medical Center in Dallas, Texas. I'm here with Pat Loehrer, my good friend who also happens to be the Director of Global oncology and Health Equity at Indiana University. Welcome back to Oncology, Etc. And part two of our conversation with Dr. Ellen Baker and Dr. Robert Satcher. Dr. Baker and Satcher are former NASA astronauts now practicing in Indiana Cancer Center in Houston. In Episode One, we learned about their time at NASA and some of their spaceflight adventures. In this episode, we will learn more about their post-NASA activities. We will rejoin the conversation with Pat asking Dr. Baker, how her work in space informed what she does now.

Patrick Loehrer (Pat): I know Ellen, you do work with Project ECHO, which is doing work globally. Tell us a little bit about that if you could.

Ellen Baker: You know NASA seems a million lenses away now. I sort of vaguely remember my flights which were a long time ago, more than 25 years now, but seems like yesterday. But you learn a set of skills that are transferable, I think. You come into NASA with some skills that are transferable and you leave with those. We did a lot of work with international partners, particularly in the 90s with the Russians. And I now do a lot of work with international colleagues, particularly in Africa, Central, and South America. I think that's one of my transferable skills, perhaps from NASA.

And I don't know, Bobby, it's thinking on your feet and being adaptable and not getting flustered and compartmentalizing, and quite honestly, a lot of those are skills I think you develop in medicine as well. So, there are a lot of similarities and I think a lot of benefits flow in both directions.

Dave: Could you elaborate a little bit on Project ECHO that you're involved in? What sorts of things are you doing with Project Echo?

Ellen Baker: Project ECHO is very simple, it's a video conference where you connect specialists generally at academic institutions with medical providers in rural and underserved communities where perhaps specialists are not available. And the intent is to meet on a regular basis and provide assistance and support and patient care.

So, providers in isolated or rural communities or underserved communities can care for their patients locally and patients then don't have to be referred to a tertiary care center, often very far away at great cost, etc. It was designed by a gastroenterologist at The University of New Mexico, Sanjeev Arora, who started the ECHO program, it stands for “Extension for Community Health Care Outcomes.

In New Mexico, it was at a university in Albuquerque, there were maybe 30,000 patients around New Mexico who had hepatitis C, and were not being treated except perhaps in his clinic. And he partnered with about 21 providers in the community around the state and gave them the support they needed to be able to provide care for patients with hepatitis C, locally.

This was back when the treatment was quite toxic. A lot of primary care providers didn't feel comfortable delivering this sort of care. That was sort of the beginning of ECHO, and it's since been applied to many different disciplines. At MD Anderson, we have, I don't know, I think maybe 13 Different ECHO programs for cancer prevention. That would be cervical cancer prevention, tobacco treatment, melanoma detection, also for treatment, primarily with partners who are international. We worked a lot with partners in Mozambique for the treatment of chronological cancers, breast cancers, and hematologic cancers, survivorship, palliative care, and even health care policy.

So, that's sort of the ECHO in a nutshell, and we use it quite a bit at MD Anderson, but we're just one of the hundreds of different institutions that use the ECHO model for this.

Pat: What I get from you, Ellen, though, is a sense of telemedicine and teamwork and collaboration, which is a lesson that you have to have, I think, as an astronaut to be able to do that. And Dr. Satcher, your extent and your thoughts now, how has that experience as an astronaut informed your current work?

Robert Satcher: A lot of the skills are transferable. You come in with skills like medical training that you use and build upon when you become an astronaut. And then once you leave If you come back to the medical profession, there are a lot of skills that transferred to that field too.

I see what I do is surgery, it's sort of an activity, which has a beginning and an end similar to spaceflight. And operationally, a lot of the skills that we learned as astronauts actually do transfer very well to doing surgeries.

Now, one of the things that were more recently brought over is just the whole idea of a pre-brief and a debrief, which we do for surgeries now and that wasn't the case when I was training back in medical school. So, it’s sort of a recent adaptation. But while I was at NASA, I would often think about that. Now, this actually would work really well, when doing surgeries, because it would help improve the process and actually make sure that you're making the best use of resources, people, etc, which they do a very good job of training you as an astronaut.

The telemedicine aspect of being an astronaut and taking care of people that way, we finally are doing that at MD Anderson, reluctant adapters in the cancer world to using technology sometimes like that, although in the ER, we use a lot of technology, I think there's still this notion that there needs to be a real face to face connection between doctor and patient, very strongly rooted in the cancer world, for obvious reasons, in the past, being diagnosed with cancer, and certain types of cancer, certainly, was just amounted to a death sentence, because there weren't good ways of taking care of people. But now with advances and what we've been able to do, the outlook for cancer patients is much better now than it's ever been and continuously improving.

And the pandemic is really the thing that forced this change in the cancer world and I was actually part of the effort introducing video visits at MD Anderson, which is part of something that it's going to be doing moving forward. Fortunately, the advantages of it are kind of obvious. You don't have to come into the institution for everything. It basically allows continuity of care and it potentially allows you to reach more people.

That's something that makes cancer care more equitable, which is something that needs to happen similar to how becoming an astronaut needed to be more equitable. So, a lot of these kinds of things do carry over.

The other aspect of training at NASA, which I think I can relate a lot to, was actually when I did the spacewalks and being focused on getting some specific tasks done. It felt the most like doing surgery and we were actually doing some repairs on the robotic arm because it was very technical, using these specialized instruments and having to be very careful.

Dave: How do you keep from spinning off in space by using one of those ratchet tools? Like they put tires on NASA? Do you have to use something like that?

Robert Satcher: Well, they thought of all of these things, of course. You have all of the foot restraints, other ways of stabilizing yourself. The foot restraint is one of the main ways you also have a restraint that's sort of like a, how do you describe it, it's like…

Pat: A tether?

Robert Satcher: There's the tether to keep you from floating away. But it's a restraint that's mounted on your belt, essentially. And it’s sort of a screw mechanism that makes it flexible, then you can attach it to a rail or whatnot. And then you rigidize it by screwing in the opposite direction, which is a very clever device but it helps you to keep from spinning as you say.

Dave: So, both of you have really gotten into global health in your own separate ways, I suppose. And maybe this seems obvious, but did your experiences looking back at Earth have any influence, or were you interested long before you began your NASA careers? Maybe we should start with Ellen.

Ellen Baker: I think I was interested before my NASA career. I was actually one of the only members of my medical school class who did a rotation abroad, back when almost nobody did rotations abroad as a fourth-year med student, and I like to say, well, I kind of got distracted by this NASA thing. And after I finished with that, I came back to medicine and sort of rekindled my interest in global health.

Dave: And Robert, what about you?

Robert Satcher: Yeah, I did too. We traveled. When I was growing up, we spent six months in Uganda. That piqued my interest in traveling and then when I was in medical school, the rotation in Gabon as part of the Schweitzer fellowship, and then when I was in residency too, I did several trips and a couple of attendings in orthopedic surgery when I was doing these trips to South America. And that's when I did those, and, in fact, continued when I was a faculty member at Northwestern, doing some additional trips to under-resourced countries. So, that's been sort of my interest.

Pat: Thank you for your work. It's incredible. We have a couple of questions. I wanted to talk for another couple of hours, but we weren't able to do that. Dave and I talked about books. What I do want to know from you is what is your favorite movie about space that you think is the most accurate one and maybe perhaps the best book or any other recent book that you've read? How about you first, Robie?

Robert Satcher: I don’t get any answer for the book because I haven't read a lot of Space books, but for the movie. 2001 Stanley Kubrick.

Dave: Absolutely.

Robert Satcher: At the time, they did that really well. And that was before I became an astronaut. When I go back and look at it now. I still think, yeah, just very intelligent. Obviously, it's a very thrilling movie too.

Pat: I'm not saying that I'm old, but I remember in high school and grade school reading 1984 as a futuristic novel, and 2001 came out as futuristic and now it just blows your way that it's 40 and 50 years ago, that happened. Ellen, how about you?

Ellen Baker: I have to say there are a lot of space movies out there that I don't like. I'm not a fan of space movies, where there are vehicles exploding and getting lost, and I find it a little bit offensive when the laws of physics are ignored.

So, I would say there are some really good documentaries out there. And the real thing, I think, is at least as exciting as Hollywood. So, there are a couple of really good documentaries that are actually current right now. And in terms of Hollywood, I would say the Martian was pretty good and it was a bit classic in the astronaut office.

I think they did try to obey most of the laws of physics. And there were one or two folks in the astronaut office who we thought could definitely be the Martian.

Pat: That's a great book. It has the best opening line of any book ever written, which I am not going to repeat here, but if you're curious about it, pick up the book and just read that first line there, it says it all.

Dave: Another question, we'd like to ask our guests, and we'll start this time with you, Ellen. If you could speak to your younger self, knowing what you know today, what advice would you give yourself at the beginning of your medical career that you didn't know then but you know now?

Ellen Baker: I think when you're 25, you think you have all the time in the world. And as I got older, there was so much more I wanted to do in medicine and perhaps I would have focused a little bit more, and I wasted a lot of time. I had a lot of fun. But what seems the older I get, the more I've got to cram into the time that I have left. And maybe that's just life, that would be it, I think.

Dave: I think that's an important point. I often tell residents and my colleagues that you can lose a lot of things and regain them, but you can't lose time and regain it. So, use it wisely. Robert, what would you tell your younger self?

Rober Satcher: I'd probably say there's no such thing really as perfection that that shouldn't be something that you obsess with. Over the years, I've learned that and I saw an article recently about a surgeon talking about good enough is good enough and the enemy of good is better.

I think that has a lot of practical ramifications in terms of how one should wisely spend their time. So, I would emphasize that to my younger self.

Dave: So, thank you for that. I think both bits of advice are very helpful. Well, that's really all the time we have for today. We could go on, I'm sure for several more hours. I want to thank both Dr. Baker and Dr. Satcher for their participation in an incredible conversation.

I also want to thank our listeners for tuning in on Oncology, Etc. This is an ASCO educational podcast where we'll talk just about anything. If you have an idea for a topic or a guest, please send us an email at asco.org. Pat, before we sign off, do you know why an astronaut would be a good spokesperson for the COVID vaccine?

Pat: No, I don't, Dave.

Dave: Come on! You got to know that they like booster shots.

Pat: That's good.

Dave: Alright guys, thanks a lot.

Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe bribe? Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education that asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product service organization, activity, or therapy should not be construed as an ESCO endorsement.

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In the second of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine), and Katie Stowers (Oregon Health & Science University) continue their discussion about what it takes to deliver serious news to people with cancer effectively and compassionately.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

[MUSIC PLAYING]

STEVE BURNS: Hello, and welcome to the second part of ASCO's Education Podcast focused on clinician-patient communication in the context of delivering serious news to patients and families. My name is Steve Burns. I'm an internist, hospice, and palliative care physician and associate professor of medicine at the University of Vermont College of Medicine. Once again, I'm joined by Katie Stowers, a hospice and palliative care physician and assistant professor of medicine at the Oregon Health Science University, and Tyler Johnson, a medical oncologist and clinical assistant professor of medicine at Stanford University.

In our previous episode, we spoke about what constitutes serious news, the best modalities for delivering serious news particularly in the wake of COVID, who might be the best person to deliver it, and the importance of the care team as a whole. We left off on the question, how do we prepare for delivering serious news? Let's continue the conversation.

[MUSIC PLAYING]

TYLER JOHNSON: Katie was talking about how we need to be realistic about the way that a conversation is going to impact us in addition to the way that it's going to impact the patient. And one thing that I have realized is that a headline, for those who maybe haven't had evals of training, is just a concise summary statement of sort of the big picture of what's going on, just like buying a newspaper article.

And what I have recognized is that oftentimes, I have this almost visceral reaction against giving a headline. And if I drill down just a little bit, what I find is I don't want to give the headline because then I'm really going to have to say things the way that they are, right? If I give a five minute disquisition on creatinine and edema and chemotherapy, immunotherapy, therapeutic options and whatever, right? Then, I can just like talk a cloud around things and never actually say what it is that I'm trying to say, which then gives me the advantage of feeling like I said it, but actually sort of knowing that I never actually said it, right?

And so I think the thing that the headline does is it forces me to say the thing. And then once the thing is out in the open, then we can talk about, if necessary and appropriate, some of the other nuances and whatever. But all of that is to say that often, the greatest barrier to doing that is an unwillingness to be real with myself about the information that I'm really trying to convey.

KATIE STOWERS: I think this is another really great opportunity where when partners go in together, it's easier to get into the moment if you get the opportunity. Someone with a little bit of accountability, but also somebody to help you. Maybe you're able to get out the facts and they're able to tie-in the meaning. Or you end up going bigger than your headline and they're able to say, I think what you were trying to say was dah-dah-dah-dah-dah, and help really get back to that core.

STEVE BURNS: It does say that we all, before we share serious news, making sure whoever you're going in with, you're on the same page. And having a pre-meeting is so important. And what I often do with my pre-meetings is I come up with the headline as the group, right? So we're all clear about what is that headline so that when we go in, we can, in some ways, also hold each other accountable for that headline.

KATIE STOWERS: I think also, a little bit of who's going to say it too. Like, is that something that you feel comfortable saying, or would it be easier for somebody else to say? Are there parts of it, and then parts of it that I can do, I think, can be really helpful.

TYLER JOHNSON: Yeah. It's funny, because sometimes, even though I'm pretty tuned into these things and I try really hard to do them well, I still find that there are times as a medical oncologist when the palliative care doctor who is unfailingly ever so nice and gracious about it, ends up being like the real human translator for my medical leads. So I, like, say some word cloud. And then the palliative care doctor, like Katie just said, is like, if I can say that what Dr. Johnson was trying to say right there is something in normal human English speak.

And then, as soon as they do that, I'm like, oh. But that can actually be really helpful. And again, I think it's obviously not meant to slight me. It's not meant as an affront, right? It's just sometimes, it's just kind of hard to quite get there, right, and to quite say the thing. And sometimes, having someone to help. Like, you get 80% of the way there, and then having somebody else get the other 20% is really, really meaningful.

And it also, in a strange way, kind of allows us to share the emotional burden a little bit, right? So that it doesn't feel like, oh my gosh, this is just me saying this thing. There's something about having other members of the team there to kind of hold your arms up as you're doing that that's really meaningful.

KATIE STOWERS: I worry that part of this conversation is saying like, oh. Some people are really good at this. Some people aren't. I don't think that this is a palliative care physician's good the whole time. I think this is a normal human experience. This just happened to me. This week in clinic where my patient was like, you just told me like a five minute story of things I already know. And I still don't know any more information. And I was like, oh, that wasn't really clear at all, was it?

So I mean, I think it's when our nerves pop up. When we are uncertain or unclear about what it is that we want to say or just really nervous about doing it, like, I think this is our normal human default to go back to beating around the bush. But it definitely, as Steve mentioned, is a skill that we can learn and continue to practice. And it's also really helpful to have somebody there who can hold your feet to the fire and help you in the moment.

STEVE BURNS: Katie, I'm so glad you mentioned that. I just think about even for us as palliative care physicians, who do serious illness conversations all the time, catching ourselves doing some things because we are being affected by the conversation and our well-being. I remember a couple of weeks ago, how hard it was for me to say dying and death. And I know. I've been teaching my learners say the D word. It's OK. It's direct. It's straightforward. And then all of a sudden, I was in the middle of the conversation and I noticed I was struggling saying death.

And so again, just to say we are human, that these conversations affect us. And having team support is so helpful in the moment. Because the chaplain who I was with said, what we're saying is we're worried that she's dying. And I was like, oh thank god. She said it.

TYLER JOHNSON: And the other thing too, right, is that I think it's helpful in a sense to recognize that the difficulty with giving a headline or with saying death or dying or whatever is an impulse borne of human compassion. I mean, it's not because we're bad people. It's because we have good hearts and because short of maybe clergy members, there's really nobody else in the way that human ecosystems are set up that does this, right? It's just a hard thing to do.

And recognizing that it's hard and recognizing that we ourselves are having a hard time with it, is not some failing of doctoring. I would say that actually, this is one of those weird instances where having that consistent struggle, that should be a tension that should define part of how we doctor. Because if the tension goes away, that's actually more worrisome than if the tension continues to be there, though we have to find productive ways to engage with it.

STEVE BURNS: Yeah. We did a study in 2016, the Vermont Hospice Study, and similar to actually, what Cambia Health Foundation found, why people don't engage in serious illness conversations. And one of the biggest reasons was taking away hope or hurting people's feelings and in causing emotional distress.

We also know with the literature that most patients, up to like 90%, 95%, want to know the truth because it helps them better make decisions. And I think we can deliver prognosis in a compassionate way. And I think practicing that in the kind and caring way that's person-centered, asking them, what do you know? Is it all right if we talk about this right now? Delivering in a headline and responding to emotion can help make that a more compassionate conversation. Although it still doesn't take away the human feeling that I'm worried I'm going to hurt someone in this conversation.

TYLER JOHNSON: Almost always in my experience, patients who have metastatic disease, or for some other reason, disease that is known from the get-go to be incurable, in one of our first discussions, they will ask some version of the question of how long do I have, or what are things going to look like going down the road?

There's good evidence to demonstrate, and it has also been my personal experience, that we're really bad at answering that question at the time of diagnosis, right? Because we don't know anything about the biology of the tumor, the response of chemotherapy, what the molecular markers are. There's a whole host of things that just make it so we almost always cannot answer the question accurately even if we try.

And so what I will usually do is I will tell patients, I'll say, when they ask some version of that question, I'll say, look. I need you to know that, first of all, I can't answer that question right now. I'm not obfuscating. It's just, I would be lying if I gave you an answer because we just don't know. But I want to let you know that what is true is that I can usually tell when things are starting to go in the wrong direction.

And unless you ask me specifically to do otherwise, I promise you, the patient, that as soon as I recognize that things are heading in a direction that I'm concerned about, I will tell you that in so many words so that you understand what I'm talking about. And then we will have a discussion about where to go from there.

And then, when we get to that point, whether it's six weeks later or six months later, or sometimes six years later, I will say-- because I do this with all my patients-- I'll say, do you remember when I made you that promise way back when or a few months ago, whatever it is? And then I'll say, I hope that I'm wrong here. But I'm concerned that we may now be in that place. And I want to tell you why, and then I want to talk about where to go from there. Because that then situates this difficult discussion in the context of this relationship of trust that we've been building over however long I've known the patient. And I have found that that provides a trusting context within which to have the more difficult conversation that has been really helpful.

STEVE BURNS: Noticing the time, I'm curious, how does the task of delivering bad news affect your own well-being?

TYLER JOHNSON: Just to remind people, we said this before, but I just think it's important to recognize that this being a heavy thing is normal. And recognizing that is normal and that it really is-- I mean, there's some degree to which you can do this well and that will lighten the burden to some degree. But you have to make sure that you're filling your own reservoir, right? You can't pour empathy out of an empty reservoir. And so I think you have to make sure that you're filling that in whatever the ways are that you do.

KATIE STOWERS: I just think I was thinking about that too, Steve. One other thing that I wanted to build off of, this fear and this worry that we bring to these conversations, that I'm going to send them into a tailspin of depression. Or I'm going to take away all of their hope. I think there is the other part of this that I get to see as a palliative care physician, which is the high degrees of distress that often come from not knowing this information, that's really helpful in preparing and planning for the future and almost this sense of relief.

Even when it's unfavorable, even when it's not what they wanted to hear, there's a relief in knowing and being able to do something with it. So that limbo and uncertainty. the idea that something terrible is out there or they can't prepare for it can be really distressing. And so to some degree, we're helping to heal by being able to move into some planning.

STEVE BURNS: Yeah, I totally agree that it's such an important thing to minimize the stress of uncertainty. And the other piece that I think about is these are really sacred moments where we can really connect with our patients, share the news, find out how they're doing with it, and then find out what really matters in their lives. I think that really helps be my north star when it comes to continuing the care that I'll provide for them in their families.

TYLER JOHNSON: Yeah. You know, there's a really harrowing, in some ways, but beautiful moment. And many of you will probably have read the book Just Mercy, which is written by this lawyer who's fighting for justice, particularly racial justice, for people who have been unfairly treated by the justice system in the deep South. And there's this moment towards the end of the book where a person who he had been fighting for who was on death row has just finally been executed. And he goes home and sort of just collapses crying. And then he writes really beautifully about how this moment of sort of shared vulnerability, where he kind of recognized that the reason that this was so hard was because even though he was vulnerable and broken in different ways than the person who had just been executed, it was still sort of a shared sense of vulnerability. It was what made his work hard, but also what made his work beautiful.

And I think that in a similar fashion, when we have these really difficult discussions, I think that while there is a real moral weight and difficulty to it, there is also just as you said, they also end up being some of the most meaningful, memorable, and beautiful moments.

STEVE BURNS: As a clinician, what have you learned over the years regarding communication with patients that may help others navigate scenarios where they can deliver serious news? I was just on service with a trainee. The team was delivering serious news. It was serious news around lung cancer. And the team's like, this patient's just not getting it. And we tried to explain it over and over again. And they're not getting it. And then my trainee went in and attempted and said, yes. Here's your diagnosis. We're concerned it's incurable. And you likely will die in the next year or so. And the patient said, no. I'll be fine.

So we hypothesized before going in the room with me, like, what it would be. And what it came out is maybe it's not they're not understanding it. Maybe it's emotion. So we went back in. And sure enough, my trainee did wonderful and responded to emotion and said. It must be really hard hearing this news. And the patient immediately got sad and said, I'm really scared.

And we unpacked that a little bit. And when we left the room, he said to me, yeah. That was emotion. He totally gets it. He's just upset. And so I just want to reiterate the idea, sometimes, it's not that they're not understanding it. It's that it's a lot to process. And there's a lot of feelings behind it.

KATIE STOWERS: Building on that, one of the things that I see happen a lot around emotion is the health system is not set for people to process and to come to terms with these hugely life things and life-altering things. There's not time for people to process what this means for their life to term and process that emotion. And we're constantly pushing. And sometimes it almost could feel like badgering, really trying to get a decision to come where, with some degree of autonomy and some degree of time, allowing them to really process. People, a lot of times, get to where they need to go. But it's a process of really being able to deal with.

STEVE BURNS: Yeah.

TYLER JOHNSON: Yeah, the only thing that I will add is that these conversations, when they need to happen, work best when I have been mindful of laying the groundwork for the conversation over the entire arc of the illness. Rather than thinking of, oh, this is the thing that I do right when someone is getting close to dying.

Because if you've never laid the groundwork and then you try to have the discussion, then when the person is really, really sick and in the hospital or whatever, of course, there's still a better and a worse way to do that. But even the best conversation if it's that isolated incident, in my experience, is nowhere near as good as if we have been transparent and building trust and building a sort of a shared vocabulary with the patient over the course of the illness. So that then, when they get to having to have quote, "the discussion" unquote, it becomes just one part of this longer chain rather than an isolated happening.

And that really gets to what I was saying earlier about the promise that I make my patients when they first ask that sort of big picture question. That even though I'm not in a good place to talk about it right then, that I promise them that when it comes time, I will talk with them about that with candor. That makes an enormous amount of difference. I know I had a trainee who was with me one time who was a continuity fellow with me and had heard me make that promise to a number of patients and the first time he was with that same patient when it came time to have that discussion.

And I said, well, you remember that promise that I made the first time I met you? And he could, for the first time, see all of the dots connect over the arc of the illness. It was like, whoa. Like, there's just really this power that comes. But you have to have been building it piece by piece over time.

STEVE BURNS: I think both of you are highlighting for me two reminders that I want to keep in mind every day when I'm delivering serious news. One is sort of having an agenda but being flexible with my agenda. And I remember during my training, one of my mentors said, keep your agenda out the door. Don't force your agenda on the patient, as Katie mentioned.

And yet, have a plan and still go in with that plan. The other piece that Tyler, you're reminding me of, is the importance of the arc of the conversation and how continuity. Because we build off of conversations from visit to visit. And yet, sometimes, someone else is taking over for us or they end up in a hospital or they end up in a nursing home. And it reminds me how important documentation is to convey what happened in that encounter. What was said, what was the headline that was shared, how did the patient respond, and then what was the plan. And far too often, we usually just write the results of the conversation.

TYLER JOHNSON: Yeah. One last thing that I want to put a specific plug in that I have found to be enormously important, I think all of us would agree that amidst all the conversations that we might have as part of taking care of a patient, this is the one where shared decision-making matters the most. And yet, if you ask most people, even experienced doctors, how do you engage in shared decision-making around this kind of question? That's really tricky, right? Because I think what often ends up happening is that we either default to being very prescriptive where we go in and say, well, you should do this or shouldn't do this. Or we default to being waiters with the menu. Like, well. OK, so would you like some intubation on the side of CPR?

And so, I think that both of those models are equally problematic and that the tool, the specific tool that has helped me really learn about how to do shared decision-making and even provides the specific words, is what's called the Serious Illness Conversation Guide from the Ariadne group at Harvard, which is the group founded by Atul Gawande and his colleagues.

And I think that that gives a very brief script which, I mean, you can literally almost just read. You can get a little card that you can carry in your pocket or whatever. And it gives-- and the entire conversation in most cases, takes maybe 10 or 12 minutes. But it gives you the point-by-point things to say and really allows you to meaningfully engage in shared decision-making so that you spend the first half of the conversation listening to the patient's priorities and values, and then the last maybe third of the conversation, using that to make meaningful recommendations. And so again, it's called the Serious Illness Conversation Guide. And I would really recommend to listeners that they look it up.

STEVE BURNS: That's a really great segue to what training and resources are there for clinicians and oncology trainees to improve their communication skills. The three resources that I can think about are Vital Talk, the Serious Illness Conversation Program out of Harvard and Ariadne Labs, and then they have a rich program which is from the American Academy of Communication of Health Care. All three are different ways of approaching communication skills training.

I always think about the Serious Illness Conversation Programs about raising the floor to make sure that we hit the basics. And then Vital Talk is if you want to flex your muscles or flex your skills when it comes to how do I respond to really intense emotion, or if someone's avoiding the conversation, what do I do? They train with raising the ceiling or their goals to raise the ceiling.

And Vital Talk actually came out of oncology conversations first with OncoTalk almost 20 years ago. And really thinking about not didactic-based, but practice and skills-based training. And I certainly have found it rewarding and life-changing for me, where I could actually label the things that I do every day, give myself some feedback, and then teach my trainees.

TYLER JOHNSON: And I will just add, as a medical oncologist who has both taken the Vital Talk course and now is trained and teaching Vital Talk courses, that this is not just for palliative care doctors. And I think that it is particularly-- I mean, you may not have the interest or passion to want to become a Vital Talk trainer, which is understandable if you're a medical oncologist, either a busy practice or a heavy research portfolio.

But it's just to say that they offer 1 and 2 and various iterations of courses, depending on how intensely you want to study these things. But it's just to say that the skills that they teach are concrete. This is not some sort of head in the clouds theoretical exercise. I mean, they're taught very concrete skills that you can wake up the next morning and employ you in your practice. And that I think to a point that is often counterintuitive to us, I think that we are almost afraid, as oncologists, to know about this because we think, oh my gosh. I didn't have time to engage in these long discussions. There's no way.

But my experience has actually been what this does at the end, is it actually makes you more efficient. I know that seems counterintuitive, but we spend so much time sort of beating around the bush around this stuff that we actually end up making ourselves take longer. And having really concrete skills for how to have these discussions can actually make your practice more efficient for things that otherwise can really eat up a lot of time.

KATIE STOWERS: I do a lot of teaching in Vital Talk incentives. It sounds like both of you do as well. But the piece of feedback that I hear from trainees that come take courses-- and I do a lot with oncologists and oncology fellows as well-- is oh, these are the things that I've seen in conversations at work that I never had a name for. Like, you're putting a name on something that I've seen. And maybe I've done a couple of times, but I didn't know that I was doing it this way. And especially for my colleagues who are practicing providers who teach others, they really love having a name and a framework for being able to teach these skills to others.

It's not some magic fairy dust that you either have or you don't. It's actually, here's a skill that I can pass on to you and you can practice. And I can watch for, and we can have some feedback about. And I have seen that being a really enjoyable part of doing this framework. We have that, right, for almost every other part of medicine. But because communication is something that's so innate and personal, that hasn't always been the case around communication. And so I really love that about Vital Talk, that they've taken these pieces and put names on them.

Because this is how you give communication clearly, information clearly, is the headline. This is how you show someone that you care about them. These are empathic statements. And that's something that we can use as a third language when we're going into team meetings together or when we're teaching a trainee.

STEVE BURNS: It's one of the most important skills that we do every day, and probably the most important procedure that we do on a regular basis in all of our fields.

TYLER JOHNSON: And I think you can tell from the way that the three of us have discussed delivering a headline during this podcast, that this is not like a thing that we learned seven years ago and then just sort of left in a drawer somewhere, right? Like, this is something that we're actively thinking about as we actually take care of patients every day, which is to say that it really is very applicable.

STEVE BURNS: I feel like that's the time for today. This has been a really great conversation. Thanks so much for both of your insights and participation in this episode of the ASCO Educational Podcast.

KATIE STOWERS: Thanks for inviting us. It's been great to be here.

TYLER JOHNSON: Thanks so much. It's been a pleasure.

[MUSIC PLAYING]

SPEAKER 1: Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at Education.ASCO.org.

SPEAKER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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In part one of a two-part conversation, Oncology, Etc. hosts Patrick Loehrer (Indiana University) and David Johnson (University of Texas) have a blast speaking with two physician astronauts. Hear the incredible stories of Drs. Robert L. Satcher (MD Anderson), Ellen Baker (MD Anderson), and their lives on and off this planet.

If you liked this episode, please subscribe. Learn more at https://education.asco.org, or email us at education@asco.org.

TRANSCRIPT

Patrick Loehrer: 

Hi, I'm Patrick Loehrer. I'm Director of Global Oncology and Health Equities at Indiana University.

Dave Johnson:

My name's Dave Johnson. I'm at UT Southwestern in Dallas. Patrick, we're excited to be back for another segment of ASCO's Educational Podcast, Oncology, Etc. We have two very special guests today, Drs. Ellen Baker and Robert Satcher, oncologist and former astronauts. So I predict this will be an out of this world segment.

Patrick Loehrer:

It's starting out pretty slow right now, with that one. Thank you though. 

Dave Johnson: 

Well, listen, this should be a great segment. But before we get started, do you have a favorite astronaut book? 

Patrick Loehrer: 

Well, the one I read this summer was called American Moonshot by Douglas Brinkley, and it basically took the story of John F. Kennedy and how the space race happened from 1960 and actually earlier than that, into getting onto the moon. It was really, I thought very extraordinary. 

Dave Johnson: 

So, I haven't read that yet. My favorite would be Rocket Boys by Homer Hickam. I thought that was a fantastic book about his life growing up in West Virginia and ultimately, becoming a NASA engineer and rocket scientist. So that was really great.

Patrick Loehrer: 

I read that several years ago after you recommended it. They made a movie out of that. 

Dave Johnson: 

Yeah, I think October Sky was the name of the movie. Yeah.

Patrick Loehrer:

Yeah, it's a terrific book.

Dave Johnson:

Well, why don't we introduce our guests? You want to start with Dr. Baker? 

Patrick Loehrer:

Oh, sure. It's my pleasure to introduce Dr. Ellen Baker. I have known Ellen over the years through interactions in global oncology. She was born in Fayetteville, North Carolina, graduated from Bayside High School in New York, got a bachelor of arts degree in geology from the State University at Buffalo. A doctorate in medicine for Cornell, masters in public health at UT Public Health, and then trained in internal medicine at UT San Antonio.

And during her residency, she decided to join in the NASA program as a medical officer. And it was actually, she did a residency around the same time I did, and I remember the space call for astronauts at that time. She was selected as an astronaut in may of 1984, had a variety of jobs. She's logged more than 680 hours in space and has been a mission specialist. She retired from NASA in 2011 and is Director of the MD Anderson project, Echo Program in which he does projects in rural Texas, as well as Zambia, Mozambique, in Central and South America. It's such a great pleasure to have you here today, Ellen. 

Dr. Ellen Baker: 

Thank you, Patrick. 

Dave Johnson: 

Our other guest is Dr. Robert Satcher, currently an Associate Professor in the Department of Orthopedic Oncology Division of Surgery at MD Anderson, as well. Dr. Satcher grew up in Hampton, Virginia. He's the son of a university professor and English teacher, so I'm sure they made him do all of his homework. He received a bachelor degree, as well as a PhD in chemical engineering from the Massachusetts Institute of Technology and received his MD degree from Harvard. By the way Patrick, Dr. Satcher enrolled at MIT at age 16 and graduated at the top of his class. Later, we'll find out what you were doing at age 16?

Patrick Loehrer:

I do have to interject that I was a mechanical engineer at Purdue, and it's like being in high school compared to chemical engineers.

Dave Johnson:

Yeah, there's a hierarchy in the engineering world for sure. Dr. Satcher's medical degree was followed by internship and residency in orthopedic surgery at the University of California, San Francisco. In addition, he did a post doc research fellowship again at MIT and University of California, Berkeley. And completed a fellowship in muscular skeletal oncology at the University of Florida, before joining the faculty at Northwestern in Chicago. You guys have a lot of connections it seems? Not satisfied with that massive amount of education and training, Dr. Satcher went on to NASA to train as an astronaut, culminating in a flight aboard the space shuttle Atlantis in November of 2009.

Apparently, he got a little bored cooped up in the shuttle because he took a couple of space walks, which I'd like to know more about. In fact, I read on NASA's website that he did some lubricating on one of his walks. I'm not sure what that's about, but I assume there's not a lot of gas stations in space. I also read that he repaired one of the robotic arms, which seems perfect appropriate for an orthopedic surgeon. You'll have to tell us more. Anyway, while these achievements would be enough for most people, it only begins to scratch the surface of the many accomplishments of Dr. Satcher's career to date. 

I really can't cover it all, but our audience should know that Dr. Satcher's has been involved in a number of community activities, as well, ranging from his involvement in Big Brother for Youths at Risk, counseling program, to serving as a lay minister in his church. He's also undertaken a number of medical mission trips to underserved areas in countries, such as Nicaragua, Venezuela, Nigeria, and Gabon, where he once served as a Schweitzer fellow at the Albert Schweitzer Hospital in Lambaréné. Dr. Satcher, welcome to Oncology, Etc., we very much appreciate your joining us.

Dr. Robert Satcher:

Thanks Dave. Glad to be here.

Dave Johnson:

Perhaps I'll start by asking the two of you, if you could give us just a little bit about your background, other than what we've stated and what got you interested in medicine and how you got interested in space? Dr. Baker, maybe we'll start with you?

Dr. Ellen Baker:

I've always been interested in space. I was a child of the '60s, and I think one of the very memorable parts of the '60s was the US Space Program. It was a fairly tumultuous decade in the US, I think otherwise, and the space program was really literally a shining star. However, there were no girls in the space program at that time. Right? There were no girl astronauts and so I thought about it, but it didn't seem like it was even possible. I come from a family of medical people. My mother was a nurse, my father was a doctor, my brother is a doctor, and so that had a lot of influence, I think, in my choosing to go into medicine. And in fact, my brother is an oncologist and though I am actually not an oncologist, I've been hanging around with him long enough that some people think I'm an oncologist. So I think that's what got me pointed in that direction.

Dave Johnson:

Your brother is Larry Schulman, by the way, right? Humanitarian of the Year Award from ASCO, a couple years ago.

Dr. Ellen Baker:

It is, yes, and he is a great humanitarian. I was actually at my last year of medical school when I saw a little article in the New York Times that NASA was selecting new astronauts and women and minorities were urged to apply. And I kind of filed that away and went off to do my medicine residency and at the end of my residency, I applied to work for NASA as a physician. And that's how I got to Houston and to Johnson Space Center.

Dave Johnson:

Dr. Satcher, what about yourself?

Dr. Robert Satcher:

I got interested in space and being an astronaut when I was a kid too, and I was watching astronauts land on the moon. And I was sitting there listening what Ellen was saying and yeah, it was a time where all the astronauts were of course, white males and I didn't see myself there walking on the moon, but I knew it was something that I would really like to do, but didn't really see a way either, at the time. So it really was with the shuttle era that women, people from underrepresented groups finally had the opportunity to become astronauts.

And right around the same time too, was when I was starting as an undergraduate at MIT and had the good fortune of meeting Ron McNair, who got his PhD from MIT. And that was the first time I ever saw someone who looked like me, who was an astronaut and that planted the seed that maybe I could do that one day. I also come from, as you mentioned, a family that values education and we've got a number of physicians in our family. Most famously my uncle, Dr. David Satcher, who was Surgeon General of the Clinton Administration. And I always remember, this is a funny story I like to tell if he's listening.

When I was going around getting advice on whether or not I should stick with medicine or think about applying to become an astronaut, he advised me just to stick with medicine. So didn't take his advice, this is the one time I didn't, but I did take his advice, in terms of going to medical school. And I wound up applying to become an astronaut, right actually, before the Columbia accident and so they actually paused taking astronauts for a number of years. And in those years, actually that's when I went to Northwestern and was on faculty there. So they opened it up again and that's when I submitted my application and I was in Chicago and was selected from there.

Dave Johnson:

There's a number of questions that spill off from that. You guys may know David Wolf, who's an astronaut, who's from Indiana University. I had him in my clinic when he was a medical student and as I always do, I basically say, "What do you want to do when you grow up?" And he said, "I want to be an astronaut." And I just smiled and I don't think I ever went back in the room with him, I just figured, "This guy is a flake, what's going on with him?" And I think he's logged more space miles than just about anybody, he's an incredible human being. And again, if he's listening, you're terrific. David.

Patrick Loehrer:

I just have to ask this as a boyhood thing, because I did contemplate being an astronaut because I was an engineer and MD just like you were Ellen and so were you Bobby. But it hit me, one is, you have not to be afraid of heights, I think. And then, you have to be willing to go around in a circle a thousand times a minute and not throw up. But in the training there, did any of that stuff bother you or was this no big deal?

Dr. Ellen Baker:

That sounds a little like Hollywood and not so much like the real thing, actually. In the early days of the space program, they did put astronauts in rotating chairs. I'm not exactly sure why? But we don't do that anymore. I would say that the training is rigorous, but it's not unreasonable. I don't know what you think, Bobby? It's fairly predictable. And I will put a little shout out for Purdue, which maybe has one of the highest number of astronauts of any university outside the military academies. I don't know if that's true now, but 10 or 15 years ago, we just had a large number of engineers from Purdue who were in the astronaut office.

Dr. Robert Satcher:

I agree, the training is not quite how it's portrayed sometimes in the media. The question I get asked from my doctor friends a lot, "I guess you can't be claustrophobic going into space because you're in the space capsule." And that really does deter a significant number of people, probably more than myself or Ellen appreciate because I'm always surprised when I get that question.

Dave Johnson:

But I'm 100% sure I couldn't be an astronaut if claustrophobia is an issue because I can't stand to be in an elevator.

Dr. Ellen Baker:

Let me step back a little, I don't want anybody to get discouraged. But you'd be surprised at how many pilots have a fear of heights if they're not encased in an airplane. So fear of heights is not necessarily something that you might worry about if you're an astronaut. And I disagree with you Bobby, I don't think space vehicles are claustrophobic. It's not like being in a submarine, which I would find very claustrophobic. Particularly in the shuttle because we actually had great windows and great views and we didn't feel confined. I don't know what you think Bobby, but I didn't think it was like being in a cave or closet or a submarine.

Dr. Robert Satcher:

Yeah, I definitely agree with that, the views are spectacular.

Patrick Loehrer:

So William Shatner just went up and had a brief stint in space and is now considered an astronaut, but he came back with such a sense of awe. Can you describe a little bit what it's like, the view from up there and how does it leave you, particularly your first time up in space?

Dr. Robert Satcher:

The words don't completely capture it. The colors are so vivid, the view is so breathtaking. It's really impressive seeing the Earth, not only at daytime, but at nighttime and it goes beyond. It's one of a few things I always tell people, that really exceeded my expectation, in terms of what my preconceived notion of what it would be. And ever since going, that's what's so addictive about going into space, it makes you want to go back just to see that again and experience it again. The closest that I've come to seeing anything like that is, they have these new virtual reality experiences, where they actually got footage that they shot in high-def on the space station, outside the space station. It comes close, in terms of the look but it still doesn't fully capture it because the colors and everything, aren't as clear and crisp as it is when you're there. Because you're in the vacuum of space and there's nothing interfering with it and it's just spectacular.

Dr. Ellen Baker:

Yeah. I'll jump in here too and I absolutely agree with Bobby. And the other thing is, you orbit the Earth every 90 minutes, so you cover a lot of ground and you see a lot of the planet and in that one orbit, you get a sunrise and a sunset. So you orbit the Earth 16 times a day and get 16 sunrises and sunsets, so every 45 minutes the sun is either coming up or going down. It's really hard to know what time of day it is, in terms of your work day in orbit, but it's just magnificent. And it did give me a sense that we're all from the same planet and of course, it makes me wonder why we can't all get along better?

Patrick Loehrer:

I think people our age remember a few things, we remember the day Kennedy was shot. We remember the landing on the moon with Neil Armstrong. We also sadly, also remember the Challenger disaster and where we all were at that point in time. Ellen, you were an astronaut at that time.

Dr. Ellen Baker:

I was.

Patrick Loehrer:>

Can you reflect a little bit about that, if you can? I'm not sure I could do it without getting emotional, if I was there.

Dr. Ellen Baker:

Yeah, I was actually at work of course, and watching the launch and it was just devastating. Obviously, I knew everybody on board, I knew their families very well. And I have to say, we knew flying in space was risky, but we were still pretty unprepared for Challenger and for Columbia. It is something that I still think about. As weird as it might sound, I actually rescued the plant from Dick Scobee's office. He was the Commander of Challenger and I still have it growing. So it's a reminder that he was a good friend and a good colleague, it was a terrible blow, as was the Columbia accident. In that same tradition, I have African violets by my sink that were in Laurel Clark's office and Laurel was a physician who was aboard the Columbia, as well as Dave Brown, who was also a physician on the Columbia.

Dave Johnson:

That's an amazing tribute to both of your colleagues. It's very touching to hear that. I wonder if the two of you could share with us, what you actually did on your missions scientifically? How did you use your medical knowledge, if at all? And Robert, what about your oncologic knowledge, was that useful at all?

Dr. Robert Satcher:

Fortunately, no use for the oncology training in space. I got to use the orthopedic training. One of the most common problems is back pain the first few days when you're in space. We attribute it to, you're going into weightlessness and all of a sudden, there's these fluid shifts, you get more fluid in your inner discs, everybody gets taller.

Dave Johnson:

Well, let's send Patrick to space.

Patrick Loehrer:

We need to get up there soon, Dave.

Dr. Robert Satcher:

Yeah. Actually, during our visit, we measured everybody's height just so that we know what that change was and we did do a experiment actually, that my background came very useful for. We were looking at the effects of bisphosphonate on bone loss. So bisphosphonates, well, everybody knows, this is ASCO, a class of drugs, anti-absorptives, used in patients with bone metastasis. It was actually being tested in rats, thinking about countermeasures for keeping people from losing bone in long duration, space trips. Unfortunately, bisphosphonates come with a lot of effects.

But it did seem to work, in terms of the bone mass, which is induced by weightlessness in rats. And then finally, I was the crew medical officer for my group because I was the only MD up there in our crew. Ellen probably was the same in hers. So, what that involves is, NASA was one of the first places to pioneer use of telemedicine. So, you're basically, communicating with the flight surgeons on the ground every day, talking about what sort of medical issues there are with the crew and getting their recommendations for dealing with whatever it is. So yeah, being a doctor actually came very much handy.

Dave Johnson:

I was going to ask both of you. During your flights, did you encounter any medical emergencies without violating HIPAA? I mean, did you have to do an appendectomy?

Dr. Ellen Baker:

No appendectomies and fortunately, no emergencies, astronauts are pretty well scrutinized and examined before flights. And I think the best insurance against a medical problem in space is to send crews that are really fit and really healthy. And of course, there's always the risk of things like trauma, but the risk is actually fairly low. So no emergencies on my flight.

Patrick Loehrer:

There's no RVUs up there are there, that you have to worry about billing or no?

Dr. Robert Satcher:

No, we didn't have to deal with third-party payers.

Patrick Loehrer:

This is looking more and more like a job I want to pursue here, I'm going to be taller and there's no billing. This is great.

Dave Johnson:

I want to hear from Ellen, what sort of experiments she was involved in and how her medical background helped her assist with that?

Dr. Ellen Baker:

Yeah. People think, "Gee, if you're a doctor and you're an astronaut, they selected you to be a doctor in space." But in fact, astronauts are selected sort of generically. So once you come into the office, you're trained as an astronaut and Bobby and I were both mission specialists, as opposed to astronaut pilots. And so we received training on all sorts of different things. Bobby did a space walk. I trained for space walks, but never did one. We trained on the remote arm. We trained how to fix things when they were broken. I was actually a flight engineer on one of my flights.

But that aside, I was also the crew medical officer and on every flight astronauts participate in medical experiments, because we are trying to gather lots of information from very few people on the physiologic effects of space flight, particularly looking towards longer flights, perhaps back to the moon or to Mars. So I did participate as a subject, I was an operator in a few medical experiments, but the bulk of my responsibilities actually were not medical. And I think Bobby, maybe you would agree with that? We did have some flights that were designated as what I would call, space life sciences flights, but there was only a handful of them and I was not a crew member on any of those flights.

Patrick Loehrer:

Boy, I could spend another three hours on this and would love to hear more stories.

Dave Johnson:

This concludes part one of our interview with former NASA astronauts, Drs. Ellen Baker and Robert Satcher. Please be sure to tune in to part two of the interview, where we will learn more about the incredible work they're doing in their post NASA careers. Thank you for tuning in to Oncology, Etc., an ASCO Educational Podcast. If you have an idea for a topic or guest you would like us to interview, please email your suggestion to education@asco.org. Thank you for making Oncology, Etc. a part of your day.

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Thank you for listening to the ASCO Education Podcast. To stay up to date with the latest episodes, please click subscribe, let us know what you think by leaving a review. For more information, visit the Comprehensive Education Center at education.asco.org.

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The purpose of the as podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guests statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy, should not be construed as an ASCO endorsement.

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In part one of this two-part ASCO Education Podcast episode, Drs. Stephen Berns (University of Vermont), Tyler Johnson (Stanford Medicine) and Katie Stowers (Oregon Health & Science University) chat candidly about what it takes to deliver serious news to people with cancer effectively and compassionately.

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Air Date: 2/16/22

TRANSCRIPT

Steve Burns (Dr. Burns): Hello. My name is Steve Burns. And I am a Hospice and Palliative Care Specialist and Associate Professor of Medicine at the Larner College of Medicine in Vermont. I’m pleased to moderate this episode of the ASCO Education Podcast focused on clinician patient communication in the context of delivering serious news to patients and family.

I am joined Katie Stowers, a Hospice and Palliative Care Physician and Assistant Professor of Medicine at Oregon Health & Science University and Tyler Johnson, a Medical Oncologist and Clinical Assistant Professor of Medicine at Stanford University.

Well, this is a serious discussion on delivering difficult news to patients and families. It is an extremely important one that I’m glad to be having. Let’s first start with our question, what is bad news?

I’m delighted to answer the question first mostly because I have an issue with calling it bad news. It really comes down to some of the training that I had as a palliative care physician when one of my attending said, don’t assume it’s bad. And I remember an example that I had for one of my first couple of patients, where the patient, when we were explaining that she had metastatic cancer and that she was likely going to die from this illness, she said, “Oh my gosh. I’m so relieved because I’ve been looking for an answer for months.”

So what made me realize during that moment and also what my palliative care attending reminded me of is don’t assume. And this is consistent with a study that came out, I think, by Anthony Balkin like 2011 where they did a qualitative review of patients encounters with serious news and bad news. And patients actually gave feedback that said, “We don’t want the physicians to judge our news.” Again, sort of reframing that, it’s better to call it serious news rather than bad news.

Dr. Tyler Johnson (Dr. Johnson): I’ll build off of that and just say that I think it’s also important that we recognize that sometimes when we call something bad news, what that’s actually reflecting is what our experience is going to be or what we anticipate that our experience is potentially going to be, which is totally fair. It’s absolutely valid to say having to share this news is going to be a difficult part of my day. And therefore, I think of this as sharing bad news. In fact, I think that recognition is important and can lead to important reflection and even to self-compassion. We should be candid about the fact that this is a hard part of our jobs. I mean, who likes to share life-changing, sometimes devasting news with patients? Nobody wants to do that. That’s never going to be a fun part of your day.

I think, though, that it is important to recognize that that’s a different question from how the news is going to land to the patient. Sometimes those things will match up and sometimes they won’t. And it’s important for us to be circumspect and careful in the way that we think about both how the news is going to impact us and how the interaction is going to impact us and also how it’s going to impact the patient.

Dr. Burns: I’ll move to the second question, which is what is the ideal circumstance or modality, in person or video call or telehealth, to deliver serious news to patients?

Dr. Katie Stowers (Dr. Stowers): I was actually struck on reflecting on that question about the ideal modality. I think COVID has actually really changed the way that I think about that question. Pre-COVID, I would have said hands down, everybody sitting in the same room being able to reach out and touch someone or be able to see them. But COVID has actually changed that. The people who need to be there aren’t always able to be there because of hospital visiting restrictions. And being in the same room often means three layers of PPE between you and the people you’re trying to talk to when they can actually see your face.

I found some really meaningful encounters of delivering serious news that’s been able to happen virtually in a way that I think I would have really surprised about pre-pandemic. I just had a patient in clinic with me a couple weeks ago who we were sitting there face-to-face, but visitor restrictions in our cancer center still wish she couldn’t have anyone with her in the clinic.

And so we were sitting there together and she wanted information. She wanted to review information that her oncologist had given her about prognosis. And so we were going to start to talk about that, and immediately she became overwhelmed and well, let’s get my family on the phone. And I would really like somebody else to hear this information. And ultimately we realized after trying to get people on and not being able to contact them that actually the best way to do this was going to be a virtual visit where she was home with her sister, with her dog in her lap, her aunt in New Mexico and her uncle in Alaska were all able to come on. We were all able to share this information together. And it was this really lovely moment where she had all of the things that she needed, and it had nothing to do with being in clinic.

In fact, clinic brought a whole different set of stressors. And so I think the way I’ve looked at this really is different and it’s what does this person actually need? Do they need me to be able to physically touch them or do they need their support system? Do they need to be able to see my face without a mask? What is it that this individual needs? And I think that’s more of how I go in and approach thinking about the ideal circumstance now.

Dr. Johnson: Yeah. I think that there is a lot of truth to that and because we are so constrained and clinic often now. The one thing that I will mention as a practicing oncologist that I have recognized is really important, though, if you’re going to try to leverage the advantages that can come with technology is that it’s really, really important to make sure that the patient is tuned in to the kind of conversation that you’re going to be having before you launch into a discussion where you’re going to be talking about serious news. Because what we have found is that often when people are coming to see us, it’s part of a multi-hour half day or even a full day. They come in and see us. Then they get their labs drawn. They go to the waiting room. Then they go to get their chemo. Then they have to sit for a minute and be monitored afterwards. And sometimes it can be six or seven or eight hours.

The reason I mentioned that is to say that what we have found is that many of our patients, for instance, are now having video visits with us, where we can tell them. They’re like in the car driving in to get their labs done. And they love that because they’re able to save an hour or two of time instead of sitting in our waiting room, they’re doing the visit in the car. But as wonderful as that is for efficiency for somebody who’s riding the chemo train, that’s not the place that you want to be having this kind of serious discussion.

And so I think that if you know that you’re going to be having a visit that is going to involve sharing serious news, it’s really important to say, “Hey, I just want to let you know that this is going to be a particularly important discussion. Can you make sure that you’re in a quiet place where you can really focus here and have whatever family members or friends or whatever, your support that you want there so that they’re keyed in a little bit?” Because if they’re in clinic, we talk about preparing the right space. It’s better to do this in a private room in the hospital than in an Emergency Department with 27 things going on you. So by the same token, I think we have to give them the opportunity to sort of prepare the environment to allow them to have the best experience.

Dr. Burns: I agree with both you Katie and Tyler. I think about most of my work’s done in the inpatient setting and just thinking about even in the inpatient setting, making sure that even though a patient has their own private room, sometimes they don’t and they have a neighbor that they’re sharing it with and thinking about how do we create that privacy for them? How do we incorporate their loved ones, whether that’s actually using now a iPad that rolls in where you can now have a Zoom conference with their loved ones across the country or across the globe.

But the other piece is really thinking about not tacking it on to the end of your rounds, but really setting aside some time to do that. And that’s even physically having someone hold your pager, silencing your phone so that you can be present for that conversation, just like how Tyler described that in the outpatient setting.

Dr. Johnson: Yep. Totally agree.

Dr. Burns: Well, thinking about who should be involved in the conversations, do you discuss as a team, which member of the cancer care team will deliver bad news to the patient and family?

Dr. Johnson: I can maybe address this one first and then you guys can add on. I think I come at this with a slightly different perspective because I’m actually a practicing medical oncologist. I’m not a palliative care doctor. I actually think that there are important points to be made on two ends of a spectrum here. What I mean by that is that one thing that I is important is to recognize that there is more kinds of healthcare providers can be involved in these discussions than we sometimes may think.

So for instance, Manali Patel, who’s a health services researcher here at Stanford, has done a lot of really interesting work lately with lay health workers being able to help have the first parts of these discussions in terms of exploring the values and priorities and needs of the patients. And basically what she’s shown is that while there was initially a lot of skepticism, how can a layperson be involved in those discussions. After some training, these people actually do wonderfully well. I think by the same token, there are many members of the healthcare team that can help with that part.

Having said that, I do think that there is also then a part of it that most patients appreciate coming from one of their primary healthcare workers. I think that as oncologists, we’re here talking to the American Society of Clinical Oncology audience, I think it’s important that oncologists recognize that there are certain things that patients really want to hear directly from you.

And I think that in particular, some of the harder things to say, like we really don’t have other meaningful treatment options left, that phrase I don’t think land in quite the same way if it comes anywhere but from the treating oncologist because there’s always going to be this thought in the back of the patient’s mind that maybe my oncologist has something else in line or I need to talk to them later or what have you.

I think that while on the one hand, we should broaden the spectrum of people who can be involved in these discussions, I do think on the other hand that it’s important to recognize that there are some parts of this that really are most effective when coming from the treating oncologist.

Dr. Burns: Tyler, I think you hit on the importance of the relationship of the oncologist and the oncologist team with the patient and their loved ones. I often think of out this tide of care cartoon. I think it’s almost like a far side cartoon where it’s a physician who’s sharing news to a patient and says I have some really bad news. So I’m going to get someone else to say it for me. I often feel like, as a palliative care physician, I sometimes am thrown into the mix. Am I the one delivering this news? What I really enjoy is partnering with the oncologist and even joining together when we can or for me to check in with a patient after the news is delivered, just because of how important that relationship is between the patient and their oncologist.

The only other thing that I would add is I love having a team with me during those meetings. And so if I can in the outpatient center or inpatient setting, having a nurse or a social worker or a chaplain join me because sometimes I misstep and I say more than I should or I don’t notice emotion. And I think having the other interprofessional lens there to watch and observe can interrupt me, give some feedback in the moment and/or take a step back so that we make sure that patients understand on what’s going on.

Dr. Stowers: I think, Steve, the part that I love about delivering news with the team is all the things you said. And when I notice my own emotions or I feel stuck on what to say, there’s somebody there who can kick the ball and run with it for a bit so I’m able to catch back up.

I wanted to add on to something else that you were saying, Tyler, about this relationship between patient and oncologist. And I see that a lot where patients will come to me and they’re not ready to talk about things until they’ve heard it from the oncologist first. I just have got this morning this guy who got discharged from the hospital and hospice had been brought up in his visit, but he sees his oncologist on Friday and there was no way he was going there with me and how he’s able to talk to his oncologist rightly so.

I also see the flip side of it not too infrequently where the relationship that the patient has with their oncologist is they’re the gatekeepers to life prolonging treatments. And they see any discussion of worries or fears as a weakness that maybe will make it less likely for them to get those treatments. And so I also see that patient population where they see me as the place as a palliative care provider where they can talk about some of those things that they’re not ready to talk about with the oncologist. They need the oncologist to be positive treatment focused and they need another place that’s not the oncologist to talk about those things.

Dr. Burns: Yeah, Katie, I just actually had a case like this last week where a patient says that she is really tired of the chemotherapy she was getting. She has a head and neck cancer, but she was afraid to bring it up with her oncologist because, she says, “I need to be brave in front of her.” And I just thought how interesting that was. And so every time she’s in the room with the oncologist, everything’s fine, everything’s great. And then when she’s speaking to me, she’s like not everything’s fine and not everything’s great. And so I just think that the illustration of, yes, it would be great as a team, sometimes when we individually approach it, people do feel comfortable saying something differently outside of their oncology visit.

Dr. Johnson: I think that one thing that this all gets to that I think is what all of us are saying, but it’s worth articulating is that, Steve alluded to that cartoon at the beginning of this part of the discussion. The sort of underlying message from that is this idea that we as medical oncologists involve palliative care doctors if we don’t know how to do something or we’re not interested in doing it. And of course there may be times when the patient is better off with a skilled palliative care doctor doing the conversation that maybe a less skilled oncologist doesn’t know how to do so well. But that’s certainly not the optimal outcome.

The optimal outcome is that there is teamwork and a partnership between medical oncology and palliative care. I think that teamwork creates a synergy where, because you’re right, that the patient may have one face that they put on for the oncologist and a different face that they put on for their palliative care doctor. And I know there are times when I can sense as the oncologist that there is something just below the surface that they’re not quite ready to bring up to me.

And sometimes in those cases, I will say at the end of the visit, “I think this would be a really good time to touch base with the palliative care team.” And what I’m really thinking is because there’s clearly something else you need to talk about that’s not going to come out right here. So I want it to come out when you get to meet with them. Then of course, especially in those kinds of cases, having a little bit of back channels communication after the visit with me so that I can prep the palliative care doctors and let them know that I feel that there is something else there to be addressed, I think is really important.

Dr. Burns: One question to think about is how do we prepare? How do you prepare for delivering serious news? I think I will say that the first thing I like to do is do my biopsy of the situation. I know that’s quite medical to use as analogy, but I like to know who are the players? What is the prognosis? And what I need to do is do a really thorough check-in with the specialist. So oncologist or if there’s a radiation oncologist involved to check in with them and to actually check in with the patient about information preferences and/or who would like to be in the room or who they would want to be in the room. I think all of that helps prepare it.

I always use the analogy with my trainees, like a good, serious illness discussion or a good delivering of serious news is a lot of preparation, just like how we learn to put in central lines. A lot of it’s the prep and then the central line when you place it is pretty quick. And so I certainly think about delivering serious news in the same way.

Dr. Stowers: I think the part of preparing for serious news that we probably don’t think about as much is the part about preparing ourselves for giving this serious news. And Tyler, you alluded to that earlier on in the conversation of what am I bringing to this conversation? I, through a series of tough experiences when I was a new palliative care physician in a busy outpatient practice, really found myself losing the empathy that I really prided myself on having in my clinical encounters. And I walk in and be like looking at the clock, like tapping my foot as this person’s crying in front of me and like, holy smokes, what’s going on here? And I realized that I was not prepared to give this kind of news.

And so really started instituting before I knock on the door and go into the office or click the virtual visit now as it, I’m making sure how am I? Have I gone to the bathroom? Have I eaten? Am I hot? Am I cold? Like how does this patient make me feel. What are the emotions that I’m bringing up? What are the biases that I’m bringing to this about what outcomes do I really want from this conversation and doing this little mini-checklist of how am I and what am I bringing to this conversation has really helped me get a lot more centered before I walk into their room. And so I think that that should absolutely be on that checklist that we do as we’re preparing for these conversations.

Dr. Johnson: I’ll say two things building off of those great points. One is that I think, to Katie’s point, I think it’s important that we put a plug in here for a holistic evaluation of your own wellness as a doctor in the big picture perspective. And obviously, I have my own bags under my own eyes after the last two years of the pandemic. You can choose if I’m the pot or the kettle, but I recognize that I struggle with this just as much as anybody. But it’s just to say that if you’re not eating well and you’re not sleeping well and you’re not getting some exercise and you’re not taking time for yourself and you don’t have a sense of self compassion, it’s very difficult to fake empathy. It’s very difficult to pretend to be present.

And if you try, it usually just doesn’t really work. I mean, you kind of either are present or you’re not. But the issue is that you can’t summon self-care in the moment that you need it. You can maybe try to do that for a couple of days. I think that largely is what burnout is. It’s trying to magically materialize self-care as if you can do that the moment before you walk into a room and that’s just not how the human psyche works. So that’s thing number one.

The other point that I would make is that, and I feel like this is one of those things that I just have to learn a thousand times over the course of being a clinician, because no matter how many times I learn it, then I forget it and it blows up in my face and I think, oh, well, yeah, I forgot that lesson again is how important it is that the first thing I do when I get in with a patient and I’m preparing to have one of these discussions is to talk with them about what they already understand about what’s going on. Because you have some patients who you’re surprised to find that you know that they’re on end of line chemotherapy and they have overwhelming disease burden, etc., and then you ask them what’s going on. And they say, “Well, I’m just really excited for the next chemo because doc, you said that the next chemo was going to be the one that was going to make the difference.” when of course you probably think you didn’t say that.

But the point is just to say, that’s very different than if you ask the patient and they say, “You know, Doc, I so much appreciate everything you’ve done. If I’m really honest, I kind of feel like I’m dying. I think that’s where I am.” Well, those are two totally different discussions. And if you come in assuming either of those things and it’s actually the other one, then you’re either going to waste a phenomenal amount of time or it’s just going to be a terrible encounter. And I’ve made mistakes on both ends of that spectrum, which just reemphasizes for me the importance of figuring out where the patient is before I start saying anything.

Dr. Burns: And Tyler, I also think about the efficiency of these conversations. Often we are so worried it’s going to take so much time. And when you start with, what have you been told or what do you understand or what’s been going on with the big picture of your cancer, it does save time. So you don’t actually have to repeat from the top. And I will say I’ve also watched people still and I caught myself a couple times where we still ask, what do you understand? And then we still repeat the whole story.

And so I certainly encourage all of us to think like if they heard it, totally fine to move forward, but the other efficiency piece and I know all of us have been vital talk trained thinking about a headline in like a big picture. What is the big message? I always think about a headline is what is sort of the summary of the medical information and what is the impact on the future of this person’s health? Knowing that we often are pretty good with the summary of the medical information but a little less good at the impact. I always find that that helps them better understand their big picture and be able to then share the same information with their loved ones. They could easily have that catchphrase or a two-liner that they can say, guess what? The oncologist has shared this with me. I think that’s so helpful when they’re thinking about their overall care and helps them inform their goals and priorities and helps us better understand their goals and priorities.

That concludes part one of our conversation on delivering serious news. In part two, we will continue the conversation on how the care team can prepare for delivering serious news. Useful resources and more. Thank you so much to all of our listeners for tuning into this episode of the ASCO Education Podcast.

Speaker 1: Thank you for listening to this week’s episode. To make us part of your weekly routine, click subscribe. Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearningdotasco.org.

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In this Oncology, Etc. episode, Drs. Patrick Loehrer and David Johnson Speak with Drs. Lecia Sequist (Massachusetts General Hospital) and Melissa Dillmon (Harbin Clinic) on how ASCO’s Leadership Development Program (LDP) has taken them down varying paths, as well as the ways it has influenced their lives, careers, and the lives of those around them.

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Air Date: 2/1/22

TRANSCRIPT

[MUSIC PLAYING]

PAT LOEHRER: Hi, I'm Pat Loehrer. I'm director of the Center of Global Oncology here at Indiana University.

DAVID JOHNSON: And hello. My name is David Johnson. I'm at UT Southwestern in Dallas, Texas. So Pat, we've got a couple of really great guests today.

PAT LOEHRER: Yeah. I'm really excited. I've been looking forward to this.

DAVID JOHNSON: So have I. Listen. Before we get started, I have a book I want to recommend to you. This one I got over the holidays and just finished it recently. It's called The Doctors Blackwell by Janice Nimura. So as many of our listeners know, Elizabeth Blackwell was the first female physician in America. Her sister Emily also followed her into the medical profession.

Nimura really writes, I think, a fascinating biography about both ladies, particularly Elizabeth. And one point she made, and I think it's interesting, it's not really clear why Elizabeth went into medicine.

Certainly at the point that she did in the mid-1800s wasn't a profession of great reputation at that time. And, in fact, Nimura describes Elizabeth as, quote, "lacking a caring instinct," which I thought was an interesting characterization of the first female physician.

And she indicated that she was hardly a feminist. She was actually opposed to Women's Suffrage, for example. According to Nimura, she became a doctor largely just to show that she could. And then, really, the rest of her career I won't give away. The subplot is really quite interesting. I think you would find it most interesting to recommend to you and our listeners who have a particular interest in medical history.

PAT LOEHRER: Actually, I've ordered the book. I can't wait to read it.

DAVID JOHNSON: Excellent.

PAT LOEHRER: I got a book for Christmas, Lyrics by Paul McCartney. And I read through that. That's fascinating, actually. So 158 of his songs were detailed and the backgrounds for it. So that was kind of fun.

We're excited today because we're going to talk to a couple of graduates of our Leadership Development Program. That was a program of ASCO that was conceived a little over a decade ago. It's been, to my mind, one of the best programs that ASCO has done.

It has taken younger faculty and oncologists from around the country, and Dave and I were among the first leaders of the program as mentors. I think that was one of the bigger mistakes ASCO has ever done. But despite that, we have a lot of fun. There were 12 graduates each year. They all had projects they presented to the board of directors.

There were, if you will, classes and lectures throughout the year on leadership. And they all had projects. And for me, it was the best three years of my life, I think, through ASCO. It was just a lot of fun. And part of it was getting to know a lot of people, including Melissa and Lecia, who are with us today.

Lecia is a Professor of Medicine at Harvard and Mass General Hospital. She did her medical school at Harvard, residency at Brigham and Women's Hospital, fellowship at Dana-Farber.

She is currently the co-leader of the Cancer Risk Prevention and Early Detection Program at Dana-Farber and director-- I think I want to hear more about this-- she's the director of the Center for Innovation in Early Cancer Detection at MGH.

Melissa, she went to Converse College in Spartanburg, South Carolina, went to medical school at Wake Forest. Then did her internship and residency at UAB. She did her fellowship at UAB. And she now serves as the Chairman of the Department of Oncology and the Board of Directors at the Harbin Clinic. And we're so excited to have both of you here.

DAVID JOHNSON: Yeah. Very much so. And why don't we get started by just getting a little background information. Melissa, let's start with you. Can you tell us a little bit about how you got into medicine and, more specifically, why did you choose oncology?

MELISSA DILLMON: That's a great question. I was a political science major at a women's college in South Carolina and was destined for the State Department. And we used to have January terms.

And I mistakenly got put with-- and I don't think it's a mistake-- former graduate of Emigre Medical School, who is a medical oncologist in Greenville, South Carolina, for a six-week term and fell in love with medicine, fell in love with the ministry that he provided to his patients, and followed him to Bowman Gray and went back years later and told him thank you for changing my life. So that's how I got interested in medicine. I come from a long line of accountants and engineers. There is no person in my family in medicine.

PAT LOEHRER: I was an engineer. Some of the best people in life are engineers.

DAVID JOHNSON: I didn't know you drove a train.

[CHUCKLES]

PAT LOEHRER: Eat your heart out.

DAVID JOHNSON: So Melissa, before you leave, I actually grew up very close to where you practice. How did you end up in Rome, Georgia?

MELISSA DILLMON: Well, my dad and his twin are proud graduates of Georgia Tech. So he found me a job. And I said, well, I'm grown up. I was going to stay on faculty at UAB but came to Rome, Georgia and really was excited about the multispecialty group that I ended up joining. There's about 250 of us now. And kind of had the feeling of a university but in a small town. Kind of best of both worlds.

Neither of my two daughters have gone to Georgia Tech. One of them is at Georgia. Just won that national championship. But my third one, we're hoping maybe she'll be the one that goes to Georgia Tech.

PAT LOEHRER: So you stayed up and watched the game. I have to ask this, right?

MELISSA DILLMON: I did. I stayed up to the very end.

PAT LOEHRER: And so who are cheering for? Alabama or Georgia?

MELISSA DILLMON: Definitely Georgia.

PAT LOEHRER: Interesting. Good. Good.

DAVID JOHNSON: And Lecia, why don't you tell us about your background and how you got interested in oncology. And let us know if MGH has a football team.

[CHUCKLES]

LECIA SEQUIST: Oh, sure. Thanks for having me here. This is going to be a fun conversation. So I grew up in the Midwest, in Michigan. But I've been on the East Coast now for the majority of my life. And when I was a resident, I was actually in a primary care track residency program, because I thought I wanted to be a primary care physician.

And I really liked the idea of sticking with people, getting to know them over long periods of time, and kind of standing by them through the highs and the lows of their lives. Well, I was finding out in residency that primary care wasn't really like that. That was for television shows.

People change primary care doctors and move around so much, it's rare that you actually do get to take care of people for a long time, at least in a big city. And I also found that, for me, primary care was a lot of asking people to do things they didn't want to do-- exercise, lose weight, stop smoking, do this, do that.

And I always felt that I was at odds with my patients or nagging them. And then, when I would be in the hospital on oncology rotations, trying that out, I really felt like I was allied with my patients and not nagging them or pushing them, but really here we were together against this fight against cancer.

And cancer was what we were fighting together. And I just fell in love with that. So much to the disappointment of the residency program that was really trying to get people to go into primary care, I said, I've got to be a specialist. And here I am.

PAT LOEHRER: It's interesting, though, that you do risk reduction and prevention. So you're back to telling patients to lose weight and exercise again, you know?

[CHUCKLES]

LECIA SEQUIST: Yeah. I guess, in some ways that's true, although I'm not really taking care of primary care patients. But after spending a lot of years doing a more traditional medical oncology track of drug development and targeted therapies, the last five years I have switched my research over, kind of a midlife crisis situation, where I said I've got to do something different. I'm in a rut. And I started looking at new technologies for early detection. And I really enjoyed it because it's something different.

For one thing, I just felt like I was in a rut. But it's really a way to be a lot more proactive with the community and to work on issues of social justice, thinking about cancer screening, and who has access and who doesn't, and what can we do better. So I'm really enjoying that in this phase of my career.

PAT LOEHRER: Terrific. The four of us are linked because of this Leadership Development Program that the American Society of Clinical Oncology put together. And I think Dave and I are really curious whether, here it is many years later now. It's been almost 9 or 10 years later now. As you reflect on the LDP, what are some of the highlights? What did you learn about yourselves and was the program worthwhile for you?

MELISSA DILLMON: Well, I'll start. I was part of the class, 2010-2011, best class ever. And it was the second class in the Leadership Development Program. I applied for the first year's class and didn't get it. And one of my friends and partners, a radiation oncologist, who was very involved in ASCO, encouraged me strongly. Said, don't give up. Try again. And I did.

And it was instrumental in developing both my career within ASCO as well as pushing me to leadership positions in my own clinic and in my own state. And helped develop a lot of skills that have made me successful in pushing state legislative efforts. My political science background did not go away, just like her primary care roots. And so I think that the program also made friends with Pat and with Dave and with my co-classmates.

And as the years have gone by, and I've gone to ASCO, when you see that LDP ribbon on somebody's tag, you immediately have a connection with them and know that you've been through a similar experience. So I think it's been really instrumental in developing my career. And I'm currently serving as a mentor for the leadership program. So I'm living your life 10 years ago, Pat and Dave, and it's great.

DAVID JOHNSON: Oh, I'm sorry.

PAT LOEHRER: Terrific.

DAVID JOHNSON: [INAUDIBLE]

LECIA SEQUIST: I would echo what Missy was saying about how much it's influenced my career. I was in the 2011 class. So I think the year after she was. And I also applied multiple times, and I always tell people who are thinking of applying that it often does take multiple attempts to get in and not to lose faith. The selection committee does like to see that persistence. So definitely apply more than once.

I learned so much about what leadership is. I thought it was about being the best in a group of people. So then, being selected to have a certain title. And I just really learned so much during that year, that it doesn't really have anything to do with a title, although that can be a part of it for some people.

But it's just more about a style, an approach to your profession, and that you can be a leader if you are the designated head or chief of something, but you can also be a leader if you don't have that designation.

And there are many different styles and ways to lead and to help people to ultimately get a group to do the very best that they all can together. And the friends that I made that year from my co-classmates as well as you guys and Jamie, who are our leaders, are just lifelong friends and mentors.

And you know, I think it really got me thinking seriously about my choices in my career too and not to just kind of cruise through a career and see what happened and where life took you, but to really plan and to chart your own course and to make sure to reevaluate. And if it's not going the way you want it to, to rechart and replan.

DAVID JOHNSON: We had a bunch of different lectures on different topics. Was there one of the lectures or areas that was particularly beneficial to you?

PAT LOEHRER: I can think of one. I'll start out by doing this. We threw this in the second year, just for the heck of it. We did this personality testing. And I thought it was fascinating because, in my group, there was a little bit of conflict going on with one of the people in my group.

And I realized that we were both acting out our personalities. I like to look at the big picture, and he liked to just zoom in the middle one. And the other thing that I do remember is that we showed the profiles, and it turned out Dave and I were exactly opposite. And then we both said at the same time, we should be married.

[CHUCKLES]

MELISSA DILLMON: One lesson that stands out in my mind was the press preparation lesson that we received from Press Relations group at ASCO. And I think that was essential for developing skills with regards to preparing for difficult conversations and being able to redirect questions that were difficult. I use that as leader of the Government Relations Committee oftentimes.

I will also say that the other lesson that stands out in my mind is conflict resolution because, at the time, I was not chair of my department and was having significant conflicts with the current chair of my department. And that lesson helped me to go back week after week and more constructively work towards a solution and then eventually became chair of that department. So I think those two lessons gave me lifelong skills that I've used in all my leadership roles.

LECIA SEQUIST: Yes, it's amazing how 10 years later, we can still remember the specific lectures and specific comments that people made. I remember those that you were talking about Melissa, but yeah, before you had said yours, Pat, I was going to say the same thing, that personality test was extremely helpful.

And I certainly don't remember all of the different initials of the personality types. But just to understand that concept that people have different emotional skills and blind spots that very much influence how they deal with others in the workplace.

And to be able to think about that when you're having conflict with someone and think about how to take that into a strategy where you can kind of play to their strengths and understand where they're coming from, that was extremely helpful.

And then, I also think that talking in small groups with our teams about specific problems we were having or obstacles that we were facing and getting advice from others on how to overcome them, that really started me on a recurrent mission to find friends who I could share that with outside of my institution, over the course of my career.

I think that was a real exercise in how valuable that could be. It's so critical to have peer mentors that you can talk to and strategize with and get advice about how to handle something that you're struggling with at work and have people that aren't in the same room full of people or aren't living in it. So they're a little bit more objective.

DAVID JOHNSON: Let me ask a question of the two of you. Do you think your home institutions in your case, Lecia, MGH and in your case, Missy, Harbin Clinic, valued that training that you received? Did they recognize it as something that was worth the time that you spent or do you think it just something that happened and they didn't really take notice?

MELISSA DILLMON: I learned in LDP that institutions don't love you back.

PAT LOEHRER: They don't love you to begin with. Joe Simone. Joe Simone.

DAVID JOHNSON: So I take that as a no. Your institution really said, eh, OK, great. We're glad you did it, but so what?

LECIA SEQUIST: I wouldn't say that. I don't know that they said, so what? I just, I'm not sure that they-- there was no rolling out the red carpet, thank goodness you did this. But I do think it's had an institutional impact in that I have since encouraged other people to apply from my institution. And I think that only strengthens the institution, to have multiple people going through that program.

MELISSA DILLMON: So my clinic, being private practice, when I take time out, it is just a cut from my salary. There's no support given from the institution. But in order to be in positions of leadership, department chair or on the board of directors, which I later was elected to of the clinic, you have to have completed a leadership development program. And the clinic will pay for you to go do those things.

But my participation in Leadership Development Program met all those criteria. So my clinic highly values professional development classes or meetings or programs and encourages that. Even if there's no financial support necessarily, it is encouraged, if you want to assume positions of leadership within our clinic.

And so I think that it's important for institutions, whether they're private practice or university, to recognize the benefits that come from participation in a program like this.

And it was interesting as a mentor this year, we did a personality test, but this time they did an interesting look at what our priorities, our top five priorities or values are. I think it was values.

And it was a list of 300 things basically you go through. And you listed your top five values. And then you listed the values of your institution or employer. And then you wanted to look at, did they match? And did your university value what you value?

And that was a really interesting exercise to go through because a lot of these young leaders who are taking their time out to do this program did not feel that support necessarily for them seeking out this program.

PAT LOEHRER: It's no coincidence that Dave and I asked both of you to join because you both come from different places, if you will. And I think, Melissa, you've just been a rock star in terms of the community practices and so many things that you have done in the leadership roles. And Melissa's, you can't get any more prestigious in being in one of the Boston medical schools and particularly at Mass General.

But the other reason we wanted to have you come in is to talk a little bit about your perspective as women and women in leadership roles. And if you could maybe share a little bit about your thoughts and perspectives of gender leadership and what you have noticed in men in leadership roles and women and what lessons you might give to other people, particularly other women in this capacity.

MELISSA DILLMON: Well, I think we both were trained in a day. And I might be speaking for you, but when there were, at least here at the institutions where I trained, not that many women in internal medicine. Medical school was probably 45% female by the time I was in medical school.

But when you look at the faculty of those medical schools that I went to and trained at, there were very few women in positions of leadership. And so there weren't very many role models. My dean of students at Wake Forest was a female nephrologist. And so she was a huge role model for me.

And then I went to UAB, and I remember being asked in my interview, are you OK with being in a male-dominated program? Because you will be in a male-dominated program. I think there were 45 of us in my intern class, and eight of us were female. And I said, that's fine. But I had gone to a women's college, where obviously there were only women leading.

So it was a big change for me to go back into a situation where I had to assert my unique female leadership qualities, which are different, and still use those in an effective way to lead. Right now, I'm serving as a mentor also for a small liberal arts college, primarily those interested in going into medicine or nursing, and usually most of those have been female.

And so it's been a really great opportunity, because I've had very few mentors who were female, who were positive role models for me. So I think Leadership Development Program, one of the things they taught me was to go back and say thank you to your leaders and to be a leader for others. And specifically, as a female leader, I think that has been an important call for me.

After leaving Leadership Development Program, I went back and ran for the board of my clinic as the first female to be on my board. My clinic was started in the 1860s, I think right after the Civil War, and I'm still the only female on that board.

And I feel that it's important for me to stay there or to promote up more females within my clinic to be on that board because I think that having a diverse board helps in bringing different skill sets to the table. So I think Leadership Development Program gave me that courage to step up.

LECIA SEQUIST: That's inspiring. Congratulations on being the first woman and may there be more soon. Yeah. I don't know that I've felt that I was in as much of a male-dominated field up in Boston.

But certainly, leadership in my hospital and in my cancer center has been more male-dominated. And I think as I'm getting older now, I definitely appreciate-- of course, every individual has different leadership style.

So you can't just paint a broad brush and say men are this type of leader and women are that type of leader. Everyone's a little bit different. But in general, I think women do tend to have a different leadership style and one that is maybe, present company not included, one that's less talking and more listening.

And I think, when I was younger and trying to become a leader, I really felt out of peer pressure that I needed to talk more and sort of demonstrate more what a good leader I could be or what great thoughts I had.

And I've really come to embrace a more listening type of leadership, which I have been happy to say that younger women that I work with have come up to me privately and thanked me for.

And so I do think it's important to have all different types of role models for our junior faculty and all different types of styles, sort of on display and doing their best so that people can find something that matches with their own unique style to emulate.

PAT LOEHRER: One of the lessons I learned a long time ago from someone, and I loved it, a great leader is one that changes the conversation. And to your point of listening, but it's really changing the conversation, deflecting it around it so that other people are talking. But you have a little role in moving that around. And I always liked that.

MELISSA DILLMON: Today, I was listening to the National Press Conference, and I heard a definition of leadership that disturbed me. And I thought, I don't think that's my definition of leadership. So I think that defining what your type of leadership style is, is something that leadership development helped me with.

And then, once I knew what my leadership style was, then using those skills to pull together a team and achieve a goal, a common goal, not the description of leadership today, which was pushing something up a mountain and rolling over boulders and doing whatever you had to do to get your way.

I thought, well, that's not leadership, not my leadership. So I think that that was something that Leadership Development Program help me do is identify what my leadership style is and what kind of leader I want to be.

DAVID JOHNSON: So I want to follow up on a point that both of you are making in a slightly different way. And that is, who are your role models? I mean, apart from Pat and me, but who are your role models?

[CHUCKLES]

LECIA SEQUIST: I've had lots of role models over the years, and I think at the beginning, my role models were really people that I wanted to emulate and be just like them. And that probably started with Tom Lynch, who was my initial research mentor when I started in lung cancer.

And a lot of it was just the way he was with patients. I wanted to have that ability to make a patient feel just right at home from the first minute they walked in the door, which Tom is a master at.

But over time, I think my mentors or my heroes have more become people that are different than me. And I'm not trying to be like them. But I appreciate the ways in which they lead or in which they conduct something, like balancing their home life and their professional life in a way that's just different but I appreciate. And that, in lung cancer,

I would say another real big influence on my career has been Heather Wakely. She really has been my main female role model in my career. And she's given so much of her time to me and to so many to kind of sit and have personal talks and pep talks and strategies about what we're doing in our home institutions.

DAVID JOHNSON: Missy, what about you?

MELISSA DILLMON: So I would say from a professional standpoint, someone I respect and see as a mentor is actually now the female CEO of my clinic, who has been with my clinic for 20 years and worked her way up.

And I think that's because she has retained her femininity, but she is recognized as a tiger that no hospital or other clinic wants to make mad. So she has a way of leading and listening that is unique. And I have learned a lot from her over the years and watched her rise in her leadership skills as I have alongside of her.

And then, I will say from a personal perspective, one of the books I have enjoyed reading recently really talks a lot about servant leadership. And so I've really tried to identify servant leaders in my community and why it is that they're able to weather the storms of the last couple of years, for instance, and why their teams rally behind them and support them. And they're successful.

And my husband is a restaurant owner times three, opening two of those, one right before COVID and one during COVID and yet has been able to mobilize a team. And that's because he's a servant leader that will get back in the kitchen and make pastry cream if that's what needs to be done or make reservations.

And so I think during the last two years, what I have learned from that is to be a servant leader in the tough times has really helped rally my team and my clinic to be better and to continue to work, despite the challenges for our patients, for the bigger goal.

PAT LOEHRER: Love it. We recently had a guy give a talk here at IU, and the lecture was on being a visionary leader. And to be honest, it was fine. It was good, but being a servant leader and being part of a group is more important than being the one right up in front. And it's good to be a follower too as a leader.

So I really appreciate those comments. Just in a couple of sentences, I don't know if you guys could do this and reflect a little bit about your younger self. Say you're 21, and you could give yourself some advice now, what would those pieces of advice be?

LECIA SEQUIST: I think one thing, and that's the common thread I've heard among a lot of more senior people in medicine, or in any profession probably, is that the things that you think are disappointments at the time often turn out to be some of the greatest opportunities that you're faced with. You plan and you think things are going to go a certain way, and then something doesn't work out, and you're very disappointed.

But it's usually that process of how you deal with that disappointment that actually brings so much opportunity back to you. You can't see it at the moment. All you see is the disappointment. But I think that's a big lesson.

PAT LOEHRER: Terrific.

MELISSA DILLMON: So kind of similar to that, Lecia, doing our personality test this time, I wish I had done that same exact test 10 years ago, because I'd like to see what my leadership personality was 10 years ago versus now. I would not have scored as high in certain areas that I think I do now.

And I think that one of the biggest things I have learned is, I'm very much a person of tradition. And I like things to continue the way I expect them, and I like things to be planned and done in medical school in four years, done with fellowship. So I like a regimen and a routine. And I have learned over the years to be comfortable with change. And I wish I had learned that earlier and to be open to change and listening to new ideas.

I think that probably for the first few years of my practice and training, I was very much, this is the way it's done. And I think that that expressive part of my leadership had not developed yet. And I think that being open to change and looking at things in new ways, I wish I had learned that earlier.

DAVID JOHNSON: So we only have a few minutes left. And what we have done in previous episodes, we like to ask our guests to tell us the book they've read recently or maybe a documentary or something they've watched recently that they would recommend to our listeners.

LECIA SEQUIST: I really enjoyed the book The Four Winds by Kristin Hannah. That is a historical fiction about the Great Depression and the Dust Bowl and the migration of farmers from the Central Plains out to the West. And it was a really captivating book with a female protagonist. I enjoyed it quite a bit.

MELISSA DILLMON: It's funny. I read that one just a few months ago. I love historical fiction, but I would say recently, and I know it's not a new book, Andre Agassi's Open, his autobiography, I found fascinating.

I love sports, but it was very interesting to me to see how someone who's thrown into the limelight at a very early age and the pressure put on him by his parents and how that affected the course of his life.

I found it a fascinating book and very insightful. And I like to play tennis, but I'm not a tennis player. But I found it interesting as a parent, who's got several sports-minded children, it gave me some lessons about parenting and how to just raise your children and where the focus should be.

DAVID JOHNSON: Both my wife and daughter had been tennis players. I'm sure they would both love reading that book. Thanks for that recommendation.

LECIA SEQUIST: It's a great book.

DAVID JOHNSON: Well, that's really all the time we have for today. And Pat and I want to thank both of you, Missy and Lecia, for joining us. It's been a terrific conversation. Thank you so much for what you do. You're both, in our minds, fantastic leaders. You were when you arrived, and you certainly have been ever since. So thanks so much for that.

I want to thank all of our listeners for tuning in. This is Oncology, Et Cetera an ASCO Educational Podcast. And we really have talked about anything and everything. And we'd like to continue to do so. So if you have an idea for a topic or a guest, please email us at education@asco.org.

Thanks again for tuning in. And Pat, I just wanted you know I've ordered a chicken and an egg from Amazon.

[CHUCKLES]

PAT LOEHRER: It's because you couldn't quite make up your mind which was going to come first. I love it. I love it. You're the best. Thanks for doing this. And Dave, it's good to see you, as always. Take care.

DAVID JOHNSON: Thank you so much. We really, really appreciate it.

LECIA SEQUIST: Thank you.

MELISSA DILLMON: Great to speak with you. Bye.

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How do you talk to patients about medicinal cannabis? Dr. Ashley Glode (University of Colorado) moderates a discussion on effectiveness and safety, misconceptions and more. Featuring Drs. Ilana Braun (Dana-Farber Cancer Institute), Daniel Bowles (University of Colorado), and Kent Hutchison (University of Colorado).

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Air Date: 1/19/22

TRANSCRIPT

ASHLEY GLODE: Hello, and welcome to ASCO Education's podcast on medical cannabis, also referred to as medical marijuana. My name is Ashley Glode, and I am an associate professor with the University of Colorado School of Pharmacy.

It's my pleasure to introduce our three guest speakers Dr. Ilana Braun is chief of the division of adult psychosocial oncology at Dana-Farber Cancer Institute, and an assistant professor of psychiatry at Harvard Medical School. Dr. Daniel Bowles is an associate professor of Medical Oncology at the University of Colorado. We're also joined by Dr. Kent Hutchison, a professor of psychology and neuroscience at the University of Colorado Institute of Cognitive Science.

Let's start with a simple but fundamental question. What is medical cannabis or medical marijuana?

ILANA BRAUN: So Ashley, I think that's such a great first question. I think of medicinal cannabis as herbal nonpharmaceutical cannabis products that patients use for medicinal purposes. And typically they're recommended by a physician in compliance with state law.

DANIEL BOWLES: Dr. Braun makes a really good point. And I think it's important to know when patients are referring to medical cannabis, there's a wide variety of different things they could be referring to. Sometimes they would be referring to smoked herbal products, but there are also edibles, tinctures, ointments, creams, all sorts of herbal-based products that people use and call medical cannabis.

And then there are also the components that make up medical cannabis-- largely, the cannabinoids. And I think the big ones people think about are THC and CBD. And sometimes those are used in their own special way. So I think that it's important for us as providers to be able to ask our patients, what is it that you mean when you say, I'm using medical cannabis?

ILANA BRAUN: I think that's such a great point. And I will add I think it's also important to remember that when you offer a medicinal cannabis card to a patient, you're giving them license in most states to access any number of products. It's not an insurmountable challenge, but it's a whole new world for traditional prescribers who are used to writing a prescription and defining what is the active ingredient, how often a patient will take the medicine, by what means.

DANIEL BOWLES: I think the other thing we need to be very aware of, as hopefully people are listening to this across the country and elsewhere, is the laws vary wildly from jurisdiction to jurisdiction about what consists of medical cannabis, who is allowed to use it, and in what quantities. So I think it's really important that as we learn about these and we think about these, we think about how they apply to any of our specific situations in which we live in practice.

KENT HUTCHISON: So it's interesting-- just follow up on what Dr. Braun and Dr. Bowles, what they're saying, those two words-- right-- medical and cannabis. I think the medical part is somewhat easier because it can refer to the reason the person is using. Are they using for medical reasons are they using for recreational reasons, even though that's a blur?

But the cannabis part I think is what's really complicated. And this is what Dan was getting at. All the different products, all the different cannabinoids, I mean all the different bioactive terpenes and everything else in the material, all different forms of administration. That is where it gets super complicated to really define what that is. And then of course, there's so little research we don't really know what all those constituents do.

ASHLEY GLODE: Now that we kind of have a little bit of familiarity with medical cannabis, can you comment on adult use cannabis and what that might mean for a patient?

ILANA BRAUN: Ashley, I think it's a really good question. And in some of the early research I did to try to understand where medicinal ended and adult use began, or adult use ended and medicinal began, I began to discover a theme that emerged, which is they sort of blend into each other often.

In other words, some of the oncologists that I spoke to believed that it was not such a bad thing for a patient with serious illness, and pain, and many other symptoms to have a sense of high or well-being. And conversely, when I spoke to patients using cannabis, sometimes a cancer patient used medicinal cannabis for enjoyment, and sometimes they used it for symptom management, and sometimes they used it for both. And so I think it is somewhat of a slippery slope between the two. Would you agree?

DANIEL BOWLES: I think there are definitely blurred lines between the two. I think that the advantages of what most states would recognize as medicinal cannabis is usually they're less expensive, patients can use them in larger quantities. There are certain advantages. But there's also paperwork that goes along with medicinal cannabis that some patients don't feel comfortable with.

Or particularly I think when you have a patient who's interested in trying cannabis or a cannabinoid for the first time, they might not want to go through all the extra steps required getting that medical marijuana card, whereas adult use, I think people feel more comfortable, at least in my state, sometimes walking into a dispensary to discuss the options with people who work at the dispensary and then get it from more of an adult use or recreational cannabis initially. And then if that's something that they find helpful for their symptom management, to then take those extra steps and try to get a medicinal card.

ILANA BRAUN: I agree with Dr. Bowles that the target symptoms or the target effect is often similar and access can differ.

KENT HUTCHISON: Yeah. Just to chime in, I agree. I agree also. It's definitely-- the lines get blurred. The recreational user might also appreciate-- for example, college students, I hear them say a lot of times that they appreciate some of the anxiety-reducing aspects-- right-- even though they're not necessarily a person who has an anxiety disorder.

And then of course, patients appreciate a slight increase in euphoria or positive affect, and what does that mean? Is I mean they're also using for recreational reasons? Or is that completely, I guess, legitimate?

On the other hand, there are sometimes I feel like when-- especially on the recreational side-- when people are using for the more psychological effects, the sort of psychotropic effects, I know sometimes the medical patients refer to that as being a little bit loopy as a side effect. So I feel like there's definitely some blurred lines. And maybe there are some places where we can think about in perhaps in a less blurred kind of way.

ASHLEY GLODE: How often do you guys have a patient ask you about medical cannabis? And what are the most common questions they might have for you?

ILANA BRAUN: In my psycho-oncology practice, patients frequently tell me they're using cannabis, often with good effect and minimal side effects for polysymptom management-- for instance to address nausea, or pain, or poor appetite, or sleep, or mood, or quality of life. But they don't ask me a lot of questions.

For instance, one of my longest-standing patients. A man with metastatic cancer and gastroparesis. Vaporizes cannabis before meals to keep his weight up. And many of my patients also use cannabis as cancer-directed therapy. And for these patients, side effects can sometimes be more pronounced.

For instance, I have a lovely patient with metastatic cancer who follows a Rick Simpson protocol. So what is that? That's an online recipe marketed with an antineoplastic claim. And so this patient targets hundreds milligrams of cannabinoids daily. And with such high cannabinoid doses, she sometimes feels spicy, or out of it, as she describes it.

And then I had another patient who targeted high daily doses and developed a debilitating nausea and vomiting that was initially diagnosed as chemotherapy-induced nausea vomiting because it was so hard to tease out in the setting of so many medicinal agents, what was what. But the symptoms resolved completely within weeks of the cannabinoids being halted.

And so as I mentioned, what's notable about all three of these patients, and many of the others I see, is that they are quite open with their oncology teams and me about their medicinal cannabis use. But they don't seem to rely me or other members of their oncology team for their therapeutic advice . We insert ourselves when we see potential harm, but much of the decision-making seems to be made-- I don't know in the naturopath's office, at the dispensary counter, or by trial and error.

And this anecdotal experience in my practice is borne out in my research findings as well. Patients are just not getting the bulk of their cannabis therapeutics information from their medical teams.

DANIEL BOWLES: In my clinical practice, I am asked about cannabis or cannabinoids a fair, amount often in the context that Dr. Braun is describing, where a patient is coming in and they're already using a cannabinoid or they are planning on doing it and they just want my opinion.

And I think unlike talking about more conventional cancer-directed therapies where they really rely, I think, on their medical team for information and guidance, we are often more a supplement I think in terms of information. In terms of the patients who come to ask me about cannabis or let me know that they're using cannabis, it's a very wide selection of people.

I see young people, old people talking about it, men, women, a variety of different malignancies. So there really is a lot of usage or are thought about usage of cannabis or cannabinoids amongst our cancer patients. I think if you look at the studies, they'll tell us that depending on where we're working, anywhere between 20% to 60% of patients have used cannabis in the last year to help manage some sort of cancer-related symptoms.

And I think the other thing that is notable is you'll find people asking about cannabis or cannabinoids who I think we might not have otherwise expected. So for instance, Just this past week, I had a patient with anaplastic thyroid cancer in his 70s, and his daughter was wondering whether he could try CBD to help with his sleep and anxiety.

She wanted to make sure that it wasn't going to interact with this cancer therapies. And I appreciated her bringing it up, and we could have a frank discussion about the pluses and minuses of it, just like we might any other therapeutic intervention. So I think that particularly as the laws have changed across the country, more and more people are willing to tell us that they're trying cannabinoids and cannabis than maybe would have even 10 or 15 years ago.

KENT HUTCHISON: I think in an ideal world, patients would be talking a lot more with their physicians about this topic. And I think unfortunately that a lot of people do get their information from dispensaries. From the media, from social media, from their kids, and from whoever. And I think that's something that I hope will change in the future.

DANIEL BOWLES: In terms of questions that I'm often asked, I'll be asked if it's going to interact with their cancer treatments, in terms of making their medications more or less effective. I do get questions about how I think their cannabis use might affect some of their symptoms. I get questions about other drug-drug interactions-- let's say, interactions with opiates, or benzodiazepines, or some of these other medications that a lot of our patients are on.

ASHLEY GLODE: In a recent survey 80% of medical oncologists who discussed medical cannabis with their patients, 50% recommended it in the past year, but only 30% felt knowledgeable enough to make recommendations. What do you guys think needs to be done to address this knowledge gap? And what resources do clinicians have to get and stay informed?

DANIEL BOWLES: So I'm a big fan of the NCI's PDQ as a great resource. It has a fairly objective information about cannabis and cancer specifically. So I think that's a nice reference for people who are interested in getting an initial overview on the topic.

I think there are also a number of different educational programs. I know the University of Colorado, for instance, has a Cannabis Science Master's and also a certificate program. So there are courses available for people who want to educate themselves more on this topic.

ILANA BRAUN: Yeah. I guess when I think about what needs to be done, I think that cannabis needs to become a routine part of medical training curricula and CME programs. I think that a federal funding for high-quality clinical trials and a loosening of federal restrictions on accessing study drug were to occur, that would be really a big boon for the medical community.

And my colleagues on this podcast I know are doing some very creative pragmatic clinical trials naturalistic studying what is happening in the field. And I am doing clinical trials using an FDA-approved version of cannabinoids. But it's still very hard to study whole-plant cannabis in a form that is sort of a standardized trial drug in a cancer patient.

And then when I think about where I would begin to read, I don't think there is a single source, unfortunately. But a great place to start reading is actually a project that Dr. Hutchinson was a part of, which was an expert panel that was assembled by the National Institute of Science Engineering and Medicine in 2017.

And they produced a monograph on the health effects of cannabis and cannabinoids. And it's several hundred pages long, including sections devoted just to oncology. So in other words, there is scientific evidence to evaluate, and it's sizable.

DANIEL BOWLES: The Austrian Center for Cannabinoid Clinical and Research Excellence also is a helpful resource. One of the nice things about that is they actually give some dosing suggestions or ideas for people who really don't quite know where to start.

Right now, there aren't a lot of people in that position to say, here's how it should be done. Here's how it gets dosed. Here are the data to support those decisions. And so the folks in the next level of training don't learn it in the same way that we have learned how to prescribe other medications. And they can't then lay it down.

So because the data are scant, in some respects, and particularly for herbal products that So. Many of our patients are using, I think it falls outside the medical model that we've all become so used to using to learn how to take care of patients. And I think that's one reason that so many oncology providers feel interested in learning more about this topic, but don't feel comfortable giving patients guidance on how to use them.

KENT HUTCHISON: So both Dr. Braun and Dr. Bowles identified some of the key resources out there. And certainly the training issues that Dr. Bowles just talked about are important. And I do want to emphasize the one thing that Dr. Braun mentioned, which is basically that we do-- we lack research and we lack data on some key important issues, like dosing, for example. What dose is effective?

So cannabidiol has been out there for a long time, but what dose is effective for what? We don't know, right? So we definitely lack research. And there are definitely obstacles to doing that research.

ASHLEY GLODE: So you guys brought up some good points about there being a lack of data, but also there is some evidence. So what is the current research and evidence on the efficacy of medical cannabis for management of cancer symptoms and cancer pain, specifically?

DANIEL BOWLES: So there was a really nice review article that just came out in the BMJ looking at cannabis and cannabinoids, not specific to cancer pain, but including cancer pain. And what they found-- they looked at different preparations from herbal products-- smoked herbal products, oral agents-- cannabinoids, more specifically.

They found there is a modest, but a real improvement in pain in patients or research subjects treated with cannabinoids versus those usually typically treated with placebo. In particular, the data are supported in neuropathic pain, I'd say more so than the other pains. I think the data are less compelling with regards to many of the other symptoms that people often use cannabinoids for, such as sleep, anxiety, appetite, things along those lines.

ILANA BRAUN: So I'll tell you a little bit about how I think about the evidence base in oncology for cannabis use. So I'll preface this with two points. The first is that, as I mentioned, cannabis products tend not to be one active ingredient, but hundreds of active ingredients-- cannabinoids, phenols, terpenes, they all have bioactivity.

And they don't work individually, they work through complicated synergistic and inhibitory interactions that have been termed entourage effects. So I don't think one can easily extrapolate from clinical trials of, say, purified THC, to understand whole-plant cannabis' activity in the body and how it might perform in humans.

And then the other point I'll make is that when I think about the types of clinical evidence that we as clinicians hold dearest, it's clinical trials of our agent of interest in our population of interest. So cancer patients using whole-plant full-spectrum cannabis that they would access at a dispensary or grow in their own home. With this in mind, I believe the strongest evidence, randomized double-blind placebo controlled trials of whole-plant cannabis and oncology populations begins to support its utility for chemotherapy-induced nausea and vomiting.

So there have been a few studies that have looked at this. But just in 2020, the most recent is a study by Grimison, et al. It was a multicenter randomized double-blind placebo controlled crossover trial comparing cannabis extract. And I think the extract they use was a 1 to 1 THC to CBD ratio versus a placebo in patients with refractory chemotherapy-induced nausea and vomiting.

And what they found was that with active drug, there was a complete response in 25% of participants versus only 14% with the placebo. And although a third of participants experienced additional side effects with the active drug-- so remember, this was a crossover trial, so they saw both arms-- 80% preferred cannabis to the placebo medication.

So that's clinical trials of cannabis and cancer. But if we expand the base of the pyramid of acceptable evidence to include high-quality clinical trials for health conditions other than cancer and extrapolate back, then I agree fully with Dr. Bowles that there's a growing body of evidence that cannabis may be beneficial in pain management. And there have been many clinical trials done in this arena, and they span myriad pain syndromes, including diabetic neuropathy, post-surgical pain, MS pain, sickle cell pain.

And so it does seem like cannabis works for pain management in several other illness models, so we could extrapolate back and hope that it works in cancer pain. And then there is a small body of evidence with nabiximols, which is a pharmaceutical that has a 1 to 1 THC to CBD ratio. And it's a sublingual metered dose spray.

And it has been trialed for opioid-resistant cancer pain. And this is not as a single agent, but as an adjuvant to opioids. In early trials, two times as many participants in the active arm as compared to the placebo arm demonstrated a 30% pain reduction. And for the pain specialists who are listening, they will know that is a substantial pain reduction.

But then, additional studies fail to meet primary endpoints. I think there were three clinical trials that followed. Nabiximols was found to be safe and effective by some secondary measures, but the FDA opted not to approve nabiximols for cancer pain. So I think there's some suggestion of effect, but there's some smoke, but no fire-- no pun intended.

DANIEL BOWLES: I think many of the studies that have been done looking at cannabis-- or cannabinoids-- have been compared to placebo or they've been crossover. And I would say fairly consistently, there is some improvement in pain scores with the cannabis products versus placebo kind of across a wide variety of disease spectrums with regards to pain.

I think one of the other questions that a lot of people have asked is, can you decrease people's opiate usage using cannabis? As we know, there's a huge epidemic of opiate misuse in the United States of America right now. And I think many people are looking for ways to decrease opiate usage.

There was a nice study done from Minnesota in conjunction with the Minnesota dispensaries-- or state marijuana program-- where some researchers randomized people to starting kind of herbal cannabis products early in their study or three months into their study. So it was kind of a built-in control.

And they looked at opiate usage rates, pain scores, quality of life scores, et cetera. What they found is there, again, was some improvement in pain control overall in the cannabis users. However, it did not equate to a decrease in opiate usage. So I think that it's an open question that I think a lot of people want to know the answers to before they start recommending or incorporating cannabis or cannabinoids more widely into their practice.

KENT HUTCHISON: It's certainly a complicated issue, in some ways, right? Because the research which is summarized very nicely by both Dr. Braun and Dr. Bowles, it is suggested, but not overwhelming, by any stretch, right? It's not clear-cut.

And I think that one of the big issues here we talked about the very beginning is how complicated this cannabis thing is. and Dr. Braun alluded to this also, that there are obviously many different formulations, many potentially active constituents in cannabis. And so what has mostly been studied so far is either synthetic versions of THC or nabiximols, which is probably the closest thing to what some people are using.

So I think the jury's still out, for sure. And I think hopefully at some point, what will happen is that some of the products that are actually being used by people-- because most people aren't using nabiximols, most people are not using THC only, hopefully there'll be some trials of the things that people are actually using out there in the real world that will tell us something more about whether it's effective or not. And maybe even more specifically, which constituents-- which parts, together are most effective with respect to pain.

DANIEL BOWLES: I think one of the other topics that some of my colleagues have alluded to already is not just cannabis' role in symptom management. I think pain is often what people think of, and people are using it for chemo-induced nausea and vomiting, anxiety, sleep, appetite, but a fair number of patients are also using cannabis or cannabinoids with the hopes that it is going to treat their cancer like a chemotherapy or an immunotherapy may.

And oftentimes, patients will point to preclinical studies looking at oftentimes very high doses of THC or CBD that might show tumor cell death or tumor reduction in test tubes. And I spent a fair amount of time-- and I know some of my colleagues spent a fair amount of time-- talking with patients about how it's a big step between cannabis or cannabinoids working to slow cancer growth in a test tube, to working in an animal system, to working in people.

ASHLEY GLODE: So what are the most important considerations clinicians should keep in mind before recommending medical cannabis to patients with cancer?

DANIEL BOWLES: We should be asking why they want to use cannabinoids. I think just like we might any other medication that people are thinking about trying-- or herbal product that people are thinking about trying-- I think we need to ask why they're interested in using these products. So is it for symptom management? Is it for some of the ancillary side effects of cannabinoids or cannabis? Why are they wanting to use it?

And I think trying to incorporate that more than into the medical model, I ask my patients, hey, if you're using this particular product, do you feel like it's doing what you intended it for it to do? If it is and it's legal in your state, great. Do it as you feel fit. If it's not meeting your goals, if it's not helping with the pain, or if it's not helping with the anxiety, or it's not helping with the nausea and vomiting, maybe we should rethink whether we would use it. Just as if I was prescribing more conventional anti-nausea medication and you didn't think it was working, we wouldn't keep using it.

So I think that's a really important thing to keep in mind. I think the other thing to know from a safety standpoint is, who else is in the household? We have a psychiatrist on the call with us today. I think there is an ample amount of data that cannabis is not safe for young people. It's not safe for growing brains.

And I think we need to make sure, just as we would want people's opiates to be secured, that their cannabinoids and cannabis products are secured as well, from those who do not want to use them.

ILANA BRAUN: And the thing I would keep in mind is that in most states, giving patients a medicinal cannabis card is allowing them to access any number of products with different ratios of active ingredients, delivery mechanisms, onset of action, potencies. And if you don't discuss all of these issues with your patients, these are things that they will decide at the dispensary counter, or by discussing with friends and family, or by trial and error. And I think it's really important that we clinicians guide this narrative.

ASHLEY GLODE: So what kinds of patients are not good candidates for medical cannabis?

DANIEL BOWLES: I would not recommend medical cannabis for people who can't meet some of the criteria we already discussed. So people who can't keep it safe in their households or have concerns about diversion in their own households. Those are people who I think would not be great candidates for medicinal cannabis or cannabinoids.

ILANA BRAUN: As the psychiatrist on the call, I would add that I worry for people with a strong history of psychosis, or currently psychotic, or with a strong family history of psychosis. And perhaps those severely immunocompromised, since there is evidence of fungal and mold contamination in some cannabis products.

DANIEL BOWLES: The other group of people I discussed this with are patients on immunotherapies. One of the ways that cannabis may be effective in some of the symptoms we discussed is it's an anti-inflammatory agent. One of the ways it could be detrimental for patients on immunotherapies is that it's an anti-inflammatory agent.

There is one small study that suggested that patients might have worse responses to immunotherapy who are cannabis users versus those who are not. So that is a conversation I like to have, just so patients feel like they can be informed. I think lastly, cannabis even for people with medical cards, is not free. So there can be a financial burden for people who are using it. So that's something that I'll often bring up with people as well.

KENT HUTCHISON: One thing I would add to this would be history of a substance use disorder might also be a consideration here as well. Mainly because you don't know what the person is going to get, and it could be something that lends itself to relapse or encourages a problem. So I would add that to list.

ILANA BRAUN: And I would second what Dr. Bowles said about the financial challenges of using cannabis regularly medicinally. It's not something that's covered by insurance, either. So these are out-of-pocket expenses, and they can add up fast, particularly for patients in the oncology space using it for antineoplastic therapy.

ASHLEY GLODE: So is there a concern about drug-drug interactions for patients currently undergoing active cancer treatment?

DANIEL BOWLES: There are some data that there can be drug-drug interactions with cannabis and certain agents. In particular, cannabidiol, or CBD, is a CYP3A4 inhibitor. And there are a lot of drugs that are metabolized through that particular system. So I think that that's the clinical relevance of those interactions, I think, is sometimes unknown. But that is another topic that I do think we need to make sure we bring up with our patients.

ASHLEY GLODE: Thank you. Yeah. So a lot of what we'll do is from a drug interaction perspective, use the FDA-approved products that we have available to run through a drug interaction checker, like Dr. Bowles mentioned. So we'll use dronabinol as the THC-based product and epidiolex as the CBD-based product. There's also some resources, such as natural Medicines Database.

And some of the pharmacy programs that we use, you can actually put in marijuana or cannabis as a drug and run drug interaction checks. So there's multiple potential interactions, like he mentioned, through the immune system. But through the cytochrome P450 pathway, cannabis has been shown in some instances to be an inhibitor, sometimes an inducer of certain enzymes, as well as a substrate. So it's really important to work with your pharmacy colleagues to run through different potential interactions that may be present.

ILANA BRAUN: I'll just add one thing, just in case that's helpful. I mentioned earlier in the episode that I had a patient who used cannabis as an antineoplastic drug, and targeted very high doses and developed a terrible nausea and vomiting. And when she stopped, so did the nausea and vomiting, even though her chemotherapeutic continued.

And I, to this day, don't know if that was a cyclic nausea and vomiting syndrome, which has been known to plague some heavy cannabis users, or whether drug-drug interactions led to her high-dose cannabis triggering high blood concentrations of her cancer-directed therapy at the time. And so I think that drug-drug interactions do need to be carefully weighed.

ASHLEY GLODE: So wrapping up, has the medical community stance on medical marijuana shifted in recent years with legalization in many states?

ILANA BRAUN: I don't think we know the answer to this, about how sentiment has shifted because there aren't longitudinal studies that I know of examining this question. But we need some. And one could imagine that as medicinal cannabis becomes are commonplace, providers are increasingly confronted with questions about how to guide care and the desire for high-quality clinical trials and in-depth cannabis therapeutics trainings increases-- and as one piece of evidence for this, at the end of 2020 the National Cancer Institute held a first-in-kind four-day conference at the intersection of cannabis and cancer. And so I'm hopeful that grant opportunities will follow from that.

DANIEL BOWLES: I think overall there has been more willingness to discuss cannabis in the context of patient care in the last decade. A couple of ways that I see this is I much more frequently see cannabis use described not necessarily in the drug history, or in the social history, but in the medical history, or in their medications, if they're using it for medical or therapeutic purposes.

I think the other place that I've noticed cannabis usage become a bit more mainstream is in the clinical trial setting-- not in clinical trials of cannabis, but one of the things that many of us do is clinical trials of new drugs. And very frequently, 10 years ago we ran into trouble trying to get our patients who were using cannabis products for cancer symptom control onto these clinical trials because of potential drug-drug interactions, or just the fear of the unknown. And I feel like we run into that less commonly now.

KENT HUTCHISON: I think it's also worth pointing out that there have been more and more podcasts like this one, right? So to the credit of this organization, I think we are seeing some change. I just wanted to highlight that. And I compliment everyone here for putting us together and putting it out there.

ASHLEY GLODE: All right. Well, thank you. That is all we have for today. And thank you very much Drs. Braun, Bowles, and Hutchison for a delightful conversation. Thank you so much to all the listeners tuning into this episode of the ASCO Education Podcast.

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The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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This episode features Dr. Quyen Chu, Chief of the Division of Surgical Oncology at Louisiana State University. A prominent surgeon, humanitarian and writer, Dr. Chu shares his life stories, from fleeing Vietnam as a young child, to finding his calling, and giving back through work in impoverished U.S. communities and war-torn regions, including Iraq, Kurdistan and Vietnam.

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Air Date: 01/04/22

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

PAT LOEHRER: Hi. I'm Pat Loehrer and director of the Center for Global Oncology and Health Equity, Indiana University. And welcome to another episode of Oncology Etc.

DAVE JOHNSON: And hello. I'm Dave Johnson at University of Texas Southwestern in Dallas. Pat, great to have another session today.

PAT LOEHRER: It's good to see you again, Dave. I'm really excited about our guest today. And I think both of you and I were talking about this book that came to mind when we thought about having Quyen here. But it's a book by Abraham Verghese entitled My Own Country. And we hope to have Abraham on in another session of ours. You know, Abraham's story of growing up in Africa, and moving to the United States, and moving to the South in Tennessee in a time of HIV was really an extraordinary journey for him.

DAVE JOHNSON: Yeah, an amazing story, settling in East Tennessee in the Appalachian Mountains, and then going to the Northeast to do additional training, and then returning to that part of the country during the height of the AIDS epidemic-- really a remarkable story. For those who have not read it, we both recommend it very highly.

Today's guests we're incredibly excited about both. Dave and I met Quyen Chu in the Leadership Development program for ASCO. He was in the first class. He's currently the professor of Surgery and chief of the Division of Surgical Oncology and holds the Edward and Frieda Green Professorship in Surgical Oncology at LSU in Shreveport.

He earned his MB degree at Brown Medical School in Providence, trained in general surgery in Massachusetts at Springfield and at St. Elizabeth's Medical Center, and then did his fellowship training at Brown University under the mentorship of Dr. Hal Wanebo, who was a wonderful surgeon and very active in ECOG in the Southeast group. Dave and I knew him. He's authored-- or co-authored more than 178 publications, a number of book chapters, a couple of books, including translating one of the surgical textbooks into Vietnamese.

He has been an extraordinary human being. And one of the things we want to explore is his journey from childhood until now. In 2013, he was appointed by President Barack Obama to the board of Vietnam Education Foundation.

He has worked in impoverished areas in Louisiana but also in the war-ravaged parts of the world, including Iraq, Kurdistan, Vietnam. He is truly a special breed of humanists who-- I think he looks back at his roots. he sees the bright possibilities of the future and reflects on what he can do to make a difference. It's just a great pleasure to have you, Quyen, to join us today.

QUYEN CHU: Thank you very much, Pat, for that great introduction. It is very heartwarming, and I look forward to this podcast.

DAVE JOHNSON: So Quyen, why don't we start a little bit-- I mean, Pat's mentioned your background. Tell us a little about how you got here and about your family and their journey from Vietnam to the United States.

QUYEN CHU: Sure. I immigrated to the United States in 1975 right after the fall of Saigon at the end of the Vietnam War. My father was a South Vietnamese officer in the army, which means that he fought alongside with the Americans so that when the Americans pulled out, South Vietnam fell. And so because he was an officer, we were-- basically had no choice but to leave the country. Otherwise, he would be in a re-education camp, which might mean that we would never see him again.

So we left Vietnam in '75. I was seven. We left on a ship, and then we also left-- then we transitioned to boats, and then we went to the Philippines for several months. And then we finally got sponsored by a church in Florida. So then we stayed at Eglin Air Force Base for several months before we actually went to our home in Florida.

I grew up there and basically was-- grew up in a very impoverished area. It was-- basically it's a rat-infested home that we lived in. My father was an officer. He was a captain. But coming over to the United States, you have to learn English. You have to try to get a better education.

And he finally realized that he had to support a family of six, and he took on being a barber. So he was a barber for most of his-- the rest of his career, really, raising a family of six. And I was there just to do the very best that we could.

Throughout it at all, we knew that we were in the right place. And we knew that America doesn't give everything out for free, but we also know that it's a great, great land of opportunity. The philosophy is that if you apply yourself, do the very best, follow the rules and regulations or laws, you know, abide by their laws, that you can do great things. And that is a great opportunity. So that was embedded in me and my sisters, and those philosophies have stood the test of time thus far.

PAT LOEHRER: You know, I read a little piece when-- you told a story about arriving here in Florida and a police car pulling up to your house. Can you relate that story?

QUYEN CHU: It's the memory that I will never forget. And in fact, I remember it every Thanksgiving. So it was around Thanksgiving. We really didn't know what it was. We just moved into a new house.

And it's funny because when we drove by the new house, we saw the garage. And we felt, oh, my god, we're going to live in that garage. This is great. This garage is going to be our house. This is great. There's so much space. And I remember when we asked the driver, the driver goes no, no, no, no, that's where you park your car. The whole house is yours. And we were just amazed.

But anyway, so around Thanksgiving, we saw-- a police car drove up to our parkway. And I saw, and I was scared. And then I called out my dad. And I said, Dad, there's a police car here. What did we do wrong? And he was so scared. And he said, Son, you know, I will take care of this.

So the police came and knocked on the door. And when my dad opened the door, he claps his hand, and he just bow, just like this, several times to the policemen and say, we're-- in broken English, we're sorry. We know English. We did not mean to break any laws. Forgive us.

And the police just smiled. And he says, no, no, no, no. We're here to greet you as a new neighbor. And it's Thanksgiving, and we want to give you a turkey.

Then he waved to the other police to come over, and then the other police came out with a big old turkey. And they hand it to us, and they said, welcome to the neighborhood. And we were so happy. My mom-- just about to cry. And we felt that, hey, this is now our new home, and we felt that this is not going to be a strange land, that we're going to create a life for ourselves here.

DAVE JOHNSON: It's a remarkable story, Quyen. That type of story just makes it even more special. You mentioned that you had several siblings. Where do you fall in the hierarchy? And what are your siblings doing?

QUYEN CHU: So I'm a second-oldest. So my oldest sister-- she went to Cornell, and she is now a full professor of biochemistry at Union College. My younger sister, who's a year younger than me-- she graduated from Dartmouth, and she is now working at industry and also, in the medical field. She holds a PhD from Columbia. And then my youngest sister graduated from Oberlin College, and she is now working in the hotel business.

So we're very blessed. We feel very excited about the opportunities. And we look back at our lives every Christmas when we get together as a family, and we reflect back at the lives that we've gotten. And we also feel bad about family members who couldn't make it over here and wonder what their lives would have been like had they come over here. And then we also wonder what life for us would have been like had we not come over here. And through it all, we felt that we really, really hit the jackpot in life and that all of us were very, very lucky to have this life that we have.

PAT LOEHRER: I can't imagine the pride that your parents have of all of you and how much pride you have for him. I mean, it's extraordinary. Can you just because I've never-- none of us have been through this, what you've been through. But what was it like being seven years old in the middle of this war in Vietnam? What memories do you have of that?

QUYEN CHU: Yeah. I remember when I was playing with my cousins. And of course, in Vietnam, we live under a house full of cousins, aunts, and the extended family. I remember leaving them, and I felt very lonely in America. Of course, each family has its own separate family. And I just felt like it was not-- it was very lonely.

But we did have very nice neighbors. We did have great people that really was very supportive. Of course, as a young seven-year-old, the neighbor's daughter was around my age. She was cute, so, of course, I'd find every reason to visit them and say hi to them.

But other than that, it was a very nice place to grow up. They have their challenges, obviously. What I remember as a second grader-- I saw all the boys. To me, I thought they were all brothers because they were all Caucasian. They all have blond hair. I couldn't tell the difference who's who, but I thought they were all related. But they were very nice, of course.

There were curiosity between us. I've never seen African-Americans until I came over here. And I befriended a Hispanic guy, as well as an African-American, as well as my best friend. To this day his name I still remember. It's Jeff. He was very friendly.

Of course, I experienced some racism, but I think that's expected because I look very different. There were a lot of mixed messages coming out of the Vietnam War. But I think that through it all, the challenges, I realized, that there are more good people than there are bad people and that people who were bad-- probably because they were insecure, or they just didn't know me.

And then there were those who did finally get to know me. They turned out to be great people. I've learned throughout my 53 years on this earth that people have so many things in common that when we do have conflict, it's probably stemmed from insecurities rather than pure hatred.

DAVE JOHNSON: Yeah. You went to undergraduate at Dartmouth. Is that right?

QUYEN CHU: Yes. sir.

DAVE JOHNSON: So I seem to recall-- maybe you told us this in the LDP program, but you had an interesting experience when you showed up on campus at Dartmouth.

QUYEN CHU: Yeah.

DAVE JOHNSON: Can you relate a little bit of that to us, as well?

QUYEN CHU: Sure. So, again, coming from a family where your dad is a barber, I had limited means. So I basically had, I think, one tote bag that I packed together. I took a Greyhound two day's trip to Dartmouth.

And I got there on the campus. It was a beautiful green campus. And I was a little bit hesitant, a little bit reserved because there were a lot of Caucasians and whatnot. And I was a little bit, you know, introvert somewhat.

And when I got there, I saw a Frisbee flew by me. And I grab it, and then the guy goes, hey, you want to come and play with us? And I'm like, well, sure. And next thing you know, we hit it off like a bunch of 18-year-old kids-- no worries in our mind, just glad to be on campus. And we hit it off.

And I realized that, hey, you know, my reservations were basically based on my own biases rather than the reality. And then I've realized that the reality is that a lot of the kids there are just like me-- just want to find friends, just want to hang out, just want to have a good education. And they weren't being judgmental about anything, and that made me really-- it felt really good.

DAVE JOHNSON: Frisbee diplomacy, I guess, is we should call it. Maybe we should throw a Frisbee to Putin. I don't know.

QUYEN CHU: That's right.

PAT LOEHRER: Tell us a little bit about your journey to become a surgeon.

QUYEN CHU: OK. So my dad and mom instilled with me the importance of education. They told me, now listen, you have a choice-- either be in the same rut as us now, or get a good education and get out of this rut. So I really didn't have any choice but to study hard.

And I studied hard, and I got an opportunity to go to Dartmouth. I felt very, very lucky with that. They gave me a full scholarship. They believed in me. They saw something in me that I was very happy that they saw.

And then I applied to medical school at my sophomore year at Dartmouth, and I got in. I was very excited about that. And I started off wanting to be a pediatrician, but then I realized that what I had to turn in my sheet of the patients that I saw, everything had to do with procedures and techniques. I wrote down there I did a spinal tap, I did a chest tube, I helped intubate, I did all of that.

And it was really my pediatric mentor who says, it sounds like you should be a surgeon, not a pediatrician. And that kind of got me thinking about it. And then I rotated a service with Dr. Wanebo and really fell in love with surgery. It was tough. It was rough. But I felt that this is my calling.

I felt very fortunate looking back at only the number-- maybe they admitted 100 students. And I felt very fortunate that I was among those. And I knew that it was an opportunity that I did not want to waste, that I did not want to take for granted. I wanted to do everything I can to make sure that I learn as much as I can and hoping that in the future, I would give back to the country, the community that gave me a life.

DAVE JOHNSON: Yeah, my mentors suggested that I should be a forest ranger as opposed to a physician. [LAUGHS]

PAT LOEHRER: Yeah I think I shared before I got, on one of my medical-school applications, they not only rejected me, but they said, good luck in whatever career you decide to go into.

[LAUGHTER]

I was going to be a pediatrician, too, but I envisioned all these kids just laughing and having a great time. But they were all crying, and the parents didn't like me either. And so I decided to find a different life.

You have had this extraordinary journey of giving back, as I mentioned at the onset, and not only going back to Vietnam but also, going to Iraq and going to many other countries here. And about five years ago, you received the ASCO Humanitarian Award, which was so deserving for you.

DAVE JOHNSON: Very deserving.

PAT LOEHRER: But tell us a little bit about these efforts. What has pulled you or driven you to do so much of your humanitarian efforts around the world?

QUYEN CHU: Well, first of all, I want to credit my wife Trina, who's been there for me. She's basically the backbone of my life, allowing me the opportunity to pursue my passion. She's a lawyer. She put her career in the back seat so that I can have a successful career. So I want to make sure that I acknowledge her sacrifice and her love.

Because of her love and her understanding, I was able to pursue my passion, which is giving back. My colleague, Dr. Gazi Zibari is from Kurdistan. And one day, he showed me pictures of the Kurds, and he gave me the history of the struggle the Kurds. And it was reminiscent of the struggles of the Vietnamese, so it resonates with me.

And I said to him one day, hey, listen, when you do go, I would love to join you. And so I did. And from that point on, I returned, I think, four or five additional times. We did not return last year or so because of COVID, but we're planning to return again to Kurdistan and Iraq.

But it was an opportunity for me to really give back what I wanted to do all along, which is to render care to the less-fortunate individuals of our lives. I also went to Vietnam, Nicaragua, Honduras, and also on those different mission trips. And, you know, Dr. Zibari and I have gone together for many of these trips. And we come to realize, you know, what-- the great thing to do is capacity building. In other words, we should visit these countries not just once but several times to make sure that the surgeons there feel comfortable with the procedures that we taught them and that, hopefully, that they will also teach the other surgeons the procedures, the techniques that we taught them.

And we were very pleased when we went back to see that these surgeons were very adept in what they were doing-- Whipples, liver resection. They were doing phenomenal things. In fact, I think the greatest sense of pride in me was to see a young surgeon in Kurdistan who did a laparoscopic right-liver resection bloodless.

We felt very proud because-- I was looking at Dr. Zibari, and I said, you know what-- I can't even do that. And it's amazing to see how they have not only learned our skills, but they exceeded us. And isn't that what we all want, that our mentees to be better than us? And so to me, that was a great sense of pride.

At the end, the young man came up to me and says, mentor, I hope I did it right. Did I make any mistake? And I chuckled. And I said, no. I could not have done what you've done. You have done amazingly.

And he was so happy. He was so proud. He says, I'm so glad that I make you proud of me, Dr. Chu. So to me, that's probably the greatest thing is to see your mentee better than you and still see that respect that you got from them.

DAVE JOHNSON: We're really happy you mentioned that because one of the themes of our podcast has been mentor and mentor relationships. And you had a remarkable relationship with Dr. Wanebo. Would you like to expand on that somewhat or tell us about that relationship?

QUYEN CHU: Sure. Dr. Wanebo-- I always joke around. I said, Dr. Wanebo, you're a gifted surgeon with an internal-medicine demeanor. He is just so nice. He never loses his cool.

And the great thing about him is that every time I have an idea, he would always push me to pursue it. There's never been a, no, it can't be done. No, that's not how-- you will never get it done-- never like that. It's always, this is a great idea, Quyen. Why don't you pursue it. And in fact, he would give me deadlines and say, why don't you get back to me in two weeks and see where we go with that.

I remember visiting him in his very busy clinic. And his PA would always trying to brush me aside because they were so busy. And he would always say, no, no, no, come on, Quyen. What do you have for me? What do you need?

He would always make time, even in this busy clinic, to help mentor me. And then whenever I'd write a paper or abstracts, he would look at it. He would fix it, and he would send it back to me and ask me to work on it. So he's been a great mentor, just a great person all around.

PAT LOEHRER: Quyen, if you could think about a young professional or young student right now and give them some advice, what would it be?

QUYEN CHU: I think the best advice is that you pursue your passion. I know it sounds so trite, but pursue your passion. Seek out mentors who believe in you, and avoid those naysayers because I think that young people have so many insecurities. And they're great people. They're so naive, and they're so fresh. They're not tainted with all of the flaws of the world.

And I always worry that when they encounter negative people, it fills their mind with negativity. And that, to me, is not very constructive. So I would advise young people to seek out optimistic, idealistic people to be mentors. And then I think the rest will follow.

And they will learn what can be done, what can't be done. Obviously, you need a mentor to advise them so that they don't fall into your trappings of making major mistakes. But I think that mentors should be someone who is inspiring, who is positive, who can tell them that, hey, you can do it. And if you fail somewhat, it's not the end of the world. Seek out your passion, and never give up.

DAVE JOHNSON: That's great advice, Quyen. I have just one more question I wanted to ask and perhaps should have asked a bit earlier. How did you end up in Louisiana?

QUYEN CHU: That's a great question. So at the end of my fellowship, I had opportunities to stay up north. Then I got a call from my previous partner to say, hey, listen, I'm in Shreveport. Why don't you come by.

In fact, it's funny because when I heard the word "Shreveport," it sounds, to me, Chinese. And I said, why would I want to go to China to practice? I didn't know where it was.

And then they said, no, no, this is in Louisiana. And I really thought about, nah, I don't want to go. But my wife said, listen, why don't you just go down there and take a look so that at least you won't offend the person who asked you to come down.

So I went down there for an interview. And it really resonates with me about the needs, that patients there did not have, in my opinion, good surgical oncology care. There was a huge need. I saw the mortality for esophagus, gastric cancer. They were high. I saw a lot of cancers that were neglected.

And the chair there, Dr. Turnage, was wonderful. And he said, listen, Quyen. Nobody's going to compete against you. We just got a huge need. I think that you would find a niche here, that you can really, really develop a practice here, and then I can mentor you for the academic part.

So I thought about it. And then I talked to Trina, my wife. And I said, this is what I wanted to do. I wanted to give back. I didn't want to be just another spoke on the wheel. I wanted to make a difference. I think I can do this here. And so we took a chance, and I think that we're very happy with that decision we made.

PAT LOEHRER: Well, Quyen, I just, as I reflect on this and think about that leadership-development program, there are many different kinds of leaders, but I can't think of a person who serves as a better example as a servant leader than you. You have given of yourself in so many ways. In this particular past few years. Where there's been so much angst and polarization in this country, and even consideration of isolationism and not having immigrants come into the country, I hope people listen to this, the podcast, and realize what the impact was of a man and a woman who decided to bring their kids over here.

And he became a barber, which is not that prestigious of a job, if you will. But his impact on this country is huge. Mark Twain had a little quote. He said, "The two most important days of your life are the day that you were born and the day you find out why."

And when you guys were born in Vietnam, you had no clue what was going on, but you are one of the fortunate people who know why you're here, and that's to make a difference. And I just want to tell you that you have. Thank you so much for your time with us today.

DAVE JOHNSON: Yeah, it's been great.

QUYEN CHU: Thank you very much.

DAVE JOHNSON: Quyen, this has been marvelous, and we're both great admirers of yours. And I could not agree more with Pat about the impact that you've had.

One thing we like to do with our guest at the end is ask you if there's something you've read recently, or a documentary, or something, a movie or something you've seen that you would recommend to us and to our listeners. Is there something special that you've read recently or maybe seen that you'd like to recommend?

QUYEN CHU: Yes. So there's a book by Mr. David Epstein called Range. It's a phenomenal book. It's a book that contrasts Malcolm Gladwell's philosophy about 10,000 hours to be an expert. Mr Epstein took a different approach. He took the approach that you have to be a generalist. In other words, you have to do many things in life before you can hone in on one particular skill set to become an expert in that.

So to me, that book, Range, is a fascinating book. I'm midway through. And it's just-- it's a beautifully written book, and it just gives a different perspective of life.

I've always loved books that give a different perspective for a particular topic. And I would highly recommend our readership to read Range by David Epstein.

DAVE JOHNSON: Yeah. I also read that, and it is a fabulous book. I couldn't agree more.

QUYEN CHU: Yeah.

DAVE JOHNSON: Well, we've come to the end of our session. And I really want to take this opportunity to thank our listeners and thank Quyen for joining us. It's been a marvelous session.

QUYEN CHU: I appreciate it. Thank you, David, and thank you, Pat.

DAVE JOHNSON: Thanks for tuning in. This is an ASCO educational podcast, where we will talk about anything and everything, really. We really will. So if our listeners have any ideas for our topic or guests that you'd like to hear, please email us at education@asco.org.

Thanks, again, and remember that November 9 is National Louisianan Day. And Pat, just so you know, November 16 is National Indiana Day. I'm sure you already knew that.

PAT LOEHRER: I love it. Every day's Indiana Day.

DAVE JOHNSON: No, every day is Texas Day.

PAT LOEHRER: Thanks, guys.

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Adjuvant immunotherapy is a game-changer for early lung cancer, but it is not the best choice for every patient. Hosted by Dr. Rami Manochakian (Mayo Clinic), Drs. Karen Kelly (University of California Davis) and Howard West (City of Hope Cancer Center) explore considerations in shared decision making and personalizing therapy through patient cases.

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Air Date: 12/15/21

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER 1: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

RAMI MANOCHAKIAN: Hello, and welcome to ASCO Education Podcast on new therapies for lung cancer. My name is Dr. Rami Manochakian. I'm a thoracic medical oncologist at Mayo Clinic Florida.

Today, I have the pleasure to speak with two very well known, nationally and internationally, thoracic medical oncologists specializing in the fields of lung cancer. I have Dr. Karen Kelly, who is a professor of medicine and associate director for clinical research at the University of California Davis Comprehensive Cancer Center. And I am also joined by Dr. Jack West, who's a medical oncologist as well as associate clinical professor in medical oncology at the City of Hope Comprehensive Cancer Center.

In October of this year, the FDA approved atezolizumab for adjuvant treatment of stage II to IIIA non-small cell lung cancer following a resection and platinum-based chemotherapy. This is the first adjuvant immunotherapy approved for lung cancer and has the potential to improve cure rates. In this podcast episode, we'll discuss how to implement this new therapy in the care of real-world patients.

We're going to start the conversation today with a patient case. We have a 64-year-old woman who is a 15-pack-year smoking history, quit several years ago in the 1980s, and was found on a screening CT to have lung adenocarcinoma. She underwent a full workup that included a negative EBUS and ultimately underwent a surgical resection with right upper lobectomy.

Surgical pathology showed a 3.2-centimeter invasive adenocarcinoma with some additional lepidic noninvasive AIS, and two out of eight N1 nodes were positive. The final staging was a pT2aN1 stage IIB disease. She had a molecular testing that included NGS that showed an EGFR activating mutation in exon-- 21-L858R substitution with no other driver mutation. And PD-L1 was checked, and it was 2%.

And we'll start with the first questions. And I'll start with Dr. Kelly, and then we'll ask Dr. West also to give his opinion. Given the currently available treatment and the new approvals, all the research evidence and guidelines that we have as of now, 2021, how would you manage this patient?

KAREN KELLY: Well, I think that that is a great question. And of course, for this patient, who does have that EGFR L858R mutation, that is a very important finding to have. And I applaud the ability to get the NGS sequencing, because that is important here, for patients today, based upon ADAURA results, which was the randomized trial after resection for patients with early-stage disease who got chemo or not, randomized to osimertinib versus placebo.

And so I think for this patient with that EGFR mutation, my driver in my treatment plan after adjuvant chemotherapy-- and I do want to make that important distinction here that, even though ADAURA did allow patients to not have chemotherapy, we are strong believers in evidence-based medicine that has shown that adjuvant chemotherapy has improved survivals and cure rates in this patient population. So after, I would begin with giving adjuvant chemotherapy for four cycles, cisplatinum-based. And then, based upon ADAURA, offer this patient osimertinib.

I do not believe that this is a patient that would benefit from a immunotherapy regimen. And I'm going to let Dr. West talk about that component of this case-- that immunotherapy, I believe, would be contraindicated.

RAMI MANOCHAKIAN: Excellent. Dr. West?

JACK WEST: I would say that some in the audience may know that I've had some issues with the design of ADAURA and had been critical of it at the time of its release. And I think it is always a little challenging when we have disease-free survival results, but not overall survival in a curative setting, because I believe our goal here should be to improve survival. And it's not clear, particularly with a treatment that is still ongoing, whether this is really just forestalling progression and going to translate to a survival benefit. So that comes up with ADAURA.

But that said, we are now in a situation where we have a remarkable improvement in disease-free survival with ADAURA that gave the adjuvant osimertinib for patients with a tumor harboring an EGFR mutation. And we don't yet have mature data for overall survival. I think we need to work with what we have, and that is giving the patient the benefit of the doubt and presume, until we see otherwise, that the remarkable improvement in disease-free survival will, we hope, translate to an improvement in overall survival.

So certainly, for patients with node-positive disease, I would definitely favor at least offering, if not clearly recommending, osimertinib. I would talk about the caveats that we don't yet have overall survival, but I would say that, based on what we know, with the limitations, I would be encouraged and would favor that.

And the important challenge, I would say, is what to do when you have potentially competing options, like adjuvant immunotherapy, specifically-- now in FDA approval for adjuvant-- atezolizumab, based on IMpower010 results that we first saw at ASCO in 2021 and have learned more about. And the results are also very impressive for at least a subset of patients, specifically those with stage II to IIIA disease and who have PD-L1-positive disease.

I would note that, when looking at subset analysis of IMpower010, the benefit is much more impressive in the subset of patients whose tumor has PD-L1 expression in the high range, 50% or higher, where the hazard ratio for disease-free survival is 0.43. And in contrast, for the patients with low PD-L1, that hazard ratio for DFS is 0.87. And of course, we don't yet have overall survival for this trial either.

So I would say that there is, arguably, a question of what you would do if someone has PD-L1-positive disease and an EGFR mutation. But I would note that we have seen in advanced disease that patients with a driver mutation-- say, particularly, EGFR-- are overwhelmingly more likely to benefit from targeted therapy against EGFR than immunotherapy. And if anything, it seems that PD-L1 expression for patients with an EGFR mutation or an ALK rearrangement doesn't necessarily mean the same thing as it would for someone with wild-type disease. It just is not nearly as strongly predictive of benefit, and the benefit with targeted therapy is far greater.

RAMI MANOCHAKIAN: Thank you to both of you. Really, I think you brought both a great point. I like what Dr. West said about we need to give the benefit of the doubt. We need to deal with what we have, because right now we don't have the OS benefit, talking about, obviously, the ADAURA, or even the IMpower.

And discuss with patients. Discuss what we're doing. Include them in the treatment decision and plan, and tell them this is why we're considering this and not. It appears that everyone feels that this patient, obviously, would not be the best candidate for adjuvant atezolizumab. Rather, very possibly get an adjuvant targeted-therapy osimertinib.

Speaking about adjuvant atezolizumab, I want to ask, who else you would not recommend, maybe, adjuvant atezolizumab to? And I'll start with Dr. Kelly again.

KAREN KELLY: So I think that we have learned a lot about other driver mutations based upon what we know about EGFR. And EGFR really has been the prototype for all the other mutations. And pretty much, they align with the findings with EGFR, particularly those of ALK, ROS1, and then we get into RET. And we can also talk about HER2.

And I think the difference here, between that category and that group of oncogenic drivers, is that they're characterized by being in patients who are never smokers. And so in my opinion, this group of patients that have those additional mutations-- either ALK, RET, ROS1. I would say, also, HER2-- those never-smoking, oncogenic-driven aberrations, really, would probably fall, in my opinion, into the same category that I don't think that they would be the best for atezolizumab.

I also base that on retrospective data from the IMMUNOTARGET data that came out in advanced disease, with monotherapy looking at a retrospective large series, multi-institutional, that showed that there really wasn't a benefit for mono-immunotherapy.

Now, I will say that, of course, we do have oncogenes that are smoking-related-- that being KRAS G12C, now, remembering that not all KRAS are smoking-related. But something like KRAS G12C. BRAF, typically, as well. Half of the MET oncogenes are in patients who are smokers. So I think if you're a smoker and you have an oncogene, then I think that it would be reasonable.

Again, based upon retrospective data-- I would say even based upon my own data from California-- we have found similar results. Even when you give immunotherapy with chemotherapy in patients with oncogenic drivers, they just don't have a benefit from immunotherapy. And I think we can logically make sense of that. They are more simplistic tumors. They don't have high tumor mutational burden. They don't have high PD-L1, for the most part. They're typically more characterized as being cold.

So I think it does make sense that this group of oncogenic-driven cancers, particularly those in never-smokers are really more cold tumors and don't respond. So I would add these others to the list that we do have data on, and that, of course, is EGFR.

RAMI MANOCHAKIAN: Dr. West, your thought? Especially, it looks like we're heading one way or the other to say that every patient with early-stage needs NGS testing.

JACK WEST: I think that we are in a challenging place where the principles are ahead of the actual data that we have. I think that we have been struggling with this for a few years now with things like the PACIFIC trial, where we've had very impressive data for not just disease-free survival, but now overall survival. But that was a pretty broad, inclusive population. It included patients with an EGFR mutation, ALK rearrangement, and didn't really specify otherwise.

And so the question is, do we broadly interpret that, well, if they were eligible for the trial and the trial is positive, they should be treated this way? Or do we make, I think, very logical inferences from stage IV disease that not only do these patients often not seem to benefit at all from immunotherapy, but that we could put ourselves in the challenging situation of giving immunotherapy and then having their cancer progress, and needing to give them a targeted therapy where there could be a harmful interaction between the osimertinib that we want to start and the immunotherapy that is still in their bloodstream?

And so that's a real challenge. So I think that we need to, now, do some extrapolation. And because of that, it does make sense to want to have this information to individualize the recommendations for the patient. And it's not a big leap, based on what we know about ALK, to presume that these patients are not going to be big beneficiaries or, likely, beneficiaries at all from immunotherapy.

I agree with Dr. Kelly about ROS1 and some of the other never-smoking-related driver mutations. I think it is important to say that we shouldn't paint all driver mutations with the same brush. We have seen from IMMUNOTARGET that KRAS and BRAF are not in the same category, and so we need to think of these individually. But I do believe that this information is going to be really helpful to make an informed, thoughtful decision for the individual patient in the exam room with us about whether they personally are likely to be beneficiaries of immunotherapy, targeted therapy, or whether they should withhold all of those.

KAREN KELLY: Can I make one additional statement? I just want to add to what Dr. West said, particularly raising awareness about the harm factor. I think, as physicians, we're very focused on wanting to help the patients in terms of, when we look at these biomarkers, let's look at them and give you what works for them. But we have to remember now, with the oncogenic drivers, that we can potentially harm them if we give them immunotherapy.

So I think we have to remember, now, the harm factor really comes to the forefront when we talk about immunotherapy and oncogenic drivers and the critical importance of knowing. Yes, we want to know if we can give osimertinib to those patients who are EGFR-positive. But in the same breath, we want to say, oh, immunotherapy would be harmful. So I think that's a little bit of a switch that we have to, as physicians, remember to have that really important conversation about why we don't want to give them immunotherapy.

I will say, many of my patients with EGFR or ALK or ROS-- they come in, and they want immunotherapy. And you really have to spend time explaining to them why they are not the best candidates for immunotherapy.

RAMI MANOCHAKIAN: Great point, great point.

And just one very quick question before I move two Case 2. Are you both testing for NGS for every early-stage cancer patient that comes to your clinic?

JACK WEST: I'll say that I would be most inclined to do that for a patient where it's likely to have an impact in the more immediate future. I would not say that I feel that this is a mandate for someone with a less-than-2-centimeter nodule, node-negative disease. You can argue that it would be nice to have this information at the time of relapse. But I think that, in general, you'd want to biopsy to confirm progression, relapse, disease, and the most important biology is what it is at the time of relapse and not what was resected two years earlier.

So to me, if it is potentially going to have ramifications for immediate management, so certainly for a node-positive cancer, I would say so. I think it's debatable about whether to do this in someone who has a significant smoking history and a squamous cancer, because the pre-test probability is not high. So I don't want to be too heavy-handed about that, but I would say it makes a lot of sense to think and act beyond the narrow indications that we have now just for looking at EGFR as well as PD-L1.

KAREN KELLY: Yes, I think to the point of harm. I think that we do need to be doing NGS testing in these patients that, I would say, meet the eligibility criteria from the 010 trial, in terms of adenocarcinoma.

I do agree with Jack that a small 2-centimeter tumor-- I wouldn't be checking that. But if you meet the eligibility requirements, and you're thinking along those lines for that patient, then I definitely would do the NGS, not only-- as I said, because you don't really want to harm a patient. If you don't know that they have RET or ROS, you could potentially harm them if you gave them immunotherapy. So I think that is my point. We've got to remember. Now we have to think about helping our patients, but also not harming the patients.

RAMI MANOCHAKIAN: Excellent. Thank you.

I'm going to move on to Case 2 briefly. This is more of a case of a patient that is a good representative of a patient who meet the eligibility for the IMpower trial that led to the approval of atezo. 71-year-old male who presented with chest pain. Workup showed a mass, a 4-centimeter left-lower-lung mass. A full workup, including PET and EBUS showed that lymph nodes were negative.

Also underwent left-lower lobectomy, and his staging was stage IIB, T2b, N1, with two hilar lymph node were positive. So again, very similar to the first case. A little just different size. NGS testing here did not reveal an actionable mutation, and PD-L1 was high, at a 60%.

So simple question, Dr. Kelly. Is this patient a candidate for adjuvant atezo? What benefit would you expect to see? I know we touched base on it a little bit in the first case. And then, how would you talk to your patient about potential side effects?

KAREN KELLY: So I think that this is the ideal patient for adjuvant atezolizumab, based, of course, on that very high PD-L1 of greater than 50%. That's where the data and the driver of the positive results really came from with that hazard ratio of 0.43. Remember that, in the subset analysis of the 1 to 49, the hazard ratio was 0.8 or higher. So it was really driven by the high PD-L1 status. So I think that this is a perfect patient to receive the adjuvant atezolizumab.

When I talk to patients about side effects, I begin always with saying that we now have enormous data points about the side effects of all of the immunotherapy drugs, based upon stage III disease and stage IV disease and other diseases. And these agents are, overall, well tolerated, but they do have some risk of serious side effects that are related to inflammatory signs and symptoms.

And so I do think that it's important to have a discussion about what I just group as "itises" that patients can really have. Any "itis" can occur. But the seriousness is, really, anywhere between 3% and 10% of that.

And the other thing that I'm very vigilant about with the patients is that-- I remind them that these side effects can occur at any point in time while you are on the drug, and then through several months after you've stopped the drug. So I think that that's really important to be very vigilant. It's a very different approach than chemotherapy, where we really have a great understanding of exactly when those nadirs are. So I spend time making sure-- and every time I see the patient, going over that whole list again to make sure-- that they are doing well.

So that's really how I approach a patient. And of course, make sure that they have a good understanding of those side effects.

RAMI MANOCHAKIAN: Thank you, Dr. Kelly.

Dr. West, do you agree that this patient is the ideal candidate for atezolizumab and you would offer that?

JACK WEST: I would. And I would say that it's a slightly different situation from why ADAURA is compelling to me. And I would say that ADAURA is most compelling despite the limitations in DFS being assessed in the middle of ongoing EGFR-inhibitor therapy. Here, we don't have a hazard ratio of 0.12 or 0.17 or something like we did in ADAURA.

But it is certainly impressive, certainly for the high-PD-L1 subgroup. And this is in patients who have completed their therapy in the past, and the benefit is sustained.

We also know from the mechanism of action over years of treating patients with advanced disease with targeted therapies and immunotherapy that immunotherapy can have remarkably sustained benefit, even after patients stop it. And so it's not hard to envision that patients will have a time-limited course of immunotherapy and still have very sustained, potentially permanent benefit from it. So I am impressed by the improvement in disease-free survival, even if it isn't of the same magnitude as what we saw with ADAURA, because it is being measured after patients have completed that therapy, and in particular for the patients with high PD-L1.

I do think that we need to be very thoughtful about whether patients in the 1% to 49% group are likely to benefit, in terms of overall survival, because we don't yet have overall survival data. The hazard ratio for disease-free survival is 0.87 here. And we've talked about the risks with immunotherapy are not generally catastrophic, but a lot of patients will have somewhat modest but sustained issues with thyroid problems, et cetera.

And this is the adjuvant setting. Patients may already be cured, and you're talking about an additional year of coming into the clinic for therapy. That is very costly and can have toxicities that I wouldn't want to minimize. So for me, personally, I would say it is quite compelling for those with high PD-L1. It's something to discuss for somebody with low PD-L1 in the 1% to 49% range, but not something that I would consider nearly as striking a benefit.

It does seem to me, from the subset analysis, that much more of the benefit of immunotherapy is limited to those with high PD-L1.

RAMI MANOCHAKIAN: Thank you.

So in conclusion, if I ask each one of you, please, to give a word of advice for oncology providers regarding the implementation of adjuvant atezolizumab into routine care today-- and also, of course, we know this field is evolving in a very great and promising way. What are you envisioning in the near future will bring for patients with early-stage lung cancer and, of course, could change what we're talking about today?

Dr. Kelly?

KAREN KELLY: So first of all, I think adjuvant atezolizumab is a significant advance in the field of adjuvant therapy for lung cancer. Remember, we have not had an advance in many, many, many years. And in the subset of patients, particularly those with high PD-L1, I think the data is impressive.

To Dr. West's point about the 1 to 49, I do agree that we have to be careful, but we need more data. And I think that is where having the results of the other trials will be very, very helpful.

Now, we all know that PD-L1 is really a gradient. And so I do want to say that we can't just focus on one parameter from these trials. We do that, particularly, I think-- the PD-L1s greater than 50% with a hazard ratio of 0.43, a solid number there-- that works. But when you're at 45 or 40 or 30, you really need to take into consideration other patient characteristics and other factors in making those decisions. And of course, that's a shared decision with the patient as well.

So I think it's important to remember there are other factors that we all synthesize when we're talking to a patient and trying to make the best recommendation. So that's the art of medicine, is taking the science and putting it together to really help that patient that is sitting in front of you.

So nonetheless, this is an advance. And remember, this is how we started with stage IV disease. So I really do think, to Dr. West's point about the fact that these patients, after a year, are having this really impressive disease-free survival, we're very optimistic that that will translate into cures.

Now, I want to be clear here that overall survival doesn't mean cure. But again, if we look at cure fraction, I think we will see that with immunotherapy, because we are seeing that. And I know Dr. West and you also probably have cases where you're pretty confident that you've probably cured those patients with stage IV disease. We see that in a very silent way.

[LAUGHTER]

JACK WEST: I really agree. I have been commenting recently, reflecting that we have been pretty reluctant to say the C word, say "cure" for patients who have phenomenal unprecedented results with immunotherapy for stage IV disease, I think, based on our tenets that it's categorically not curable. But I think that immunotherapy has changed everything, and the rules are different.

I would say that the IMpowere010 trial is very important, does change practice, should change practice, and is just the beginning for introducing immunotherapy into the early-stage setting. There are many other trials coming, looking at immunotherapy.

In the adjuvant setting, we have seen very provocative data for neoadjuvant, which I think is also quite compelling and has the advantage of giving you more feedback about how your treatment actually worked. You're not treating blind. I think that in the next three to five years, we will have multiple different strategies, options to choose and that it's going to be a real quantum leap in how we translate some of the benefits that we have enjoyed in stage IV disease into earlier-stage disease to translate to better overall survival.

I think that we will begin to see that for some of these earlier trials, and so we will be able to talk not just about disease-free survival, but overall survival. We will be talking about this for immunotherapy and targeted therapies. And so just like it's been about 15 years since everything changed in the adjuvant setting with chemotherapy, this is the next iteration of that, where we are working on how best to refine our strategies in a more individualized way than chemo for everybody, but to personalize the optimal perioperative treatment strategy for the patient's individual cancer characteristics.

RAMI MANOCHAKIAN: Thank you. Thank you very much to both of you. I don't think we could have ended on a better note. It's definitely a hopeful era for patients with lung cancer. With all the recent advancements and research, I think our patients are living longer, living better. We still have a long way to go and, hopefully, more to happen in this field where we're able to offer our patients some personalized treatment depending on so many different factors.

This is all we have for today. I'd like to thank very deeply Drs. Kelly and West for a great conversation and for sharing their insight and expertise. Thank you to all our listeners. Thank you to our wonderful ASCO staff, and hopefully, for more ASCO Education Podcast to keep covering this topic of lung cancer.

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Thank you all.

JACK WEST: Thanks for the opportunity.

RAMI MANOCHAKIAN: Thank you.

SPEAKER 1: Thank you for listening to this week's episode. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning center at elearning.asco.org.

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In this episode, oncologist Bryan Schneider and infectious disease expert Adrian Gardner from Indiana University, share what it has been like to get knocked down with COVID-19 twice, care for patients during the pandemic, lead the University’s COVID response, and even a supreme court case on vaccination.

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Air Date: 12/7/21

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

PAT LOEHRER: Hi. I'm Pat Loehrer. I'm a director of the Centers for Global Health and Health Equity at Indiana University Simon Cancer Center.

DAVE JOHNSON: And I'm Dave Johnson. I'm a medical oncologist at UT Southwestern in Dallas, Texas.

PAT LOEHRER: Well, welcome back to ASCO's education new podcast series entitled Oncology, Etc. Today, we'll be joined by two outstanding guests, Dr. Bryan Schneider and Dr. Adrian Gardner. We're going to do a deep dive about COVID-19. And Dave, I was thinking-- I was reflecting on my life. The thing in medicine is when new diseases come out. So in our earlier lives, when we started there, was no such thing as Lyme disease, HIV/AIDS-- tumors didn't exist. And then just in the last couple of years now, we have COVID-19, the SARS CoV 2. And I think as physicians, it's kind of exciting. What's your experience been with the COVID-19 in the wards at Parkland?

DAVE JOHNSON: Well, it's been really, very challenging. You know, I don't know that the public yet has fully grasped the magnitude of this disease. I mean, 700,000-plus Americans have died of this disease. That's an astonishing number when you think about it. And I was just on the general medical wards just a couple of weeks ago with a wonderful team of residents and students. Patients with this disease are very sick. We often downplay it, but I'm telling you, these people are really quite ill and can get ill and symptomatic rapidly, within hours.

So this is a serious illness. But I agree with you. One of the things I told the residents a year ago was to keep a journal, that there are a few times during the course of your training and career where a new disease emerges, and you can be part and parcel of that. And keeping a diary of what happened is something that I wish I had done when AIDS emerged back in the '80s, or other disease processes, like Lyme, as you mentioned.

PAT LOEHRER: And syphilis for you, wasn't it?

DAVE JOHNSON: Well, that was sort of the [LAUGHS] Hippocratic oath days, but yeah, no. I think that was-- I think-- I can't remember. We were hanging out together at the time, so I don't remember exactly.

Yeah, no, it's been really remarkable. The thing that's been interesting to me is the response of individuals and their families to the disease, particularly once the vaccines came available. So maybe we can delve into that a little bit today, because I know one of our guests has actually experienced that himself, so we'll know more about that later.

PAT LOEHRER: I don't think, to be honest, that we could have a better collective wisdom than we have today with Dr. Schneider and Dr. Gardner, who will talk about their personal and professional and I think the global impact of COVID. I don't think there's any two people better than that. The only thing we could do better is if Anthony Fauci was here by himself. But these guys are tremendous people.

Dr. Gardner went to medical school at Brown, did his fellowship and infectious disease at Beth Israel, and then did his MPH at Harvard, and joined the faculty in Indiana University in 2012. When he was a student, he spent time in Kenya, with Joe Mamlin from Indiana University as part of the AMPATH program. And he came back to become the field director there. And he is just an outstanding person. He's now the director of the Center of Global Health for Indiana University and the Associate Dean for Global Health and has led the contact tracing for Indiana University. And he's going to give us some input from this.

Bryan, again, I've known forever. He's just an outstanding medical oncologist. He is now a Professor of Medicine and Medical and Molecular Genetics here at IU. He's a Vera Bradley chair of oncology. He is the founding chair of our precision genomics program and just a superstar in breast cancer as well as pharmacogenomics and was one of the first to describe the unique neuropathy associated with the taxanes in breast cancer. So it's just a pleasure to have both of you here.

DAVE JOHNSON: You know, Pat, it's great to have that talent there. It balances out the negativity of other faculty members. But that's great. Welcome, both of you.

PAT LOEHRER: I loved you a minute ago. I've turned mute on from a distance here. Adrian, tell me a little bit about yourself, growing up and how you got to where you were.

ADRIAN GARDNER: Sure, thanks. And thanks so much for the invitation and for being part of this and for the generous introduction. So as you said, Pat, I'm a product of an international environment. That's an important part of my upbringing, actually. I was born in Scotland to two parents that-- born and bred in Scotland and grew up in Scotland. I spent the first six years of my life really living in France and then moved to Lawrence, Kansas, which was quite a cultural shift, but spent four years there. And it was great, actually, time in my life to be there, before moving to the East Coast, where I went to school and did all my medical training.

So I'd had international experiences before, and I think that was an important part of my upbringing and something I sought for my kids, in the sense that it just immediately resets your sense of the world and makes you feel like a global citizen as opposed to just sort of more limited-- the community you're surrounded by.

But it really wasn't until my experience as a fourth-year medical student at Brown that I had the opportunity to see health care in a low-resource setting and see that. And that was a very powerful experience professionally and personally. And as you said, it was the time when Joe Mamlin was really just dreaming up what the HIV response was going to look like, this nice institutional partnership that we'd set up in Western Kenya.

But we set it up in the middle of the global pandemic. And true to our mission of responding and leading with care, felt a need to respond to the HIV pandemic. And that started really by-- was motivated by personal interactions that Joe had with some individuals who he saw firsthand come back to life, the Lazarus effect that has been reported. And that really spawned this whole response, changed my career and certainly my life, and had profound effects on my life.

So that's a bit of who I am as an individual and how I got to where I am today.

PAT LOEHRER: And we're going to touch on some of the work that you're doing now. But before I do, Bryan, tell us a little bit about and your background, where you grew up and how you got to where you are today.

BRYAN SCHNEIDER: Thanks to you, and Dave as well, for having me on. And this will be an interesting perspective, because I think I'm coming on here as the patient this time, so it'll be a different view.

But in contradistinction to Adrian, I am a pure Hoosier. I was born in the southern part of the state and raised there and then drove three hours north to Indianapolis, where I've set up for the last 25 years, and just been really lucky to be here at Indiana University. And Pat, you may not even remember this-- about 25 years ago, you were my formal mentor for med school, and so one of the influences and sticking around here along with some other real greats along the way. So have done, as you mentioned, breast medical oncology here in genomics and have had an absolute blast. So thanks for having me on.

PAT LOEHRER: Oh, we love having you. And just as an aside, Bryan-- one is I think the world of you, and so proud of what you've accomplished. But Bryan's backyard actually was the home of Henry Lynch, and where he first described Lynch syndrome down in southern Indiana. And I think no greater tribute in his legacy than what you have done with precision genomics. It's really terrific.

DAVE JOHNSON: Yeah. Maybe we'll have some time to delve into that. But actually, I'm curious, Bryan-- you mentioned that you've come on as the patient. My understanding is you've had firsthand experience with COVID, not just as a physician, but as the recipient of that wonderful new virus. Maybe you could tell us a little about that?

BRYAN SCHNEIDER: Yeah, an interesting experience to be sure. So about 2 and 1/2 months ago, I tested positive for COVID and got really sick. Yeah, my three-year-old son had brought it home from his preschool and infected his older brother, who's almost 12, and then my wife and myself. And so was a really fascinating experience, I guess, and brought about some aspects to the virus that I had never really thought about.

PAT LOEHRER: Now, Bryan, you also had COVID before, too.

BRYAN SCHNEIDER: Yes. And the first time-- I was probably one of the very, very early cases and got really sick with it and lost my sense of taste and smell. I actually got one of the purple fingers, which I went to the ER for. I thought I was having a or something. And at the time, those weren't well-recognized symptoms. And that loss of taste and smell went months for me. So, yeah, I think I have frankly had the infection twice. The second time, though, was documented and certainly got really sick with the second one.

DAVE JOHNSON: Can you elaborate on your second case? When you say you got really sick, was it a respiratory illness or were there other symptoms?

BRYAN SCHNEIDER: Yeah, there were two aspects to it that were interesting. I think the first was physical. I got a sense of fatigue that I don't know that I have ever experienced before. It was one that I literally just could not get out of bed. And you know, I lost about 10 to 15 pounds from just being anorectic. And I'm not an overly thick human to begin with.

But the big one was shortness of breath. And we had a pulse ox at home. My wife's a pediatrician, and I was sating in the high 80s. And I work out five or six times a week, so keep in pretty good shape, and I was stopping midway up the stairs to sit down, because I felt really tachycardic and just lightheaded. And so that degree of physical punishment is something like I have never expected or felt before.

But the psychological part of it was really something I did not expect. And one part of that was an odd sense of guilt. I was getting texts and calls from a lot of friends checking on me, and many were baffled and asking, hey, did you not get vaccinated? Or what was going on with that? And so that-- it was a very odd sensation to me, because I, of course, had been vaccinated and I mask and all those sort of things.

The other was one of real fear. I worried-- you know, luckily, I guess, our family all got infected around the same time, so we didn't have to think about quarantine. But I started wondering, could I have infected a patient? I take care of immunosuppressed breast cancer patients, before I was symptomatic. And then even after I came back to work, I had quarantined for quite some time, but I was really fearful. I would find myself double masking, washing my hands incessantly, and even holding my breath when I was trying to listen to heart and lungs during examination. So that sort of psychology was something I don't think I really expected with this infection.

DAVE JOHNSON: How long did it take you to get beyond that, or are you beyond that part?

BRYAN SCHNEIDER: Yeah. You know, I feel back to my baseline now. And I certainly don't worry about it on a day-to-day basis now. But my first clinic or two back was really hard for me, psychologically and emotionally. And part of me even wondered, should I profess to all my patients that I've had COVID? Or what things can I do to help protect them? And again, it was that mental aspect that I just didn't really anticipate prior to heading back to my clinic.

DAVE JOHNSON: You know, this is eerily reminiscent of the physician who's had cancer who experiences extreme fatigue for the first time, chemotherapy-induced fatigue, after having described it many, many times before--

BRYAN SCHNEIDER: Right.

DAVE JOHNSON: --and who has a guilt sensation in many respects as well. So quite the experience, for sure.

PAT LOEHRER: Dave was talking about himself, by the way.

BRYAN SCHNEIDER: No, I can only imagine. And you're right. We do try to paint a picture to patients about how things are going to feel, and it's amazing. When it's internalized or when you're feeling, it's-- it can often bring about a sense of, wow, I don't know that I-- I may have underplayed this to some of my patients in the past. And it really does provide some degree of empathy that's hard to capture if you haven't felt it.

DAVE JOHNSON: So when I was on the wards, Bryan, I must confess, there were times when we walked into a patient's room with COVID who, of course, had not been vaccinated long after the vaccines were approved. Our professionalism prevents us from doing anything other than taking care of those people, but I'm wondering how you feel about caring for patients who have not been vaccinated or refuse to be vaccinated.

BRYAN SCHNEIDER: Yeah. I mean, I think probably similar to a lot of people listening here today, it's a bit frustrating. And I think we all take care of patients who have a really tough diagnosis. And we're in the interesting field of giving patients medications that really immunosuppresses them, so we spend time counseling on the fact that you may get really sick or hospitalized or even die from neutropenic sepsis. And I think that is something that rests really hard with patients who are already dealing with a life-threatening diagnosis.

And so now, trying to do that counseling in the face of a global pandemic like we haven't seen for a hundred years has really brought around a sense of duress and distress in my patients like I've never seen before. You know, I even had a patient who moved away from her family to be quarantined during adjuvant therapy, which I, of course, recommended against. But it really impressed upon me how big a deal this was.

And so to see their frustration, and then in contradistinction, understanding that some people didn't want to pitch in to help-- it was very frustrating and honestly just made me very sad for people who I know were really struggling with this.

DAVE JOHNSON: Actually, I had one more question to ask you. You mentioned coming back-- did you, in fact, share your diagnosis with your patients? I mean, I-- when I had cancer and came back, I made a pact with myself that I wasn't going to do that. But then I learned that the nurses were telling patients that I had cancer, and I found that it actually was helpful to share that diagnosis with many of my patients so that they could ask questions and feel that they had someone who really had experienced what they were either going through or about to go through. So I'm wondering how you've shared your diagnosis of COVID with patients, if at all.

BRYAN SCHNEIDER: No, that's a great question. And I may have followed a similar pattern. At first I didn't. I didn't know what to do, to be frank. I didn't know if my saying that would make that patient, in that moment, more stressed out or worried, and I certainly didn't want to add to that. So I took it upon myself to try to make myself as safe to them as possible.

But now that I've had a little chance to reflect on it, I have shared it. And I think for some of my patients, it's been good for them to hear what that experience was like. I think it's also-- Dave, as you probably know, I think it also reminds them we're human, too, and we experience some difficulty with physical health and I think in some ways it allows us to bond in a little bit deeper way.

DAVE JOHNSON: I agree.

PAT LOEHRER: I want to turn the attention over to Adrian now. Adrian, you're in a unique position, obviously one because of your experience in Kenya, and we want to hear about that, but also your responsibility for Indiana University. What some of the listeners may recall is that there was a decision made that you were part of that actually mandated that students in Indiana University be required to have vaccination before they came to school.

We were in Kenya at the time when we heard that there was some consideration about that from the state legislature in terms of how-- mandating that. And eventually, this was a case that in which eight students took this case to cohort that eventually reached to Amy Coney Barrett, who decided to find in favor of Indiana University. It was a landmark decision here.

But tell us a little bit about your experience on the leadership role of COVID and the impact that you see in terms of yourself personally and from the field of the university.

ADRIAN GARDNER: Yeah. Thanks, Pat. I think it's really two different worlds in my mind, in some ways, although clearly linked by this global pandemic. You know, I was just finishing my eight-year stint, essentially, in Kenya in March of 2020 when we got the news that the entire world was about to be declared a level 4 by the State Department. And well, that-- I remember actually talking to Joe Scodro on the phone. And he's like, what the heck does that mean? That's not in our playbook of what we do when things happen and we need to bring trainees home and sort of--

PAT LOEHRER: Scodro being the lead counsel for Indiana University here.

ADRIAN GARDNER: Thank you. Yeah, yeah. So for me-- I mean, obviously I was making a transition back to a US-based career in this position as the Director for the Center for Global Health. But you know, I had a dramatic change in my position, right? I mean, who is going to do global health operations in the middle of a pandemic? Well, nobody, because nobody was traveling.

So we had really shifted all of our Kenya operations to a virtual support. We pulled all our trainees and long-term faculty back, initially. And my own position here is-- got pulled into a leadership role in Indiana University's response to the pandemic, along with three other physician leaders. And we all took on a different component of the response.

So I was involved in the contact tracing, in part because we had some experience with contact tracing and global settings and tuberculosis and HIV. And while the transmission dynamics are obviously quite dramatically different and has different implications, but some of the principles around contact tracing were similar in the sense that contact tracing is not about really a stick, but it's more about extending a carrot and extending the support that allows you then to create an enabling environment-- and a quick phone call, in this case-- to allow people to identify what it is to quarantine and isolate effectively.

To get to the Supreme Court issues and around mandates-- I think it was fairly obvious-- we were part of a restart committee that had been put together by the Dean of the School of Medicine, Jay Hess, and it was fairly noncontroversial among that group that we were going to need vaccine as we marched through this. And we immediately set up a lot of testing infrastructure and what we called mitigation testing at that point of asymptomatic individuals in addition to creating systems that enabled people to-- with symptoms, to enable testing very quickly and to get results back and to get that whole infrastructure in place.

But it was pretty obvious to us-- it was a group of medical, public health, and ethics and legal folks-- that we were going to need a high level of immunity to get back to anything normal, right? And as we began planning for the summer and the fall of 2021, it was like-- it's a no-brainer. I mean, the only way you're going to get high levels of immunity, if you want to bring people back into the same classroom, if you want to have people living in dormitories, if you want to have them engage in the normal activities that college kids want to engage in, then you've got to have a very high level of immunity. And the only way to really achieve that is going to be through vaccine mandates.

And again, it wasn't-- it didn't feel unprecedented, because you have to get a whole bunch of vaccines when you go off to college or when you go to elementary school. And that's really the only way to achieve that high level of coverage that allows us to not have a bunch of measles in our environment. And we still have mumps, despite high levels of coverage.

But yeah, it felt weirdly noncontroversial. But of course, the whole politicization, I think, of the whole response to the pandemic made this more controversial. And clearly, there are people that feel very strongly about it. But I think this-- framing it in a context of personal freedom versus public good has not been particularly healthy for us as a country. I guess I'm not terribly surprised that the Supreme Court ultimately ruled against the preliminary injunction. I think the formal case is still pending, but it's maybe been overtaken by events, because now there are government mandates that are requiring vaccine or regular testing of just about-- lots of different industries and government employees and things.

So I think it was important that we took a stand on this. And I think it has set a precedent, I think, for other universities. There were initially some hospital systems doing the same. But I think it's made it a lot easier to keep moving through industries and health systems with this kind of decision.

PAT LOEHRER: Parenthetically, there's-- this week, they announced the-- we've reached over a million cases of COVID in Indiana. But the lowest county for infectious rate is actually Monroe County, which is where Bloomington is, where Indiana University is. And it's less than half of the rate of the state. And so I think kudos to you and the staff that have done this.

Just maybe briefly, could you reflect on your experiences in Kenya, here in the United States-- lessons learned by you or by the university or by public officials about the contrast? I am reflecting now about a patient I saw today, that-- we were talking about the booster vaccine. And unfortunately, in Kenya, most people haven't gotten their first vaccine, either. So reflect a little bit about the global impact as you've seen personally.

ADRIAN GARDNER: Yeah. So again, I think it's felt like two different worlds, but obviously struggling with the same thing, right? So I think on a global perspective-- so Kenya has-- Kenya got off to a pretty good start because they were kind of late to the game when it came to COVID, and they were able to jump on and learn from some of the lessons about physical distancing and shutting things down that actually enabled them to escape in the beginning.

Of course, there was probably transmission going on behind the scenes that we weren't detecting, and even till now, the numbers that are officially reported are really just the tip of the iceberg. I think know that. Kenya has only reported 250,000 cases and just over 5,000 fatalities nationwide since the beginning of the pandemic. But there are serology studies that suggest that 50%, 60% of the population may have actually been infected-- at least, right? And that's based on blood donor studies and things.

So I mean, I think some of the initial challenges, obviously, around access to PPE-- as we think about health care settings there, which are-- our partnership is based in, as you know. It's just the lack of infection control and the ability to even think about infection control because you're lacking space. As you know, Pat, in many of these wards in low-resource settings, there are two patients in every bed. And one might have active pulmonary TB and one might be getting chemotherapy for breast cancer. And it's less than ideal.

But as you think about how to respond to that, it's pretty hard when you don't have any space, right? I mean, we did a lot here in terms of retooling space and utilizing space that was not being used and putting in negative pressure rooms where they were needed and this kind of thing that just weren't options in Kenya.

One good news was that I think in Kenya, in particular, the testing capacity was able to get an early jump because the HIV infrastructure, PEPFAR, the President's Emergency Plan for AIDS Relief, had established seven regional laboratories that were obviously running HIV viral loads and so had PCR platforms. And they were able to rapidly retool those and convert them into COVID testing laboratories for PCR.

So that was good, but then never really got to the same point where we need to get to, which is that it's readily accessible to everyone in rural regions and rapid testing in order to inform triage protocols [INAUDIBLE] patients and try to figure out how to develop that. So there's been testing available, but just not in the quantities that were sufficient.

You know, I think we've been able to work across virtual platforms to share knowledge about management and clinical protocol development. That's been another success story. Certainly our partnership is longstanding and so has allowed those relationships that have withstood the test of nonpersonal interaction.

And of course, the biggest elephant in the room now is this issue of vaccine equity, as you pointed out. So about 5% of the population in Kenya has been vaccinated. Part of that is vaccine access. Part of it is probability distribution infrastructure. Think about low resource settings-- many of them do quite well with vaccine delivery, but they're early childhood vaccines, right? So they have whole infrastructure around maternal child health that's set up to do this.

There's not a lot of infrastructure for rapidly mobilizing 50 million adults to try and get them in for a two-shot series. So how do you do that? I mean, yes there are some community assets in terms of community health workers and things, but so far, at least, the vaccine quantities available have not been sufficient to allow that kind of infrastructure to really take over, at least in Kenya. But it holds promise, I think.

But then they also are up against the same, I think-- some of the same challenges that we face here in terms of vaccine misinformation and lack of trust. This is an area where I think trust is really key ingredient in health systems, and I think we've seen it in our own inequalities that have been made very, very obvious in our own country and really, the issue globally. And it's not a new lesson. We knew it from Ebola and other very obvious infectious diseases that have resulted in high degrees of death because of lack of trust.

When I have taken care of patients here and I've had those same experiences that Dave was talking about earlier, where you want to just ask the patient, so why didn't you get vaccinated? As an infectious disease provider, we've been called in to a lot of these cases, and I've taken the opportunity to ask a couple of times-- not in a judgmental way, but trying to set the stage and just-- what is it about the system? And a lot of-- some of it is misinformation. Some of it is this politicization and political bias.

But some of it is just a very subtle mistrust and this notion that you don't feel completely welcomed or resected within the health care setting. And that's enough to just turn it off to this point where, eh, I'm just not ready to do that. And I think that's sometimes more subtle than we appreciate, but it has a huge impact.

DAVE JOHNSON: We're getting close to the end of our time. I want to pivot back, if I may, just for a quick moment to Bryan. This may be an out of-- from left field type of question, but we learned a lot about early chemotherapy from the infectious disease world. We took some of the infectious disease principles and applied them in the early years of chemotherapy.

Do you think there's much to be learned from a precision medicine standpoint from the COVID pandemic? What are you taking away from not just your personal experience but the larger experience, if anything? Or is that just-- is it just too early to say?

BRYAN SCHNEIDER: No, I mean-- I think I've always admired the speed and efficiency with which breakthroughs have happened in infectious disease. And I mean, the idea of a brand new virus coming on board a couple of years ago and coming to the point where we are today shows, I think, real innovation, but the ability to get behind a question and, as a community, answer it well. And I think from that standpoint, that's something that all disciplines, including oncology, can learn.

I certainly think we're seeing more and more intersection, too, with the way we think about treating cancer and its impact on immunity. And so certainly in that way I think there's real connections. But I do think some of the innovations that were brought about from the NCI with the vaccines are going to really also herald in things that will be game-changers in the world of oncology and therapeutics as well.

DAVE JOHNSON: That's great.

PAT LOEHRER: If I can throw in something, too-- I think, Dave, particularly as we talk about global health, many of the cancers that we see in the low-to-middle income countries are caused by viruses. One of the number one causes of cancer in sub-Saharan Africa is cervical cancer. We could eradicate that by getting vaccines out there.

In terms of the lessons learned, I think the lessons learned in oncology is that we need to deal more with population health and with prevention than we do with the treatment towards the end of the life. And hopefully that will be a lesson that we can take home with us around the world.

ADRIAN GARDNER: Yeah, and Pat, I think we do need to do better as a global community in terms of sharing vaccine and getting manufacturing up, and not just for vaccines but PPE and therapeutics. It's just not fair, the world we live in now. And at least we all know that and we take it for granted in some ways. But it shouldn't be this unfair, right? And that's been part of the problem globally, and it's part of the problem in the United States.

DAVE JOHNSON: Yeah.

PAT LOEHRER: But the tail end also is access to drugs for chemotherapy, too, and to have radiation available for all these patients. So it is-- this access is an important part of health equity globally. And I think it behooves all of us to be involved with this mission.

DAVE JOHNSON: Well, again, we've come to the end of our time. And we want to thank all of our listeners, but most of all, we really want to thank Bryan and Adrian for a wonderful interview. We really appreciate your time and you sharing your experiences with us.

Thanks again to the listeners for tuning in to Oncology Etc. This is an ASCO educational podcast. We want to talk really about anything and everything, so if you have an idea for a topic or a guest, we invite you to share that with us and email us at education@ASCO.org. So thanks again. And remember, Pat, I before E except after C.

PAT LOEHRER: [LAUGHS] Well, I'll see you later, then.

DAVE JOHNSON: No, wait a minute. Wait a minute. Eight, leisure, sovereign, weight, weird, foreign, vein, neighbor-- apparently it doesn't work.

[LAUGHTER]

My second-grade teacher taught me that rule, and it's just wrong.

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In the second part of this Oncology, Etc. episode Drs. Patrick Loehrer (Indiana University) and David Johnson (University of Texas) continue their conversation with Dr. Susan Desmond-Hellmann, exploring the prominent leadership roles she held, from first female Chancellor at UCSF to CEO of the Bill and Melinda Gates Foundation and member of Facebook’s Board of Directors.

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Air Date: 11/18/21

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

PAT LOEHRER: Hi, Everybody. I'm Pat Loehrer. I'm director of the Centers of Global Health at Indiana University, Melvin and Bren Simon Comprehensive Cancer Center.

DAVE JOHNSON: And I'm Dave Johnson. I'm Professor of Medicine here at UT Southwestern Medical School in Dallas, Texas. So Pat, we're back for another episode of the award winning "Oncology Et Cetera."

PAT LOEHRER: Just seems like last month we were here time, you know? Time just flies.

DAVE JOHNSON: Exactly. Before we get started, you were telling me about an interesting book you were reading-- something about friends or something. Can you elaborate?

PAT LOEHRER: Sure, sure, yeah. This book I picked up-- actually, my wife picked it up. It's called First Friends.

It's written by Gary Ginsburg. It's a really interesting book. It was-- basically talks about-- it probably has about eight or nine presidents but the importance of having a friend that guides him.

And these were people that were, in many ways, unelected people that were close to the presidents that helped change the face of what we see today, and some of them are stories of really good friends and some of them are, I think, opportunistic friends. But it gives you a background of people like Madison and Lincoln and Roosevelt and Woodrow Wilson. It's actually a fun read.

DAVE JOHNSON: I'll definitely put it on my reading list. It sounds like a pretty exciting one. Well, speaking of influential people, we're really excited to jump back into our interview with Dr. Helman.

In our last episode, we covered her early life and career, her work in Uganda, her views on global oncology, and her experiences in private practice and industry. In the next half of our interview, we'll learn more about her incredible career and her multiple leadership roles. Let's start by hearing about her time as chancellor of UCSF.

PAT LOEHRER: Let me transition a little bit. What I'd like to do is talk a little bit about your leadership. One Of the next big roles you had, you became chancellor at UCSF, correct?

SPEAKER 2: Mm-hm.

PAT LOEHRER: And so as Dave said, I think you were the first woman in that role.

SPEAKER 2: I was.

PAT LOEHRER: You were a groundbreaker from that capacity. So now instead of working for people-- obviously, I understand that there's people you work for when you're chancellor too, but tell a little bit about that transition from industry back into academics and how that felt in the role of being a leader and then maybe the responsibility of being the first female chancellor.

SPEAKER 2: There were parts of being the chancellor at UCSF, I would say most parts of it, that I just thought were fantastic. I loved being back at a hospital and clinics. Just the way the hospital and clinical enterprise at UCSF works, the chancellor is the board.

And so once a month, you'd have neurology or cardiology come and tell you about what had happened, quality control, things that had gone on and I would have done that all day long. I mean, it was just so interesting. It was so important to run a great clinical enterprise that getting back closer to patients and medicine I thought was fantastic.

The other thing was the educational enterprise, and UCSF, as you know, has medicine, pharmacy, dentistry, nursing. I always tell people, no undergraduates, no English majors, no marching band. And the other chancellors reminded me, no athletic director, which apparently is a very good thing.

So UCSF is a very special and unusual place. And I loved the science. I would show up at research seminars and things like that as often as I could. So there were so many parts of being at UCSF that I thought were just off the charts great.

The hardest thing about being at UCSF-- being the first female chancellor, I think, was challenging but not in ways that you might expect. I was used to being a woman leader in medicine and biotech, which was unusual. So being the only woman in the room, being the first, wasn't new to me.

But the thing that was hard on our family was there are roles for the spouse of the chancellor that fit more neatly into more of a classic female role, hosting things. There was a tea party for the wives of the faculty that the wife of the chancellor typically had. And for some reason, Nick didn't think that that suited him. We sort of laughed about that.

DAVE JOHNSON: He can't make tea?

SPEAKER 2: He can't make tea to save his life. And he's a strong introvert, which made it worse. I will tell you, some of the under-recognized, underreported people in life are spouses of chancellors and presidents of universities.

And talk about unpaid labor-- my goodness! And so we sort of struggled with how did Nick show up, what did that look like. Because we didn't have any role models for what that looked like. I still laugh that Bill Clinton said he would be First Laddie.

So when you have a pattern recognition, life is easier. And then being one of 10 chancellors at the UC system, I struggled a little bit with the UC Regents just because it felt-- I became chancellor in 2009, and we had some fiscal realities that we were dealing with. And the pace of the UC Regents and the format of the UC Regents, I actually made a proposal for UCSF to kind of break off from the other 9.

And that was not well-received, got me in the newspaper. And I did not do that again. People saw it as disloyal and not very smart. But all in all, I thought then and think now that our public universities are absolutely-- they're treasures in America. And I was really proud to be a part of it and hope that I had made a contribution.

DAVE JOHNSON: Speaking of leadership, what was it like to be CEO of the Bill and Melinda Gates Foundation? What caused you to step away from chancellor to philanthropy?

PAT LOEHRER: It's not a step down. It's not a step down, basically.

DAVE JOHNSON: It is not a step down.

SPEAKER 2: So I would say a couple of things. First of all, Bill and Melinda pushed me hard to take the job. I was not looking to change.

My husband worked at the Gates Foundation for a couple of years on HIV. So they knew us, and they knew Nick better than me. But they knew both of us.

We awarded Melinda the University medal at UCSF. And to my great surprise and happiness, she accepted and came. I later think that she was using that as a reason to talk to me about the CEO job, but she got a twofer.

And I was really compelled by the mission. Who wouldn't be? I was really compelled by the mission and the chance to get back into global health after the experience I had had in Uganda.

But I'll tell you, it is the ambition of the Gate Foundation, the scope of the Gates Foundation, the resources, and the need to get something done. I tell you, it is hard work. It is really hard work-- from China to India to all of the continent of Africa and then US education.

Throw that in on top of things. So I was thrilled to be a part of driving the agenda and the mission. Some really talented people who are working very hard at the Gates Foundation-- I was surprised, especially on US education, with the amount of pushback. And I worked really hard to be successful at working with Bill, who's known as a tough character and lived up to that mutation.

DAVE JOHNSON: Good to know, just in case he calls Pat or me.

PAT LOEHRER: Yeah, yeah, I'm not going to get a medal at UCSF either. So that's a--

DAVE JOHNSON: You never know, Pat.

PAT LOEHRER: It's a non-starter. And this may not apply to you, but there's a lot of maybe disproportionate number of women who feel they suffer from this imposter syndrome. To be honest, Dave and I have talked about that.

We both feel in that syndrome too. But along the way, I mean, if you think about growing up in Reno, Nevada, and suddenly now being a chancellor and head of the Gates Foundation, the National Academy of Science, was there ever this sense of the, wait a minute, you know, what's going on? Is this real?

SPEAKER 2: For me, there has always been that sense. There has always been that sense, and I look at it as I hope there always will be that sense-- that the kind of need to demonstrate your value. And there's a part of the imposter syndrome that is humility and not overestimating what you can do.

And so on my best days, I think that leads me to say I've got to work with really terrific people. My job is to bring out the best in others. If I lead, it's because there's a great thing we're going to accomplish, and I can help people see where we're going together.

And so I definitely have had imposter syndrome. But the one thing that I probably overused and kind of grew to like too much was the thing of people underestimating me and then proving them wrong. That gets a little wearying after a while.

It's like, OK, we're going to waste some time while you decide whether I'm worthy or whether I can do this. And let's not waste that time. Why don't you assign to me-- give me some confidence, and I'll live up to that.

And I mentioned Art Levinson was my boss for most of the time I was at Genentech. And he had no time for imposter syndrome. He was like, look, how many promotions do you have to get before you think, OK, I can get this done?

He thought that was sort of-- he just didn't have time for it. We have things to do, and he had jobs to get done. And one of the things I loved about him is he would constantly push me to say, you're capable of more than you think you are, which I think is the sign of a fantastic manager, which he was and is.

And so I've tried to push myself to do that. And the thing is, like, you can do this. Come to me for help.

We'll make sure you succeed, but don't underestimate yourself. And I think that's a consequence of imposter syndrome is both wasting time proving yourself and not taking on something that you think, actually, let me give that a try and stack the deck in favor of succeeding. And so I think that's the thing that-- there's a certain fierceness that I've always had that I like about myself that, like, of course we will succeed.

Failure is not an option. Of course we will succeed. And I think that comes from working on things that I value a lot and care about a lot.

PAT LOEHRER: You have been on a number of different boards, including Pfizer as well as Facebook. And in that capacity, you've seen a lot of leaders. Can you talk a little bit about the strengths and the weakness of various leaders as well as serving on the boards and the capacities of the different companies?

SPEAKER 2: Yeah, well, first, let me say I know ASCO is actually a really good about being careful about conflicts of interest and things like that, and I am too. So when I became chancellor at UCSF and then CEO at the Gates Foundation, I avoided being on life sciences boards. And so I got asked a lot by Biotech and pharma boards to be on their boards.

Initially, I joined Procter Gamble's board, where I served for, I think, about six years. And then I joined Facebook's board. And those were both fantastic experiences.

And I actually joined the boards for two very different reasons. One, P&G's board, I wanted to learn about branding and consumers. And I felt like in medicine, I didn't really learn about consumers or branding as much as I needed to or might.

And then Facebook's board I joined because as Dave mentioned, I was with Charles Sawyers. We wrote the precision medicine report for the National Academy. And I really love-- to this day, I love the concept of using the social network to connect people.

There was sort of an infamous story or famous story-- it's actually a good story-- of patients with a certain form of myeloma who found each other on Facebook and went to Genentech and said, make a new medicine for those of us with this genetic abnormality. And we'll all enroll in a trial. And so these connections to me felt really powerful on precision medicine.

And so getting to work with CEOs at Procter and Gamble, the CEO Mark Zuckerberg at Facebook, I do see the really different attributes of leaders. But when you're a board member, you see those attributes of leaders with a very different lens. What's the return to shareholders?

How does the community think about them? What's the impact-- and increasingly for Facebook, what's the impact on the world? What's the impact on our social discourse and our ability to have a free and fair election? A lot of those things became much more operative on the Facebook board while I was on the board and really tough social issues that continue to this day.

DAVE JOHNSON: Yeah, so we could go on for another hour, hour and a half, but I have one question to ask you which may seem a little bit silly in retrospect. But if you could look back on your youthful self at 21 or 22 knowing what you know now, with all the things that you've done during the course of your career, what advice would you give yourself? And perhaps I'll addend that by saying what advice would you give particularly to young women in the medical profession who are trying to balance that work-life balance that everyone talks about and worries about and struggles with, quite frankly.

SPEAKER 2: I'll give you one thing I should have done better and one thing that I think I did well. So the advice on the one thing I should have done better, I think slow down a little bit and take a bit more time for fun and enjoyment. I was extremely worried about money when I was in college, and being number two of seven-- every summer, I worked.

I remember at one point in medical school, I had three weeks off, and I got a job for those three weeks at a deli making sandwiches. And I went to college for three years, crammed it into three years so I wouldn't have to pay for the fourth year. So I just think that I could have taken on more loans.

I could have done some things to just dial it down a bit because you don't get those years back. And that's such a great time of your life when you're 21, 22, something like that. So I wish I'd have just slowed down a bit and not been so driven for those seven years of university and medical school that I really just either worked or studied all the time.

The thing that I feel like I did well, and I would say this to anybody who's going into medicine, is there's so many opportunities. There's so many wonderful things to do. But whoever your spouse is, whoever your partner in life is, take the time and energy to make sure that's the right person for you.

I feel so blessed. Actually, my husband, who I've mentioned several times in this discussion, Nick, was my roommate in San Francisco when I was an intern, like real roommate. And we've been roommates ever since.

And we're very compatible. He's one of seven kids too. It's another Catholic school kid.

And we just have fun together and support each other. And there's no way I could have taken these crazy jobs or done the kinds of things I've done without Nick. So having a wonderful, supportive partner makes everything better.

DAVE JOHNSON: That definitely resonates with Pat and me. We're both very blessed to have wives and spouses of, for me, it's 52 years. I can't remember, Pat. Yours is close.

PAT LOEHRER: I had my first date with my wife 50 years ago, yeah.

DAVE JOHNSON: Yeah.

SPEAKER 2: OK, so you guys know what I'm talking about.

PAT LOEHRER: Absolutely.

DAVE JOHNSON: Yeah.

PAT LOEHRER: Yeah.

DAVE JOHNSON: Go ahead, Pat.

PAT LOEHRER: I was going to ask a question that you probably may have already answered there, but Bob Woodward just came out of an interview with Colin Powell. One of the last questions he asked him was if he could reflect on that one person that was a moral compass for him. And so for you, that one person, alive or dead, that has been not the most powerful person you've met but the one that's really influenced you the most in terms of giving you direction, who would that be for you?

SPEAKER 2: Probably, if I look at through line the entire time I've been alive, it would be my dad. He had the ability to look at a room and find the person who was struggling and go over to them. And I really loved that about my dad.

PAT LOEHRER: I love it.

DAVE JOHNSON: One last question. So we're at the top of the hour, and I know you're a very busy person. Pat and I love to read, but we're also documentary fiends and whatnot.

We're interested. What have you read recently that really resonated with you? Do you have a recommendation for us?

SPEAKER 2: I will say during the pandemic, I've gotten back into reading biographies, which I love.

DAVE JOHNSON: Yeah.

SPEAKER 2: So I did the Caro, Lyndon Baines Johnson, which, Master of the Senate is really good. But my favorite book of the last two years is The Code Breaker, Walter Isaacson's book about Jennifer Doudna.

DAVE JOHNSON: Yeah.

SPEAKER 2: One of the things I love about Walter Isaacson is he teaches you science through his biographies. Like, I think I understand relativity based on his Einstein biography, which is great. But The Code Breaker is really super good.

DAVE JOHNSON: Yeah, we both read it. We couldn't agree with you more.

PAT LOEHRER: Love it. Love it.

DAVE JOHNSON: So Sue, again, it's been a real honor to have you as our guest, and we really appreciate the time you've taken. Thank you so much, and we hope you enjoy the beautiful weather in Alamo California, and I hope it does turn green and the rain continues for you.

SPEAKER 2: Thank you so much. It's been my pleasure. Thank you both.

DAVE JOHNSON: Take care.

SPEAKER 2: Bye.

DAVE JOHNSON: I want to take the moment to thank our listeners for tuning in to "Oncology Et Cetera," an ASCO educational podcast where Pat and I really will talk about anything and everything. So if you have an idea or a topic you'd like to share with us and like for us to pursue, please email us at education@asco.org. Thanks again, and keep in mind that Pat is a giant in oncology, but he's a short instructor. Thanks, everybody.

SPEAKER 1: Thank you for listening to this week's-- to make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In the second part of this ASCO Education Podcast episode, Dr. Sonali Smith (University of Chicago Medicine) and Dr. Paolo Strati (MD Anderson Cancer Center) discuss the application of new therapies for mantle cell lymphoma and follicular lymphoma through examination of challenging patient cases.

Subscribe: Apple Podcasts, Google Podcasts | Additional resources: education.asco.org | Contact Us

Air Date: 11/15/21

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

SONALI SMITH: Hello, and welcome to part 2 of ASCO Education Podcast on New Therapies for Lymphoma. My name is Dr. Sonali Smith, and I'm a hematologist and medical oncologist specializing in lymphoma and clinical trials for lymphoma. I am also the Elwood V. Jensen professor and chief of the Hematology and Oncology section at the University of Chicago.

PAOLO STRATI: Hello to everybody. I'm Dr. Paolo Strati. I'm a hematologist, and medical oncologist, and assistant professor in the Department of Lymphoma and Myeloma and in the Department of Translational and Molecular Pathology at the University of Texas MD Anderson Cancer Center in Houston, Texas. In part one of this podcast episode, we discuss recently approved therapies for diffuse large B-cell lymphoma. And today, we will be exploring instead new therapies for follicular lymphoma and new therapies for mantle cell lymphoma.

SONALI SMITH: Wonderful. So we are going to start off today with a discussion about a patient case. The individual is a 55-year-old woman with previously untreated follicular lymphoma, low-grade advanced stage, and low tumor burden, and low FLIPI. She was diagnosed three years ago and had observation but more recently developed a 7-centimeter retroperitoneal mass with impending ureteral compression and no PET/C concern for transformation, specifically with an SUVmax of 5.3.

Despite this radiological finding, the patient had a performance status of 0, no symptoms, no significant comorbid health conditions, and was given R-CHOP time six cycles, followed by achievement of a CR. She was then observed, but, unfortunately, 18 months later, the PET/C showed diffuse low FDG-uptake adenopathy, and a lymph-node biopsy was repeated. This showed a follicular-lymphoma relapse.

So Dr. Strati, tell us a little bit about your approach to follicular lymphoma in the initial setting. Do you consider GELF criteria? And how do you select second-line therapy in this patient? Does the early progression of disease within 18 months-- she falls into the category of POD24, or the Progression Of Disease 24 months-- how does this affect your treatment choice going forward?

PAOLO STRATI: Thank you, Dr. Smith. Those are all very good questions. So going to your first question-- we typically use GELF criteria, as you know, developed in France now many years ago, most of the time of initial diagnosis. And that's to determine whether a follicular-lymphoma patient does, indeed, have an indication for treatment.

And this criteria, as you know, are based on lymph node size and number, oragnomegaly, cytopenia. However, it's still debated whether this should also be applied at time of relapse. And in this particular case, the patient, as you said, had what we call a POD24, or progression of disease within 24 months from initiation of chemoimmunotherapy.

Given the suboptimal outcome of these patients, I think that it will not be unreasonable to treat these patients even if they don't formally meet GELF criteria-- so even if they don't have formal indication for treatment at time of relapse. Once the decision is made, standard second-line options for patients with follicular lymphoma currently include chemoimmunotherapy

So if the patient received R-CHOP in frontline, it would be BR. But if they receive BR in frontline, of course, R-CHOP, but also, immunotherapy with R-squared-- so Rituximab, Revlimid-- or lenalidomide, a single-agent anti-CD20 monoclonal antibody, obinutuzumab, which is specifically approved by the FDA in the United States for rituximab-refractory follicular-lymphoma patients, and in very selected cases-- and this is still open for debate-- a high-dose chemo with a platinum-based agent followed by autologous stem-cell transplant.

We don't know at this time what's the ideal second-line strategy for patients like the one that you described in your case-- so a follicular-lymphoma patient with POD24. And to this regard, all are very eagerly awaiting the results of an ongoing SWOG trial, 1608, which is a randomized phase II study comparing in second-line chemoimmunotherapy, immunotherapy, and also, [INAUDIBLE] kinase inhibitor for this patient with POD24.

Finally, one thing which I think is important to consider is that even if R-squared is not currently approved by the FDA in the frontline setting in the United States and, actually, is not approved at all in Canada, in Europe as a frontline treatment, in the United States, it's possible to use it in frontline thanks to existing guidelines. And over the last few years, its frontline use in our country has actually meaningfully increased.

This is creating a new clinical scenario that we never met before. And there are no standard second-line options currently established for these patients, patients who receive frontline R-squared, emphasizing the need of translational research to understand more of the biology of patients who relapse after frontline R-squared but also, emphasizing the need to mostly look into clinical trials when these patients, unfortunately, experience a relapse.

SONALI SMITH: Yes, thank you, Dr. Strati. I agree. I think that it is the way that frontline follicular lymphoma and in the relapsed setting exists is that we have a toolbox and no real clear data on how to personalize the therapy. So your comment about needing some better translational work to fine-tune the clinical trials is really important.

So for this patient, though, she did receive R-squared for 12 cycles and achieved a complete remission after six cycles. 12 months later, a PET/CT showed diffuse, low-level adenopathy, "low level" meaning low uptake on a PET scan. And she had another lymph-node biopsy. This showed persistent follicular lymphoma. So now how do you select your third-line option knowing that we have biologic therapy, as well as cellular therapy, available to this patient?

PAOLO STRATI: So going back to the metaphor that I used before, we have a very nice toolbox, often third-line. But also, in third-line, there's really no strong, robust translational data to drive us when it comes to treatment selection. Agents currently approved by the FDA in the United States as a third-line standard option for patients with relapsed/refractory follicular lymphoma include, as you alluded, [INAUDIBLE] kinase inhibitors, currently three-- copanlisib, duvelisib, and idelalisib, and an EZH2 inhibitor called tazemetostat.

The three [INAUDIBLE] kinase inhibitors currently approved in third line have very similar efficacy with a response rate of 50% and a median progression-free survival of about 10 months. And the selection among the three is typically based on toxicity profile, which is more on the autoimmune side for duvelisib and idelalisib and more on the metabolic side with hyperglycemia and hypertension for copanlisib.

Also, one element that, in my experience, is typically used to select one of these three is the route and the frequency of administration because we have to remember that idelalisib and duvelisib are both given orally twice a day, whereas copanlisib is given intravenously three times a month. And so, of course, different patients may have different preferences.

As a matter of fact, though, the use of [INAUDIBLE] kinase inhibitors for relapsed follicular lymphoma in the United States and I would say, also, in other countries, is quite limited, mostly due to toxicity and relatively limited efficacy. Tazemetostat, the EZH2 H2 inhibitor that I mentioned previously, has a response rate that can vary between 30% and up to 70%, significantly higher in patients who do have a documented EZH2 mutation. But the median progression-free survival is about a year, no matter whether the mutation is present-- so not that different from [INAUDIBLE] kinase inhibitors in the same setting.

Of interest, given the short duration of response, we may consider these agents as a bridging therapy for follicular-lymphoma patients. We [INAUDIBLE] proceed with CAR T-cell therapy because, as you mentioned in your question, CAR T-cell therapy, and specifically, Axi-cel, has been recently approved by the FDA as a third-line option for patients with relapsed/refractory follicular lymphoma based on results from the ZUMA-5 study.

It's important, however, to emphasize that Axi-cel has shown better efficacy and safety data in follicular-lymphoma patients as compared to large B-cell lymphoma patients than we discussed in the previous episode of this podcast. And, as such, Axi-cel may potentially represent a curative option for patients with follicular lymphoma, a condition that, historically, has been considered incurable.

Tisa-cel and other CAR T-cell products targeting CD19 currently approved by the FDA for large B-cell lymphoma but not yet for follicular lymphoma, may also be soon approved by the FDA for patients with follicular lymphoma based on the ELARA study. And we're all eagerly awaiting the results of this study and, potentially, its approval in the next few months.

SONALI SMITH: That's great to hear. And, hopefully, we will continue to have more options, including more cellular-therapy options for patients. So this particular patient proceeded with the standard of care Axi-cel. That went quite well.

There was only grade 1 cytokine release syndrome, no neurotoxicity. And the patient achieved a complete remission on both the day-30 and the day-90 PET/CT. Unfortunately, there was relapsed six months later. So what standard options are there at this time? And would you consider an allogeneic stem-cell transplant at this point?

PAOLO STRATI: So I have to say that, based on some of my data, I'm not surprised this patient did quite well in terms of safety, and I'm very sorry to hear that was one of those few patients who relapsed after an initial complete remission after Axi-cel. In fourth line, our options are a little bit more limited. The FDA has recently approved in fourth line, for patients with relapsed/refractory follicular lymphoma, a new [INAUDIBLE] kinase inhibitor called umbralisib.

[INAUDIBLE] umbralisib response rate is quite similar to other [INAUDIBLE] kinase inhibitors, about 50%. However, the median progression-free survival that, as I mentioned before, is about 10 months for the [INAUDIBLE] kinase inhibitors currently improving third line instead has not be reached yet two years for umbralisib. And also, the toxicity profile seems to be more limited, similarly to idelalisib and duvelisib, more on the autoimmune side. Therefore, definitely umbralisib would be an interesting option for the patient case that you described.

As for your second question, the possibility to use allogeneic stem-cell transplant for patients with relapsed/refractory follicular lymphoma, retrospective studies have shown the allogeneic transplant is effective in follicular-lymphoma patients, particularly those with POD24, like the patient you described in the scenario.

But the transfer-related mortality is significant and needs to be taken into consideration. But most important of all, as CAR T-cell therapy has been approved for follicular lymphoma very recently, we really have no data regarding the use of allogeneic stem-cell transplant in follicular-lymphoma patients who relapse or progress after Axi-cel and CAR T-cell therapy in general.

This last statement really applies to any approach as, again, Axi-cel has been approved for follicular lymphoma only within the last 12 months. And this, once again, emphasizes the importance of translational research and clinical trials for these patients. And as such, I think that, along with umbralisib, there is a standard option. Clinical trial's definitely the best option for patients with follicular lymphoma whose disease is either refractory or relapses after CAR T-cell therapy.

SONALI SMITH: Yes. Thank you for these insights, Dr. Strati. I agree. The post cellular therapy, or the post CAR-T space is a very challenging situation, and I appreciate your perspectives. So as an update, this patient received umbralisib for six months and had an initial response with a partial remission but eventually progressed and then proceeded to a clinical trial, now on a novel oral-immunomodulatory agent and has been in a complete remission for four months.

PAOLO STRATI: That's great to hear. And I hope that this remission will be durable, emphasizing, again, the importance of clinical trials for patients with lymphoma in general, and particularly, those who relapse or are refractory to standard treatments. It was very interesting to listen to this case. Thank you for asking your question, Dr. Smith.

I'm going to ask your opinion now about a second case. This is a 67-year-old man with diabetes that has a long-lasting history of rectal bleeding, for which he underwent a colonoscopy in 2016 that revealed hemorrhoids and scattered polyps that were not malignant on biopsy. However, as part of routine follow-up, a colonoscopy was repeated five years later, and this, unfortunately, showed diffuse nodularity of the colon with several areas of ulceration. Biopsy of the nodules showed a mature B-cell lymphoma, CD20 positive, CD5 positive, BCL2 positive, SOX11 positive, but negative for CD10.

FISH testing confirmed a translocation 11;14. There was no evidence of TP53 mutation, and Ki-67 was 40%. So Dr. Smith, what do you think about the overall potential histological diagnosis? And how do you approach this patient in terms of staging and prognosis discussion?

SONALI SMITH: Yes, so this poor patient, with long-standing rectal bleeding-- I mean, this can happen. It's not a very common presentation for mantle cell lymphoma, but we know that mantle cell lymphoma is very likely to involve the GI tract and can often be extranodal.

In terms of the histology itself, this is very classic. The co-expression of CD20 along with CD5 is only seen in CLL and mantle cell lymphoma. And in this case, the mantle cell lymphoma's confirmed by SOX11 positivity, CD10 negativity, and then, also, of course, the FISH [INAUDIBLE] translocation of 11;14 with a cyclin-D1 overexpression.

When it comes to prognosis in mantle cell lymphoma, there's a number of different prognostic indices, but the two biologic features that I think are most important are P53 status, as well as the proliferation rate. Patients who have a TP53 mutation typically have chemo-resistant disease. And we have no really good approach in terms of how to treat these patients the best.

PAOLO STRATI: Thank you, Dr. Smith, for outlining the diagnostic and prognostic approach to patients with mantle cell lymphoma. You alluded in your answer about the regenerative treatments, so I wanted to ask you, how do you, in general, treat patients with mantle cell lymphoma and, more specifically, this case. And also, we keep dividing patients with mantle cell lymphoma in transplant-eligible and ineligible, but the big question is, do all patients who are transplant-eligible need transplant? And what's year overall approach to this major dilemma?

SONALI SMITH: Yes. That's a really good question. The general approach to treatment for mantle cell lymphoma is based on the concept of fitness and age. So we end up dichotomozing patients into one of two groups. They are either young and fit, or they are older and unfit.

And, of course, this is somewhat controversial because age itself is just a number, and there is significant variability based on function and other medical conditions. Complicating that further is that many clinical trials have used 65 as the arbitrary cutoff between young and old, whereas some transplant studies have actually gone all the way up to age 70. So if I focus on the fact that this is a 67-year-old man who has no real significant history and clearly has a disease that needs treatment, my general approach has been to follow the younger-and-fit approach.

And as you mentioned, the historical approach to this has been to think of treatment in three phases. There is induction, there's consolidation with a high-dose chemotherapy and autologous stem-cell transplant, and then there is maintenance rituximab for three years, which has been shown to have a survival advantage. But your question-- I think there are many unanswered areas when it comes to approaching a patient who is going to be treated with an aggressive multimodality approach.

So first, in terms of the induction itself, there is data that cytarabine-based regimens likely achieve a deeper minimal residual disease state than aklylator-based therapy. And so cytarabine-containing regimens have really become the standard of care against which other regimens are compared. That being said, there was at least a SWOG study that randomized patients between BR and hyper-CVAD and found that BR was a sufficient type of induction.

And some of this controversy led to an ongoing Intergroup trial, which is EA4181, that takes patients with newly diagnosed mantle cell lymphoma, previously untreated, like our patient, and randomizes them to bendamustine, rituximab with or without cytarabine and with or without a BTK inhibitor, in this case, acalabrutinib. So outside of a clinical trial, I would use a h based induction regimen, but I have preferred to put most patients onto that.

But your second question, which is, do all patients need high-dose chemotherapy and autologous stem-cell transplant, is really important. This is associated with a need for inpatient admission, high-dose chemotherapy with subsequent late toxicity. And remembering that mantle cell lymphoma remains an incurable disease, the question is whether or not all patients should get this.

So to address this, there is the EA4151 trial, which is also being done through the United States Intergroup. And this is using a very unique minimal residual-disease assay to randomize patients to either transplant plus maintenance or maintenance alone. And so this is a next-generation sequencing test. And if patients have a negative MRD status at a very deep level, then patients will get randomized to one of those two arms, whereas if they have minimal residual disease that is detectable, then they will go ahead and get the standard of care.

So for this patient, he opted to be on the clinical trial and was randomized to BR, plus cytarabine, plus acalabrutinib. But outside of a trial, I really would have considered intensive induction, including the Nordic regimen that includes high-dose cytarabine, followed by transplant and maintenance rituximab.

Now some may argue with me that this person is 67 years old, and the Nordic regimen is quite intense. And I think this is where some of the art of medicine may come in. And, hopefully, we can have some type of assessment tools to better predict who can tolerate intensive induction. But I'm quite impressed by some of the transplant data that do lead to seven- and 10-year remissions in some cases. Of course, this new trial will tell us whether or not we're overtreating many of the patients, particularly based on their MRD status.

PAOLO STRATI: Thank you, Dr. Smith. It was very helpful. I think you outlined really well how challenging it can be to treat patients with mantle cell lymphoma and how important it is to tailor treatment based on biological but also, patient-related data.

This is all that we have for today. Thank you, Dr. Smith, for a very delightful conversation. It's been very helpful to review together today the treatment of patients with follicular lymphoma, and mantle-cell lymphoma, and safety and efficacy of novel therapies for these patients.

Thanks, everybody. And, particularly, thank you to all the listeners who tune in to this episode of the ASCO Education Podcast. And thank you, Dr. Smith, for your time.

SONALI SMITH: Thank you. It was such a pleasure to have this conversation today.

[MUSIC PLAYING]

SPEAKER: Thank you for listening to this week's episode. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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Part one of this two-part Oncology, Etc. episode features an inside look at the amazing career of Dr. Susan Desmond-Hellmann (spanning from early AIDS research in Kenya and drug development at Genentech, to serving as UCSF Chancellor and CEO of the Bill and Melinda Gates Foundation). Hosted by Drs. Patrick Loehrer (Indiana University) and David Johnson (University of Texas).

Subscribe: Apple Podcasts, Google Podcasts | Additional resources: education.asco.org | Contact Us

Air Date: 11/04/21

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

DAVE JOHNSON: I'm Dave Johnson. I'm a Professor of Medicine here at UT Southwestern Medical School in Dallas, Texas.

PAT LOEHRER: I'm Pat Loehrer. I'm Director of the Centers of Global Health at Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

DAVE JOHNSON: We have a remarkable guest today, Dr. Susan Desmond-Hellmann. She's like the Wonder Woman of oncology who's done many amazing things during the course of her career. It would take us more than an hour or more just to read off her CV.

But very briefly, Dr. Hellmann is a graduate of the University of Nevada, Reno where she got both her Bachelor and her medical degrees. She received her medical training at the University of California, San Francisco. And then after that, did something really interesting. She went to Uganda for a couple of years and worked at the Ugandan Cancer Institute where-- maybe we can delve into that a little bit later during the course of this discussion to find out what she did while she was there.

After which, she also did a couple of years of private practice and then joined industry, first at Bristol Myers, where she was instrumental in the development of a very important drug for a lot of different diseases-- paclitaxel And then in the mid-90s, she joined this little biotech company called Genentech, first, I think, as a clinical scientist. But over the course of a few years, she rose to the level of president of product development and really was instrumental in developing many drugs, including trastuzumab and bevacizumab.

In fact, I think it was Forbes magazine that named her as one of the world's seven most powerful innovators, which we have to ask her more about that later, about being a powerful innovator. After really a stellar career in the industry, she then went back into academics. She became the chancellor of the University of California, San Francisco, and I believe the first woman to hold that position, if I'm not mistaken.

During her tenure, many remarkable things happened at UCSF, including growth of their campus in the Mission Bay. She was responsible, with a committee put together by the National Academy of Sciences, of producing the report entitled Toward Precision Medicine, Building the Knowledge Network for Biomedical Research and a New Taxonomy of Disease.

In March of 2014, I believe it was, she took yet another position, this time in the world of philanthropy, where she became the chief executive officer of the Bill and Melinda Gates Foundation, a position she held until December of 2019. And that's certainly something we want to ask her about. Dr. Hellmann has many, many accolades. I can't list them all, but she's a member of the Biotech Hall of Fame, the American Academy of Arts and Sciences, the National Academy of Medicine, and she's even received an honorary science degree from Princeton University.

They won't even invite us to the campus, Pats. I'm not sure what it takes to get an honorary degree, but Sue, welcome to Oncology, Etc. And thank you so much for agreeing to this interview.

SUSAN DESMOND-HELLMANN: Well, thank you for having me. I'm really glad to be here and look forward to our conversation.

DAVE JOHNSON: Pat, why don't you ask the first question.

PAT LOEHRER: So Sue, if you could tell us a little bit about yourself from birth until your early career and what shaped your early directions.

SUSAN DESMOND-HELLMANN: Well, I'm actually a California native and grew up in Reno, Nevada, thus the University of Nevada connection. I'm one of seven children. I'm number two. And my affinity for science and medicine and all things regarding patients came from my dad, who was a retail pharmacist. And that's how we moved from California to Nevada.

My dad and his partner Jim opened up one of those Rexall Owl drugstores-- if you ever remember those with the owl picture-- and were partners for many years, ran a pharmacy in Reno, Nevada which, when we got there, was a really small town. And I often chuckle when people say, oh, there's something sort of funny about growing up in Reno, Nevada. Did you go to casinos all the time?

The fact of the matter is that my parents were very strict disciplinarians. We weren't allowed to work in the casinos as summer jobs, much less go to the casinos. I went to Catholic school for 12 years. Going to college was the first time I didn't wear a uniform to school, which was funny. But both my values and my passions came from worshiping my dad and the contributions he made to people feeling better.

PAT LOEHRER: Love it. Love it.

DAVE JOHNSON: It's fantastic. May I ask-- I presume you chose to go to UCSF for your medicine training because of your California connection. Is that right? Or was there other reasons?

SUSAN DESMOND-HELLMANN: There were two main reasons. One is UCSF was far and beyond my number one choice because of its reputation. And when I interviewed there, I just was so astounded that I recognized the names of my medical textbooks among the faculty. That was a big deal for me. Holly Smith was a chair of medicine. I mean, it was the dream to go to UCSF.

My dad was born and raised down the street from UCSF. And my grandma still lived there. And so, for me, it was also-- being the first time I had been away from home-- it was close enough to Reno that it wasn't crazy to drive back for the weekend. So a little bit more close to home and much more importantly, for me, the mecca where I would just get to be around so many talented people.

PAT LOEHRER: When you were there, it was really at the early times of the AIDS pandemic. And there is some wonderful people there that I'm sure you interacted with, included Paul Volberding and the other group. So tell me a little bit about that influence. And that probably led, in part, to the transition to Uganda. But tell us a little bit about that part of your story.

SUSAN DESMOND-HELLMANN: So my time at UCSF, first of all, I think it's, especially being in the midst of COVID-19, it made so many of us recall what it was like to be in San Francisco in 1982. It was really exhausting and terrifying to be a health care provider when so many of your patients-- first of all, they died quickly before antiretrovirals. But there was such a lack of understanding of what was going on initially.

And so the medical program at UCSF, like a lot of programs of its nature, in New York, LA, led to Paul Volberding, Don Abrams, Laurie Kaplan, a lot of colleagues-- the oncologists became AIDS doctors and oncologists, because of Kaposi sarcoma and lymphoma and other maladies. And I remember I did an additional year as chief resident. And one of our concerns was whether or not the medical residents were overweight HIV and underweight kidney disease and hypertension.

And there was a concern that people might not come for the residency because they were worried about catching AIDS. I mean, we were part of a study to test us. And happily, unless you had a needle stick, you really weren't at great risk. But the residency was very much influenced by that. I was very much influenced by that I had a lot of passion for caring for the patients. I think I had a lot of empathy for what they were going through.

And think about this, go home and tell your parents you have HIV. And by the way, they didn't know you were gay, because a lot more people were closeted in those days. That's a really tough set of circumstances. So by the time I was an oncology fellow and then a faculty member, I saw, really, all the patients at UCSF at the University Hospital who had AIDS-related cancers. That became my specialty.

And I was funded by the California State Task Force on AIDS to study Kaposi sarcoma. But when the Rockefeller Foundation came to UCSF to ask them to study heterosexual transmission of HIV, the late Merle Sande and Dick Root asked my husband, who's an infectious disease doc, and I to move to Uganda and accept this Rockefeller grant and study heterosexual transmission of HIV and Kaposi sarcoma.

And I actually think it's a bit of a funny story. But it was less funny then, because I was so uncertain. I had never been east of Chicago at that point in my life. But we flew and moved to Uganda. So I became a global citizen quite quickly. And it was both the most important experience that my husband and I had had in medicine and life.

And to say it was challenging would be an understatement. I mean, we did not have consistent electricity or running water. And we had this multi-page grant where we were supposed to do ELISAs and Western blots. It was a little crazy, but we got some things done and that was the important thing.

DAVE JOHNSON: So Pat's never been further between Indianapolis and Chicago. So he resonates with him.

[LAUGHTER]

DAVE JOHNSON: So you were there how many years? You were there two years, I think.

SUSAN DESMOND-HELLMANN: Two years.

DAVE JOHNSON: And did you accomplish the things that you set out to do while you were there? Or how did that go?

SUSAN DESMOND-HELLMANN: We worked with our Ugandan colleagues and really transformed what you could do at Uganda Cancer Institute at the TB clinic in collaboration with folks from Case Western Reserve and for the AIDS program. So by the time we left, things just were dramatically better and different. We also did a lot of teaching, a lot of patient care. And so there was a service element to what we did, which was really essential that that be part of it.

I had the opportunity, when I was at Gates Foundation in 2019, to return to Uganda. And the one thing you got at Cancer Institute, which was founded by NCI-- our National Cancer Institute, they are excellent at record keeping, all paper. And they dutifully pulled out some of the notes I wrote on my patients with Kaposi sarcoma with the references and citations. So this sort of nerdiness that we had at UCSF did transport to Kampala Uganda.

DAVE JOHNSON: I hope they gave you some copies of those, with the name struck out of course, for your private collection. That's cool.

SUSAN DESMOND-HELLMANN: It was actually pretty astounding to return. And now Fred Hutch has a collaboration with Uganda Cancer Institute and has done a lot of renovations and new science on the virology of Kaposi sarcoma.

PAT LOEHRER: So before we skip from this and move to something else, if you could reflect a little bit about what you currently think the importance of global oncology is. It obviously had an influence on you. And how do you think it should fit in or does fit in now? UCSF has got its fingerprints around the globe now. I'm on their EAB.

SUSAN DESMOND-HELLMANN: Well, let me just say from-- I'll speak to this sort of personally and then in a more big-picture way. Personally, I felt that the slogan of the Gates Foundation and every place can be too "slogan-y," so you always have to be careful about this. But the slogan that I just so had an affinity for is "all lives have equal value." All lives have equal value, for me, says that someone struggling or suffering, no matter where they are in the world, is worthy of our care and attention. And global oncology, I think, reflects that.

So one of the things that I learned when I was there-- and I felt really good about this. I was glad that I learned from colleagues in Uganda and they learned from me. And so there was a real collaboration on figuring out-- I'll give you a real example. As you know, Kaposi sarcoma causes a lot of edema and lymphedema in the lower extremities. Well, if you've got lymphedema in your lower extremities, you can't farm, you can't dig, you can't feed your family.

And we had bleomycin and vincristine. And with a combination of those two, in relatively small amounts to avoid toxicity, I could get someone back on their feet literally. And well, that's a great thing. And so the practical nature of symptom improvement, the avoidance of side effects, the attention to quality of life was amplified by my experience there. So I think those kinds of things-- I always like, in life, you give and you get.

I gave. I contributed. I worked hard. And I got a lot of new knowledge and understanding. In addition, the deep understanding of pathophysiology that came from thinking about African Kaposi sarcoma, Mediterranean Kaposi sarcoma, age-related Kaposi sarcoma. There's just a lot of science, just a lot to learn if you were paying attention and probing what was going on. So I think global oncology is extremely important. And it's important that it be sustainable and appropriate and with, always, service and training as a component, not only research.

PAT LOEHRER: Agreed. I agree.

DAVE JOHNSON: We have so much to cover, I don't want to spoil everything. But I'm really curious when you left Uganda, you went into private practice, right?

SUSAN DESMOND-HELLMANN: Mm-hmm.

DAVE JOHNSON: How did that happen?

SUSAN DESMOND-HELLMANN: We had to pay the rent.

DAVE JOHNSON: There you go.

SUSAN DESMOND-HELLMANN: Yeah. Yeah, when we came back, there was no global health. There was no place for us at UCSF. So we had one of those surreal academic experiences of sitting down with the new chief of medicine and him saying, there's no money for you. So you'll need to do a lot more clinical care and earn your salary.

And Nick, you're going to-- my husband-- you'll need to write at least two R01 grants. And so you better get moving. And we were disappointed that there really wasn't a place or mentorship or anything for us at UCSF. But we didn't have time to lick our wounds. So Nick is from Kentucky. And we moved back to Lexington, Kentucky and went into private practice.

DAVE JOHNSON: Yeah, economic necessity has changed.

SUSAN DESMOND-HELLMANN: I mean, I can make it a little more romantic and interesting, but it was economic necessity. And honestly, I love patients, I love oncology, and I thought that was fine. One of the learnings from that was how deeply I missed research and R&D. And I'm very academically oriented. And so both Nick and I realized, when we were there, that we did very well. People liked seeing us as clinicians. And we were well-trained and could take good care of people. But it wasn't the right fit.

DAVE JOHNSON: So from there, if I remember correctly, you transition to industry.

SUSAN DESMOND-HELLMANN: Yeah, actually it's a good story. So Nick got called up about from Bristol Myers Squibb, did he want to come and join their infectious disease group up in Connecticut at Wallingford. And he said, of course, I would love that. But I won't come unless you take my wife too.

And they said, no, we have a nepotism rule. We won't take your wife. And he said, well, you haven't met her yet. They said, why do we want a private practice oncologist at Bristol Myers Squibb. We need serious clinical trials people. And so Nick was somewhat persistent. And he just said, I won't come. He's a good husband. That's it.

PAT LOEHRER: Sounds like it.

SUSAN DESMOND-HELLMANN: He still is. And so they hired me as a consultant. And they were really busy on Taxol. It had gotten approved for ovarian cancer but not yet for breast cancer. And so I like to say they stuck me doing drug safety. And saying, she's like an LMD, she's a clinician. We'll have her do drug safety. She can't cause too much harm over there.

And I tell you, the opposite of going into private practice, which was just, like I said, not a great fit. I felt like I had died and gone to heaven. First of all, it is probably embarrassing and says something about me, I loved drug safety-- loved, loved, loved drugs-- it's like thinking like an epidemiologist, a clinician, a good physician.

You know, I love statistics and epi. I had gotten an MPH at Berkeley while I was an oncology fellow. And I just love analytics and inference and all of that stuff.

And so after a couple of months they had changed me-- they got a dispensation from the CEO so I could be a real employee. And I became the project team leader for Taxol, which was fantastic. It was such a great experience. I loved the colleagues at BMS. And we were making one of the first new oncology drugs in a while.

DAVE JOHNSON: Yeah, I think, if memory serves me correctly, that's about the time we first met.

SUSAN DESMOND-HELLMANN: Yes.

DAVE JOHNSON: And paclitaxel was being investigated in lung cancer. And that really is our connection. But those were heady times. We thought we were on top of the world.

SUSAN DESMOND-HELLMANN: Well, you know, it had been a while since there had been new active chemotherapies in oncology. And they were heady times. It was also just so interesting and hard to remember now how much the toxicity of paclitaxel had put it on the shelf, this hypersensitivity reactions and the collaboration with the National Cancer Institute.

There was a lot about the product development of paclitaxel that I remember and learn from. And I was just really grateful to be with Renzo Canetta and people like that, who it felt like going to UCSF where I thought, OK, Floyd Rector in nephrology. Now I get all these folks who I was using bleomycin and platinums. And they had written those package inserts.

DAVE JOHNSON: Yeah.

PAT LOEHRER: Yeah Bristol Myers basically owned oncology. I mean, all the products were going on there. And at that time, as you guys know, there's only one or two drugs a year that got approved for oncology. And today it is vastly different where each week there's a new drug or a new indication for oncology. The world has just changed tremendously.

SUSAN DESMOND-HELLMANN: Yes.

PAT LOEHRER: Yeah, it's been incredible. So Dave, where do you want to go next on this one?

DAVE JOHNSON: Well, I think one of the things that I think our listeners might want to learn about is Sue's transition to Genentech. I mean, it wasn't like the powerhouse organization it is today when you went there. I mean, not that it was a hole in the wall, but it wasn't the biomedical powerhouse that it is. What attracted you? I'd love to hear from you, what brought you to Genentech?

SUSAN DESMOND-HELLMANN: So I would say three things. The first thing was Art and his ambition. And so Art--

DAVE JOHNSON: You might want to tell people who Art is.

SUSAN DESMOND-HELLMANN: So Art Levinson, who then was the head of R&D and later became the CEO of Genentech, so Art Levinson worked in Mike Bishop's lab at UCSF. And so he, in many ways, showed up as a molecular oncologist as the head of R&D at Genentech. And his ambition was that Genentech would be an oncology company.

When I talked to Genentech, they had precisely zero oncology drugs. The furthest along was gamma interferon in their pipeline. So it didn't actually look very promising at the time. But Art was very compelling to talk to, and his dream.

The second thing was research. Bristol Myers Squibb was fantastic. But especially being in Connecticut, where you were sort of removed from the research enterprise, I saw BMS as fantastic clinical development organization and sales organization. They did a lot of licensing deals. That was their claim to fame was they were really good at licensing. And I respected that a lot.

But the ability to sit down with the research folks and think about what you would do with an anti-HER2 or an anti-VEGF-- and I just really respected Genetech's research capabilities and organization. And the third thing was we made the decision-- which wasn't an easy decision to make.

We had built a house in Connecticut. We were happy there. I don't know if you remember the winter of '94 was huge blizzards in Connecticut. Before we moved to Connecticut, I didn't even own a winter coat. So it was rough to experience winter in the Northeast. And my family was in Reno and San Francisco. And so moving back here was compelling.

PAT LOEHRER: Not the romance that you had in Christmas in Connecticut with Bing Crosby. It just wasn't the same, was it?

SUSAN DESMOND-HELLMANN: Well, I did love fall. I'll tell you, nothing like autumn in Connecticut. There's a lot to like about Connecticut. So it wasn't an easy move. But coming back West was a good thing.

DAVE JOHNSON: Well, what was the first really successful product that you worked on with Genentech? I should know, but I don't remember.

SUSAN DESMOND-HELLMANN: Oh, the first successful product that I worked on with Genentech was a collaboration with IDEC on Rituxan. And rituximab was really interesting because there's some real heroes at Genentech, including a business development guy, David Ebersman, who heard that maybe an antibody could work, even a chimeric antibody could work for lymphoma.

And so with Antonio Grillo-Lopez and the rest of the folks at IDEC, we got the first antibody approved in 1997. And that made a massive difference. I don't think people recognize how important rituximab was for trastuzumab, which was really only a year later-- less than a year later-- approved for HER2 positive breast cancer. But for me, that opened the era of antibodies and made people believe you could repetitively give a patient with cancer an antibody and they would tolerate it.

DAVE JOHNSON: How confident are you that would work?

SUSAN DESMOND-HELLMANN: I was very confident that rituximab would work. There was a lot of information. I wasn't sure we could make it. That required a lot of biotech manufacturing expertise that Genentech had, which was great. But I felt good about that. But there was a myth, at the time, that you could treat a liquid tumor, you could do heme, lymphoma or leukemia with an antibody. But there was this big worry you couldn't get into the tumor with a solid tumor. So I was not at all confident about Herceptin. Trastuzumab was not a give-me. But rituximab I was confident about.

PAT LOEHRER: This concludes part one 2-part interview with Dr. Susan Desmond-Hellmann. It was a wonderful discussion. In part 2, we'll talk a little bit more about Dr. Desmond-Hellmann's incredible leadership roles, including her time as chancellor at UCSF and the CEO of the Bill and Melinda Gates Foundation.

Thank you to all our listeners for tuning into Oncology, Etc. an ASCO Education Podcast where we'll talk about anything and everything. If you have an idea for a topic or a guest you'd like to see on the show, please email us at education@asco.org. Thanks again. And just remember anything, because Dave doesn't.

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In this Social Determinants of Health (SDOH) episode, Dr. Deepak Vadehra (Roswell Park) moderates a discussion with Dr. Carmen Guerra (Abramson) and Dr. Daniel Carrizosa (Levine) on how access to care impacts SDOH and the available interventions and resources that can mitigate these issues for patients. View COI & Cancer.Net Podcast.

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Air Date: 10/28/2021

TRANSCRIPT

[MUSIC PLAYING]

LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care.

The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement.

For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere.

I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality, equitable cancer care. Thank you.

DEEPAK VADEHRA: Welcome to the 10th episode of the ASCO Social Determinants of Health Series. I am Dr. Deepak Vadhera, and I'm a GI medical oncologist at the Roswell Park Comprehensive Cancer Center. I am joined today by Dr. Carmen Guerra, who is Associate Director of Diversity and Outreach at the Abramson Cancer Center at the University of Pennsylvania, and by Dr. Daniel Carrizosa, Medical Director of the Disparities and Diversity Program at Levine Cancer Institute in Charlotte, North Carolina.

In this episode, we will be discussing access to care and how it impacts the social determinants of health and the available interventions and resources that clinicians can utilize to mitigate these access issues for their patients. So thank you very much to both Dr. Guerra and Dr. Carrizosa for being here.

When I, sort of, think about access to care, I intimately equate it with equity. I think that, at its core, access to care is an equity issue and that not every solution is appropriate for every patient. But I think that the important thing is that, as we move forward in our discussion and sort of as we think about things globally, that we all recognize the importance of allowing appropriate access to care and making sure it is equitable for all our patients.

So with that in mind, Dr. Guerra, one of the things that I think about in access to care are barriers, and one of the biggest areas, I think, is that we need to improve, with terms of access to care, is the access to clinical trials and the coverage of clinical trials. So I know that's something you're passionate about and so would love to hear some of your thoughts on that and other barriers you see, in terms of access to care.

CARMEN GUERRA: Thank you, Deepak. First of all, it's a pleasure to be here. Thank you for the invitation. And yes, I'm very passionate about the equitable access to cancer treatment trials, and it's a space that I've been working on.

We know there are inequities in accessing trials, because we know that the proportion of Black individuals that participate in trials is very small. In the 28 new oncology drugs approved by the FDA between 2018 and '19, If you look at all the participants, only 4% were Black.

And we saw this, as well, in our own Abramson Cancer Center. In 2014, we just presented data at the ASCO National meeting, where we saw that even though in our catchment area, the proportion of Black patients with cancer was about 16.5% in our catchment area, the patients who were coming to the Abramson Cancer Center who were Black was only 11.1%. So I call that a community-to-clinic gap.

And then we looked at who was participating on trials, and that was about 12.2% of the population was Black. And so we began, in that year, 2014, on a whole series of strategies to understand, better understand and address the barriers. And one of the barriers that we focused on was transportation. Nationally, we know that Black individuals are less likely to have a car, own a vehicle. About 20% of Black households do not have access to a vehicle. So one of the things we developed was a transportation program.

We also worked on building partnerships with faith-based groups that serve the Black communities, as well as nonfaith-based groups, to increase our ability to go out to the community and educate the community about cancer, cancer prevention, and clinical trials.

And then in addition, we also did some internal things. We worked with our PIs to show them-- our investigators-- to show them where the burden of cancer in the Black communities was. What were the cancers, and what were the trials we needed to design for them? And then we also asked them to include a minority participation paragraph in all protocols they submitted.

And so in 2018, we were able to reassess the data. And what we found was a two-fold increase in the individuals who are coming to the Abramson Cancer Center because now, they had access through transportation and information. And then we also saw a two-fold increase in the individuals who participate in on clinical trials.

And for us, that really showed us that we could do this, that we could provide the equitable access to cancer clinical trials. And so that just has continued to embolden us to continue to work on this, because I think you do have to sustain your efforts. Otherwise, we might see the same statistics that we saw back in 2014.

DEEPAK VADEHRA: No, I couldn't agree with you more. And those are great interventions and great ideas that the Abramson Cancer Center was able to roll out.

Dr. Carrizosa, what do you see as some of the barriers to our patients being able to access the care that they deserve as cancer patients?

DANIEL CARRIZOSA: Yes, I think it's very interesting, because I think there's a lot of questions you can ask, in general, that help you think about these barriers to care. And Dr. Guerra was just talking about, almost, the what. You know, what do we do for patients so that we can get things done and help them?

So other things are, simply, the question of who is it that you're looking at? What different type of person it is-- is this a elderly person that we need to think of different options, like different trials, different therapies? Do we also have to look at how they can access information? Is telemedicine something that's very easy for them? Or are they not able to use a smartphone?

You also have to think about people with differences, such as transgender patients, who sometimes have significant, unique interactions with the medical community and unique needs, and we need to think about them.

Also, at our annual Think Academy, which is a large conference we do that looks at inequities, we had Susan Magasi, from the University of Illinois Chicago, come and speak. And she really opened my eyes, because she talked about disabled people. And I had never thought about how a disabled person gets a mammogram. So that's a who and a how.

On top of that, we also think about where. So we've talked a little bit about the transportation issue, and we have transportation issues in cities, rural, how they get telemedicine or broadband, where they might actually have a medical center close to them. They could be in parts of the country where people have to drive hours to be able to get good cancer care.

And then the why. What is it that we're trying to do for them? And importantly, how can we educate people about cancer and about what these barriers are and how we can try it overcome them.

DEEPAK VADEHRA: I think those are all very important points that you make, and things that we are all very important to think about as we move forward in both designing trials and working on improving our access for our patients.

I think one of the things that providers and practitioners, who may not be in urban centers or are community providers and not, quote, unquote, academic providers, like we are-- what resources, what practical things can they do to help, sort of, break down the barriers and break down the walls that prevent patients from getting the proper access to appropriate clinical trials and supportive care, such as that?

So Dr. Guerra, have you-- what are some practical tools out there that providers can use to help lessen the burden of access to care issues?

CARMEN GUERRA: It's an important question, and thank you, so much. One of my volunteer hats is that I am the Board Scientific Officer for the American Cancer Society. And they have programs precisely to help individuals with access issues, such as transportation, such as lodging.

One of their programs is the American Cancer Society Road to Recovery Program. And this is a program that provides transportation to patients with cancer to their appointments. It was a program initially launched back in the 1960s, but it was adopted nationwide by the American Cancer Society in 1983. And it's available to anyone with a diagnosis of cancer.

They have provided, in the past, before the pandemic, in a year, about 35,000 patients were served with almost half a million rides, and it's available, again, for free, if you go on their website, cancer.org. And there's a phone number, which I'll be happy to share with your listeners. It's 800-227-2345. And that's a general American Cancer Society number for any services that they provide.

The second resource from the American Cancer Society is the Hope Lodges. The Hope Lodges are a system of 30, maybe 31 now, lodges all across the United States and Puerto Rico that provides, again, free-of-charge accommodations to any patient with cancer.

Now, the eligibility requirements vary by location, especially during this time of COVID. But again, that same number or cancer.org a way to identify those resources for patients who need access to care or access to clinical trials.

DEEPAK VADEHRA: Great. That's very important. And I hope that everyone who's listening can recognize and be able to use those tools at their disposal.

Dr. Carrizosa, what do you think are some other ideas and resources? What has worked in your experience? And is there something, maybe out of the box we need to do? And sort of, let me-- tell our listeners, sort of, about your experience.

DANIEL CARRIZOSA: Sure, I think, bouncing off what we just talked about, organizations in the community, like ASCO, are incredibly important to use and to form trust with the community, as has been described in some of these podcasts before.

But more importantly, sometimes with these access issues, we actually need to think of new and different ways of trying to engage and bring people into cancer care or screening. And one of the things we do here at Levine Cancer Institute, is we created the first mobile lung cancer screening unit in the country.

And we saw a large number of patients with transportation issues in the rural communities that were a little bit wary of coming to, either, a brick and mortar screening area or a cancer center, and we wanted to overcome that. So we actually made this mobile unit. We actually come into the community. We do community assessments to build that trust.

And we do multiple screenings, other than just lung cancer screening. We also do head and neck screening. We're starting prostate screening through blood work. Controversial, but it was something we're looking at. And on top of that, we're also basing research studies in the community on our, what we call, Lung Bus Initiative.

And so thinking outside of the box and trying to find other ways in your community that you can look. Can you do mobile units inside an urban community? Can you then provide other options? Do we do navigation? We're very big at navigation here Levine Cancer Institute. We have a Spanish-speaking navigator just for those patients. It actually overcomes communication issues. Trying to call in to the actual Cancer Center and again, comes back to building trust.

So I think it's important to, A, take your community boards and your focus groups, all of these areas-- talk with them. Find out what is important in your community, and what are those barriers? What are those obstacles? And then sit down and think about what can we do? And sometimes, aim for the stars.

DEEPAK VADEHRA: No, I think that, that is definitely a great example of out-of-the-box thinking and being able to take something that's vitally important to the community. And it definitely can have a great impact on our patients being able to access the things they need, and that's not just once cancer is diagnosed. That's before the diagnosis is made and for screening. So that's a really, really wonderful example that you gave there.

So we've talked a little bit about the barriers, what we see as issues, and some practical resources that providers can use to help. But at the crux of the issue, really, is policy, and what we need to do at that policy level to try and really impact and improve the availability of care for our patients.

So I'll start with Dr. Carrizosa. Dr. Carrizosa, what are some of the policy issues that you see as being central to improving access to care for our cancer patients?

DANIEL CARRIZOSA: Well I think, ultimately, when people start thinking about policy, they start getting very worried. And how am I going to change things? I'm just one person. And so, one person can move a mountain with the right, you know, ability or leverage. And so I think you start at your local community, and we can look at things like transportation. What type of transportation is available, or where can people go and get things they need?

I think in the last podcast, they discussed food islands and food deserts. And so therefore, can you use something where you're actually overcoming that, and then increase awareness for cancer screening or trials?

On top of that, then you have to go to state levels, and then you start talking about, well, can you increase broadband? Can you do other things that can actually help? Can you just make there more education happening?

And then, obviously, the national level, people get very worried, and they try to figure out, well, how am I going to change national policy? And one great way is actually through ASCO advocacy. And so they actually are working through different telehealth modernization acts and going every year to speak with our representatives to try and change and make things better for our patients.

So I don't think, you know, you need to feel like you need to become president to change these things. You can do it in your community, you could do it at your state, or you can use an organization, like ASCO, that's actually changing policy or helping to change policy.

DEEPAK VADEHRA: Now, those are all great points. Dr. Guerra, your thoughts about what you feel like the important policy issues that we have to tackle in order to help improve access to care.

CARMEN GUERRA: Yeah, I mean the big one is, of course, the insurance, access to insurance. And we've-- I agree, ASCO and the American Cancer Society, have lobbied for expansion of insurance, first through the Affordable Care Act but now through Medicaid expansions through the state. And I think that, that is absolutely vital for, not just cancer care, but all types of health care for our patients.

I would say, there's a second policy that was just recently approved and that is an opportunity for the clinical trial space. And that's a policy that will now mandate Medicaid, starting in January of 2022, to cover the routine costs associated with clinical trial participation. And in so doing, Medicaid will join private insurers and Medicare, which already do cover those clinical trial-related costs. And so I think with that, we'll have an opportunity, as well, to expand access to the potential treatments of the future to patients who want to participate in trials.

And then the last one I'll mention is that we have been working with a foundation, called the Lazarus Foundation. And what they do is they reimburse patients for the travel-related costs, as I mentioned earlier, and that includes lodging and travel.

But in order for us to be able to do that, we first had to lobby our state Senate to actually create a law that says that reimbursing individuals for those clinical trial participation costs is not undue influence. It's not coercion. And that bill passed unanimously, and similar bills have passed in states like California and Texas and Illinois and Wisconsin, and I think, most recently, Massachusetts, in January of this year.

But doing this state-by-state is not very efficient. And so what we also need is a federal policy with that type of language that allows, potentially, pharma and other sponsors to reimburse our patients for those travel-related costs associated with clinical trial participation.

DEEPAK VADEHRA: No, I think that's absolutely paramount to being able to provide the best care to patients. You know, I think, sometimes, that we forget that clinical trial doesn't mean everything is picked up, cost-wise, in a clinical trial. And there is definitely a standard of care part that somebody has to pay for, right? And I think that is one of the most important things. And I think it's great that we are able to bring awareness and have a sense of what we can do to help advocate for policy changes. And I think that was a great discussion.

I know we could talk about this forever. All three of us are very passionate about this. We're open to doing more sessions about it, but overall, thank you, Dr. Guerra and Dr. Carrizosa for joining us.

I wanted to just mention that as a compliment to this episode, listeners may also be interested in a podcast from cancer.net with Dr. Karen Winklefield. She provides a brief introduction about social determinants of health and the resources available for patients and their families and other tips about finding resources that are available to help navigate the challenges of traversing the cancer care system. So a link to that podcast will be found in the description of this episode.

And so once again, thank you, very much for joining us for this 10th episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click "subscribe" and let us know what you think about the series by either leaving a review or by emailing us at professionaldevelopment@asco.org. Thanks, everyone, for their time today.

CARMEN GUERRA: Thank you.

DANIEL CARRIZOSA: Thank you.

LORI PIERCE: Thank you for listening to this week's episode of the ASCO eLearning weekly podcasts. To make us part of your weekly routine, click "subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearning.asco.org.

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In part one of this two-part ASCO Education Podcast episode, Dr. Sonali Smith (University of Chicago Medicine) and Dr. Paolo Strati (MD Anderson Cancer Center) discuss the application of recently approved therapies for diffuse large B-cell lymphoma through examination of challenging patient cases.

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Air Date: 10/20/21

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

SONALI SMITH: Hello, and welcome to this episode of the ASCO Education Podcast highlighting new therapies for lymphoma. My name is Dr. Sonali Smith, and I'm a hematologist and medical oncologist specializing in lymphoma and clinical investigation in lymphoma. I'm also the Elwood V. Jensen Professor and chief of the hematology/oncology section at the University of Chicago, and very excited to be joined by my colleague, Dr. Paolo Strati.

PAOLO STRATI: Good morning to everybody. My name is Paolo Strati. I'm a hematologist and medical oncologist and an assistant professor in the Department of Lymphoma/Myeloma, and in the Department of Translational Molecular Pathology at MD Anderson Cancer Center, Houston, Texas. And I'm also the clinical director for the Lymphma Tissue Bank.

In part one of this podcast episode, we will discuss the adoption of recently approved therapies for diffuse large B-cell lymphoma, such as selinexor, tafasitamab, Liso-Cel, and Lonca-T. These therapies have transformed care for patients with this disease. And we'll start our conversation today with a patient case.

SONALI SMITH: Great. Well, I'll go ahead and present a patient to you, Paulo. So this is a 78-year-old man with diffuse large B-cell lymphoma that is the germinal center-derived subtype. It is not double expressor, it is not double-hit. He has advanced stage disease with a high IPI, as well as the high CNS IPI. Luckily, his performance status is zero and he has no significant comorbidities or other health conditions.

He received frontline dose-adjusted EPOC-R with intrathecal methotrexate for six cycles. But at the end, he had a partial remission. So how do you select your salvage therapy in this situation? Are you concerned about using agents targeting CD19 in the second line, given the potential need to use anti-CD19 cellular therapy, or CAR-T in the third line?

PAOLO STRATI: This is a very interesting and unfortunately not uncommon case. And thank you, Sonali, for asking these very important questions. Technically, a platinum-based regimen followed by autologous transplant will be a standard answer and may be feasible. Because as you mentioned, this patient has a good performance status and non-meaningful comorbid health conditions.

However, patients who are refractory to a frontline anthracycline-based regimen, such as in this case, with achievement only of partial remission at the end of frontline dose-adjusted EPOC, can potentially experience a suboptimal outcome following the standard approach with a platinum-based second line regimen. And as such, alternative strategies may be needed.

To this regard, the combination of tafasitamab that, as you know, is a monoclonal antibody targeting CD19, and lenalidomide, an oral immunomodulatory agent, a combination which is currently approved by the FDA in the United States as a standard second line option for transplant ineligible patients, would be a great option in this case.

Data from the three year follow-up of the phase II study that has brought to the FDA approval this combination, the L-MIND had been recently presented and have showed the complete remission rate of 40% and immediate duration of response of 44 months, including patients who received this regimen as a third line or beyond.

So there is, of course, a biological concern by targeting CD19 in second line. These may potentially impact a third line use of an autologous anti-CD19 CAR-T, because CD19 downregulation may potentially be a mechanism of escape to tafasitamab. And recent data has shown the CD19 levels are strongly associated with the efficacy of CAR-T cell therapy in patients with large B-cell lymphoma.

Small retrospective studies have shown that autologous anti-CD19 CAR-T can be safely and effectively used after antibodies or antibody drug conjugate targeting CD19. But we need a significantly larger and prospective data, including serial tissue biopsy in these patients before considering this combination as a standard practice in patients for whom we plan to use CAR-T as a third line.

Until then, I would be cautious in using second line tafasitamab in patients, again, for whom there is a potential plan for anti-CD19 autologous CAR-T in third line. And if necessary, limited to very selective cases. Finally, recent press releases have anticipated the two autologous anti-CD19 CAR-T products, Axi-Cel and Liso-Cel, are superior to autologous settings transplanted in second line.

And so in the near future, CAR-T cell therapy may become a standard second line option. And that would be an ideal option in primary chemorefractory patients as the case that you presented here.

SONALI SMITH: Yeah, I agree. There are a tremendous number of options. And having anti-CD19 products as well as autologous stem cell transplant, the sequencing will be an evolution. So going back to this patient, he received tafasitamab and lenalidomide for two cycles with no significant toxicity, but unfortunately, he had further progression after two cycles based on a PET/CT scan.

So what are your next steps? Would you move directly to an autologous anti-CD19 CAR-T cell therapy now? Would you re-biopsy before that? And how would you select among the three available CAR-T products?

PAOLO STRATI: These are not easy questions, particularly the selection of one out of three available CAR-T products. As you said, there are currently three autologous anti-CD19 CAR-T products approved by the FDA in the United States for the treatment of large B-cell lymphoma in third line or beyond. And these are Axi-Cel, Tisa-Cel, and Liso-Cel.

For all of them, the best outcome is observed for patients who have a low turmor burden at time of CAR-T infusion. And they need to either select patients with no bulky disease or to decrease it through bridging therapy. And as we define bridging therapy given between leukapharesis and CAR-T infusion.

Unfortunately, there is currently no standard bridging therapy and all FDA products approved in third line can potentially be used in this specific scenario that you described, including polatuzumab with bendamustine/rituximab, selinexor, and Lonca-T, of course, beyond tafasitamab and len that has already been used in this case.

Of course, when selecting a bridging therapy, there are many disease-related and patient-related factors to take into consideration, including the need to preserve the host immune microenvironment that we all know is crucial for the subsequent activity of CAR-T cells. And also, we need to give into consideration the need to preserve as much as possible, as we discussed previously, in CD19 expression.

To this regard, and going back to one of your questions, I strongly recommend to re-biopsy patients if any bridging therapy is used between bridging therapy and CAR-T infusion in order to document CD19 expression before CAR-T infusion. When it comes to CAR-T product selection, as I said, it's a really difficult decision to do. And we don't have at this time randomized trials in third line. And as such, the decision is really left to the treating physician based on multiple factors. But all of the limitations of inter-study comparison, efficacy seems to be pretty much the same for the two products, maybe slightly higher based on the recent second line data.

But Axi-Cel and Liso-Cel as compared to Tisa-Cel, and also as suggested by recent press release. However, due to the fact that Liso-Cel and Tisa-Cel have less potent co-stimulatory domain for 1BB instead of CD28, the rate of CRS and ICANS, the two main toxicities associated with CAR-T cell therapy, is usually lower with this to the point that some centers are able to infuse them in the outpatient setting, whereas Axi-Cel is almost always infused in the inpatient setting so the toxicity can be monitored more closely.

So with older patients or those who have comorbid health condition, Tisa-Cel and Liso-Cel may be a safer option, though there's a lot of research going on trying to mitigate toxicities associated with Axi-Cel. Finally, it's important to keep in mind manufacturing time. Axi-Cel is manufactured in an average of 17 days, whereas Tisa-Cel and Liso-Cel take typically longer than three to four weeks. This can be itself a determining factor, particularly for patients who are quickly progressing and where immediate treatment is needed.

SONALI SMITH: Yeah, I agree. I think there are going to be many patient product and disease-based factors that will impact both the effectiveness as well as the toxicity. And you did a really great job of explaining the role of the co-stimulatory domain potentially in some of that, as well as all of the products that are out there. It's definitely a complicated area.

Going back to our patient, so he did undergo leukapharesis for Liso-Cel and received third line polatuzumab and rituximab without bendamustine. The restaging PET/CT after two cycles showed a PR with a significant decrease in tumor burden, and repeated biopsy showed high expression of CD19 by flow cytometry.

He then proceeded with Liso-Cel, which was relatively well tolerated. There was only grade 1 cytokine release syndrome and no ICANS, so no neurotoxicity. And his day 30 PET/CT showed a complete remission. Unfortunately, the 90 day PET/CT showed progression. So Dr. Strati what is the outcome for patients who relapse after CAR-T? Do you recommend to re-biopsy? And what are the efficacy data for FDA approved agents for these patients? And I know this is a long question, but is there any role for repeated CAR-T or allogeneic transplant now?

PAOLO STRATI: Unfortunately, currently, the outcome of patients with large B-cell lymphoma relapse or progress after autologous anti-CD19 CAR-T is suboptimal, with a life expectancy, unfortunately, shorter than six months. Hence, the need to be creative and customize treatment based on biological data.

To this regard, I think it's crucial to repeat a tissue biopsy to guide subsequent therapy. As mentioned previously, there are currently four products approved by the FDA for patients with large B-cell lymphoma in third line and beyond. Two of these target CD19, tafasitamab plus lenalidomide and Lonca-T One targets CD79B, polatuzumab combined with bendamustine and rituximab. And one is an SPO1 inhibitor, selinexor.

While we have no data for selinexor in patients who relapse or progress after CAR-T cell therapy, limited prospective data showed that a progression-free survival in the order of weeks is usually observed for patients who receive polatuzumab with or without bendamustine and rituximab after CAR-T cell therapy. So I would not recommend that.

However, there's some interesting activity in the post-CAR-T setting for Lonca-T and for tafasitamab/len is limited to patients who still express CD19 in time of relapse. And of course, it needs to be largely and prospectively further investigated before becoming a standard approach for patients who relapse or progress after CAR-T cell therapy.

When it comes to cellular therapy, repeated anti-CD19 CAR-T infusion is not shown to be successful in the original registration studies. So it is not currently something that I would recommend and is not definitely a common practice. And very limited retrospective studies have shown the use of allogeneic stem cell transplants in the post-CAR-T setting may be associated with quite elevated treatment-related mortality. So I don't suggest this as a standard practice in large B-cell lymphoma at this time. This is different from B acute lymphoblastic leukemia, where instead, allogeneic stem cell transplant is becoming progressively a standard approach. And we definitely need more data before using this consistently.

While we strive to identify the optimal cell batch therapy for large B-cell lymphoma patients who relapse or progress after CAR-T cell therapy. I think the priority should be given to clinical trials, including CAR-T targeting molecules other than CD19, such as CD20, CD22, CD79B, allogeneic CAR-T there are immediately available, so without the need to wait for manufacturing times. And K-CAR, that may be less toxic than CAR-T and other non-cellular therapy biological agents. So definitely, clinical trials are, at this time, the best approach in patients who relapse after CAR-T cell therapy, as the case that you described.

SONALI SMITH: Thank you Dr. Strati. As an update, this patient had repeated biopsy showing a CD19 positive relapse. He consented for a clinical trial with a novel NK-CAR targeting CD19, achieving CR which is still ongoing at nine months. And this case really does represent some of the most exciting advances that we've had for this disease for patients who can tolerate aggressive therapies and have access to clinical trials.

PAOLO STRATI: Dr. Smith, I'd like to hear your opinion about another patient with diffuse large B-cell lymphoma. This patient is an 81-year-old man with a history of coronary artery disease and well-controlled diabetes mellitus, who noticed a right cervical lymph node while shaving that seemed to have popped up. He was evaluated by his primary care physician and given a course of antimicrobials. 10 days later, the lymphoma seems to be enlarging and he is referred to ENT pharyngeal biopsy.

The specimen is small but shows follicular lymphoma in a portion of the sample. However, there is also concern for larger cells and possible transformation. The patient is also beginning to note night sweats and a decreased appetite. And labs are notable for elevated LDH, 500, and thrombocytopenia with a platelet count of 110.

So Dr. Smith, in your opinion, is this specimen sufficient to start treatment? Or should treatment be delayed to get a larger and maybe excisional biopsy?

SONALI SMITH: Yeah, thank you for this question. I think this is a challenge we have in the clinic all the time, which is what is a sufficient biopsy specimen to make a diagnosis that allows us to subtype lymphoma? As we know, every lymphoma subtype, the treatment is really guided by the histology and not so much the stage or some other factors.

So having a needle biopsy is unfortunately often insufficient. In this case, we have a very strong concern for a possible transformation. And as we know, both follicular lymphoma and diffuse large B-cell lymphoma can mark very similarly when it comes to immunophenotype. Certainly, the germinal center type of diffuse large B-cell lymphoma or any transformed follicular lymphoma will be CD20 positive, CD10 positive, and it really requires architecture to be able to tell whether or not there are sheets of large cells.

So the ideal outcome for this patient would be to have a biopsy that is done promptly that allows us not only to confirm whether or not there is histologic evidence of transformation, but also to conduct FISH studies to determine if there's acquisition of a MYC rearrangement. At its core, all follicular lymphoma patients essentially have a transformation of 14;18, leading to BCL2 rearrangement and BCL2 overexpression.

During the transformation process, there can be an acquisition of a MYC rearrangement, which would then make this a double-hit lymphoma and certainly has a much worse prognosis and may also prompt a change in treatment if the patient can tolerate more intensive therapy. So my recommendation would be to have a biopsy.

Now one other aspect is that sometimes, we don't really have the time to proceed with a biopsy, or the lymph node may be in an inaccessible area. And in that case, there are some other criteria that we can use to assume that somebody has a transformation. Symptoms such as profound B symptoms and elevated LDH, and sometimes, a PET scan with multiple areas of very high avidity, can lead you to feel or suggest that this person has a transformation.

There is some controversy over the use of PET and we know it does not confirm a diagnosis of transformation. But in my opinion, this is very suggestive if there are many areas of high SUV.

PAOLO STRATI: Thank you, Dr. Smith. I agree completely about the importance, when time allows, to perform either a larger core biopsy or an excisional biopsy, because as you very well-outlined, this has not just a mere diagnostic purpose, but can meaningfully affect treatment planning for patients.

And actually, in this case, as you suggested, the patient eventually had multiple core biopsy that showed transformed follicular lymphoma with very evident areas of diffuse large B-cell lymphoma. FISH, as expected for follicular lymphoma, was positive for translocation for TN18, but luckily negative for MYC rearrangement. So fortunately, we didn't have to deal with a double-hit lymphoma.

The remainder of his staging showed he had diffuse lymphadenopathy. And PET scan, as you mentioned, has a controversial role in the diagnosis of transformation. So there's some areas that had high avidity with an uptake with an SUV of 1215, whereas other areas were less intense with SUV 618. And usually, heterogeneity in SUV actually helps further supporting diagnosis or transformation. While meta-maps showed follicular lymphoma, no large cells. So movement was isolated in the B-cell lymphoma.

So Dr. Smith, at this point, based on the provided information, what's your treatment approach in this older patient and also a patient with comorbid health conditions, but with diffuse large B-cell lymphoma?

SONALI SMITH: Yes. The goal of treating any aggressive lymphoma is to obtain remission, and if the remission lasts, to hopefully offer cure to the patient. And when somebody has a transformed lymphoma, of course, there is a dual concern, which is that the aggressive component can potentially be put into remission in a durable way achieving cure. But the indolent component will always need to be monitored, although hopefully, will not be life threatening the way the aggressive component can be.

Treating an octogenarian is really challenging, particularly due to comorbidities in this age group and the potential toxicity of chemotherapy. So the standard of care for diffuse large B-cell lymphoma is anthracycline-based chemotherapy. But this, of course, can have significant toxicity in older patients. And in addition, the vincristine can aggravate neuropathy. And I've personally found that the high dose steroids that are part of CHOP can also cause toxicity in older patients and patients who are frail.

So unfortunately, the literature is somewhat sparse. But we do have several data sets that can guide management in this particular patient situation. The French published, over a decade ago, the development of R mini CHOP, that includes an attenuated dose of cyclophosphamide, doxorubicin, and vincristine, and leads to some durable remissions and cure. Unfortunately, the long-term overall survival is less than 50% with R mini CHOP. And so although this is an appropriate backbone, there's certainly a lot of room for improvement.

And there's also toxicity even with R mini CHOP. So in their initial phase II trial, there was actual deaths related to the R mini CHOP, particularly in the first cycle or two, really necessitating some type of pre-phase help ease patients into the chemotherapy. One of the challenges that we face in the clinic is that when we meet an older patient, we both want to maximize our chance for cure, but also minimize the toxicity that is particularly pronounced. And there is very little data in terms of how to guide this at the bedside.

I'm excited that SWOG, with the US Intergroup, is conducting a trial, S1918, which prospectively includes a frailty assessment tool that was developed by the Italian group in lymphoma, and then also includes serial comprehensive geriatric assessment so that we can get a better idea about quality of life both during and after treatment.

So there is no great standard of care right now, but I would say that R mini CHOP, outside of a trial, is a very reasonable way to proceed.

PAOLO STRATI: Dr. Smith, thank you for outlining so well what we can do to minimize toxicity and to better select patients for this type of treatment. And as an Italian practitioner in the United States, I am very excited that the Italian frailty tool will be used in this SWOG trial. Are there any other ways to further improve safety when we use chemo immunotherapy in older patients or patients with comorbid health conditions?

In particular, there is a lot of concern about potentially infectious complications in these patients. And so I'm wondering if there's any routine antimicrobial prophylaxis that you recommend.

SONALI SMITH: Yes. I think it's really important to maximize supportive care for our older patients with aggressive lymphomas getting intensive therapy. I did mention the pre-phase, and I would just like to mention that one more time because I do think there's data that providing a brief pre-phase can minimize toxicity with the first cycle.

And how this pre-phase is given is highly variable. Again, the data is somewhat limited, but it typically includes steroids given for five to seven days with or without a dose of vincristine. And steroids themselves can have toxicity. And the dose of the steroids, I think, is somewhat controversial. In my personal practice, I use somewhere between 40 to 60 milligrams per day for five to seven days. And I do not typically use vincristine, although a prospective French trial recently did and showed that this significantly improved toxicity.

Other complications that can occur really are related to infection. And so, of course, all patients should have growth factor support as per ASCO guidelines. But I also routinely give VZV prophylaxis with acyclovir or valacyclovir. And for the first cycle in particular, I have patients come back to clinic after the first dose one week later to ensure that the counts are stable and that they are doing well. This is really where our team of nurses and other providers who are part of the care team are so important and communication is also very important.

PAOLO STRATI: So Dr. Smith, as you suggested, also, this patient actually received mini R-CHOP without any complications. And end-of-treatment PET/CT can showed a VL score of 3, so a complete metabolic remission, potentially. How do you interpret these findings?

SONALI SMITH: So response criteria in clinical trials, and then of course, extrapolated to the clinic, have evolved in lymphoma. And the Deauville or the International Prognostic Scoring System that has been used typically defines a uptake relative to liver and mediastinal blood pool. And those patients who have a Deauville 1 to 2, which is less than that bar, is considered negative. And 4 to 5 is positive, with five being the emergence of new sites of adenopathy.

The interpretation of a Deauville 3 can be somewhat more complicated, but this really outlines the limitations of just using the SUV or the PET scan uptake to measure response. For my patient and for this patient, the lymph nodes all substantially decreased in size. And having some type of combined interpretation of the uptake, as well as the size that has decreased, I think is going to be a very important part of how we approach patients going forward. So for this patient, I opted for close observation after the completion of therapy and felt that his Deauville 3, along with the decrease in the size of the lymph nodes, was very significant.

PAOLO STRATI: I completely agree with that. Where PET scan is an extremely helpful tool, particularly for the management of aggressive B-cell lymphoma, can also become a major challenge when it comes to its interpretation for these borderline scenarios. And as you said, it's very important to add into the equation multiple parameters, including CT findings and overall patient performance status symptoms.

So that's all we have for today. Thank you, Dr. Smith. This was a great conversation. We have learned and discussed a lot about diffuse large B-cell lymphoma, including novel biological agents, CAR-T cell therapy, management of elderly patients, and patients with comorbid health conditions and interpretation of PET/CT scan.

I think this will be very helpful. And the conversation will continue beyond this podcast. In part 2 of this episode, airing in November, we will discuss new therapies for mantle cell lymphoma and for follicular lymphoma. Thank you so much to all the listeners tuning into this episode of the ASCO Educational Podcast.

SONALI SMITH: Thank you. It's been a pleasure to speak with you today.

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SPEAKER: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In the second edition of this two-part Oncology, Etc. episode, hosts Dr. Patrick Loehrer (Indiana University) and Dr. David Johnson (University of Texas) continue their conversation with Dr. Otis Brawley, a distinguished professor of Oncology at Johns Hopkins and former Executive Vice President of the American Cancer Society.

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Air Date: 10/5/2021

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

DAVID JOHNSON: Welcome back to Oncology, Etc, and our second segment of our conversation with Otis Brawley, professor of Medicine at Johns Hopkins Medical School and the Bloomberg School of Public Health. Pat, I don't know about you, but Otis is a very impressive man, and he had a lot of really interesting things to say about his career development, family, et cetera in the first segment. This second segment, we're going to get to hear more about his time at the ACS. What were your thoughts about segment one?

PATRICK LOEHRER: Well, I loved talking to Otis, and you too, Dave. Parenthetically, Otis once told me in a dinner conversation we had that he felt like Forrest Gump, and I can identify with that. Where over the field, our field of oncology over the last several decades, we've met some incredibly wonderful people, and we've been lucky to be part of the history. The three of us, I think, do have a deep sense of the historical context of oncology. This is a young field, and there's just some extraordinary people, many of them real true heroes, and Otis has his figure on the pulse of that.

DAVID JOHNSON: Yeah, that's why he's been in some of the right places at the right time, and we'll hear more about that in this segment coming up now.

PATRICK LOEHRER: Now Otis has had a career in many different areas, including ODAC, the NCI, the ACS, now at Hopkins. So let's hear a little bit more about Dr. Brawley's experience at the American Cancer Society and particularly with his experience with the former CEO, John Seffrin.

DAVID JOHNSON: Sounds great.

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OTIS BRAWLEY: John and I had a wonderful run at the American Cancer Society. Got to do a lot of things. Got to testify for the Affordable Care Act. Got to do some of the science to actually argue that the Affordable Care Act would help. And I was fortunate enough to be there long enough to do some of the science to show that the Affordable Care Act is helping.

DAVID JOHNSON: Yeah, I mean actually all of the things you accomplished at the ACS are truly amazing. Let me ask you, just on a personal level, what did you like most about that job, and then what did you like least about that job?

[LAUGHTER]

OTIS BRAWLEY: I like the fact-- there were a lot of things I liked about that job. There were a couple hundred scientists and scientific support people that you got to work with. And I used to always say, I do politics so you can do science. And what I used to like the most, every Wednesday afternoon that I was in town, I would walk around just to watch those people think. I used to joke around and say, I'm just walking around to see who came to work today. But I really enjoyed watching them work and watching them think, and that was fun.

Another fun aspect of the job was people used to call and ask a little bit about the disease that they are a family member would have. And sitting down with them on the phone in those days-- we didn't have Zoom-- and talking to them through their disease. Not necessarily giving them advice on what to do in terms of treatment, but helping them understand the biology of the disease or connecting them with someone who was good in their disease.

And I happen to, by the way, have sent some patients to both of you guys. That was a lot of fun. Then the other thing, of course, was the fact that you could actually influence policy and fix things. I'll never forget sitting across from Terry Branstad, then the governor of Iowa, and convincing him that the right thing to do is to raise the excise tax on tobacco in Iowa. Being able to see that you're effective and to see that you're positively influencing things.

The bad side, some of the politics. I didn't necessarily like how some of the money was being raised or where they were raising money from. I think that you have to have a certain standard in terms of where you accept money. And we always had that tension with the fundraisers. But it's also true-- and I will give them a nod-- you can't do the fun things unless you raise money.

So I really truly enjoyed my time at the American Cancer Society. And by the way, a shout out to Karen Knudsen, who is the CEO running the American Cancer Society now. And I'm fully committed to helping the ACS and helping Karen be successful.

DAVID JOHNSON: One of the things I read-- I think I read this that you had said that one of your proudest accomplishments was revising the ACS screening guidelines. Tell us just a little bit about that.

OTIS BRAWLEY: Yeah, going all the way back to the early 1990s, I started realizing that a lot of these guidelines for screening, or back then, this is before the NCCN guidelines for treatment even, that were published by various organizations, including the American Cancer Society. We're almost the equivalent of-- get the impression that in the 1960s, it would have been a smoke-filled room. But you gather a bunch of people into a room, and they come up with, this is what we should be doing.

Indeed, the American Cancer Society in 1991 endorsed annual PSA screening for prostate cancer based purely on getting a group of primarily urologists into a room, and that's what they came up with. There was very little review of the science. There really was no science at that time except the science to show that PSA screening found cancer. There were no studies to show that led to men benefiting in that they didn't die.

Indeed, in 1991, there was no study to show that treatment of early prostate cancer saved lives. The study to show treatment of prostate cancer saves lives was first published in 2003, and the radiation saves lives in 1997, 1998. Surgery saves lives in 2003 and screening has a small effect published in 2009. But they started recommending it in 1991 in this almost smoke-filled room kind of atmosphere.

When I got to the American Cancer Society, I started an effort, and we involved people from the National Academy of Medicine, we involved people from the NCCN, from the American Urological Association, the American Academy of Family Physicians, the American College of Physicians. And we got together in that almost smoke-filled room again, but the idea was, how do you make responsible guidelines?

And we wrote that up into a paper guide widely accepted by all of the organizations, and it involves a review of the literature that is commissioned by someone. And they spend a long time reviewing the literature and writing a literature review. And then you have a group of experts from various fields to include epidemiology and screening, social work, someone who's had the disease. Not just the surgeons and medical oncologists who treat the disease but some population scientists as well.

They sit down and they reveal all of the scientific data, and then they start coming up with, we recommend this. And then they rank how strong that recommendation is based on the data. We published this in 2013 in The Journal of the American Medical Association. I do think that was important, you're right. That's Otis trying to bring his policy and his belief in orthodox approach to science and bring it all together.

PATRICK LOEHRER: So let me reflect a little bit more on something. There is a book that I also just recently read by Dax-Devlon Ross, and it's a book entitled, Letters to my White Male Friends, and it was a fascinating read to me. You have this public persona and professional persona of being an outstanding physician, clinician, public speaker. But what we the three of us have never really had the conversation today is we have much more interest now in DEI.

One of our other speakers talked about the fact that there's a tax that is placed upon underrepresented minorities and academics. They are all expected to be on committees. They have to be doing different things. And so the things that they love to do, they can't do it because they have to represent their race or their gender or their ethnicity.

OTIS BRAWLEY: I have been blessed and fortunate. There are problems, and there are huge burdens that Black doctors, and women doctors by the way, have to carry. I have been fortunate that I have skated through without a lot of that burden. Maybe it has to do with oncology, but I will tell you that I have been helped by so many doctors, men and women, predominantly white, but some Asian, Muslim, Jewish, Christian.

I don't know if it's oncology is selective of people who want to give folks a fair shake and really believe in mentoring and finding a protege and promoting their career. I have been incredibly, incredibly fortunate. Now that I say that, there are doctors, minority doctors and women, who don't have the benefits and don't have the fortunes that I have had, and we all have to be careful for that.

As I said early on, John Altman told me that I will thank him by getting more Blacks and women into the old boys club. And so that was his realizing that there is a-- or there was a problem. I think there still is a problem in terms of diversity.

Now I have seen personally some of the problem more outside of oncology in some of the other specialties. More in internal medicine and surgery, for example. By the way, there are also some benefit.

I did well in medical school in third and fourth year in medical school at the University of Chicago because there were a group of Black nurses who were held that I wasn't going to fail. The nurses took me under their wing and taught me how to draw blood, how to pass a swan. The first code I ever called, there was a nurse standing behind me with the check off list.

And so there are some advantages to being Black as well. But there are some disadvantages. I've been very fortunate. My advice to Black physicians is to keep an open mind and seek out the folks in medicine who truly do want to help you and truly do want to mentor you. And for the folks who are not minority or not women in medicine, I say, try to keep an open mind and try to help everybody equally.

PATRICK LOEHRER: Thank you.

DAVID JOHNSON: I want to go back to your book for a moment. And again, for those who've not read it, I would encourage them to do. So it's a really honest book, I think, well-written. You made a comment in there-- I want to make sure I quote it near correctly. You said that improvement in our health care system must be a bottom up process. What do you mean by "bottom up?"

OTIS BRAWLEY: Well, much of it is driven by demand from patients and other folks. The name of the book was, How We Do Harm. And the synopsis is there are bunch of people who are harmed because they don't get the care that they need. And there's a bunch of people who are harmed because they get too much medicine and too much care. And they rob those resources away from the folks who don't get care at the same time that they're harmed by being overtreated, getting treatments that they don't need.

The other thing, if I can add, in American health care, we don't stress risk reduction enough. I used to call it "prevention." Some of the survivors convince me to stress "activities to reduce risk of disease." We don't do a lot in this country in terms of diet and exercise. We try to do some work somewhat successfully on tobacco avoidance.

We need to teach people how to be healthy. And if I were czar of medicine in the United States, I would try to make sure that everybody had a health coach. Many of us go to the gym and we have a trainer. We need trainers to teach us how to be healthy and how to do the right things to stay healthy.

That's part of the bottom up. And in terms of costs you know my last paper that I published from the American Cancer Society, I published purposefully, this is my last paper. Ahmedin Jemal who's a wonderful epidemiologist who I happen to have worked with when I was at the National Cancer Institute and again later in my career at the American Cancer Society, I pushed Ahmedin-- he publishes these papers, and we estimate x number of people are going to be diagnosed with breast cancer and y number are going to die.

He and I had talked for a long time about how college education reduces risk of cancer death dramatically. If you give a college education to a Black man, his risk of death from cancer goes down to less than the average risk for a white American. There's something about giving people college education that prevents cancer death.

I simply challenged Ahmedin, calculate for me how many people in the United States would die if everybody had the risk of death of college-educated Americans. And he came back with of the 600,000 people who die in any given year, 132,000 would not die if they had all the things from prevention through screening, diagnosis, and treatment that college-educated people. Just think about that-- 132,000.

Then I started trying to figure out what drug prevents 132,000 deaths per year? And I couldn't think of one until recently, and it happens to be the coronavirus vaccine. Which ironically has shown itself to be the greatest drug ever created in all of medicine.

But in cancer, there's no breakthrough drug that is more effective than just simply getting every human being the care from risk reduction and prevention all the way through treatment that every human being ought to be getting. The solution to some of that starts with fixing third grade and teaching kids about exercise, about proper diet.

PATRICK LOEHRER: We're going to have to wind things up here. But real quickly, a book you would recommend?

OTIS BRAWLEY: Skip Trump, who's someone that we all know, wonderful guy used to run Roswell Park Cancer Center, just published a book actually it's coming out in September called, Centers of the Cancer Universe, A Half Century of Progress Against Cancer. I got a preprint of that, and it is a great book.

It talks about what we've learned in oncology over the last 50 years since Richard Nixon signed the National Cancer Act. Keep in mind, he declared war on cancer on December 23, 1971. So we have an anniversary coming up in December.

PATRICK LOEHRER: I want to close. Another book, I read the autobiography of Frederick Douglass. It's a wonderful read. It really is good. There were some endorsements at the end of this book, and one of them was written by a Benjamin Brawley, who wrote this review in a book called, The Negro in Literature and Art in 1921. And Benjamin Brawley was writing this about Frederick Douglass, but I would like to have you just reflect a moment. I think he was writing it about you, and I'm just going to read this.

He basically said, at the time of his death in 1895, Douglass had won for himself a place of unique distinction. Large of heart and of mind, he was interested in every forward movement for his people, but his charity embraced all men in all races. His mutation was international, and today, many of his speeches are found to be the standard works of oratory. I think if your great, great grandfather were here today, he would be so incredibly proud of his protege, Otis. And it's such a privilege and pleasure to have you join us today on Oncology, Etc. Thank you so much.

OTIS BRAWLEY: Thank you. And thank both of you for all the help you've given me over the years

DAVID JOHNSON: Great pleasure having you today, Otis. I want to also thank all of our listeners for tuning in to Oncology, Etc. This is an ASCO educational podcast. We really are here to talk about anything and everything. So we're looking for ideas. Please, if you have any suggestions, feel free to email us at education@ASCO.org. Thanks again, and remember, Pat has a face for podcasts.

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In this Social Determinants of Health (SDOH) episode, Dr. Jacquelyne Gaddy (UNC-Chapel Hill) speaks with Dr. Marvella Ford (Medical University of South) and Dr. Jennifer Ligibel (Dana-Farber Cancer Institute) on obesity and energy balance as modifiable risk factors and how clinicians can respectfully engage with their patients on this topic. View COI.

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Air date: 9/29/2021

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LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement.

For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere.

I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learned new ways of thinking about these issues and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high quality equitable cancer care. Thank you.

JACQUELYNE GADDY: Welcome to the ASCO Social Determinants of Health Series. I am Dr. Jacquelyne Gaddy, and I'm a current third year fellow in the Division of Oncology at UNC Chapel Hill. With me today is Dr. Marvella Ford, endowed chair of cancer disparities from the Medical University of South Carolina and South Carolina State University, and I also have the pleasure of having Dr. Jennifer Ligibel, director of the Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber Cancer Institute.

In this episode, we will be discussing obesity and energy balance as modifiable risk factors, and how clinicians can respectfully engage with their patients on these topics. Dr. Ligibel, we've had some time talking together. And I want to start by actually just getting an introduction of how we can actually relate cancer and the outcomes of cancer with this topic today of obesity.

JENNIFER LIGIBEL: Sure. This is definitely a topic that we've learned a lot about, especially within the last few decades. We recognize that obesity is an epidemic, not just in the United States, but everywhere. In the US, many adult populations across various states have a prevalence of 40% or more of the adult population having obesity. And this rate is rising around the world. And we've known for a long time that obesity increases the risk of a lot of diseases, heart disease, diabetes. The connection between obesity and cancer is something that we have recognized more recently.

And in fact, in 2016, the International Agency for Research in Cancer reviewed all of the data looking at the relationship between excess adiposity, whether it was measured through BMI, through body composition and the risk of developing cancer, and found that there were 13 different cancers for which there was a clear and consistent relationship between higher levels of obesity and higher levels of cancer.

We also know that there's a relationship between a number of factors that contribute to excess adiposity, things like inactivity and poor dietary quality and excess cancer risk. We also know that individuals with obesity face increased challenges after cancer diagnosis. There are higher incidences of things like surgical complications, neuropathy, and other side effects of cancer therapies. And for many diseases, individuals with obesity at the time of cancer diagnosis have an increased risk of cancer recurrence and mortality as compared to leaner individuals.

So we know that there is a strong relationship between obesity and the risk of developing cancer and the risk of dying from cancer, as well as suffering increased toxicity from cancer treatment.

JACQUELYNE GADDY: Thank you for that, Dr. Ligibel. That gives us a really introduction into this important topic. And Dr. Ford, if we can dive a little bit deeper, I know this past summer for our ASCO conference, I had the pleasure of listening to you as you presented. And I wanted to specifically ask you to address what you discussed in regards to inflammation and its relation to cancer and obesity.

MARVELLA FORD: Yes, absolutely. So as Dr. Ligibel just noted, there is an association between being overweight and likelihood of being diagnosed with cancer, and also, the cancer treatment outcomes. What we have seen is that there's an underlying association between bile inflammation. The same bile inflammation that is linked to heart disease is also linked to cancer. And the good news is that there's something that we can do about it. So when we talk about the modifiable behavioral health risks, this is one of them.

What we're seeing is that physical activity can actually reduce levels of bile inflammation in the body, which is great news. And Dr. Ligibel and others around the country are leading the way in developing physical activity interventions for people who are diagnosed with cancer so that we can intervene early on to develop strategies to improve their cancer treatment outcomes.

You know, that leads us to the broader question of physical activity for the general population. How can we increase physical activity for everyone to reduce cancer risk? And I think there are some very attainable goals that we can set and there are some strategies that are achievable that we can accomplish in that arena.

JACQUELYNE GADDY: As we think about the social determinants of health and why we got started with this, and Dr. Pierce did an amazing job of putting that at the forefront of ASCO's goals this past year during her presidency, before we dive even deeper, Dr. Ford, I want you to address specifically, you had a wonderful figure. And I can kind of see it in my mind right now in regards to the race maps when addressing obesity, and again, tying that back into its relation to cancer.

MARVELLA FORD: So when we talk about obesity, what we don't want to do is get into a blaming-the-victim kind of approach where, oh, these people are just so overweight, that is exactly what we do not want to do. It's really important to look at the social determinants of health and the contributors to overweight and obesity. Because people are working with what they have available to them. And so the map that you're talking about really highlights the social determinants of health in relation to obesity.

And so what we saw-- I showed a series of maps-- is that obesity in the US, it's associated with race but it appears to be driven by socioeconomic position. So areas that have lower levels of income, education, you know, upward mobility is what we used to call it, have higher rates of obesity. And a lot of that is due to what's in those communities. And so if you drive around those communities, whether they're rural or urban, you see a lot of fast food places. You see a lot of food deserts.

Food deserts are not just a purview of inner cities, urban areas, rural areas where you would think, well, that's ironic because food is grown in the rural areas. But rural areas can also be food deserts. And so in my work at the Hollings Cancer Center, we're focusing a lot on the I-95 corridor of South Carolina, which ranges from North Carolina at the top, to Georgia at the lower end. And I know that's been an area of interest to many in our state.

And what we have seen is that it's one of the poorest and most medically underserved areas of our state. And if you just do a visual exam, if you drive on the I-95 corridor and just get off on some of the side roads, you see just a dearth of healthy foods, grocery stores. There are convenience stores. There are gas stations. I call it gas station food, convenience foods, where you can eat to fill up. But it's not really healthy food and it's not life-affirming, life-promoting, life-enhancing food.

And so this is what people have available to them. We have seen this with the impact of COVID-19 on the school systems. What we're seeing is that the schools, even if they're closed due to COVID, they still have to remain engaged in food distribution. Because for a lot of the children, the meals that they had at school may have been the only meals that they had that day. And so kudos to the school systems around the country for continuing to distribute healthy food to the children even when school is not physically in session, even when they're in a hybrid model or a virtual model. And on the weekends, they're sending kids home with backpacks full of healthy foods.

I just spoke with a principal on Friday. One student tested positive at a local high school, and so she had to inform the other students who were in contact with that student that they had to get sent home. And one young lady was crying and said, but I want to stay in school. And there are a lot of reasons, and one of them is food security, being able to eat healthy foods and having access to healthy foods. Healthy foods can help to reduce inflammation in the body.

But we also know that there are stressors that are associated with the social determinants of health that also raise levels of bile inflammation, stress, stressors. What are the stressors associated with the social determinants of health? The same stressors that we're experiencing in this pandemic. The pandemic is really highlighting the stressors that many people in the US have lived with on a daily basis for decades.

Job insecurity, food insecurity, housing insecurity, educational insecurity, not knowing whether if the rent increases by $30 in one month, it may not seem like a lot, but if your budget is already stretched really tight, you may not be able to make a $30 increase. And then, if you and your family are living in your car, how does that impact healthy eating, and how does that impact stress?

And so all of these factors combined, there's kind of an interactive multiplicative effect on increasing levels of stress and stressors that people are facing. And again, the good news is that physical activity can help to lower those levels of bile inflammation. And I think we just need to be cognizant of where people are when we develop interventions and start with where they are in what's available and accessible to them in order for the interventions to really be successful.

JACQUELYNE GADDY: Thank you for that, Dr. Ford. And I think you touched on a lot of different barriers that I know I can attest as a fellow and been in training for so long, and I know Dr. Ligibel can also likely attest to that as well. I'm from Buffalo, New York, a rather urban environment. And you know, my mom raised me as a single parent mother. So many of these barriers that you're describing I either experience personally or definitely have close friends, et cetera, that did have these barriers.

Dr. Ligibel, I want to ask you in your day-to-day practicing, outside of the barriers that Dr. Ford addressed, what do you tend to see on a day-to-day basis that are common barriers that patients face when they're battling obesity?

JENNIFER LIGIBEL: I think that's a great question. And I will say that one of the things that we've been doing through ASCO for the last few years through our work in the obesity initiative is trying to learn a bit more about what's happening in practice. What are patients hearing? What are doctors saying?

And so in 2019, we conducted a survey that went out to all of ASCO membership asking anyone who actively participates in clinic, whether they were a physician, a nurse practitioner, a chemotherapy nurse, kind of all through the entire health team, do you talk to your patients about physical activity, about nutrition, about their body weight and how that may be connected to cancer?

Now this was a survey, so the people that responded were very interested in this topic. And most of them indicated that they did talk about these topics with their patients. But they noted that they felt like they didn't have a lot of training in what's the best way to bring up these topics. And we asked them specifically, what do you think are barriers to patients making healthy lifestyle changes after cancer diagnosis?

And one of the things that they said, certainly, barriers in terms of transportation and resources. There's just-- many places don't have physical activity programs to send their patients to. But they also talked about that patients weren't aware that this was an important part of their health, and that this really needed to be a message that was echoed many times, not just by one provider.

So we followed up that survey to providers and asked patients, what are you hearing about nutrition and exercise from your cancer care providers? And not surprisingly, because this was patients that were also interested in this, they all said they wanted to hear about this. And only about half of them actually got any kind of information about a healthy diet or exercise or weight management from their providers.

And so I think that there's clearly work that we still need to be doing, trying to figure out, how do you help providers talk about these things with their patients? How do you help patients make these types of healthy lifestyle choices after cancer diagnosis? Because there are a lot more barriers than for someone who's thinking about making changes in their activity before cancer diagnosis related to their cancer. They may be more tired. They may have side effects like neuropathy or lymphedema.

In addition to all the things that Dr. Ford talked about, cancer creates a lot of economic uncertainty for people. And that can contribute to not thinking that you've got the resources to be able to make these healthy lifestyle changes. So I think there's a lot of work to be done both in the messaging and then having the services available to people to make it easier for people to choose healthier foods, to have the ability to exercise in a safe place. We have a long way to go to really make these things be accessible to our patients.

JACQUELYNE GADDY: Thank you, Dr. Ligibel. Dr. Ford, you have talked about this during this conversation. And you have previously mentioned this as far as your research is concerned. As we consider the solution, because that's the biggest part, right? We can talk about the problem all day, and I think we tend to do that a lot in research. But what is more important and most important in my eyes are what are we going to do about it? As we think about all of the things that Dr. Ligibel just mentioned, what are the parts from a structural racism standpoint that are lacking, that you think A, is a problem-- so we need to identify it-- and then also, as we transition into the last part of this conversation is, what are we going to do about it?

MARVELLA FORD: That's a really great question, because that's really the ultimate question, right? What are we going to do about it? And so I think that you and Dr. Ligibel have alluded to the fact that we want to make sure that the interventions are successful, these physical activity interventions. And so that means starting with where the patients are.

If we are working with a patient population that already was struggling financially before a cancer diagnosis, we have to recognize the impact of that on their lives of the cancer diagnosis, on their economic stability after. And even people who had really great jobs before a cancer diagnosis, depending on where they worked, they may or may not have the benefits that would continue to sustain them over time, over the course of the cancer treatment. So their lives may take a drastic shift as well.

And so I think that what we want to do is recognize what the patients are going through on a daily basis. And it would be wonderful to be able to offer at our cancer centers, people come for treatment. Can we do physical activity at the cancer centers? I know some are starting to do different types of exercise. But this would be something that they could bring their children to, they could bring their families so they wouldn't have to worry about child care. I know our cancer center at one point offered Middle Eastern dancing, or belly dancing. And it was just great. People could bring their kids. I participated. Even before my own breast cancer diagnosis, I participated.

And it really helped the women to regain mobility and use of their arms, being able to raise their arms over their heads after a breast cancer treatment. And so it really-- I think the exercise could be tailored to the needs of cancer patients as they recover. And as they continue to go through treatment and recover, you can tailor the specific types of exercise to their needs.

Most of our cancer centers have some type of wellness facility. And so I know that at our wellness center, we have a physician, Dr. Jennifer Harper, who started a physical activity program for breast cancer survivors. And it's gone on for, I think, at least five years. And so it's really great if we can build on the resources that we have in our centers, and our cancer centers, out in the community. If we partner with local schools, have gyms. A lot of them open up after hours to the community members so they can bring their children and everyone can exercise together.

But we could bring in people with training with cancer survivors to work on physical activities that are specific to certain types of cancer to help improve outcomes for those cancer types just by partnering with local schools. So I think there are a lot of things that we could do, making use of existing resources in our communities, doing a lot of partnerships, partnering with fire departments, partnering with people in the community who can become champions and can help drive it.

JACQUELYNE GADDY: Thank you for that, Dr. Ford. And lastly, Dr. Ligibel, we talk about-- in the Black community, a common thing that we mention is the Brown tax. But then when we consider the intersectionality of the Brown tax with those that are obese and that stigma that's associated with it. Lastly, what do we do to try to address that stigma? Because I think patients come in, they're already fearful about their diagnosis. And then some are fearful because the color of their skin. And now they're obese as well. How do we tackle that as providers and trainees?

JENNIFER LIGIBEL: That is a phenomenal question. And there are many data that show that people with obesity are less likely to seek medical care. They're diagnosed with cancers at a later stage. And a lot of that is due to that feeling of, I don't really want to engage with the system. I don't feel good when people are talking to me about my weight. And I think this is a place where we really need some concentrated training.

There are many subspecialties where this is already being worked upon. And I think that this is, again, something that as an oncology community, we need to think about how to treat our patients with respect and create an environment where people feel comfortable. Because therapeutic partnership with your cancer provider is so important, that people have that sense of being cared for. And I think this is really something that we can work on together.

JACQUELYNE GADDY: Dr. Ligibel and Dr. Ford, it's been a pleasure working with you before this and during this. I want to thank you both for taking time to speak with me today. And I want to thank you for joining us for this episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about this series by leaving a review or by simply emailing us at professionaldevelopment@asco.org. Thank you.

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Dr. Rodrigo Munhoz (Sírio Libanês Hospital, Brazil) moderates a discussion highlighting the impact that COVID-19 has had on clinical research. Featuring Drs. Nathan Pennell (Cleveland Clinic), Kathryn Mileham (Atrium Health), and patient advocate Dr. Jane Perlmutter.

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Air Date: 9/22/2021

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SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

CLIFFORD HUDIS: Hello, and welcome to the ASCO Education Podcast. In today's episode, we'll be discussing the far-reaching effects that the COVID-19 pandemic has had and continues to have in clinical research. Today, I'm excited to be joined by three authors of The American Society of Clinical Oncology's Road to Recovery Report, Learning from the COVID-19 Experience to Improve Clinical Research and Cancer Care, medical oncologist Dr. Nathan Pannell, who's a Professor of Medicine at Case Western Reserve University and Deputy Associate Director for Clinical Research at Case Comprehensive Cancer Center, Dr. Katherine Milehama, medical oncologist and Chief of Section of Thoracic Medical Oncology at Atrium Health, and patient advocate and cancer survivor, Dr. Jane Perlmutter. So the first question is, how has the COVID pandemic affected clinical research in the United States and worldwide regarding impact on ongoing clinical trials, ability to launch new trials, and ability to enroll patients into trials.

NATHAN PANNELL: Yeah, that's a really great question, and it's evolved over time as the pandemic has gone on. When things first started in early 2020, there was an immediate massive drop in enrollment to clinical trials as physicians were redeployed, nurses were redeployed to other jobs. Suddenly, all the research personnel had to start working virtually from home and didn't really have systems in place to allow them to do that. Suddenly, people could not travel to sites anymore to monitor trials or initiate trials.

And, of course, the focus for patient care really was on protecting people from being exposed to COVID. So patients suddenly were being seen as telehealth visits rather than in-person visits, and scheduled scans and other things were moved out to become less often, just to reduce their exposure. And this really, essentially, initially, stopped a lot of clinical research. So studies showed that enrollment dropped by about 40% almost immediately.

On the flip side, though, the good things that happened with this were that there was a lot of flexibility immediately taken up as the result of this. So telemedicine not only made it more convenient for patients to be seen, but it expanded the reach of being able to get to patients. Suddenly, patients could get studies done, scans and such done at local sites rather than having to drive, in my case, from West Virginia up to Cleveland.

Instead of showing up to get a bottle of pills, we could ship it to them so they could get it at home. So a lot of these flexible elements were actually boons. And so those are part of the things that we wanted to incorporate in our recommendations.

JANE PERLMUTTER: So, from a patient perspective, I think Nate has covered quite a few of the issues. To begin with, people who are very scared to come to cancer centers, and, in fact, diagnosis of new cancers went down because people were avoiding the hospital. Later on, things sort of straightened out a bit. But there's always been a challenge of getting people to enroll in clinical trials, and this added to it, the anxiety for new patients.

But as Nate pointed out, there was increased flexibility, and that really is something that patients have been and advocates have been talking about for a long time. So the use of telehealth is not universally appreciated by patients, particularly for really important visits, new diagnoses. But for more routine visits, they're very much appreciated, particularly for people who live far from the cancer center, and likewise, things like distributing drugs to their home or having some of their lab tests or scans locally. So things that we have put in our road to recovery recommendations, many of them should increase the access and availability, and therefore, diversity of patients in clinical trials and are things that advocates have been arguing for awhile. It's lovely to see that it's possible and we shouldn't go back.

KATHERINE MILEHAM: I would add to what Nate and Jane have said. The pandemic also highlighted how variable approaches are to conducting research. During the pandemic, regulators, sponsors, CROs had to implement new policies and guidance to reduce the administrative and regulatory burden and change some of those requirements. Staff positions evolved. We had people cross-covering trials and cross-covering different positions. Many tasks were completed remotely.

So, I mean, really how can we adopt what we have learned from the pandemic for future emergencies and whatever situation we may face? Certainly, we would want to continue virtual and options, maintain some of the efficiencies that we've learned. I think a word that's already been used multiple times today is flexible.

We need to be flexible in our utilization of options for site selection, study start up, signatures, maybe electronically completed, and study monitoring and adapting a more uniform system for amendments and deviations may improve our data quality ultimately and efficient use of our resources. All of these changes have impacted time, cost, and workload in clinical research, which were affected by COVID-19.

NATHAN PANNELL: I just wanted to add that in the year and a half since all of this started, a lot of the clinical research has returned very close to the level that it was before in terms of being able to open trials and enroll patients to trials. So it's not nearly as impaired as it was initially. But I will say that the flexibility has been mixed.

A lot of the regulations now have started to remove the interstate telemedicine visits, which is really starting to impact our ability to do trials. On the other hand, we're still doing mostly virtual startups and monitoring and whatnot, and a lot of them move to more electronic signatures and other things, I think, is continuing to move forward. So it's been a bit of a mixed bag in terms of how it's impacted clinical research.

CLIFFORD HUDIS: And what have been and may continue to be the downstream consequences of slowed clinical research progress and patient care.

KATHERINE MILEHAM: It's interesting when we think about the downstream consequences slowing that clinical research progress. I think there are multiple facets, some of which, as a clinician, I may not have seen. We've considered quite a bit regarding the clinical research, but also need to think about the implications of translational and basic science.

From a translational perspective, extra biopsies and blood, do we really need that or will we learn in the future that that information may have been valuable for next steps in research? We need to think about the impact of labs closing and those downstream effects. Despite grant extensions for projects, funding may have been resourced to staff retention, and that may have an impact on some of the basic science developments that will, ultimately, influence our clinical research progress on patient care years from now.

JANE PERLMUTTER: So I think Kate brings up some really important points. And I think it will be very hard to tease out the impact on basic and translational research because there are so many other factors going on. So use of liquid biopsies, which can be distributed locally, can perhaps take the place of some of the other biopsies.

From a patient's point of view, the hope is that if we keep some of the flexibility, we'll have more patients enrolling and more diverse patients. And I think we can make sure that happens, but we might not if countervailing forces return to normal. The other thing is to the extent that we are flexible and run more pragmatic trials, we might actually slow down new drug development, but we might actually improve treatment for patients.

One of my key sort of points these days is, what is the value of an efficacious drug that is not effective? And to the extent that we're running more flexible, more pragmatic trials, we'll find treatments that improve patients' lives as opposed to drugs that have minimal efficaciousness and perhaps no effectiveness, something that many patients are not aware of that distinction, but is really, I think, something we should be paying more attention to.

NATHAN PANNELL: Yeah that's a fantastic point. Fantastic point, Jane. The slowdown in some of the trials and development may be worth it if it leads to improved design of trials that make things more accessible and equitable for people to enroll in clinical trials. And I also endorse what Katie said here.

I think a lot of the-- very underappreciated how much non-clinical or clinical trial research slowed down in the last year. Doing translational research and other projects, I know at the Cleveland Clinic, our IRB was utterly overwhelmed with COVID-related research and could not even review non-clinical trial trials for much of 2020. They just refused it. They would send it right back and say, you can't-- we can't do this right now. We don't have the bandwidth for it.

And one of the other things, of course, is because clinical trials weren't designed for the pandemic and all the flexibilities that were worked into it, there were a lot of what we call protocol deviations that were happening throughout the pandemic. And a lot of work will be done now, both through ASCO and FDA, studying the impact of these deviations and how this may have impacted access to trials and the safety and validity of the results of these trials. So a lot of interesting research should be coming out of that, hopefully, in the next couple of years.

JANE PERLMUTTER: Right. And I do believe that many people are looking to do that kind of research to see the impact retrospectively. But I hope that we also devote some time to looking prospectively at to what extent some of these recommendations are actually carried forth and what impact they have on the accrual and diversity of our trials.

CLIFFORD HUDIS: And based on your experience during the pandemic, do you believe that physicians have been more hesitant to refer patients to clinical trials during the pandemic?

NATHAN PANNELL: I don't know if necessarily they're hesitant, but I will tell you that we really cannot under emphasized the pressure that's been put on our health care workforce during the pandemic and how incredibly overwhelmed everyone has become. Burnout and overwork was a major problem even before the pandemic, and it's only become worse. Many physicians, oncologists are really at their capacity in being able to take care of people.

And what we know is enrolling patients to clinical research takes time and it is really a labor of love. Most places don't get paid more for doing that, but it takes extra time. And you really-- that's one of the things that, when you run out of time in your day, that sometimes gets sacrificed, is offering someone a clinical trial. I wouldn't be surprised if overall accrual to trials went down.

The other thing that we saw is that, of course, patients have been less willing, in my opinion, to travel as far for clinical trials and are seeing their care closer to home where they don't have to travel as much. And one of the things we hope to do with the road to recovery recommendations is increase access of trials to lots more sites that are closer to patients. But as of right now, that probably is limiting access to trials.

JANE PERLMUTTER: Right. I've seen quite a bit of data on accruals, and it varies quite a bit. I think Nate has pointed out that it changed over the 18 months that we've been involved. The NCTN, the NCI cooperative group trials initially really dropped, but is pretty much back, maybe even a little bit ahead before the pandemic. Other trials, I've heard mixed results. So we'll see.

KATHERINE MILEHAM: Yeah, I think providers remain motivated to offer the best care for their patients. I think there's a challenge in lack of knowledge in which trials are open, which trials have slots available, or maybe under amendment just because of some of this backlog and need for updating some of these processes. We always want to improve care for a patient. That hasn't changed.

But to your point, we're really reevaluating how patients can participate in these trials, and maybe rather than referring them to one of your larger, top-tiered academic centers that may have a clinical trial, they may be looking for one that is closer to home. That may be a little bit different than what they would have initially but the opportunities to seek clinical trials in a regional setting rather than with as much travel, I think, is becoming a greater focus. I would also add, Nate, your point about just wellness and the need to continue to address stress and burnout for all staff members throughout this process has really come to the forefront. And I think that this has been a very unfortunate setting, allowed us to have comprehensive and open discussions about how to create a better work environment, despite all of these just overwhelming situations related to the pandemic.

CLIFFORD HUDIS: So, on the other hand, do you believe that patients have been more reluctant to enroll into clinical trials during the pandemic?

JANE PERLMUTTER: You know, I think that varies. Certainly, patients, as we said, particularly at the beginning, did not want to have to travel, so that could have limited some, and did not want to have to have extra visits where they had to go to the hospital. To the extent that the trials have been flexible and have reduced those, I think it actually could have helped, certainly, having drugs delivered to home or having home nurses do infusions. Having local scans or fewer scans could possibly be an incentive to patients. But it really varies so much from the trial, from the location, and from those curves of when COVID was up and when it was down and how we've all been adapting to it.

NATHAN PANNELL: I think that's going to be one of the most interesting questions in my mind that hopefully will come out of this is the influence of telehealth on access. I think the hope when we were first discussing and putting together our road to recovery recommendations was that expanding telehealth improved access and equity, but I've definitely heard people talk about how access to broadband and cellular services is not universal in the United States, and, certainly, there is varying limits of technological savvy, older adults not necessarily quite as comfortable with that. And I've certainly seen that myself. A lot of my patients older patients want to just do a telephone visit because they can't figure out their smartphone for Zoom. And studying the influence of this on equity and accessibility to trials, I think, will be a very interesting question.

KATHERINE MILEHAM: I think one of the things I've noticed about reluctancy in clinical trial enrollment has been in early development of agents, and patients have had some hesitancy on that drug effect on the immune system. How will this affect my immune system? Will it increase my risk for complications from COVID? Are there restrictions on COVID vaccination and my participation in this clinical trial? There have been some really wonderful questions that patients have asked in regards to their health and well-being when it comes to early investigational agents and their potential participation in clinical trials.

CLIFFORD HUDIS: in this setting, which patient populations have been most affected by lower availability of clinical trials?

NATHAN PANNELL: I think, unfortunately, the populations that were already most at risk of having less access to trials were the ones that were affected the most, so patients in lower income areas, rural. Communities that have perhaps limited access to academic sites that might offer clinical trials were probably the ones that were most impacted by the pandemic as well. Certainly, once you enroll in a clinical trial and once you've seen someone, the ability of telemedicine to help was tremendous for a lot of my patients who are from rural communities.

But initial access, probably, was significantly impacted by that. And that probably has continued, but the recommendation to increase the use and allow the use of telemedicine more routinely, things like being able to do electronic consents would, I think, greatly improve the access to clinical trials. That's one of the recommendations that we made. Continuing to allow people to get scans locally in their community hospitals and cancer centers, shipping drugs, as Jane pointed out, to patients so they don't have to drive to pick them up every month. I think a lot of things we can do will hopefully improve this access going forward.

JANE PERLMUTTER: And one thing that COVID did is it really put a spotlight on the health disparities in our country. And in some ways, I think cancer trials have been aware of this for a while and have been taking some steps to expand eligibility in a lot of ways and to provide some outreach to recruit more less represented populations. But in general, I think the United States, at least health care, is going to be paying more attention to that, and hopefully, it will ameliorate some of those issues.

CLIFFORD HUDIS: And now, moving forward to the final two topics of this fantastic discussion, ASCO recently published its Road to Recovery, Learning from the COVID-19 Experience to Improve Clinical Research and Cancer Care Report. What are the main recommendations for modifying pre-pandemic policies and practices to improve patient participation in clinical research?

JANE PERLMUTTER: Two of the recommendations from the Road to Recovery Initiative are really very much patient-focused. The first one is to ensure that clinical trials are accessible, affordable, and equitable for patients. And in the report, we outlined quite a number of steps that we've actually talked about already on this podcast that can actually have an impact on that, but they have to be implemented mindfully.

And the other goal that is very much important to patients and that we've also discussed is to design more pragmatic and efficient clinical trials that are better integrated into routine cancer care. And I think if everybody who's designing a trial thinks about each step that they're taking, whether it's eligibility or extra scans or biopsies, and thinks about how important they are and where some flexibility can be added, I think that would really help patients increase accrual. Might possibly require a slightly larger trial, but if we do trials-- if we accrue faster, that should compensate.

KATHERINE MILEHAM: Yeah, I would certainly encourage anyone listening to this podcast that has not read the Road to Recovery to take the time and really review the comprehensive approach and recommendations from the team, and then take it to that next level. In order for us to really be successful from what we've learned, we need to have an action plan and we need to then implement this into the future of the way that we conduct research, first, by implementing it into trial design. ASCO has already published one stewardship of blood and tissue biopsies. ASCO has worked diligently on broadening eligibility criteria, and has worked with Friends of Cancer Research and the FDA, and that has been quite successful and continues to expand. I think the Road to Recovery needs to have that same value and provide impact and should be a reference when writing new trials. I think that the only way we're going to see that is if we change the way that we're writing the protocols and not lose the lessons we have learned from this pandemic.

NATHAN PANNELL: One of the things that I thought was so gratifying during the process of putting together these recommendations was that every stakeholder we spoke with, whether it was the NCI, FDA, pharmaceutical industry, the contract research organizations, everyone agreed that all of these goals were positive and wanted to move towards improving access for patients to enroll in clinical research. And so I'm hopeful that as things move forward, we will continue to have the same buy-in from all of the stakeholders. Because if any of them start to resist, it's going to make it much more difficult to make the change.

CLIFFORD HUDIS: And what progress has been made in implementing roadmap recommendations? And what are the next steps?

NATHAN PANNELL: Yeah, I think it is important to point out that the roadmap really is just what it says. It's an outline of general recommendations for next steps and what can be done. But already, many of these stakeholders are moving forward to try to implement some of the changes. The FDA has been very proactive.

So during the pandemic, they were wonderful and rapidly came out with guidances that allowed a lot of the flexibilities we've already discussed earlier in this podcast, and they have continued to say that they want the trials to be patient-centric. They do not necessarily require all the nitpicky bureaucratic details that we're used to seeing in clinical trials. The NCI has put together task forces to try to address many of the same goals that we addressed in our road to recovery in trying to move things forward, and I think we can't really underestimate the power of the National Clinical Trials Network and the cooperative groups to try to implement some of these.

We have very little influence on how pharmaceutical companies will design their trials, but we do have a lot of influence on how we design NCI-sponsored cooperative group trials. And we can even-- there are steering committees that can look at and make sure that pragmatic elements and efficient elements are put into trials as we go forward. And my guess is that will be really where we'll first start to see the power of these recommendations change. And then, finally, ASCO has put together a number of task forces doing things, for example, like looking at the impact of deviations on clinical trials, on how they influence the safety and scientific validity of the studies.

CLIFFORD HUDIS: Any final comments regarding this last question, Jane? Katie?

JANE PERLMUTTER: My final comments are don't go back, but build back better.

KATHERINE MILEHAM: I would just add that the pandemic is far from over, and we will continue to learn from these experiences, and these recommendations will evolve as we move forward and continue to learn from them.

CLIFFORD HUDIS: Thank you all so much for participating in this discussion. Indeed, the burden of the pandemic has been unprecedented. Nevertheless, the capacity for resilience, collaboration, and to adapt and incorporate technology will most likely result in long-term positive lessons that may translate into improvements to clinical research for years to come. This has been a great conversation. Thank you to all our listeners for tuning into this episode of ASCO Education Podcast.

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In this two-part episode of Oncology, Etc., hosts Dr. Patrick Loehrer (Indiana University) and Dr. David Johnson (University of Texas) speak with Dr. Otis Brawley, a Bloomberg Distinguished Professor of Oncology at Johns Hopkins and former Executive Vice President of the American Cancer Society, about his incredible life and career.

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Air Date: 9/7/2021

TRANSCRIPT

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. No mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

PAT LOEHER: Hi. I'm Pat Loeher. I'm director of the Centers of Global Oncology and Health Equity at Indiana University Melbourne and Bren Simon Cancer Center.

DAVID JOHNSON: And good morning. I'm Dave Johnson. I'm professor of Internal Medicine Oncology at the University of Texas Southwestern in Dallas. We're really excited to be back with the second episode of our ASCO Educational Podcast Oncology, et cetera. And I don't know about you, but my arm's really sore from entering all the fan mail we got from the first episode. Either that or maybe it was that shingles shot I got last week I don't know.

PAT LOEHER: No, I agree. I really appreciate Bev. Your wife just kept texting me how wonderful I was, and it was-- I enjoyed it.

DAVID JOHNSON: Well, I'm glad you mentioned that, because I wanted to read this one fan mail. It says, dear, Dave. Thanks for carrying Pat [INAUDIBLE]. I don't know who that is, but I appreciate it.

PAT LOEHER: Yeah, it works both ways. Works both ways. So what have you been reading lately, Dave?

DAVID JOHNSON: Well, as you know, I love to read. And actually what I'm reading right now is The Howe dynasty by Julie Flavell. It's about the brothers Howe that were involved in the Revolutionary War. But the book I finished just prior to the one I'm reading now is Adam Grant's Think Again, which I really enjoyed. It made me think again. What about you?

PAT LOEHER: How many times have you read the book by the way?

DAVID JOHNSON: Again. Twice.

PAT LOEHER: Think again. Yeah. There was the book that's called The One Thing. I know if you saw that book which I read a while back. It took me, like, a year to do it, because I just kept doing other things while I was reading it. I felt so guilty about it. I did read the book Caste recently, and it was on Oprah Winfrey's list. Barack Obama picked it.

And actually read that on my way to Kenya a couple of months ago and found it very fascinating actually. You know, the notion of the juxtaposing of Nazi Germany, of the caste system in India, and the racial struggles that was going on here in this country. And I thought it was a very well written book.

DAVID JOHNSON: Yeah. You mentioned that book to me, and I finished reading it a couple of weeks ago. I agree with you. I enjoy it very much. I learned a lot. We want to introduce today's guest. We're really, really fortunate to have with us today Dr. Otis Brawley.

Dr. Brawley Is the Bloomberg Distinguished Professor of Oncology and Epidemiology at Johns Hopkins University. He's a graduate of the University of Chicago School of Medicine. He completed a residency in Internal Medicine at the University Hospitals in Cleveland Case Western Reserve and did a Fellowship in Medical Oncology at the National Cancer Institute, where he spent a good portion of his early career.

In the 2000s, he relocated to Atlanta, where he became medical director of the Georgia Cancer Center for Excellence at Grady Memorial Hospital. One of the really most famous safety net hospitals in America. He was deputy director of Cancer Control at the Winship Cancer Institute of Emory University.

And then he moved on to really a significant role. He became the chief medical and scientific officer and executive vise president of the American Cancer Society from 2007 to 2018, and we'll have a chance to perhaps query him about that. Currently, he leads a broad interdisciplinary research program on cancer health disparities at the Bloomberg School of Public Health and the Johns Hopkins Kimmel Cancer Center.

Dr. Brawley has received innumerable awards. It would take the whole podcast to list them all. But among them are the American Medical Association Distinguished Service Award, University of Chicago Alumni of Professional Achievement Award, and-- one that I think is particularly poignant for ASCO members-- the Martin D. Abeloff Award for Excellence in Public Health and Cancer Control. In 2015, Dr. Brawley was elected to the National Academy of Medicine and well deserved. So just welcome to oncology, et cetera. Thank you so much for taking the time to be with us today.

OTIS BRAWLEY: Thank you for having me. It's a pleasure to be with you and Pat.

DAVID JOHNSON: Well, it's great to have you. I can tell you that. So let's just start with just a little background. Why don't you tell us about yourself? Where are you from? Where did you grow up?

OTIS BRAWLEY: I grew up in Detroit. I grew up in one of the automobile worker neighborhoods, a blue collar neighborhood, and went to the Catholic schools there. The nuns in grade school pushed me toward the Jesuit school for high school, and the Jesuits in high school taught me how to think and really propelled me. And indeed much of my career, much of my writings, my philosophy toward medicine was really influenced by early education with the Jesuits.

DAVID JOHNSON: Wow.

PAT LOEHER: Hey, Otis. I just want to throw in-- in terms of books that we've read, one of the other books that I want to give a shout out is the book you wrote called How We Do Harm, which was really a wonderful book. I think it was several years in the making. Would love to hear how you made that. But I do-- while you're talking about your background, speak a little bit about Edward McKnight Brawley and Benjamin.

OTIS BRAWLEY: Oh, OK. Benjamin Brawley was my grandfather's brother, and Edward McKnight Brawley was my grandfather's father. They're both ministers in the Methodist Church, the AME Church. Benjamin Brawley was dean of Morehouse College back in the 1920s, and he was the first Brawley to graduate from the University of Chicago.

He got a PhD from the University of Chicago back during the 19-teens. And those are just a couple of my relatives. If you go to Morehouse, you'll find that the English building is Benjamin Brawley Hall, and Edward McKnight Brawley was his father and was a free Black back before the Civil War, and a minister before, during, and after.

PAT LOEHER: Incredible legacy. Incredible legacy.

DAVID JOHNSON: Those were your relatives from the South from the Georgia area?

OTIS BRAWLEY: Well, my father grew up in Northwestern Alabama. An area called Leighton, Alabama. It's near Muscle Shoals. So those of us who remember the Beverly Hillbillies. My mother is from the middle of Arkansas. She's from Pine Bluff, Arkansas. And they met in Detroit. They were part of that northern migration in the early 20th century, where a large number of Blacks left the rural South and went up North to get jobs primarily in the industrial North.

My father arrived there right after World War II. He served in World War II, got discharged, and went to Detroit. My mother actually went to Detroit really early on during World War II and worked in an airplane factory during the war. Then the two of them met. My father was a janitor at the Veterans Hospital in Detroit, and my mother worked in the cafeteria there. And that's how they met. They had my older sister, who was 8 years older than me, who became an attorney. And my younger sister was a certified public accountant.

PAT LOEHER: What a remarkable story for your parents. And tell us a little bit about your journey to become a physician. How did that happen?

OTIS BRAWLEY: It was very interesting. In high school, I was very talkative. I was very interested in policy. I did debate. It was very not a sciencey kind of person. In college, I became very interested in Chemistry and for much of College. I was going to go to graduate school in Chemistry.

And luckily, when I was in college, I came under the influence of an infectious disease doc named Elliot Kieff. And he and I became very good friends. He was chief of infectious disease at the University of Chicago at that time. And over about two years, Elliott convinced me to drop the Chemistry thing and go to Medical school. And I applied to Medical school late, because I was so late in making that decision.

I got into the University of Chicago and stayed there because my support system was there. And then in Medical school came across another gentleman. I've been very fortunate to have good mentorship and good people. They influenced me over the years. John Altman, who was one of the original medical oncologists back in the 1950s when there was arguments about how we should be staging people. Should there be four stages or three stages, and that sort of thing is when John really cut his teeth in Oncology. He became a great lymphoma doc.

John took me under his wing while I was in Medical school, and pretty much open the world up to me, and explained to me how the world rotates in Medicine. And that heavily influenced me. Told me to go into Oncology because I still had an interest in Policy. And he said there's going to be a lot of policy in oncology in the future, and the best way to get involved with it is to get your credentials as a medical oncologist. And in many respects, I think in the early 1980s, John was thinking I was going to be chief medical officer of the American Cancer Society, which I obtained in 2007.

PAT LOEHER: Wow. Yeah. We want to hear more about that. I just have to throw this in parenthetically that one of the things I did here is that I applied late to Medical school and got into the University of Chicago. I just wanted to know that I applied early, and there was a lesser known school in Chicago that sent me a rejection letter. And not only did they reject me, the last line of it says, good luck in whatever career you decide to go into, meaning that, if you can't get into our school, there's no way you'll be a physician. So I really admire you.

DAVID JOHNSON: Yeah. I applied late too and--

PAT LOEHER: Got into Vanderbilt.

DAVID JOHNSON: No. No. No, no. I didn't go to Vanderbilt. I only got into accepted to one medical school, and it was late. I was just like my career as a chief. And I was, like, the last person admitted to my class in med school. That's unbelievably interesting. Tell us, was John your influence to go to the NCI? Or what prompted you to choose the NCI for your medical oncology training?

OTIS BRAWLEY: Actually, John was very influential in that decision. I told him I wanted to go into medical oncology when I was a resident in Cleveland. And he said, Otis, in his Austrian accent, I have been expecting this phone call. And he then told me where I was going to apply and gave me a list of nine places to apply.

He told me I would get an interview at every one of those places. And as I was going place to place, I should rank them one, two, three, four. And so I called them with his ranking. And my first choice was not the National Cancer Institute. At which point he told me, if you go to that place, I will never speak to you again.

PAT LOEHER: Oh wow.

OTIS BRAWLEY: And I said, but you told me to go there to interview. He said, I wanted you to interview there, but I don't want you to train there. And I said, well, my first choice is the National Cancer Institute. And he said, fine. And a couple of days later, I got a phone call from the National Cancer Institute, and I got hired.

And I will also tell you I called John up. And he says, Otis, I have been expecting this phone call. And then he said, now I want you to realize something. There is an old boys network, and your job is to get more Blacks and women into it. That's how you will thank me.

PAT LOEHER: Wow. Wow.

DAVID JOHNSON: So you were at the NCI at a period of time where many people would say it was the heyday of the NCI. I think it's still the heyday now, but tell us about your experiences there. What was it like?

OTIS BRAWLEY: It was fascinating. It was when Vince DeVita was still the director. I was there for the transition. Eli Glatstein was the chair of Radiation Oncology. It was an amazing group of people. Dan Longo was there doing lymphoma. Marc Lippman was still there doing breast. It was just an amazing group of people when I applied, and interviewed, and when I first got there.

And there was still a lot of excitement. We were still heavily involved in chemotherapy. Of course, I was up on the 12th and 13th floor building 10. Down on the second and third floor was Dr. Rosenberg doing his immunotherapy work, which of course, has now paid off dramatically.

Some of the old monoclonal antibody work that led to a number of wonderful drugs was being started at that time in the mid to late 1980s. And so it was still a very, very exciting time at the National Cancer Institute. And in many respects, we were still on that burst of optimism that started with Nixon's war on cancer in 1971. It was still felt almost 20 years later at the National Cancer Institute.

DAVID JOHNSON: And you linked up with an old friend of mine from the old Southeast Cancer City, a gentleman by the name of Barry Kramer?

OTIS BRAWLEY: Yes.

DAVID JOHNSON: What a wonderful relationship. So how influential was Barry in your involvement?

OTIS BRAWLEY: Barry was incredibly influential. As I said, I have been very fortunate that along the way I have come under the influence of some amazing physicians, and I've had amazing mentorship. And that's actually, I think, important for all of us in oncology.

Barry and I got to work together for quite a long while. Barry influenced me and literally taught me epidemiology. Got me some major opportunities at the National Cancer Institute and really was influential in promoting me and boosting my career.

PAT LOEHER: I want to move you a little bit longer in your career and talk about the ACS and a little bit your experience there, Otis. And then with that, actually, maybe the secondary question is, a commentary on the leaders over the years that you have had-- the aspects of good things about leadership and the poor things. And obviously, you have certainly much to share on that.

OTIS BRAWLEY: Yeah. Well, as I devote my career at the National Cancer Institute, I went to the Division of Cancer Prevention and Control. Under Barry, learned a lot of epidemiology, and learned a lot about screening, learned a lot about treatment outcomes, got very involved with some of the disparities or minority health issues.

And then I was very fortunate to be detailed to work in the surgeon general's office and work with David Satcher when he was surgeon general. He's the one who started using the words, health disparities. Prior to that, we called it minority health or special populations. He used health disparities. And I was able to use some of my epidemiologic talents to develop some of those arguments using science to show.

And actually some of the things that we had to show, believe it or not, was we had to show that equal treatment yields equal outcome amongst equal patients, because a lot of people, especially the politicians we need to deal with, were really hung up. And we still see this to this day that people are hung up that Black biology is different from white biology.

Even in breast cancer today I hear that even though I like to point out there are now six states where the Black death rate for breast cancer is the same as the white death rate for breast cancer. And there are 12 states in the United States where white women have a higher risk of death from breast cancer than Black women in Massachusetts.

But anyway, we got into this biology thing. And so I was very fortunate again to work for David Satcher and had some exposure to Tuskegee syphilis trial and the president's apology for that. So I was really involved with a number of things. And then the Jesuits still back there-- always think, always be contemplative, always reflect on what you're doing, always question what you're doing. Father Pawlikowski's maxims, which Dick Cheney sort of preferred is a few years later.

And that is there are things you know, things you don't know, things you believe. Question what you know more so than anything else. And so that's really how I develop my concerns about orthodox use of Medicine. And using the science and applying it in a very Orthodox way, I started realizing that a lot of the disparities were due to wasted resources with people being non-scientific especially in the era of the 1990s, where everybody was doing prostate cancer screening, and there was not a single trial to show that prostate cancer screening saved lives.

Yet all the resources were going into that, and people were literally-- I was able to go to various safety net hospitals and see all the resources being diverted away. People would shut down cervical cancer screening programs to do prostate cancer, which just didn't make sense. So I got very interested in how you practice medicine.

Went to the Emory in 2001, because I wanted some practical experience outside of government. And had a wonderful opportunity to go there. Work at Emory. Work at one of the largest safety net hospitals in the country. Learn a little bit about the practical application of Medicine and some of the problems that people at safety net hospitals encounter. Worked with the School of Public Health and folks who did health education to learn how to convey messages.

And then I was very fortunate. You know, the American Cancer Society is right down the street from Emory University. And I had met the chief medical officer of the American Cancer Society, Harmon Eyre, back in the 1990s when I was at the National Cancer Institute.

And again this sort of mentoring thing comes up again. Harmon called me up one morning and said, why don't we go to lunch? And so we went to one of the student cafeterias at Emory and had lunch. And he essentially said, you know, I'm 67 years old. I've had this job for 20 years. I'm tired of it. Why don't you take it?

PAT LOEHER: Wow.

OTIS BRAWLEY: And so I applied to be chief medical officer of the American Cancer Society and got to know John Safran, who, at that time, was the CEO, who was a wonderful man with incredible vision. Again, this mentorship thing comes up again.

PAT LOEHER: Well, Dave we had a lot of information here. We're going to carry this over. This concludes the first part of our two-part interview with Dr. Brawley. And our next episode will air on October 5. We'll talk a little bit more about Dr. Brawley's life experiences and particularly his work with the American Cancer Society NCI. He's been an incredible individual, and we look forward to finishing up this conversation.

Thank you to all our listeners for tuning in to Oncology Et Cetera an ASCO Education Podcast, where we'll talk about anything and everything. If you happen to have an idea for a topic or guest you'd like to see on the show, please email us at education@ASCO.org. Thanks again. And remember Dave has a face for podcast.

SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In this Social Determinants of Health (SDOH) episode, Dr. Narjust Duma (DFCI) moderates a talk with Dr. Danielle McCarthy (University of Wisconsin-Madison) and Dr. Erica Warner (Harvard Medical School & MGH) on tobacco cessation as a modifiable risk factor and how clinicians can respectfully engage with their patients on this topic. View COI.

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Air Date: 8/26/21

TRANSCRIPT

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LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions.

Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals. Every patient, every day, everywhere.

I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality equitable cancer care. Thank you.

NARJUST DUMA: Welcome to the eighth episode of ASCO Social Determinants of Health Series. I'm Dr. Narjust Duma, and I'm the associate director of the Cancer Care Equity Program at the Dana-Farber Cancer Institute. With me is Dr. Danielle McCarthy, associate director for research and the Center for Tobacco Research and Intervention at the University of Wisconsin-Madison. I also have the pleasure of having Dr. Erica Warner assistant professor of medicine from Harvard Medical School and assistant investigator for Massachusetts General Hospital.

In this episode, we will discuss tobacco cessation as a modifiable risk factor and how clinicians can respectfully engage with their patients on this topic. I would like to thank Dr. McCarthy and Dr. Warner for being here today.

ERICA WARNER: Thank you.

DANIELLE MCCARTHY: My pleasure.

NARJUST DUMA: Moving forward, we address Dr. McCarthy and Dr. Warner by their first name. We're colleagues and friends, and this is a friendly conversation about a very important subject. So we're going to start with a few questions, and they're going to give us their great insightful comments.

First, we want to speak about the stigma with tobacco use. There's a lot of stigma associated with tobacco use and subsequently with lung cancer. This affects all patients, but it can be worse in some communities versus others. Dr. Warner, can you speak to us about this stigma with tobacco?

ERICA WARNER: Yes, certainly. I think stigma is a really important issue. And I'm doing some work around this right now with cancer patients. I think that anti-smoking campaigns have been amazingly effective really at spreading the message that smoking is associated with a long list of negative health outcomes.

I think the most well-known being the link with lung cancer risk. And over time, as smoking rates have declined in the United States-- focus is mainly on the United States, but I think some of these comments are relevant for other places. As smoking rates have declined, you've seen that the populations that continue to have the highest rates of smoking are largely lower socioeconomic populations in the US now.

And so I think this combination of the sense that messaging has told us that smoking is, quote, unquote, "bad," that marginalized populations tend to have higher smoking rates currently, coupled with this idea that smoking is just a poor choice, a bad decision that any given individual is making, leads to smoking and ultimately people who smoke being stigmatized in our society today. And I think there's a lot that we can do to try and combat this, but really focusing on this idea that smoking is a poor personal choice that someone is making.

We know that there has been lots of advertising that has been targeted at specific communities to try and get them to smoke and even now that we're not allowed to have smoking advertisements on TV and on billboards in the way that they used to be, there are still many ways in which these communities are being targeted, as well as recognizing that smoking is an addiction. So there are plenty of people who smoke, who recognize that it can have bad consequences for their health. They don't wish to continue to smoke but are struggling for smoking cessation.

And so I think that really all of us, and as we'll talk later about providers, need to approach smoking and individuals who smoke with more empathy.

NARJUST DUMA: And connected to that question, we have seen marketing that is targeted to certain populations. So while living in the Midwest, I have a very close contact with Native Americans. And the amount of mail these populations receive about smoking, like you turn 16, and you get an advertisement in the mail about here's your first Marlboro package for free.

And this can be for the two of you, how is this targeted marketing that also affected women in the 1970s and '60s in which is smoking was associated with weight loss, like if you want to stay thin or slim, you need to smoke. So how this has affected tobacco in the past and currently now with this targeted marketing to populations.

DANIELLE MCCARTHY: Yeah. I can certainly speak to that in Wisconsin. We see, it's not just marketing at point of sale. There is direct marketing, as you mentioned. There are also just a greater concentration of tobacco retail outlets in certain communities. So there's just more access.

And the Wisconsin African-American Tobacco Prevention Network has done a lot of really great work reaching out to retail sites, convenience stores, corner markets, to try to encourage them to verify a customer's age before they sell tobacco and also gotten them to agree to no menthol Sundays. Like they've had some days where they just won't sell menthol cigarettes because menthol has been so aggressively marketed to African-American communities.

And they've gotten these retailers to agree to this and to buy into this, that this is a social justice issue. It's not just a matter of commerce. It's a matter of equity. And it's really exciting to see that even people who make a little profit on selling tobacco are willing to modify their conduct to address these issues, at least in a small way. And so if we see a menthol ban enacted on a broader scale, that could have a big positive impact.

NARJUST DUMA: Thank you for your comment, Dr. McCarthy. We have seen some changes at the corporate and institutional level, such as made by CVS to stop to sell tobacco. And this is very linked to your comment. What has been the role of health care institutions in promoting tobacco cessation? I know we have talked about also being reactive to be more proactive, but what has changed and what can change still?

DANIELLE MCCARTHY: Right. A lot has changed. We now assess smoking status along with height, weight, and blood pressure. It's now considered a vital sign because it's the leading preventable cause of death. So knowing your patient's tobacco use status and addressing it is really important. Knowing it and doing nothing with that information is not very helpful. And so the next step is really important.

And we know that from population studies that only about half of patients who walk out of a doctor's office walk out and say, yeah, the doctor talked to me about my smoking and offered me something. And so we want to get that up to 100%.

And we think that health systems can implement changes to make that happen. And we've shown that if you integrate some prompts and reminders into the electronic health record, that that can greatly increase the rates at which treatment is offered and that about 12% or so of people who come in off the street for another reason to your clinic will agree to set a quit date within the next 30 days and accept treatment. So that's pretty impressive, right?

So even though the majority of people say they want to quit smoking, that doesn't mean that they want to do it today. But if you ask them today, more than 1 in 10 will probably say, yes, I will agree to treatment. Sign me up. I'm willing to quit within 30 days. So you really can intervene. Health systems can support that by creating workflows that are efficient and effective and connect the patients who smoke with cost low-barrier treatments.

For example, State Tobacco Quit Lines that don't charge for their services and now offer pharmacotherapy and free phone coaching or counseling. So that's something that we've been working on here in Wisconsin. And multiple health systems have now adopted electronic referral to the State Quitline as one of their standard options that they provide for patients who smoke.

The other thing is that 52 cancer centers in the country are now part of an NCI-funded initiative called the Cancer Center Cessation Initiative to more proactively address smoking in cancer settings. And so if you're working in a cancer center, odds are that they're participating in this program and that they're developing some sort of initiative to try to improve the rates of addressing tobacco use among people who present with cancer.

NARJUST DUMA: And the follow-up question, which is a little bit out of script, is have we seen differences in smoking cessation counseling across racial/ethnic groups and across gender? And you can spend a little bit more on this, Dr. McCarthy, if you would like.

DANIELLE MCCARTHY: Yeah. Sadly. We have. And even though we see that motivation to quit is higher among minoritized racial groups in the US and that more quit attempts are actually made among minoritized groups than among white people who smoke, that the rates of achieving cessation are historically lower.

What I think is really exciting about these proactive system changes is we actually have seen higher uptake of treatment among African-American patients, among Hispanic patients in some models, not all models, and especially high uptake among Medicaid-eligible patients, where smoking rates can be as high as 30%, compared to about 14% in the general population.

So where there is great need, there's also great interest in treatment and great receptivity to treatment. And I think that's incredibly exciting and encouraging, that maybe if we were to universally offer cessation treatment, we would see that the treatments were getting where they have not gotten before.

If you just wait for a patient to bring it up, it's not going to be the patient who has the greatest economic stress, greatest social stress who's going to say, you know what's on the top of my agenda today is quitting smoking, it's going to be the most resource to patients who do that.

And so if you want to address these inequities, I think you have to bring it to the patient where they are. And I think that's what's exciting about these system changes. So far, what we've seen is that they seem to enhance equity rather than exacerbate disparities.

ERICA WARNER: I think that's such an important point. And I think it resonates across all of our health equity work, is that if you leave it up to the patient or the provider that has to at each point of interaction make the decision about whether or not to offer something, whether or not to ask for something, that's when disparities creep in. And so we have to make it automated. We have to make it standard of care.

NARJUST DUMA: And that's a very important point. And to our listeners, there are preconceptions that certain populations will not be interested, when in fact, the data has shown the opposite. There are several psychosocial aspects associated with smoking. It is an addiction.

And I think providers should consider that. And this question goes to our guests. How can our understanding of these psychosocial aspects help providers and their conversations about cessation with patients? And now we start with Danielle.

DANIELLE MCCARTHY: It is an addiction. It is a powerful addiction. Untreated, the relapse rates are higher than 90%. It is a relapsing and remitting chronic condition. And there are neuroplastic changes that happen with just a few exposures to nicotine that can be long-lasting. Now, some of those can be reversed by quitting, but they take a long time.

The other thing that is really tricky about tobacco that led us to be confused about whether it was addicting or not for a while is it's not as frankly intoxicating as some other substances. So you don't see a clear intoxication. And the withdrawal symptoms are marked primarily by two things, negative mood and craving. And you don't see the same kind of withdrawal that you see with opioids or even alcohol.

And so for a long time we thought, well, this is just a habit. It is not a habit. There are neuroplastic changes that we know happen and that make it really challenging to quit. And we're asking people to quit in environments in which tobacco is incredibly easy to access. It's still fairly cheap, even considering taxes and price increases. And it's available in the grocery store or the pharmacy and at every gas station.

So it is just embedded in the environment in a way that makes a reliance on willpower and self-control not a great way to go. And so that's why we really advocate for pharmacotherapy to help manage the withdrawal and give the self-control a chance to win in this environment that's really challenging to quit.

ERICA WARNER: I would echo all of that and just add that I think that up front we have to be open and honest with patients, that we recognize that it's an addiction and that it's hard to quit. And that it may take multiple attempts to be successful. And that's not failure. That's a process that you're going towards for a goal.

Because I think it can be disheartening for people who have an earnest desire to quit and find it hard and are not able to on their initial attempts. But we don't want that to be a barrier to continuing to try. And we can support that, as was just described, with medications to help ease some of the symptoms and also trying to provide referrals or other support that can help them address some of the social factors that are associated with smoking.

So if you are trying to quit smoking, and you have someone in your household or multiple people in your household that also smoke, that's going to make it more challenging for you to quit. So to the extent that we can involve the household or the family in smoking, I think that that can help and particularly helps marginalized populations to try and quit.

NARJUST DUMA: Thank you for those comments. And some of the basis for these episodes and podcast is that many of us did not receive training about social determinants of health or how to obtain the information appropriately without being biased or making the patient feel bad about their behavior. So what are some of the comments or questions that providers should completely leave out when addressing smoking cessation or just smoking status? I would start with Danielle.

DANIELLE MCCARTHY: So we like to not start with a yes or no question. Do you want to quit smoking? That's too big an ask. You're going to get too many nos because that sounds scary. That sounds like, are you talking about today?

I don't want to do it today. So we advocate starting it as a conversation. Let's talk about your smoking. I have some resources that I can offer you. I can help you with your smoking. I can offer you medication. I can connect you with counseling. Would you be interested in changing your smoking.

So we're not necessarily saying, let's go from 0 to 60 in three seconds right now, because I got to go to the next patient. We're saying, let's have a conversation. I have something to offer you. Now, let's talk about whether you're interested. So make sure that you get the message across that you have treatment options to share before you ask, are you ready to do this? And sometimes even offer treatment with people who are just willing to cut down.

You could offer treatment to people who are willing to try treatment, even if they're not sure they're ready to quit. That is where we're going with treatment is to say, you don't have to know that I'm setting a quit date on October 1, and that's definitely when I'm going to quit smoking, you could start treatment and see how it goes and then make a decision about whether you're able to go to 0 or whether you just want to cut down by half.

NARJUST DUMA: Erica, which other comments or questions do you think your providers should leave out when addressing smoking cessation?

ERICA WARNER: Yeah I think that there's been a fair amount of work done that shows that positive messaging that emphasizes the benefits of quitting can be more effective than negative messaging that's focused on scare tactics and emphasizing the harms.

I think many people are well aware of the potential harms of smoking, but I think emphasizing that quitting sort of no matter where you are in your experience of quitting, no matter where you are in your cancer journey, for example, among individuals diagnosed with cancer, that there are benefits to quitting. And that, again, we have ways in which we can help support you with medication, with counseling, with other supports that can facilitate this for you.

NARJUST DUMA: Well, thank you to the two of you. We are shortly running out of time. But we want to finish this podcast with tips, because it's very important to share little pearls of wisdom for two of you, experts in the field. I'm no expert. I'm a lung cancer doctor, and I have learned tremendously from the two of you.

So what are some of the tips for providers and also patients or family members to help get these conversations started? And why are we asking for these tips? Because often patients with cancer are not offered smoking cessation counseling. So Danielle, what are one or two tips that you recommend for a provider to get that conversation started?

DANIELLE MCCARTHY: So I would refer people to the National Cancer Center Network Smoking Cessation Guideline, which provides really helpful algorithms. So what do I do if my patient tells me they quit two days ago? So that doesn't mean that they're quit for life? So what do I do with that?

What do I do with someone who's willing to quit within 30 days versus who isn't? And it has a great list of resources and treatment recommendations. These are the pharmacotherapies that are recommended as a first-line, and here are some special considerations for people who are on chemotherapy, et cetera. It's a really great resource.

And also know that there are Tobacco Quit Lines in every state. Every state has a free Tobacco Quit Line available. And that can offer coaching, which can be a great adjunct to the pharmacotherapy that you might provide.

NARJUST DUMA: Erica? A few tips for our listeners.

ERICA WARNER: I don't know that I have that much more to add than what we've said thus far. I would just emphasize this idea of approaching conversations with empathy. I think that we just did some focus groups around women smokers and lung cancer screening.

And we asked them about their interactions with providers around smoking. And many of them described a kind of adversarial interaction, where they felt like the provider was just mainly focused on the fact that they smoked and that was bad and they should quit. And they couldn't really get past that. And I think that's a barrier. It makes patients shut down.

I think providers feel uncomfortable if a conversation is approached that way. And it doesn't end up being useful, I think, for either party. And so, again, I think some of the tips we've shared around empathy, around acknowledging that it's challenging, around making it a conversation about a process as opposed to a one-time let's do it now kind of thing, would all be very helpful.

NARJUST DUMA: Well, thank you for those tips. To our listeners, it's important that we know that we're not doing a good job while addressing smoking cessation with our patients with cancer. We all can do a better job. It is important to practice empathy, like Erica mentioned, and also to avoid yes and no questions, like that Danielle mentioned. Come from a place of cultural humility because it's an addiction more than a choice.

So thank you for joining us for this episode of the Social Determinants of Health at ASCO. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by emails to professionaldevelopment@asco.org. Thank you, everyone.

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SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning Weekly Podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning Center at elearning.asco.org.

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Immunotherapy is transforming the treatment landscape for triple-negative breast cancer. Through patient cases, Drs. Ruth O’Regan (medical oncologist, University of Rochester) and Jacob Kettle (Pharmacist, University of Missouri) discuss the application of novel treatment options.

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Air Date: 8/18/2021

TRANSCRIPT

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SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

RUTH O'REGAN: Hello and welcome to ASCO's Education Podcast episode, focused on new therapies for triple negative breast cancer. My name is Ruth O'Regan. I'm a medical oncologist and the Chair of Medicine at the University of Rochester.

JACOB KETTLE: And I'm Dr. Jacob Kettle. I'm an oncology clinical pharmacy specialist and pharmacy manager at University of Missouri Health Care's Ellis Fischel Cancer Center. We'll start our discussion today with a patient case. So let's say we have a 64-year-old female diagnosed with stage two triple-negative breast cancer three years ago. She received neoadjuvant AC-T and then underwent mastectomy, followed by adjuvant capecitabine. One year after completing therapy, she presented with new neck masts. Imaging demonstrated cervical nodes, probable liver metastases, and lymph node biopsy confirmed suspicion of recurrence, and now metastatic triple-negative breast cancer that is PDL1 positive.

So Dr. Regan, what, in this patient, would you be considering for therapy for her.

RUTH O'REGAN: Yeah, so I think unfortunately this is a pretty typical history of a patient with triple-negative breast cancer having this recurrence within two to three years of diagnosis. So her cancer is PDL1 positive, so obviously that would mean that we would consider immunotherapy for this patient. And there are two options with regard to this. We can either use atezolizumab or pembrolizumab plus chemotherapy, which could be paclitaxel, nab-paclitaxel, or, indeed, gemcitabine and carboplatin.

So just to very briefly review the trials-- so the IMpassion 130 trial randomized patients in the first-line setting with metastatic triple-negative breast cancer to nab-paclitaxel weekly with or without atezolizumab, and it showed a benefit and progression-free survival of about two months in patients whose cancers were PDL1 positive, and also an overall survival advantage that was quite meaningful at about seven months in the patients who received the immunotherapy plus nab-paclitaxel compared to the control arm. So that obviously would be a very reasonable option for this patient.

The KEYNOTE-355 trial evaluated chemotherapy, which could be paclitaxel, nab-paclitaxel gemcitabine, carboplatin, with or without pembrolizumab, again in the first-line setting for metastatic triple-negative breast cancer. And so really, very similar results to the IMpassion study with about a two month improvement in progression-free survival in patients whose cancers were PDL1 positive.

What we'll talk about later on is how we define PDL1 positivity in this patient population.

JACOB KETTLE: Yeah, I think that's an important distinction.

RUTH O'REGAN: Yeah, I think we can talk about that, because I think most of us now are actually doing both of the assays. But on the face of it, in somebody who has a cancer that's PDL1 positive, I'm not sure that there's a huge difference. Obviously you can't do cross-trial comparisons. I tend to use atezolizumab plus nab-paclitaxel because that was the first one that was approved. But I also think, in a patient who's had a recent taxane, using pembrolizumab plus gem/carbo would also be very reasonable.

The other trial I was just going to mention was the IMpassion 131 trial.

JACOB KETTLE: Yeah, absolutely. It's a game changer.

RUTH O'REGAN: It really is, because in that study they use paclitaxel with or without atezolizumab and actually didn't see an advantage for the immunotherapy, even in patients with PDL1 positive cancers. We really don't know why that is, but it's definitely an interesting finding.

JACOB KETTLE: I mean, I think that really speaks to the importance of sticking with what we know from the trials.

RUTH O'REGAN: Absolutely

JACOB KETTLE: I think there's a tendency, especially with pembro's FDA approval, says chemo. Just-- that's it, chemo. But the trial, as you mentioned, limits it to paclitaxel, nab-paclitaxel, or the combination of carbo and gemcitabine, but really to extrapolate that to other chemo regimens, other drugs, I think that's a little bit of a stretch. Because, again, we saw an IMpassion 131, maybe it's not, across the board, efficacious. There may be some subtle differences there. I'm glad you brought that up, because I think that's an important distinction.

RUTH O'REGAN: It's all about following the data. I think that's a key thing. So Jake, just in your role as a pharmacist, I think will be very interesting for you to talk a little bit about toxicity of these agents, and if there's any difference in the safety profile between these agents.

JACOB KETTLE: Yeah, I think what we've seen is pretty consistent as really all our experiences. We've started combining immunotherapy with chemotherapies that really it's not this new emergence of unexpected toxicity or an unacceptable level of toxicity. It's just what we would expect with chemotherapy agents and what we've already known with immune therapy agents. So there's nothing new and emergent or difficult to deal with. And from the IO toxicity profile, it's all the same stuff we're used to. Derm toxicities, GI, pulmonary, endocrinopathies for the most part.

We are comparing to PD1 inhibitor in pembrolizumab to PDL1 inhibitor in atezolizumab, so maybe there are some subtle differences. I think some of the things I've read have suggested maybe endocrinopathies are potentially more likely with PD 1 inhibitors.

But these are all subtle things, very nuanced-- I don't think anything that would really dictate a difference in choice of therapy. So I think from the side effect profile, fairly interchangeable, at least from the immunotherapy perspective. Obviously, we're talking about the biggest difference is the chemo backbone, and that's going to be a key driver in what regimen you pick.

Again atezolizumab-- very limited to the nab-paclitaxel backbone, which is great drug. Like you said, it was the first out. And I think another important caveat is that is the only trial in this space where we have overall survival data. We don't see that yet in KEYNOTE-355. Although, as you pointed out, PFS looks very similar between the two. So we anticipate-- don't extrapolate too much, but anticipate those are, efficacy-wise, pretty interchangeable.

But the chemo backbone-- big difference between the two. Again, you have a little bit of flexibility of pembrolizumab to use paclitaxel, nab-paclitaxel. Or I think, again, for those patients that have recently exposed to paclitaxel-- it kind of fits with our case. This patient-- relatively early relapse, pretty early recently exposed to taxanes in the neoadjuvant or adjuvant space, you may want to use a different regimen. Carboplatin and gemcitabine-- a great commonly used triple-negative backbone, especially again, if you have those folks with more disease burden, visceral disease, where you want to get that bigger punch up front. I think that's another potential role there.

But one other thing is to talk about logistics. These kind of regimens are very different because of how the immunotherapy is dosed. So when we use atezolizumab with nab-paclitaxel, that aligns very nicely with a 28-day cycle. Atezolizumab on day 1 and 15, nab-paclitaxel on day 1, 8, and 15. An off day at 22 that flows really nicely. Pembrolizumab, when you combine it with carbo and gemcitabine, that aligns really nicely with the 21-day cycle. Again, pembrolizumab on day 1, carbo, gem, day 1 and 8 and off day of 15.

The regimen that gets a little funky, for lack of a better word, is when you try to combine pembrolizumab with the taxane, because the taxanes kind of line up on a 28-day cycle, days 1, 8, and 15. And pembrolizumab is a 21-day cycle. So that could become a little bit cumbersome to navigate those waters and get those doses the right days. So you can just, from a logistical perspective, I think there's some differences there. And the challenge really is, how do we kind of get this nice balance of finding the treatment regimen that's compatible with the patient's lifestyle, the monitoring frequency, and just your clinical operations to make sure all those things align?

And we do want to have some flexibility. I think that's one of the great gifts in modern oncology, is we have all these good choices, but both are really important. You also want to have some consistency. So anyway, that's a really long-winded answer to side effects. I don't think there's much difference, in terms of side effects.

RUTH O'REGAN: I think your point is very important. Because this is all about the patient, of course. Because we've got metastatic triple negative breast cancer. So I think making it as painless as possible for them to come in, as far as their scheduling, I think, obviously, is very important.

Now, I think one of the issues with the immunotherapy is that I don't think we got great biomarkers. So we use PD-L1, but really, it's imperfect. And as we kind of alluded to earlier in the IMPASSION study, they used PD-L1 on the immune cells as a marker, and about 40% of the cancers in that study were determined to be positive. And that's where the benefit was seen.

In contrast, in the KEYNOTE study, they used what I think a lot of, outside the breast cancer world, is being used a lot, is this CPS, or Combined Positive Score, that basically looks at the PD-L1 positive tumor cells and immune cells and basically looks at them compared to the overall number of tumor cells. So at this point, we're kind of in a situation where we have to kind of check for both.

The interesting thing that's been shown is that there's not complete overlap. It's only about 75%. So it is possible that you could have a cancer that was PD-L1 positive by one of the assays, but not by the other. And I guess that might help us decide which agent to use, although I've never seen that myself in my practice. But I don't know what your experience with that is. It would be nice to have a better biomarker, I think.

JACOB KETTLE: Yeah, I'm glad you brought that up. Because I would be in the same boat. I haven't seen a case, but obviously it's possible to have some discordance. And we're looking at PD-L1 expression, whether you're looking at the tumor, or you're looking at expression in a combined positive score, regardless of the assay, it's on a scale. It's not a yes or no question. And little, subtle differences can be the make or break between determining whether someone's PD-L1 positive.

I've heard-- and I don't want to comment too much-- but there could be discordance whether you're testing archived tissue, whether you're testing metastatic tissue, maybe some differences between what site the metastatic disease was found in. Did you find it in the liver? Did you do the biopsy from the lymph node? Again, that all speaks, it goes back to the imperfection of PD-L1 as a biomarker. It's just kind of this dynamically unstable marker that's not as predictable and not as viable as some of the other biomarkers we use. And we want to take advantage of it as much as we can, and find as many unique treatment options for patients, but also don't want to leave-- we don't want to leave anything on the table.

RUTH O'REGAN: And I think the other interesting thing that we'll talk about later is that PD-L1 doesn't appear to be a biomarker at all in the earlier stage setting, which is, I think, very interesting. I think one of the things that's worth mentioning is that, of course, some patients do incredibly well with immunotherapy and have very, very prolonged responses. So trying to work out who those patients are, I think, would be just incredibly valuable. I have a couple of patients that actually came off the immunotherapies because of immune toxicity, but have remained, really, in remission for years after that, even though they actually weren't even receiving the drug. So it's really fascinating.

I think the other thing, though, is unfortunately, the majority of patients do not have cancers that are PD-L1 positive. And I guess the question is, what would we do for those patients? And the only really standard is chemotherapy. And I guess I'd be interested in your thoughts on, is there a preference first-line chemotherapy that would be used in your practice, or what are your thoughts on that?

JACOB KETTLE: I'd more defer to you on answering that. As far as our practice, you kind of have the whole mix of what you can pick from. You've got taxanes. You've got anthracyclines. You've got gemcitabines. We've got capecitabines of the world. Eribulin is a fantastic drug. Again, a lot of that goes back to what's best for the patient. And I think that is, again, the miracle. It's a challenge, because we all of a sudden have all these options, but it's the great blessing in practicing in oncology today, is there is this wealth of options, and we have the potential to really guide therapy to what's preferential to the patient.

RUTH O'REGAN: Yeah, I completely agree with that. And my thought always has been-- and I think this is very much in keeping with the NCCN guidelines-- is that there isn't a huge difference, in terms of efficacy. So I actually quite often use capecitabine in these patients, even though there was some data at one point saying that maybe capecitabine wasn't as effective in ER-negative breast cancer. I think we know that's not true in actual fact. So I think that's a great option.

If they haven't had a taxane, either paclitaxel or nab-paclitaxel is a good option. And then I think if somebody's got a large burden of disease, using a doublet like gemcitabine and carboplatin is totally reasonable, as well. Obviously, thinking about clinical trials, and particularly once you get past the first line setting for these patients is very important.

And I think one of the complexities about triple-negative breast cancer is the fact that there's at least four different subtypes that probably do require slightly different approaches. But at this point, that's not really standard of care. We kind of just manage them all the same way. But I think that's what's kind of on the horizon, as far as selecting at the best option for patients.

I think one very interesting subset is the subset that expresses androgen receptor, and which I think initially, we were super excited about. And I still think it's very interesting, but so far the data looking at antiandrogens in these cancers has not been that impressive, although there are some patients that benefit.

JACOB KETTLE: Well, I do think, too, the immunotherapy story, we kind of got talking about biomarkers. Even if you're not PD-L1 positive, even if the tumor doesn't express PD-L1, that's not necessarily the end of the role of immunotherapy in breast cancer. KEYNOTE 119 showed that pembrolizumab monotherapy later on didn't work, but we still need to be assessing for tumor mutation burden, microsatellite instability or mismatch repair. Those are other avenues by which we do have some good data to support that there is a role for immunotherapy in breast cancer, these triple-negative breast cancer patients.

Like you said, only about 40% are going to be PD-L1 positive. So that leaves 60%, more than half the pie, that are going to not have a route for immunotherapy. So I do think it's important that we always explore tumor mutation burden and microsatellite instability. Because again-- and you've alluded to this-- the great promise of immunotherapy is this potential for really long, sustained responses. And until we have really good predictive tools to find exactly what patients are going to be that, I think we should be striving to at least offer that glimmer of hope, that potential opportunity to as many patients as we can. But I think it's another important part of breast cancer is that, again, immunotherapy doesn't start with PD-L1. That's just a sliver of the useful biomarkers here.

RUTH O'REGAN: I completely agree with that. I think for our patients, it's important to consider sending tumor genomics, for sure, for exactly the reason that you said. I'm obviously also doing genetic testing to see if they've got a BRCA1 or BRCA2 mutation, or indeed a PALB2 mutation. Now there's some data suggesting that PARP inhibitors might actually be effective with those germline mutations as well. So I think definitely, sending that off makes sense.

Unfortunately, as we know, in triple negative breast cancer, we don't very often see actionable mutations. We see them, I think, more commonly in ER-positive breast cancers. But certainly we're ascending, I would think.

JACOB KETTLE: Excellent. I think that was a great discussion. Let's shift gears and do a second case and talk a little bit about this emergence of immunotherapy in the upfront setting, in the neoadjuvant setting. We'll talk about that a little bit, and then what are some additional later-line options?

So we'll do our second case. This will be a 45-year-old female presents with relapsed/refractory triple-negative breast cancer, metastatic disease in the bones and liver. Her initial therapy consisted of neoadjuvant chemotherapy combined with immunotherapy. And that would be what was discussed in the KEYNOTE 522 trial. So before talking about choice of therapy for this patient, let's dive in a little bit about and talk about KEYNOTE 522. What are your thoughts of up-front immunotherapy in triple-negative disease?

RUTH O'REGAN: So KEYNOTE 522 took patients with earlier stage triple-negative breast cancer and basically randomized into the standard anthracycline taxane-based chemotherapy with or without pembrolizumab, and actually showed pretty impressive pathologic complete response rate in the immunotherapy arm. It's about 65%, and it was quite a bit higher than the control arm, where it was about 50% or so. And they actually have some data as well looking at event-free survival showing a benefit for the addition of pembrolizumab.

It's not FDA approved yet. And obviously, you have to take into account toxicity, which I'd certainly like to get your thoughts on. But I think we know that pathologic complete response is very important, a prognostic factor in triple-negative breast cancer, at least in most subtypes. So getting a pathologic complete response rate that high, I think, is very important. And I have to say, I tend to reserve this approach for patients who have clinically node-positive breast cancers or locally-advanced breast cancers. Because-- I should have said this earlier-- because in KEYNOTE 522, all the patients got carboplatin as well. And that's one of the problems, I think, because it's hard to add carboplatin with paclitaxel.

Just to mention that we also, at ASCO, just heard a follow-up of the GeparNuevo study that looked at durvalumab with a slight, somewhat similar anthracycline taxane-based regimen. They saw a higher pathologic complete response rate in the durvalumab arm. But actually, we're showing data, now, on longer-term outcomes, and again showing a benefit for the immunotherapy.

So it is interesting. I think you're always weighing up longer-term toxicities with the efficacy seen here. But I think with a pathologic complete response rate that high, I think in a patient who has more higher-stage triple-negative breast cancer, I would consider adding pembrolizumab for that patient in this setting. But I guess I'd like to hear your thoughts on weighing up toxicity. It's a little bit different in this scenario versus the metastatic setting, I think.

JACOB KETTLE: I completely agree with you. That PCR rate is supremely promising. Obviously, we need time for the data to mature. But I think there's definitely a subset of patients that I think we're going to find this, hopefully, to be very beneficial. And triple-negative disease is problematic, so any additional tool is useful. But again, it's a very intense chemotherapy backbone.

Four cycles of carbo-paclitaxel, and then four cycles of an anthracycline and cyclophosphamide base with pembrolizumab throughout the whole cycle, that's not going to be something that all patients are going to be able to tolerate. So again, as the data matures, my hope is that we can really narrow in on the subset of patients that this is most likely to really deliver a lot of benefit to. And I've probably said this three or four times already, but I really didn't feel like this is the great promise. But again, the great challenge of oncology practice today is, we're going to end up with four or five different great options for up-front therapy in neoadjuvant or adjuvant treatment, and it's really going to be up to us to really tailor therapy and find this ideal balance of risk and benefit ratio to meet patients' needs, and what they value.

And so some patients may have, they want to avoid the severe toxicities at all costs. And that's maybe how we pursue, is to get the best benefit with that in mind. And then you'll have patients that will say, I'll go through anything. I want my risk of relapse be absolutely as low as possible, and I'll take all the chemo you're willing to throw. And trying to figure out how to walk that line, I think, is our challenge.

So with that in mind, remember back to our case, our second case here, we're going to assume that this patient's relapsed after immunotherapy in the front line. And I think that is another thing we'll explore, as the years go by, is learning, what do we do when we start seeing these therapies early in treatment, whether it's breast cancer or other tumor types? But what would your approach be, if they did relapse after initial immunotherapy?

RUTH O'REGAN: Well, I think this is a data-free area. And I should have said when I was talking about the earlier phase studies that PD-L1 is not a biomarker in that scenario. So if we assume this patient has PD-L1 positive cancer, I guess it would really depend on how long it was since she got the neoadjuvant chemotherapy. But I could envision if she was a couple of years out, I might think about rechallenging her, particularly with a different PD-L1 or checkpoint inhibitor. But I think that's not the likely scenario, because most of these patients will have pretty high-stage disease when they present, and they probably relapse pretty quickly.

So I guess we're kind of back to the case we talked about earlier, where you're really looking at the different chemotherapy options. So I think there is a potential for rechallenging with immunotherapy. I don't know-- and you may know this-- if there's any data outside of breast cancer, like lung cancer, where this has been done, for example. I'm just not aware of that data.

JACOB KETTLE: Yeah. I'm not aware of any really solid evidence. I think you can find anecdotal reports or some retrospective studies that do suggest maybe it's beneficial. And I think, especially like you mentioned, for someone with a nice long response, good, strong tolerability, all those kind of things, may be worth considering.

But again, the challenge with immunotherapy, it doesn't work quickly. So you always have that component. And like you said, these are aggressive, rapid relapses. That may not be something you can lean on too heavily. So I think it all speaks back to, we're very confident in pathological complete response as a very strong surrogate marker for long-term benefit. But again, we're using it in a slightly new space.

And until that data is very mature, and we have the overall survival data, what we don't know is, how does this all translate to the whole picture for the patient? If we burn out of immunotherapy up front, I don't know. Does that mean it's not useful, and we've lost lines of therapy in the relapse/refractory setting? I don't know. Those are some of the big questions we have.

RUTH O'REGAN: And I think it also speaks to what you said earlier, that the whole immuno milieu of the cancer may change, depending on what setting you're looking at. So there could be very good rationale for rechallenging with immunotherapy. But again, I think this is an area where we really would need some data for sure.

JACOB KETTLE: Yeah, absolutely. Very tricky. So let's play out the scenario just a little bit more. Let's say we started carboplatin and gemcitabine, for instance, in this patient. She got about nine months of therapy, and then progressed again. What other, maybe, newer options are lingering out there for sort of later-line triple-negative metastatic disease?

RUTH O'REGAN: So unfortunately, of course, that's typically what you see. They usually, patients usuallt experience disease progression within six to nine months. And so obviously, alternative chemo options would be on the table, a taxane, if she hasn't had one recently, capecitabine, if she hasn't had that. However, I think for a patient like this, I would strongly consider sacituzumab, which is a relatively new antibody drug conjugate that targets Trop-2.

The data from the ASCENT study, which looked at patients with triple-negative breast cancer who'd had at least two prior lines of treatment were randomized to sacituzumab or to physician's choice of chemotherapy, and the data was pretty striking. And the progression-free survival, it was less than two months in the control arm, versus six months in the sacituzumab arm. But the overall survival was doubled from six months to 12 months by using sacituzumab. So that's pretty impressive in this scenario.

And it appears that, although most triple-negative breast cancers do express Trop-2, there doesn't appear to be a definitive correlation between Trop-2 expression and benefit from this drug. So there appears to be some kind of a bystander effect from this antibody drug conjugate. I think it's a really interesting drug, and maybe you can talk a little bit about the tolerability of it.

JACOB KETTLE: Yeah. So again, like you said, it's a Trop-2 target. That's the antibody component. And Trop-2 is a transmembrane glycoprotein. It's upregulated in a lot of tumor types. So this is not something that you necessarily would do additional testing for. It's not unique to breast cancer. And sacituzumab-govitecan has an approval now in bladder cancer as well. So I think we're going to start seeing more emergence and utilization of Trop-2.

And then like you said, it's kind of an enriching biomarker. You might see a slightly higher response rate for those overexpressors. But again, low expressors still respond. But I think when it comes to the side effect profile-wise, it was all driven by the chemo payload. And that's Govitecan, or SN-38. This is the active metabolite of irinotecan.

And so a couple of things make this really exciting to utilize in breast cancer. One is, we're all probably fairly familiar with managing the common side effects of irinotecan, predominantly neutropenia and diarrhea. So we don't have to relearn or come up with a new kind of management profile, side effect-wise. But I think part of why we see such a robust response is this is a mechanism of action. Govitecan, it's a topoisomerase inhibitor that almost, I'd say, the vast, vast majority of breast cancer patients have not been exposed to that mechanism at any point in their treatment journey. So you take advantage of that new option.

And I think, all things considered, this is why we've seen this kind of recent-- it's not brand new technology-- but we've seen this recent emergence of a lot of antibody-derived conjugates. Because it really does allow you to take advantage of antineoplastic agents that may otherwise be too toxic, but we find a way to deliver it in a very sophisticated, precise manner. And by doing so, again, we're able to take advantage of chemotherapeutic agents that otherwise would be on the shelf. But we can deliver it in a very precise way. And so that's a really exciting piece of the promise for this drug. And again, just to ask you, do you any anecdotal experience or insights with the drug?

RUTH O'REGAN: Yeah. I've used it a little bit. I actually started a patient on it today. But overall, I think it's well tolerated. It's unfortunate it causes alopecia, obviously. But I think most patients with the results of the ASCENT trial, they're OK with that, I think. And the tolerability seems to be very reasonable.

JACOB KETTLE: I mean, a six-month OS improvement at this stage of the game is pretty clinically meaningful.

RUTH O'REGAN: I don't think we've really seen that before, actually, and so it definitely is. I agree with you completely. I think antibody drug conjugates are really the way forward, because they're so much more tailored to the cancer than regular chemotherapy. The other drug, I think, that will be interesting to see in triple-negative breast cancer is trastuzumab-deruxtecan, which obviously is approved for HER2-positive breast cancer, but again, also has a bystander effect. And there's some data from one of the DESTINY studies basically showing activity in cancers that have low expression of HER2. So I think that's going to be very exciting.

So I think there's a lot of exciting things happening in triple-negative breast cancer. There's a lot that I think we have to learn. I mean, biomarkers are going to be very important, particularly for immunotherapy. Do you have any other thoughts on other agents you're excited about in this setting?

JACOB KETTLE: I'm always fascinated by precision oncology. And like you said, I haven't really found a lot of great targets for triple-negative breast cancer. It's tended to hold out its negativity. It doesn't have-- not as if we're finding a bunch of things. So I hold out hope, just that we come across a good marker, something else targetable for these folks. I share with you the enthusiasm about trastuzumab-deruxtecan, and how it might play a role in HER2 low. Interestingly enough, that's also a topoisomerase inhibitor type, very similar backbone, chemo-wise.

But also just watching the IO story continue to play out, I think it was interesting just that breast cancer, really, especially the most common cancers, was really one of the last disease states to really see indications for immunotherapy. So just excited to see that story continue to unfold. And hopeful, always remain hopeful that we continue to push the needle forward, bit by bit, day by day.

RUTH O'REGAN: I completely agree, and that was a great discussion. So that's all we have for today. I want to thank you, Dr. Kettle, for a great conversation. And thank you so much to all our listeners tuning into this episode of the ASCO Education Podcast.

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Oncology, Etc. is a monthly ASCO Education podcast exploring topics in oncology through interviews with emerging thought leaders, physicians, and innovators.

In this episode, hosts Dr. Patrick Loehrer (Indiana University), Dr. Jamie Von Roenn (ASCO), and Dr. David Johnson (University of Texas) discuss the importance and impact that friendship has made on their careers.

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Air Date: 8/3/2021

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

PATRICK LOEHRER: Hi, I'm Pat Loehrer. I was born in Chicago, moved to Indianapolis when I was in high school, went to Purdue University, went to Rush Medical College, came here to Indiana University. And I've been on faculty ever since. I'm now a distinguished professor and the former head of our Cancer Center and Director of our Centers for Global Oncology.

JAMIE VON ROENN: So hi, I'm Jamie Von Roenn. I'm a medical oncologist and trained at Rush with Pat and subsequently stayed in Chicago at Northwestern and came here to ASCO as the VP of Education about eight years ago.

DAVID JOHNSON: Hi, I'm Dave Johnson. And I'm in Dallas, Texas. I'm a medical oncologist originally from Georgia, spent a large part of my career on the East Coast and in Tennessee before relocating to Dallas to become Chairman of Medicine in 2010. I stepped down from that position last year and now serve as an elder statesman [INAUDIBLE].

So we are excited to be here today for a new endeavor sponsored by ASCO, a podcast entitled Oncology, et cetera and with a heavy emphasis on the et cetera. We are here to talk with thought leaders, physicians, authors, innovators in oncology and beyond. To be honest with you, we have a lot of interests.

And so I'm going to turn to Jamie and ask Jamie, why are we doing this? Jamie is the instigator behind this. So Jamie, why are we doing this podcast?

JAMIE VON ROENN: So I think the primary reason we did this is to remind people why they chose oncology, that all three of us are people who are super excited about this profession, about what we've learned and what we've given and how we've shared it with each other and with the profession in general, that it's the science. It's the relationships. It's change. And it's incredibly fulfilling on all of those levels.

DAVID JOHNSON: Yeah, Pat, what are your thoughts?

PATRICK LOEHRER: When Jamie asked us to do this, this was something that we jump at. I love Jamie dearly. Dave and I both share this mutual admiration society. I deeply admire Jamie. And, to do something with Dave who is one of my closest professional friends, this was just a great opportunity.

We thought in our conversations, though, as we talked with other people, that it would be good just to talk among ourselves and particularly about the notion of friendship and what it means to each of us personally with the idea that maybe those listening might reflect on that in their own lives.

DAVID JOHNSON: Yeah, so you mentioned-- you made a distinction there, Pat. I'd like to know what that distinction represents. You said you had your personal friendships and your professional friendships. How do those differ?

PATRICK LOEHRER: Well, you know, I'm not sure how it is for you, but my wife is outside of medicine. I've known her. I had my first date with her 50 years ago. And I have friends that I really don't like to talk about business with. I just talk about other things, our kids, family, whatever.

Our friends in medicine are a little different. We have deeper conversations about our work. And there are certain aspects of our work that I think touch us personally. We have patients that we've become close to that are rough. And, many times, I don't share those interactions with my friends at home because it's just not important to them. So I treasure especially you guys, I treasure deeply. We've shared a lot over the years.

JAMIE VON ROENN: So it seems to me that friendships in general are built on shared experiences and that the experiences in medicine are so different from anything else. And, if you don't have friends in your profession, you may not actually have the opportunity to share and sort of have a sounding board for how difficult things are sometimes in spite of how inspiring it is.

DAVID JOHNSON: Yeah, I think I like your distinction. Both of you pointed out the shared experience. The world of an oncologist, viewed from the outside, may appear to be a rather morbid specialty, but, in fact, it's one that I personally find incredibly rewarding. But there are those moments that are challenging and difficult-- patient encounters, professional setbacks, et cetera. And it's nice to have someone within the profession itself that can relate to those experiences, especially failure. I know, Pat, you've had lots of failures.

[LAUGHTER]

JAMIE VON ROENN: I think we all have.

PATRICK LOEHRER: Thank you. Just as a background, there have been, in this group, five runs for ASCO presidency. And only one of them has been successful. So yeah, we know failure, Dave.

JAMIE VON ROENN: But I think it's important because no one is successful all the time. And it's your friends who actually get you through that and let you see, OK, yeah, I'm still OK.

And I think it's the other side of that too. Everyone who's honest has suffered from the imposter syndrome. And it's your friends you can openly share that with. And it helps you go the next step when you're struggling.

DAVID JOHNSON: So you mentioned that the two of you met during your residency training. What prompted that friendship then? And how has it been sustained over the last many years? I won't say the number of years, but a lot of years.

JAMIE VON ROENN: So we actually met when I was a medical student, and Pat was my intern who I worked with. And then, when I was an intern, Pat was the resident.

DAVID JOHNSON: So that accounts for all your problems in the medical field?

JAMIE VON ROENN: It accounts for how well trained I am.

DAVID JOHNSON: I see.

JAMIE VON ROENN: But I think it was the sense of joy in the profession that probably connected us and a love of people. I don't know. Pat, what would you say?

PATRICK LOEHRER: Well, it was a special time back then in medicine. Our particular hospital was a resident-run hospital. I think we acted first and then asked permission from the attendings later on. And it was really very special. There's a lot of people from Rush who have gone into oncology in many different areas. And so it was very special.

Jamie I knew. We really did not keep in touch until she gave a plenary paper at ASCO. And I remember writing her a note. And I was so proud to see her up there. And I wrote that in a note. And we started, basically, communicating and getting together regularly. And so, each year at ASCO, as you know, we get together, the three of us, collectively or individually, and have a dinner. It's really the highlight of the meetings for me.

DAVID JOHNSON: Yeah, I mean, I had the good fortune of Pat and I coming together, I think, shortly after I completed my fellowship. And Pat and I were both starting our academic careers, he at IU and I at Vanderbilt at the time. And we interacted through one of the major NCI cooperative groups that, unfortunately, no longer exists. It may have been due to our work, Pat, that caused the Southeast group to divide.

But it was through Pat that I met Jamie. And so that's been really one of the most rewarding relationships that I've had professionally over the last, now more than 40 years. I mean, it's been a long time really.

PATRICK LOEHRER: And we were on the ABIM together, the three of us, which was a riot. It's another one that seems like a thankless position, but we realized how hard it is to write very good questions. And we would spend a lot of time together doing this. I learned tremendously from the two of you and the others around the ABIM.

JAMIE VON ROENN: Yeah, that was a remarkable experience for us because it's a small group of people putting their ego outside the door and working together.

DAVID JOHNSON: And the challenge of maintaining one's knowledge base, I mean, honestly, I hadn't thought that much about it until I was invited to join the ABIM. And thank you, Pat, for making that possible. I consider it one of the highlights of my professional career is being a part of that. And I realize how controversial the work that ABIM is doing today, but, still, I think it was a wonderful experience.

JAMIE VON ROENN: We've been pretty lucky to share multiple professional activities. I mean, when you were president, Dave, I was on the board. We shared ABIM. We shared some ECOG work way back. It's been a lovely crossing of paths beyond friendship .

DAVID JOHNSON: Yeah, I mean, I think one piece of advice that I give to residents, and especially those who are interested in heme-onc fellowship, is find a friend. It's really important that you do so. I was fortunate to have the two of you and some other friends during the course of my career. And I must say, turning to a friend for advice, for assistance, for mentorship-- I can't remember who said it first. Having a friendtor is really, really important in the course of one's professional development.

JAMIE VON ROENN: It's an important message because it takes time. When people are in training, they often think they don't have time, but this is a value on every level. It's more than worth the time.

PATRICK LOEHRER: I just want to jump on that friendtor. We all have had people that we work closely with. In Indiana, it's been Larry Einhorn who was a role model for me when I was a medical student and then became a mentor when I was a fellow at a junior faculty. And he is, again, one of my closest friends. And he is one that gives me advice, but also just listens.

And, similarly, he'll come in and ask me advice, which was mind boggling that someone of his stature would lean on us. But I was trying-- I was just going to put a caveat or a corollary to your statement about finding a friend. Dave, what I tell people, I think it's more important to be a friend than to have them.

I think, if you get into the habit of helping other people and being a friend, you'll collect people close to you down the road, but, boy, it's not a one-way street. It really has to be the best friendships in which you give and you also happen to receive, but it's really a nurturing process. It just doesn't happen by chance. It happens because the people make an effort in it.

JAMIE VON ROENN: Absolutely.

DAVID JOHNSON: So what do you look for in establishing those friendships, Pat? What attracts you to an individual to even consider establishing a friendship?

PATRICK LOEHRER: Well, I like to have friends who are dumber and uglier than I am. And that's why I really migrated to you. I mean, I think, when I looked around the room, I said, this guy could be my friend.

DAVID JOHNSON: It's amazing. I saw myself in the mirror when I saw you.

JAMIE VON ROENN: So I'm going to take that more seriously and say I think what we have done with each other is looked for people with values that connect and that, in the end, whatever those values are, that's what makes the friendship last.

PATRICK LOEHRER: Well, it's interesting. As we talk about, in academics, one might think that you become friends with people in your own disciplines, but Jamie was a age researcher in palliative care. Dave, you were a thoracic oncologist. And I was a GI. And the loneliest friendship would be with thymoma people.

But none of us really merged together because of our own professional disciplines. It really was something else. I think there was a higher power that pulled us together.

DAVID JOHNSON: Oh, I think Jamie touched on it. I mean, it's the values that we share, I think. And I'll go back to something we talked about earlier, which is our shared love of the profession itself.

I think I was 10 years old when I first seriously thought about being a physician. You may argue that a 10-year-old can't think seriously about anything, but, throughout my youth, all the way through college and, ultimately, medical school, medicine was my goal. And I've never regretted making that decision.

I know there's a lot of unhappiness in the medical profession in this day and age and a lot of talk about burnout. One recent study actually even suggested that over half of all physicians would not recommend medicine to their children as a profession. I find that disheartening. I'd be delighted if my child were to choose such a profession. She didn't, but I would have been delighted had she done so. And I know, Pat, you have children who have pursued medicine as a career.

PATRICK LOEHRER: Yeah, I was-- actually, at my son's graduation, I was up in the balcony away from everyone else taking photos, but I did find myself with a tear coming down my eye watching him just because it was an affirmation that my life was something that didn't steer him away from medicine. I think he did find, in my life, the joy that you can find in this profession.

I want to change this a little bit to you guys, Dave, because you talked about the profession. And, several years ago, well, you both have had some really tough episodes in your life, but, Dave, you came down with lymphoma many years ago. And I do remember an ASCO presentation that I think Jamie helped put together in which there were several of you. I think Nick Vogelzang and Sandra Horning were up there. And you shared your experience of having cancer and shared some of the stories, I think, of friendship.

But I do remember the phrase that you used at the end of the talk about how you had a deeper appreciation about the majesty of our profession. That's always touched me, but can you reflect a little bit about your illness and having lymphoma as a cancer doctor and what you learned in terms of this topic of friendship?

DAVID JOHNSON: Well, we, as oncologists, think we know what it's like to have a serious illness. And I certainly was no different than most oncologists. But, when I myself was diagnosed with a malignancy, I must say, I had many of the emotions that I've witnessed in my patients.

And, also, suddenly, my brain went completely blank. I couldn't think about what it was that needed to be done. And I, like most patients, began searching for the perfect answer. How would I deal with this?

But I was also curious because, a few years prior to my own diagnosis, another faculty member at the institution where I was at the time had been diagnosed with ALS. And he wrote a very personal and moving piece that was published in The New England Journal about his experiences at that institution and how he was treated by his fellow physicians.

And, actually, what he had to say was not all that complimentary in some instances. And I wondered myself how I would be dealt with by my fellow physicians. And I must say, my experience was virtually the polar opposite. I was surprised, honestly, at how heartfelt the good wishes were, the way that my colleagues went out of their way to try to make sure that I was successfully treated, was dealt with appropriately, even colleagues at my institution that I had not known that well finding excuses and reasons to drop by the office that seemed manufactured, quite frankly, but were clearly, again, intended to lift my spirits and make me feel positive about my future.

It really made me realize just what a special profession we're in and then, to have friends that I could turn to, such as you and others, who really did a lot to lift my spirits. So, when you see that, you can't help but be really moved by the men and women who come into this profession and particularly those who choose oncologist as a specialty.

PATRICK LOEHRER: I had a colleague who succumbed to glioblastoma. And he was-- when he was first diagnosed, he told me there were three kinds of friends, he realized. There were the long-lasting friends that he's always had.

There were people who he thought were friends who kind of just faded away, mainly because they didn't know what to say. And then the third group were these unexpected friends, people that he didn't really know that very well, but came into his life and really made a difference. It was very insightful.

DAVID JOHNSON: Yeah, I mean, that's exactly the experience I had as well. And the group that unexpected was perhaps the most surprising to me, but really I came to appreciate greatly.

PATRICK LOEHRER: Many years ago, when we were doing the board questions, Jamie was not able to come because her husband Kelvin had been diagnosed and then, shortly thereafter, passed away from cancer. I knew him when I was a resident. He was a feared neurosurgeon. He made Ben Casey look like Dr. [INAUDIBLE]

He was an incredibly intense, wonderful man, but I've not talked much deeply about that. And, with some reluctance, Jamie, I don't know if you want to share a little bit about how you felt as a palliative care doctor, and then here's your husband who's dying of cancer.

JAMIE VON ROENN: Sure. And it kind of echoes what both of you have said. Here I was, a palliative care doc. And I thought I understood what death and dying was about. And, after Kelvin died, I was blown away. And I recognized, I said the right things, but I never really understood them. And it changed the way I talked to patients forever.

And I too had the same experience of friends who are new, old, and otherwise, those that disappeared because they were too uncomfortable. And I was shocked that there were partners, oncologists, who could never ever say anything to me because they were too uncomfortable talking about death. And here it was something they were supposed to be trained to deal with.

And, in fact, I remember, many times, Pat, you calling and checking in on me. And I remember in particular one day when I was down, and you said, wow, you are in a dark hole. And I was. And it took a long time, but it's friends that get you through and the ability to talk about what nobody wants to hear that helps you recover ultimately and move on. And those are life friends, but there's something different about people like the two of you who understand these experiences from a different perspective.

DAVID JOHNSON: Yeah, I mean, I think these shared experiences, they're not shared in the sense that we experienced it personally, but the fact that we were able to relate to one another and share those very personal moments only fortifies and solidifies an existing friendship. And there are a lot of people I would not have that discussion with, but there are a few. And you are certainly among those two that I would.

PATRICK LOEHRER: Well, I mean, you guys mean a lot. And I know-- I'm trying to think of the time. Back when I was thinking about becoming a heme-onc division chief. I gave Dave a call. Dave was head of heme-onc at Vanderbilt, I think, for 68 years or something. I can't remember. You were there for a long time.

And I called him up. And I thought for sure there would be this, yeah, Pat, you'd be great. You'd be a wonderful division chief, but there was just this silence. It was like, I don't know, about 90 seconds of just pure silence. And then you said, yeah, it's mostly a good job. Then you reflected a little bit about this. And, in terms of this rejection, I think the other thing you taught me is it's OK not to be the first choice. But I can't remember. What choice were you for the division chief?

DAVID JOHNSON: 11.

PATRICK LOEHRER: 11. Yeah, I love that. I love that.

DAVID JOHNSON: That's true. I mean, they interviewed 10 people before I was offered the job. So I knew I was in the top of all candidates.

PATRICK LOEHRER: Top hundred, huh? This is like Rock and Roll Hall of Fame [INAUDIBLE].

DAVID JOHNSON: They ran out of candidates.

PATRICK LOEHRER: Well, you know, that part, I've got to be honest with you. The stories with you guys have helped me out quite a bit because junior people would look up and say, oh, look at these guys. Aren't they successful? But they don't realize that we have stumbled and failed over the years in many things. And the best thing you can do is just laugh about it when you try.

But, going back to the notion of friendship, there is no greater joy than I have is to see you guys, who are my friends, succeed. And a definition, I think, of a friend, at least a minor definition, is, when someone gets an award, that you find greater joy in them getting the award than you would if you got it yourself. If you find yourself kind of jealous and wondering, well, I wish I had that, probably, it wasn't your friend then. But I've gotten so much joy in watching you guys succeed.

JAMIE VON ROENN: So I think there's a corollary to being a good mentor, which is, when your mentees surpass you, then you were successful. And it's the same with friendship.

PATRICK LOEHRER: I'm one of the most successful people in the world then.

DAVID JOHNSON: I was getting ready to say, I think we've all succeeded wildly then.

[LAUGHTER]

JAMIE VON ROENN: But that is the goal. I mean, what's the point of being able to help people if you don't make them the next set of stars?

DAVID JOHNSON: We've been lucky to have a lot of really terrific men and women who we've been able to work with over the years and call them mentees, but, in reality, we've been their mentees. They've been the ones that have taught us so much. I'm very proud of all of them.

JAMIE VON ROENN: Yeah, I think that is something to be proud of. And, when I look back, it's those things that make me most excited about what I've accomplished.

PATRICK LOEHRER: Well, I think, every good relationship, you really get more out of it than you get into it. Even as we have our heart to hearts with our patients and having end of life discussions, I usually get so much out of that in a reflection of their own personal love for each other and their family and what they treasure in life. But, again, with you guys, unabashedly, I'll say this in public. I love you deeply. And I appreciate your friends.

CS Lewis had a book called The Four Loves in which the most unnatural of the four loves was friendship, but it's what he actually thought was probably the most important one because it's so unique. And it's not expected, but you guys, I think, are an important part of my life. And I thank you for that.

JAMIE VON ROENN: I love you both and feel the same. It's the luckiest thing there is.

DAVID JOHNSON: Yeah, absolutely, absolutely. Thank you so much for that. Well, I think our time is about up for today. I want to thank all the listeners. I'm sure there's tens of thousands listening to this. Well, I just called Pat's friends and told them listen.

So we plan to do this monthly. We already have a scheduled guest for our next podcast. It'll be Dr. Otis Brawley who I think many of you know by reputation, one of the leading luminaries in oncology in the United States. He's now at Johns Hopkins.

I think it'll be a really enlightening and fun conversation to hear what Otis has to say about the current state of oncology in this country. So, with that, we'll sign off until next month. Thanks, everybody.

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SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning center at elearning.asco.org.

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The incidence of colorectal cancer among people under 50 is rising. In this ASCO Education podcast episode, medical oncologist Nilofer Azad (Johns Hopkins Medicine) and epidemiologist Caitlin Murphy (UT Southwestern Medical Center) discuss risk factors, screening, and treatment.

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Air Date: 7/28/2021

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

NILO AZAD: Welcome to the ASCO learning podcast episode focusing on early-onset colorectal cancer. My name is Dr. Nilo Azad, and I'm a medical oncologist and Associate Professor of Oncology at Johns Hopkins Medicine. I'm joined today by Caitlin Murphy, an Assistant Professor of Epidemiology at the University of Texas Southwestern Medical Center. We wanted to start today with a patient case, just to give a little bit of context about the kinds of patients that we are dealing with.

A year ago, a patient presented to my clinic who was 32 years old. She was having significant symptoms of rectal obstruction. She was having trouble going to the bathroom. Her bowel movements were difficult. She was having bloody stools, and she had gone to see a gastroenterologist who had done a colonoscopy, biopsied her tumor, and found that she had adenocarcinoma of the rectum.

Now, luckily, at that time, she didn't have any metastatic disease. But her tumor was quite large, 15 centimeters in size, and so we decided to move forward with doing chemotherapy in the neoadjuvant setting. She got aggressive chemotherapy with FOLFOX for three months. And when we did a scan, unfortunately, we found that the tumor had grown.

Now, she still didn't have any disease outside of the rectum but, during that time, we had gotten some molecular testing back which showed that the patient had mismatch repair deficiency or microsatellite insufficiency. So we decided to try something a little outside of the box at that time, where we started treatment with immunotherapy.

She had a dramatic response to immunotherapy. Her tumor shrank. And, six months later, she went to surgery and, though on scan it still looked like she had a large tumor, it turned out that that tumor was only scar and that she'd had a complete response.

She came back to see me, last week, in clinic. She looks fantastic, and she's moving forward with planning for a family with her husband. So, Dr. Murphy, can you tell us a little bit about the trends in early-onset colorectal cancer incidence in the US and globally?

CAITLIN MURPHY: Of course. I'll start, first, by talking about trends in early-onset colorectal cancer in the United States. Incidence rates began increasing here in the early 1990s and have nearly doubled over time, from about eight cases per 100,000 persons in the early 1990s to 16 per 100,000 persons in today. The largest increases have occurred in 40 to 49-year-olds. They account for about 80% of all cases.

And we've also noticed that incidence rates of rectal cancer versus rates of proximal colon or distal colon cancers have been the largest increases in incidence. We've also seen a similar increase in local and distant stage disease.

And, to me, one of the most compelling observations that we've made is that incidence rates have increased successively across generations, or about the year that you were born. There's a very clear and marked increase in incidence rates starting with persons born in and around 1960, or who we sometimes call Generation X. Epidemiologist like to call this a birth cohort effect because essentially we see incidence rates increasing across birth cohorts.

More recently, we've observed that incidence rates have started actually increasing in people in the early 50s, the 50 to 54 age group, and this really does not appear to be driven by early stage disease as we might expect with more screening in that age group. But perhaps the increase in this early 50s age group is driven by the same things happening in people under the age of 50.

Globally, we've seen a similar increase occurring in countries that have colorectal cancer screening and even in countries that don't have colorectal cancer screening. There was a recent analysis of 36 countries, and it found that incidence rates have increased in 19 of those 36 countries. Nine of those countries had stable or declining trends in incidence in older adults.

There really wasn't a clear pattern among those countries in terms of the degree of Westernization or income level that might explain those trends. And, importantly, that birth cohort effect that I mentioned as occurring in the United States, where we see increasing incidence rates starting with Generation X, has also been reported in many other countries, including Canada, Australia, and some East Asian countries.

NILO AZAD: And, Dr. Murphy, what is the current thinking regarding causes of this increased incidence of colorectal cancer that we're seeing in young people?

CAITLIN MURPHY: Generally, there are two schools of thought about what's going on here. The first thought is that this is the same disease that's happening in older adults, but it's just now occurring at a younger age. For example, we've seen a steady rise in factors that we know increase the risk of colorectal cancer in older adults, like obesity and diabetes. And, these factors, we also know are now increasingly occurring at a younger age.

But many of my clinical colleagues like you, Dr. Azad, tell me that most of the patients they diagnosed with early-onset colorectal cancer are otherwise fit and healthy and have no obvious risk factors like those. And so this second school of thought about what might be going on here is that this is really a different disease than what's happening in older adults, driven by as of yet unknown risk factors that have also increased in the population.

NILO AZAD: Yes, I definitely feel like that the cohort of patients that I see in my clinic-- and, of course, at a place like Johns Hopkins, we see a little bit more of a skewed cohort in terms of seeing more younger patients-- that most of them aren't people that I would traditionally look at and say that they've got a risk factor that explains the situation. What are the main risk factors for early-onset colorectal cancer?

CAITLIN MURPHY: There's still a lot of research to be done in understanding what the risk factors for this disease are. And I like to think of the risk factors that we know about as affecting early-onset colorectal cancer as falling into one of four sort of categories.

The first category is having a genetic predisposition, so either having a family history of colorectal cancer or even a family history of an advanced adenoma or having a hereditary syndrome like Lynch syndrome or polyposis. Together, these account for about 40% of all new cases and many of the cases that don't have a traditional phenotype or mutations associated with colorectal cancer. So, for example, many of the patients we see with Lynch syndrome don't necessarily have the typical phenotype that we've expected to be associated with Lynch syndrome over the past however many years.

The second category is what I like to call established risk factors. Or maybe another way to think about this is usual suspects, so already known causes of colorectal cancer in older adults. I mentioned these earlier, obesity, diabetes, but then there's also smoking, physical activity, and sedentary behavior.

Then the third category is what I call early life factors, and the importance of understanding early life factors is really driven by the fact that incidence rates have increased by generations. Remember that first cohort effect I was describing to you earlier. This birth cohort effect tells us that risk factors in very early periods of life or vulnerable periods of growth and development are important. It also tells us that we should rethink some of those usual suspects or established risk factors as occurring very early in life. For example, instead of just thinking about obesity, thinking instead about birth weight or childhood obesity as well as growth trajectories in infancy.

And then, finally, the fourth category is unknown risk factors. So the trends in incidence point to some clues, whether things in the population have increased over time or by generation, that might help us understand what's going on here. Some examples of those unknown risk factors might include environmental chemicals like flame retardants or endocrine disruptors, antimicrobials, or other infectious agents. And there really has been no research on these unknown risk factors but, again, people think that these might be related to early-onset colorectal cancer just because the trends in their prevalence have mirrored the trends in incidence.

NILO AZAD: So, Dr. Murphy, you've really laid out wonderfully both the risk factors that we're seeing in some of these younger patients and then just the changes in incidence and occurrence as well. So how has that affected screening guidelines, going forward, as well?

CAITLIN MURPHY: In 2018, the American Cancer Society recommended lowering the age to initiate average risk colorectal cancer screening from starting at age 50 to age 45. At the time, when this was done, all of the GI societies and the United States Preventive Services Task Force recommended still continuing at age 50. This recommendation from the American Cancer Society was a qualified recommendation, meaning that it's based on simulation modeling and not necessarily empirical evidence driven from randomized trials or other clinical studies.

More recently, just last fall, in 2020, the United States Preventive Services Task Force released a draft recommendation to do the exact same thing, so lowering the screening age for average risk people from 50 to 45. The idea of a draft recommendation simply means that they put the recommendation out there for public comment and then consider some of those comments before either revising that recommendation or making the recommendation official. Like the qualified recommendation, initiating average risk screening at age 45 has a grade B recommendation from the task force, meaning that they have fair compared to strong evidence to support that recommendation. And I expect that we'll be seeing a final one coming this spring or summer.

NILO AZAD: Is there anything unique about colorectal cancer in young patients biologically?

CAITLIN MURPHY: That's a good question and something we still don't know a lot about. I'll just give one example of that. We know from certain studies that early-onset colorectal cancer seems to be enriched for certain molecular subtypes like an immune subtype, although the research in this area is really limited by a small number of studies. And most of the studies have been conducted just as a single center and not at the population level.

NILO AZAD: And how do our patients that are younger do in terms of survival, compared to their older cohorts?

CAITLIN MURPHY: Most studies that have looked at this report no difference in survival between younger and older patients with colorectal cancer. We do know, however, that younger patients are more likely to be treated aggressively with surgery, multimodality chemotherapy, and/or radiation therapy. This really raises an important question. If younger patients have no survival advantage despite more aggressive treatment, this could mean that younger patients have tumors that are more aggressive or that they respond differently to treatment regimens that have been developed for older patients with colorectal cancer or risk disease are over treated.

With that in mind, I want to revisit our patient case, the 32-year-old woman with rectal cancer. Dr. Azad, what should be discussed with a young patient before starting therapy? What kind of testing needs to be done?

NILO AZAD: So when we have young-onset colorectal cancer, just as you mentioned, there are a subset of these patients that have a genetic predisposition to developing colorectal cancer and other tumors as well. And so these patients absolutely need to be assessed for these genetic syndromes. So for my patient, in particular, I mentioned that she had mismatch repair deficiency or microsatellite instability.

That suggests that she had what was called Lynch syndrome. And Lynch syndrome is something that, now, luckily, we actually have therapies for in terms of having immunotherapy. But knowing about that kind of a syndrome is important for this patient for her future planning, for the other tumors that she might develop, and of course for counseling for the rest of her family as well.

And what was actually interesting about this case was that she had traditional mismatch repair testing with immunohistochemistry of her tumor, and that testing came back that she had microsatellite stable disease. So initially we actually didn't think that she had microsatellite instability. But because her family history was such that I was still suspicious that this was true, we sent second testing using a different kind of assay, and that's where it became clear that she had mismatch repair deficiency. So it's really important to maintain a high index of suspicion and recognize that even some of the tests that we send are not perfect and, if you still have a high index of suspicion for reasons like the family history or a patient having a second cancer previously, that you should follow that instinct and make sure that you're doing as deep testing as necessary.

The other issue, of course, with younger-onset colorectal cancer, especially for people as young as my patient was, is the question of fertility. And so because she had rectal cancer and, as part of the paradigm for rectal cancer, these patients will have radiation, she was not going to be able to carry a fetus or embryo to term after completing therapy. So that's something that we need to understand early, have those conversations early, and get a multidisciplinary team involved that usually involves fertility experts as well as gynecologists.

And so, for her, what we ended up doing was doing an egg harvest. And then she had in vitro fertilization performed, and then they were able to store embryos for her and her husband. And now they're actually looking forward to moving forward with surrogacy.

CAITLIN MURPHY: So it sounds like your patient had to navigate a lot at the beginning of her diagnosis, considering fertility options, grappling with a new diagnosis at the age of 32, and then going through all of the workup and diagnostic testing. After that, what kind of treatment options would be appropriate for her?

NILO AZAD: So, at this point, we actually aren't treating early-onset colorectal cancer any differently, in terms of how we actually treat the cancer, compared to people who develop colorectal cancer at a more average age. That said, our patients do have specific needs that we need to incorporate and discuss, both when they're diagnosed and as they start treatment and then later as they complete treatment and for their survivorship.

So, clearly, we talked about the fertility issues. But when you've got a patient who's in their 30s or 40s and they're undergoing chemotherapy that's going to leave them with potentially lifelong neuropathy as one of the long-term side effects, that's really something that we need to discuss with patients, both so that they know about it, but what impact could that have on their professional function.

For example, this week, I saw a 40-year-old woman who is newly diagnosed, and she is actually a concert musician. And so the idea that this may actually result in meaningful disability for her for what her chosen profession is, it's something that we need to discuss with these patients because they likely have 20 or 30 more years of professional life that is ahead of them and makes a huge difference for them, and financially as well.

And, on that front, when you are treating people who are kind of in the prime of their life when it comes to their earning potential, that's also a really big issue that needs to be discussed. Sometimes people, in fact, lose their jobs because of the amount of time that they have to take off for treatment during that time. And so working with social work and making sure that we are addressing these issues and not just focusing on the things that are physical is really important.

I'm a believer that impact on sexuality and body impact is not something that is only for the young. But, clearly, that's something that we need to discuss for all ages of patients when it comes to the kind of therapies that we have, especially with rectal cancer where, a lot of times, patients are left with a temporary or permanent colostomy.

And I also think that there is some real issues around feeling isolated from your peers. It's still very rare to develop colorectal cancer, or any cancer, below the age of 50. And so because of that, even though we are seeing an increase in incidence, a lot of times, this is an area where patients can really have significant mental anguish because they feel so isolated from their peers that aren't having to deal with these issues. So I think all of these are really important features of dealing with early-onset colorectal cancer.

CAITLIN MURPHY: I think you said it exactly right, that these patients are in the prime of their life and not necessarily just navigating cancer treatment-related factors, but also having to deal with family and care-giving responsibilities, their job, their economic situation, and their social situation. If all other disease factors and patient characteristics were similar, though, but the patient that you talked about was older, let's say, aged 55, would you do anything different in terms of her care?

NILO AZAD: So, you know, with that particular patient, we were trying very hard to see if we could find a way that she might not have to have radiation because we knew that radiation was going to take away her fertility. And so when she had that initial progression on chemotherapy, what we did was a little bit out of the box, at that point, using data that existed in the metastatic setting showing that immune checkpoint therapy was very effective in patients with mismatch repair deficiency and treating a patient that didn't have metastatic disease, hoping for an excellent response, which is what we got. Now, fortunately or unfortunately, while she had a fantastic response, because the tumor didn't regressed completely and left her with that scar tissue, she did end up getting radiation because we couldn't be confident that we had gotten a complete response with just the immunotherapy.

But I do think that, with younger onset colorectal cancer, what often happens is that we dance a little outside of the box in terms of trying to do things that would help preserve patients' fertility or preserve some of their overall function that might be a little bit different than what we might do for people 20 or 30 years older. I think that, in the right circumstance, that can be the right thing for our patient. But it is something that you have to do very carefully because, as you mentioned, it may well be that sometimes our younger patients are being treated more aggressively than they need to be just because they come in, and they have less comorbid conditions. And people feel comfortable being more aggressive when they might not need it.

CAITLIN MURPHY: This is a really great conversation. And, as an epidemiologist, I often get lost in the numbers and forget about the real impact that this disease has on patients. And so I really appreciated learning about the patient case.

NILO AZAD: Thank you, Dr. Murphy, for joining us as well. I think that this is such a great way for us to put some of those really objective data together in terms of what we're seeing with more patients that are developing young-onset colorectal cancer; what groups that we're seeing that in, both in terms of ethnic groups and risk factors; and then combine it with some of the key features that are important in terms of patient care, which I would say means that all patients should be getting genetic testing, all patients should be treated aggressively, and that there are many both physical and psychosocial factors that we need to be taking into account when we're treating our young-onset colorectal cancer patient. So thank you so much for your time. I've really enjoyed talking about this with you.

[MUSIC PLAYING]

SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning Center at elearning.asco.org.

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In this episode of the Social Determinants of Health (SDOH) series, Dr. Shekinah Elmore (University of North Carolina at Chapel Hill) and Dr. Ramy Sedhom (Johns Hopkins University) provide research highlights in Social Determinants of Health topics from the recent 2021 ASCO Annual Meeting, provide context to the research, and discuss clinical implications. View episode slides and COI.

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Air Date: 7/21/2021

TRANSCRIPT

[MUSIC PLAYING]

LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 president of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care, and is not intended for use in the diagnosis or treatments of individual conditions.

Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on the social determinants of health, we invite Guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable.

But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere. I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table-- voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality, equity for cancer care. Thank you.

SHEKINAH ELMORE: Hi, and welcome to the seventh episode of the ASCO Social Determinants of Health Series. I'm Dr. Shekinah Elmore, and I'm an assistant professor of radiation oncology and urology at UNC Chapel Hill. With me is Dr. Ramy Sedhom, a medical oncology fellow at Johns Hopkins. We're happy to be joining you, wherever you are in the world.

RAMY SEDHOM: Yes, absolutely. This series is part of an initiative proposed by ASCO president Dr. Lori Pierce, focused on increasing oncologists' understanding of the social determinants of health, its impact on patients, and modifiable risk factors for cancer, inspired by Dr. Pierce's presidential theme of equity, every patient, every day, everywhere. In this episode, we will review highlights in social determinants of health topics from the recent ASCO annual meeting, provide context to the research, and discuss clinical implications.

SHEKINAH ELMORE: In the social determinants, some of us might need a refresher, and that's OK, too. So the social determinants, as most of us know, are really those things at the interpersonal, community, social, structural higher levels that pattern health outcomes and access. So it's education, it's health care, its neighborhood and built environment, social and community context, and economic stability in one model from Healthy People 2030. But what we'll be talking about in many ways is at the individual level-- so the individual social risk factors that are lower than the social determinants of health. And then we'll also be talking a lot about race and racism.

And so in terms of racism, the best definition that I have found is by Dr. Ruth Wilson Gilmore. She's a noted geographer. And that definition is that racism is the state-sanctioned or otherwise extralegal production and exploitation of group-differentiated vulnerability to premature death. And one of the benefits of the podcast format is that you can rewind, fix yourself on this slide, and read the definition a few times, like I did when I first came upon it, to just see how straightforward, but how all-encompassing, it is.

And so racism is really a structural determinant of health. It sits above even some of these social determinants that we talk about. It patterns health inequities directly. It also has these interactions with all of the social determinants of health. And I think that that will become clear with the abstracts that we're talking about.

RAMY SEDHOM: Really, really powerful definitions. And with regards to care access, almost 40 years ago, Penchansky and Thomas published their five As of access framework. And the five As, as you can see here, represents affordability. So thinking about what is the cost to patients.

And there's been a lot of work coming out over recent years showing that these costs are increasing for patients directly with time. Accessibility-- what is the distance to location or a particular service for patients throughout the country. Availability-- what is the access to specialists and specialty resources, accommodation, flexible scheduling, and acceptability.

And the reason why we bring up this framework is it's a context to discuss the first of the abstracts that we will discuss coming from Dr. Guerra and colleagues at the Penn Abramson Cancer Center. While published 40 years ago, these issues remain pertinent today. And we know that clinical trials do not operate in a vacuum, but instead mirror a lot of the problems within our current health care infrastructure. And that's what makes this work most impressive to me.

I do encourage all to listen to the oral presentation from the ASCO annual meeting, abstract number 100, titled "Accrual of Black Participants to Cancer Clinical Trials Following a Five-Year Prospective Initiative of Community Outreach and Engagement." So what was the problem they were tackling? The team identified a major gap for full inclusion of minoritized patients in their cancer clinical trials network. And their goal, as highlighted by this abstract, was to increase the accrual of Black participants in cancer clinical trials.

Importantly, they took a multilevel approach. But before thinking about any intervention, they went out into the local communities. They spoke to the patients, to the community leaders, pastors, community advocacy groups, and outreach groups to really listen to what the problems were. And by engaging with those most important stakeholders, did they really think about what were the most important interventions?

And what did these interventions look like? Well the team at the Penn Abramson Cancer Center focused on educational efforts in Black communities dispelling many myths about cancer clinical trials. They also increased touch points and access points for patients to access care. Most importantly, these came through breast cancer and colon cancer screening for both insured and uninsured patients.

One thing that really stuck out to me, very pragmatic and thoughtful in its design, was to make sure that culturally-tailored marketing strategies were also available for patients to see. They worked with pharma to make sure that Black patients were also shown on pamphlets discussing cancer clinical trials. And when thinking about access to care, we know that transportation is oftentimes a barrier, especially for our most vulnerable patients. So they had made sure to have contracts and connections with Lyft and other ride-sharing agencies to make sure that people can make it to the cancer center.

And from the health care infrastructure side, they established new requirements for minority accrual plans, and made sure to use community health workers and one-on-one patient navigation. And what was the ultimate impact of their work? Over a five-year effort, they reached more than 10,000 individuals through various venues. And when looking at their primary outcome, they more than doubled the number of Black patients who were accrued on cancer treatment trials. And they saw up to a four-fold increase in the accrual of Black patients in non-intervention treatment trials.

However, what is most important is they established a new level of trust with patients in communities that they were not before reaching. And they were able to remodel their organizational care delivery infrastructure to address this major gap in care delivery. So what was the hallmark of the strategy and how can we pragmatically implement it in our own institutions?

First, they focused on understanding local needs. Importantly, they established bidirectional relationships, and they made sure to acquire data to show the business case for why this is a return on investment for patients, their local city, and their health care infrastructure. I want to applaud Dr. Guerra and her team for making sure that this was a long-term investment in the Philadelphia area. What first started as a research grant later grew to involve the entire cancer service line, all the way with the director of the cancer center, and making sure to involve their entire organization.

And what is the lesson learned? Well, Black participants are significantly underrepresented in clinical trials. But it is not because they are resistant to participating. Instead, this is likely due to structural, clinical, and organizational barriers.

In our local communities, the underrepresented minoritized groups may look different. Perhaps they may be racial minorities. They may be rural dwellers, adolescents, or perhaps elderly patients, sexual and gender minorities, and so on and so forth. So I'd like to open this up to Dr. Elmore, and see if you have any other comments or thoughts from hearing about this.

SHEKINAH ELMORE: This is such tremendous work. And I agree. I think that it's a testament to so many things. I think that responsive development of interventions is so critical, and that truly, Black patients and Black people want to be included in the things that are meaningful to changing health outcomes. And there's so much here, and I really hope to see more efforts like this in both trial enrollment and for standard of care enrollment.

RAMY SEDHOM: Absolutely, and hats off for ASCO advocacy for really pushing forward the CLINICAL TREATMENT Act, which made sure to ensure that clinical trial costs were also covered. This was a landmark decision that came in December of this previous year. [AUDIO OUT] area. And we look forward to seeing this implemented on a larger scale through partnerships with ASCO in future years. And with that, I'd like to transition to our next abstract that Dr. Elmore will lead us through.

SHEKINAH ELMORE: Great, thanks. So this abstract, "Financial Toxicity, Symptom Burden, Illness Perceptions, and Communication Confidence in Cancer Clinical Trial Participants," the first author is Dr. Subha Perni and the last author is Dr. Ryan Nipp, both of which I know well from MGH. And so the problem here that they were trying to address and explore is that trial participants are at high risk for adverse effects from financial toxicity. But we don't really know that much about what the scope and type of those adverse events might be.

So with this study, they prospectively enrolled trial participants from MGH for about two years, and they saturated their sample with those that were already referred per their request for financial assistance. And so they assessed financial toxicity in these two ways, both asking these participants about financial burden overall of care, and then focusing in on trial cost concerns. And then they also asked, using standardized validated measures, about patient-reported outcomes. So physical and psychological symptoms, illness perception, and communication confidence. How confident are they in communicating with their care teams?

The results are interesting. 200 patients-- so 57% in this group noted that they had financial burden overall, and 41% with trial cost concerns. Those that noted financial burden were more likely to be young patients, which makes sense. And trial cost concerns, those were more frequent among patients with lower incomes. Both of these were significant, and I think that that speaks to the validity of these constructs of financial toxicity.

And then this is the most interesting part. Financial toxicity was associated with greater physical and psychological symptom burden, negative illness perception, and lower communication confidence. So the bottom line here is that financial toxicity was associated with worse patient-reported outcomes across all domains that were measured. Lots of future questions here.

So how might financial toxicity operate in different clinical settings? These are trial participants at a designated cancer center. How does that work in community oncology practices or among non-trial participants? How might financial toxicity moderate some of those other social risk factors or social determinants of health? We know from other health outcomes that if you look at Black Americans and white Americans with the health outcomes disparity, that disparity sometimes widens as you climb socioeconomic strata.

And then how might financial toxicity influence oncologic outcomes? More physical symptom burden, more psychological symptom burden, worse communication, that could all lead to worse oncologic outcomes. So lots of programmatic implications here. I think prospective identification of financial toxicity risk, those patients who are at risk for that, and then aligning that with social and economic interventions. But this certainly aligns with the previous abstract that we discussed, another lens on why people might not participate in trials, and just the financial burdens that care can bring to patients, and the fact that it impacts the very care that they're getting.

RAMY SEDHOM: Yes, absolutely. Such great work by Dr. Perni and Dr. Nipp and their team. I think we're just scratching the surface, as you mentioned, with financial toxicity and its implications on patient care and the caregiver experience as well.

So all in all, I think the concluding remarks we could probably make is that equity is a simple concept to grasp, but very complicated to execute and measure for success. We do want to thank our authors who did put time and effort in their careers to opening up our eyes, and Dr. Pierce for really making this the highlight and the theme of her tenure as ASCO president. So for those listening in, thank you for joining us for this episode of the ASCO Social Determinants of Health series.

To keep up with the latest episode, please click Subscribe. Let us know what you think about the series by leaving us a review or by emailing us at professionaldevelopment@asco.org. On behalf of Dr. Elmore and I, thank you for listening in.

SHEKINAH ELMORE: Thanks.

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VOICEOVER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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The ASCO Education podcast continues the conversation on burnout, this time with a focus on how it affects trainees. This week's episode features Drs. Anna Laucis (University of Michigan) and Daniel Richardson (University of North Carolina). If you enjoy this episode, please subscribe or leave a comment.

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Air Date: 7/14/2021

TRANSCRIPT

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ANNOUNCER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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ANNA LAUCIS: Hello. And welcome to ASCO Education's podcast episode focused on the important and far-reaching effects of burnout among oncology trainees. My name is Dr. Anna Laucis, and I'm a radiation oncology resident physician at the University of Michigan.

DANIEL RICHARDSON: And I'm Dr. Daniel Richardson. I'm an assistant professor and leukemia doc at the University of North Carolina. I recently completed my hematology-oncology fellowship here at UNC as well.

ANNA LAUCIS: So, Dr. Richardson, what has been your personal experience with burnout in your medical training and your current professional role?

DANIEL RICHARDSON: Well, that's a great question and something that I'm excited to talk about today. So burnout can really be expressed and experienced in numerous ways. Traditionally, we've segmented-- excuse me-- this into categories of emotional exhaustion, cynicism, and feelings of inefficacy. And one of the first things to mention is really the structure or the practice of medicine itself. I really see in most places that medicine continues to be very hierarchical and rigid. And this hierarchy and rigidity can lead to depersonalization.

I feel like we have a tremendous opportunity to connect with patients so many times in their darkest days, but we're taught that we can't show vulnerability and we need to act in a certain way. We are conditioned really to place boundaries around ourselves to depersonalize as a way to get through rounds, as a way to improve efficiency.

I know you've probably experienced this, but on the inpatient wards on morning rounds, we go from room to room. We listen to patient stories about the devastation that cancer has caused on them, but we don't talk about it, and we don't allow empathy really to come with us into rounds, and we exclude emotions altogether.

I think about, as a leukemia doc, the challenges when some of my patients die, and we don't talk about that. We don't talk about those challenges. We don't talk about our own emotions as we go through that process. And I often comment to others that I walk through the Valley of the Shadow of Death with most of my patients, and this human connection that we can have in the midst of that is so important. It's truly a sacred space where we can invite our patients into. And this process of walking with patients through that can bring about great meaning and satisfaction.

ANNA LAUCIS: Yeah. I fully agree. I think there are many ways in which we connect with patients. And I think that's really important, as oncologists, whether radiation oncologists or medical oncologists or surgical oncologists, is the ways in which we connect and empathize with our patients. It's not only, I think, the greatest gift and support we can give to patients, but also I think, unfortunately, can also really lead to burnout, especially it's difficult to set boundaries sometimes.

We really invest in our patients, and we almost take personal responsibility for their outcomes as well, even though, as I've gotten further in my training, I've realized that, unfortunately, there's just really bad biology sometimes, just really bad disease. And as much as we do, there is a limit to what we do. And I think that, as I've gone through my training, I recognize that being able to set boundaries, however difficult that is, while still empathizing, having a way to find meaning and purpose outside of work is so important as well and can help reduce that burden of burnout.

And one of the ways I've conceptualized this is we absorb these collective traumas, as you mentioned, walking from room to room in the hospital ward, for instance, in the clinic in radiation oncology. But going from room to room, I try and take a second, and whether it's washing my hands or just taking a moment to reframe, it really helps to set that boundary not only between the patients and ourselves but also between patient to patient, because it is so important that we give as much as we can to our patients but also that we find ways to refurbish and refill this bucket of energy and dedication that we have.

DANIEL RICHARDSON: Yeah. I think your point about finding identity in your job, I think is-- it's both a double-edged sword. I'm a huge proponent of finding meaning in medicine and then really finding ways for us as a community to find meaning in medicine. But also, if we find our whole identity in our work, it's really going to become an idol in our lives, and it's going to inevitably fail us.

I think trying to use work alone to sustain our deep need and purpose as a human being is probably not enough. I find that work has a place in my life and has a place as, many times, our calling. However, I don't think it can fill every aspect of it. And if we try to put that onto our work, even a tremendous calling such as oncology, it's inevitably going to fail us.

ANNA LAUCIS: Absolutely. I agree. And I think one of the things that to keep in mind is that whether I think in medicine in general, but in particular oncology, it really stretches us to our full capacity in training, and we give it our everything. And I think sometimes, as I've touched in conversations with other colleagues, sometimes we give it so much of our all that other elements of ourselves that made us interesting and dynamic and multifaceted in high school, college, medical school, cooking, exercise, all of these things that we do to be a complete person, some of that does, I think, by nature of the intensity of our training, especially in oncology, does get pushed to the side.

But I think it's important as much as we can to find ways, even if it's small, even if it's small amounts of exercise or small amounts of cooking or enjoying other aspects of our life, to reintroduce to us when we're able to in training, because I do think it allows us to bring our full selves to work and to connect with patients in the best way we can as well.

And I think one of the things that I love the most is being able to bring a smile to a patient's face, even though they are in a very vulnerable time. All of our patients pretty much have cancer. But like for example, the other day, I connected with a patient about going to Harry Potter World and Disney, and that really brought a smile to his face, even though we were dealing with a metastatic cancer for him. But I think that really brings meaning and also is so important to do to be able to connect.

DANIEL RICHARDSON: Yeah. So I want to jump off two points. So the first one you said, how do we have these repeated traumas in our lives, and how do we manage those? I think this repeated trauma or this repeated suffering that we experience on as part of our jobs really erodes our ability sometimes to engage into our own lives and engage in the lives of our patients.

And I think about as oncologists we often are mediators of life-defining information. We often tell patients that they have cancer, that they aren't going to survive the next couple of years, that they need to make decisions to prioritize as we move forward. And we can feel like we are the mediators of devastation to our patients.

And I think, as we've mentioned, one strategy is to build these deep, impenetrable boundaries, where we don't allow that suffering to seep into our souls. Sometimes we talk about resilience, but I think that, as you mentioned, too often, we can hide in our boundaries and not allow that connection to happen. And I think, as you mentioned, these small things that we can begin to do-- we can begin to connect with patients to give them good-- I really think that this is developing a strategy of redemption rather than resilience alone. That is, we can learn how to find great meaning, purpose, and satisfaction of walking through the suffering with our patients rather than simply learning to endure it as a side effect of our lives.

And this really comes from embracing, caring for the suffering as a calling, and finding ways to bring good into the lives of patients in the midst of their suffering. So you mentioned talking to them about Harry Potter, getting to know them. Perhaps it is just this listening ear. I think oftentimes patients have a tremendous story to tell, and allowing them to tell it or walking them through it is so important. Perhaps it's a prayer. Perhaps it's a hug. Perhaps it's just the acknowledgment of the loss that they're experiencing and finding those connections with patients and bringing good into their lives in the midst of the suffering that they are experiencing is so important.

ANNA LAUCIS: Yeah. I fully agree with you. I think that's one of the greatest gifts that we can give as physicians. And it reminds me of-- so I did a lot of art history in high school, really enjoyed that, very different from medicine. But I think one of the interesting things-- and I'd love to take a specific course some time on just the history of medicine through the lens of art-- it just reminds me of this famous painting of the physician at the bedside of a patient, holding their hand. And in those days-- this was way back in the early times where medicine was really more about just the physician at-- the word "attending" comes from just attending to the patient's needs.

And I think that sometimes we get so tied up in learning all the clinical trials or all of the oncology outcomes, but I think that, at the core of it-- and I know that the ACGME has an initiative, Back to Bedside, and trying to find the joy in medicine that I think there's a lot we can offer just as a fellow human, as a fellow person who brings their redemption, hope. And I think it's important to draw the line there, especially in oncology, to not offer false hope, but I think to give as much support as we can to patients, because it is a very vulnerable time. And yeah, I think patients have very interesting stories, just getting to know them, even if it's asking about their family or things that are important to them.

Or I try and recognize if patients are wearing a shirt with a logo on it and I recognize that, I try and bring that up, and you often see their face light up. Like, a patient recently loves the Detroit Tigers. And so he was having horrible nausea a bit. Then, talking about the Tigers, his face lit up, and he forgot about the nausea for a moment. And so even just those moments of peace that we can bring to patients, I think that, for me, at least helps combat burnout because I really find a lot of purpose and meaning in that. And I know that, at least in that moment, I gave that patient some peace and some joy perhaps.

DANIEL RICHARDSON: Yeah. I think that's really important as we think about our role as co-journer, as people stepping alongside and walking with patients through their journey with cancer. Obviously, we'll have opportunity to experience great joy for some patients and great sadness for others. So I think that is really an opportunity for us to enter into those experiences with our patients.

I'm interested on your perspective on how COVID has really impacted your experience of burnout or other aspects of training for other residents.

ANNA LAUCIS: Yeah. I would love to touch on that. So I think that COVID has been very interesting from the standpoint of just completely turning on its head everything that we thought was important about, I think, medicine, our experience. Even the didactic structure, that was one of the early changes that all of our didactics became virtual. In a sense, that took away some pressure, where we rotate between multiple sites in our training program.

And that was actually one of the stressors before COVID was having to drive physically from one site to another or even in our research block and having it-- for me, I live 20 miles from my work. So having to drive that far a distance-- so that was a silver lining of having a little more flexibility there.

On the other hand, I think that one of the challenges it's brought up, particularly in the context of burnout, is that I think one of the aspects of wellness and a culture of support is truly those person-to-person interactions, especially amongst trainees. That is more of a sense that we're all in this together. And especially, if we're all in the same work room, we can bounce ideas off each other or really help provide at-the-elbow-support, especially for the junior residents. That's so important. And definitely an aspect of that, I think, was challenging.

Even like happy hours-- we would do a lot of those before COVID in person and just as a way to relax, relieve stress, but also connect as not just coworkers and colleagues but friends. And really, I think those friendships then lead themselves to being able to support each other better at work as well. And so I'd say that's one of the challenges has been finding ways to still connect in different ways than in person or doing virtual happy hours, so it's not quite the same.

Then I'd say the other element of this-- and I've really seen this firsthand in terms of taking care of my patients. So one of the first things that happened was visitors were no longer allowed to accompany patients. And many of our cancer patients are elderly or have deficits, and they often really rely on those family members not just for physical support but also to take notes or to help them keep track of appointment details.

And so even if we teleconference those family members in, it's not quite the same support as they would have by having their family member there in the room, especially for emotional times or if the patient's bringing up very difficult things. Even if we can offer a tissue or give some space for emotion, it's not quite the same as just holding the hand of their family member or something like that.

And then I'd say the other aspect-- just a brief personal story I have is that a difficult experience I had recently was I helped a patient get through a very difficult treatment, seven weeks of daily radiation treatments, and talked to that patient or his family member pretty much every day of those treatments. He was having a lot of symptoms.

And then it was so unfortunate that I saw about a month later that he had actually passed away from COVID and complications of COVID. And just to have, I think, put all that-- because I think, especially, this idea of defining your worth and your purpose from the outcomes of patients, that was really a crushing moment for me, I think, that I was like, wow, we got him through all of this treatment, and then for COVID to-- just this existential anger at COVID.

DANIEL RICHARDSON: Yeah.

ANNA LAUCIS: Why did that happen? But I think on the positive side, I guess, getting back to silver linings was that I had actually thought to call that patient's wife and offer my condolences and to see if she'd be interested in a bereavement counseling because I knew we offer that service, and I was actually the first person to reach out to her to offer that. And so I felt that even though it wasn't as much closer as I would have liked, at least I was able to offer something. And I think that's what can help lead us forward in those moments of still being able to offer ourselves to support and to provide. Even though we can't of course give her husband back, at least give what we can.

DANIEL RICHARDSON: Yeah. So obviously, as we're talking about burnout, thanks for sharing that that was a crushing time, and that's OK. I think that sometimes the loss of our patients is crushing and can feel crushing, and it's emotionally challenging. So thanks for sharing that.

I think that you had mentioned a couple of things about the silver linings of COVID. And I think one of them is really this emerging understanding of the importance of addressing well-being. COVID has been a shockwave that's gone through our medical system, and we've seen providers really wrestle with the ongoing suffering. And so bringing this to the fore is really important.

I have really benefited. So I have a young family at home, and so I benefited quite a lot from the ability to work my non-clinic days at home. And I really hope that that continues to be something that comes out of this-- so the televisit, working from home. And I'm hopeful that we continue to see well-being as a central aspect of caring for patients well and delivering really high-quality care.

So obviously, burnout is a very serious issue, and as I just mentioned, we don't often talk about how challenging it can be to walk with patients through suffering. What kind of strategies do you think work well in supporting wellness and preventing or mitigating burnout?

ANNA LAUCIS: I think there's a number of ways to think of this. I think that, often, personally, in efforts I've led or what I have seen, there's almost this stigma in general about mental health issues but, in particular, about wellness. I think you had mentioned your resilience earlier that I think sometimes this-- especially in medicine and I think in other industries as well, there's almost a stigma against wellness efforts because we think about it as like putting the onus on the individual to build resilience and to add one more thing to their plate or do one more wellness module.

And I think actually one of the drivers of burnout is that we're already-- our plate's already overflowing with responsibilities, and actually offloading some of those might-- I think is, in general, a more successful strategy than adding things to it.

But I think it's challenging to do that, right? We can't necessarily take away the important work that we're doing in oncology. And as we were talking about we're walking with patients on this journey, we're kind of absorbing their traumas. We can't really take that away, necessarily. I mean, that's essential to what we do. But I think one of the ways that we can address it-- and what I found to be successful in my own efforts here in my training program-- is just thinking about, OK, I think there's-- even though we've been in all together, I think there's really a lot of different drivers, and addressing each one individually is important.

So for example, thinking about, OK, what's on our plate that's overflowing, and is there excess of those things? And I think that COVID, again, has maybe helped us think through that.

OK, maybe we don't need to have in-person didactics that are stressing us out and making it difficult for us and maybe some of-- because I think, for a virtual Zoom meeting, it's a little easier to log off or put yourself on mute if you have a child or a pet that needs something or even-- yeah, and as you talked about this flexibility of working from home part of the days, even getting to doctor's appointments or dentist appointments, that's an issue that trainees certainly have as well. And so just being able to attend to your personal needs better, I think that's a way of-- it's not necessarily taking something off your plate, but it's making something a little easier to do.

On the other hand, I think that really successful wellness initiatives that I've seen really addressed burnout from the grassroots rather than top down. And so I think if it's just another one of these online modules that we do that I think a lot of us click through quickly just because there's so much, I think that that's not necessarily the most successful. But if it's really maybe a group discussion or thinking about, OK, maybe, especially in oncology, one of our issues is that we don't have a good outlet, and we don't really have a good, safe space to talk about death, illness, tragedy, all of these big, big heavy themes that we're dealing with daily.

And so, actually, one of the things I've been able to implement at my institution that's been very successful is adopting this national platform called Schwartz Rounds to the radiation oncology setting. And the idea of this is to give a safe space for talking about the emotional, sociodynamic, truly community and also complexities of care that it's not just the patient in front of us and their oncologic outcome, but also the difficult family dynamics that sometimes arise in patient support as well as ethical dilemmas that can arise.

But I've started at my institution is something called Radiation Oncology Reflection Rounds, and that really has given us a safe space. And we did do a virtual version of that as well recently, which went well. But this idea is we all sit around and think about the emotional and interesting impacts that dealing with cancer patients has and also the ways in which we do have an outlet to talk about this.

And so these sessions have often involved even leaders in our department bringing forth their emotions in a way that I think is really impactful and sets an example that this idea of it's OK to not be OK, and we don't often talk about that enough. But that has been very meaningful. And I think you, hopefully, will continue on after I leave here. And I think the national Schwartz Rounds platform as well really accomplishes that in a multidisciplinary way.

DANIEL RICHARDSON: Yeah. I think a few things that are really profound is providing the opportunity to share emotions and have a safe space. I think, too often, we don't have safe spaces in medicine to say we're not doing OK. The buy-in that you got from upper-level leadership and the mentors, those that establish the culture, is really important. I really believe that, as we build a sense of community, a shared sense of purpose within our institutions, within our organizations, within the broader community of oncology, that can be a powerful mitigator against burnout as we feel like we are in it together, that we feel like we are contributing to the greater good. That's so important.

I've been privileged to develop an art of oncology program at my institution with others in psychiatry and palliative care, and it's a similar idea to allow for a fellowship program to provide a place to share our stories, to reflect on some of the more challenging issues in oncology, to reflect on suffering, to reflect on communication, to go into those places that it's really hard for us to talk about.

And one of the things that we've really seen come out of that is the shared sense of meaning, this deeper connection and this understanding like, oh, you're walking through that too. And it's OK to share that this is really hard, and I don't have all the answers. And, oh, man, I don't know what to do for this patient, and I'm feeling inadequate in my role as an oncologist or as in my role as a fellow. And it seems like everybody else is doing fine, and I'm not. And having the opportunity to build those connections with co-fellows and others in one's own institution is really important.

I think, for me, as I went through fellowship, there were certainly this sense that I needed to let go of things that we can't control and really saying it's unsustainable for us to think that we can save every patient, and really saying my goal as an oncologist is to, yes, deliver high-quality care, but it's really important for me to care for each and every patient, to get to know them, to get to know what's most important to them, and to let go of the burden on their outcomes.

I can't pick and choose which patients the chemotherapy is going to work. I can't pick and choose who's going to have the best outcomes, but I can serve and care for each patient. And by doing so and having the opportunity to walk with that for patients, I can get a deep sense of purpose and meaning in the lives really of each patient.

ANNA LAUCIS: I think that brings up a few really important points, and I think one of those-- and it really resonates with me what you said about letting go of what you can't control. And I think that goes for not only patient outcomes but also just everything that comes with the work we do in medicine. It's often very busy. There's often many workflow issues that are beyond our control, or the patient showed up late, or then they're not roomed in time, or just all of these workflow things. And I'm sure on the inpatient side as well, as I saw in my intern year, certain labs taking longer than they should to come back or various things that there's just all-- it's really a lot in our profession, I think, that's outside of our control.

And so I'd say that I agree that one of the ways that I've been able to really cope with these issues of burnout, the best has been-- and I think a successful strategy, in general, for these issues and challenges in life is being able to walk back from that and say, OK, set a boundary like a mental boundary. OK, what's in my control, and what's not?

And I think some of these inspiring quotes that have really resonated with me are these ideas of saying, OK, what are the things I can control? I can control that I show up on time. I'm compassionate for my patients. I'm taking care of myself right-- sleeping, eating, the bare-bones essentials. And yeah, I'm going to be a supportive colleague for my co-residents. I'm going to help them out when I can.

But you know what, at the same time, I'm human, and I'm going to inevitably make some mistakes. But I can't dwell on those or beat myself up about those, because you know what, I need to be able to bring my whole self to the next patient. And I think that's really been a healthy approach for me, and I've been able to really overcome a lot of barriers that way, being able to say, OK, all of these extra things that are going on, whether it's the patient's outcome or the workflow concerns.

And I think humor too can be helpful, even if it's cynical humor, saying, well, of course, on a Friday, I'll get three urgent patients that I need to essentially stay overnight to treat. That happened on my last call week, but the good thing was the supervisor who was on call with me and myself, we just approached it with a smile, and yep, OK, this is Murphy's Law. I know it's going to happen this way. And I think that can truly help these, again, existential things. Well, you can't control this, but of course, that's going to happen this way.

And so I'm curious as to, for you, Dr. Richardson, what other strategies you've had in personally coping with burnout in some of these issues as well.

DANIEL RICHARDSON: So I think that you mentioned about coming at your patients as a whole person. And I think that that's really important. I am a huge proponent of thinking as a community of how I can find meaning and purpose in our work. But as I mentioned before, this work can't be all that we have. So I think it's critically important for us to establish patterns in our lives of rest, of quiet, of rejuvenation in order for us to come as whole people back to our patients and back to our colleagues and coworkers.

For me, my Christian faith and my family are tremendous sources of strength and encouragement. And I really think that it's important that, as a community, we recognize that, as whole people, as we come to our patients, we need to encourage the others to find those places of strength and encouragement outside of medicine, even if that means, yes, we need to encourage vacations, even if that means we take call for other people so they can establish better patterns of rest, et cetera.

ANNA LAUCIS: Yeah. And I would echo that as well that, really, and I think too of this idea of redefining what success means as well. And I think whether it's medical oncology, radiation oncology, surgical oncology, really, all of us are very high achievers, and we're used to not only being able to, to some degree, control the outcomes of our own successes based on the effort we put in.

I think one of the true challenges of a field like oncology is that, regardless of how much effort we're putting in, how many extra hours we're putting in, that sometimes just the biology is very challenging. Some cancers-- and by now, at the end of my training here, I've learned which one is that, OK, if the pathology comes back, it's that. OK, I'm going to have to really reframe my discussion with the patient and, again, this idea of not giving them false hope.

But at the same time, I think, really, there's a lot of tools from palliative care and this idea of, OK, this is a difficult situation, but we're going to fight it with everything we can, and this idea of even if we can't cure your cancer, we're going to be able to use support to help you feel as well as you can for as long as you can. And so I think that having more tools in the toolbox, I think that rather than this naive thinking of, oh, the only good outcome for a patient is cure, really, I think-- and especially in palliative care rotations I've done-- and it sounds like you've had a lot of experience in that as well-- this idea of a good death or this idea of patients really meeting their goals and what they value.

And I think really digging into that, it can not only help us really give our best efforts for the patients but also their family members, and also just, again, reframe this idea of what's a good outcome. And in some cases, the patient will succumb to their disease, but if we can offer them peace, better time with family, reconciliation of difficult family dynamics, or just reduced nausea, reduced headaches, reduced fatigue, I think all of that can be considered a success.

DANIEL RICHARDSON: Yeah. I think it's a great point to say that we cannot define our success by the clinical outcomes of our patients. I personally define success, and I encourage residents and others that work with me of saying, let's care for each patient. Let's deliver quality care to our patients and care for them.

So that is all the time we have for today. I want to thank Dr. Laucis. This has been really great. I think, as we begin to allow COVID to bring up wellness and well-being into the forefront of our minds, I think we have a tremendous opportunity to engage each other on furthering this conversation for how we can better mitigate this in our community and develop a deeper sense of community and purpose as an oncology community.

So it's been a wonderful conversation. Thanks for listening to this episode of the ASCO Education Podcast.

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ANNOUNCER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In the second of ASCO Education’s two-part episode, Todd Pickard, MMSc, PA-C (MD Anderson Cancer Center) continues the conversation with Drs. Daniel McFarland (Northwell Cancer Institute), Sayeh Lavasani (City of Hope), and Fay Hlubocky (University of Chicago) about individual and institutional interventions to prevent and address burnout among oncology professionals.

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Air Date: 6/30/2021

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

TODD PICKARD: Hello, and welcome to the second ASCO eLearning podcast episode focused on burnout in oncology. In the previous episode, our guest speakers discussed what burnout is, its warning signs, risk factors, preventative measures, and talked about their own personal experiences with burnout. My name is Todd Pickard, and I'm an oncology physician assistant at the MD Anderson Cancer Center.

I'm pleased to introduce our three guest speakers as we continue our conversation on the prevalence of burnout and its implications for personal well-being and professional satisfaction. Dr. Fay Hlubocky is a clinical health psychologist and research ethicist at the University of Chicago Medicine. She's also co-chair of the ASCO Oncology Clinician Well-being Task Force and has extensive research experience in burnout.

We're also joined by Dr. Daniel McFarland, a medical oncologist and consult liaison psychiatrist specializing in head and neck thoracic malignancies and psycho-oncology at Northwell Health Lenox Hill Hospital. He has conducted research on empathy, resilience, and distress in trainees and edited an upcoming Springer book publication entitled, Depression, Burnout, and Suicide in Physicians.

And finally, we are also joined by Dr. Sayeh Lavasani, a medical oncologist specializing in breast cancer and an assistant clinical professor in the department of medical oncology and therapeutic research at City of Hope.

Dr. McFarland, you mentioned that you've been involved in research on burnout. So tell us, how prevalent is burnout in oncologists? And is it getting better or worse?

DANIEL MCFARLAND: Thanks, Todd. Yeah, good question. The research that I did was more on empathy, resilience, and distress, not burnout. I didn't actually measure burnout. But the latter part of your question, I'll tell you that some data indicate that it is increasing. In general, oncologists are in the middle of the pack in terms of medical specialties and where they fall in terms of how burnt out they are. And it really speaks to the drivers of burnout being not always what you think that they might be.

As a specialty, we see a lot of the patients at the end of life. But as has been mentioned, these are really more systemic, administrative of issues, although it can be communication. And again, it's just everyone is a little different in that regard. So whether it's actually increasing or we're just having more attention to it is probably a good question. But either way, it's there, it has been there, it's a problem, and we should do something about it.

TODD PICKARD: So Dr. McFarland, I really like the fact that you just said we should do something about it, and that leads to my next question. Is there any evidence-based interventions that we can use to prevent burnout?

DANIEL MCFARLAND: Absolutely. There are several good meta-analyses in fact. So people have been looking at this across the board. The caveat is that they're not always specific for the setting. And I don't think there is a way to make that necessarily possible, given the multitude of settings. But in general, across the board, doing something seems to be better than nothing. The issue is, well, are they durable responses? And what exactly are you measuring?

So if you have a drop in burnout by two points, is that enough? It looks like actually even a few points-- and I think it's around four points on the Maslach scale, MBI, Maslach Burnout Index. Fay can correct me on that, I guess. But if there's just even a small drop, then that has been shown to be a meaningful change, which is wonderful.

Now in sub-analyses in these meta-analyses, they've shown that the kinds of interventions that are most effective are organizational interventions. And most of those types of interventions are things like work hour restrictions and workflow modification. But the big caveat there is a lot of those were done in trainees, where they would have work hour restrictions. So again, you have to sort of take the data for what they are. And if it's applicable, then great. If it's not, maybe try something else.

So the take-home message is that the organizational type interventions are not only more efficacious but seem to be longer lasting in their efficacy. But that doesn't mean that individual interventions don't work, because they do. They also work. And I would say from the sub-analyses that I've seen, if the interventions incorporate mindfulness or some part of CBT-- that's Cognitive Behavioral Therapy-- those interventions seem to work the best.

The combination would be ideal of organizational changes with individual types of changes. And a lot of this comes down to sort of system-based changes. I think of adaptive trial designs, that's essentially what's needed. One thing's going to work in this setting, another thing will work in another setting. Each field has its own drivers of burnout.

I'll tell you, for example, totally outside of oncology, that with psychiatrists, who, again, don't have the highest rates of burnout for probably the reasons that we talked about, but actually violence. A lot of psychiatrists have been hit by a patient or had violence thrust upon them. And it's a real cause of burnout. I just would have never exactly put that together. So the point is that for each discipline, there are specific things, and then there are general drivers of burnout. I think we all work with the electronic medical record. We all have bosses and administration that we work for. And so it's a matter of putting these things together.

TODD PICKARD: Yeah, it resonates with me that there's a lot of things that we hear about, but then there's a difference between understanding what's out in the literature, what you hear articulated, but then how do you turn that into practical methods. Dr. Hlubocky, how can our listeners adopt some practical methods for preventing burnout that's easy to implement?

FAY HLUBOCKY: Thank you. Awareness and education is key, truly being aware, truly being motivated. We talked about self-assessment. That was actually one of the first strategies that we described in our educational book in 2016 with Dr. Back and [INAUDIBLE] of really doing, as Dr. McFarland talked about, really doing that self-assessment. 1 to 10-- how irritable, how sad, what am I? Rating that, and not just rating yourself multiple times a day, having a barometer. And again, asking that trusted observer, maybe it's your wife, maybe it's your colleague. And then, of course, to seek support if that is needed if it does become too extreme. But clearly, we know awareness and education is key-- education.

So some of the early internal medicine work showed that a simple one hour educational talk on burnout, on well-being not just informed the attendees but also compelled them to practice preventative behaviors. What was that? Exercise, getting better sleep, trying to leave work on time if they were able to, better nutrition. It is these simple things. I work with oncology fellows and teach them communication. And we have a formal burnout and compassion fatigue course.

And that is what we did in one study was just do an education, a little didactic, six months later evaluated them using the protocol and the MBI. And similarly, they changed their behaviors. They changed their practices, even the qualitative responses told us. So education is so key. And I motivate leaders so much to simply have a one hour [INAUDIBLE] grand rounds on burnout. Get some CMEs, so it motivates the docs to come in and to attend and to learn, because it is only through education do we know what to look for and what to address.

Self-care is critical. I cannot emphasize that enough. Yes, burnout is an occupational phenomenon, without a doubt. But in order to find meaning and joy and purpose in your work again, to find, to research, to rekindle that joy that you have, you have to practice some techniques. So again, it's these preventative behaviors, again just basic needs of sleep and nutrition and exercise, but it's also things like writing a narrative. When you had a patient case that maybe went a little bit south, write a little narrative about what happened so you can be self-reflective of that. Journaling, talking about that patient's story, that patient's story that went well, that patient's story that went really bad.

Gratitude-- gratitude is kind of a newer phenomenon coming out, but we teach docs to just name three things that you're grateful for in the morning, in the afternoon, and before you go to bed. It's a way of seeking self-compassion and kindness where you haven't been.

Mindfulness-- Dr. McFarland talked about mindfulness. My conflict of interest is that I am a mindful teacher. I teach this with patients and with my colleagues and students. It is intentional, purposeful. It's not about sitting in the corner and doing some yoga and breathing, but truly teaching the docs, teaching my colleagues to do some breath work before they start their EMR, right? Mindful handwashing techniques of really taking the time when we're washing our hands, a real contemplative practice to be able to recharge and refresh during that course of the day.

Although self-care is critical, and I view it very much as it being your life preserver, sometimes when colleagues say it's my organization that's really beat me down, it's not my fault I'm burnout, my analogy is, gosh, if you're on a sinking ship, won't you use your life preserver? That's what self-care is. But equally important is for the organization to please provide that support, to empower the oncology clinician to use the team. So many times I encourage the colleagues to use your team members. We're all in it together, but to truly work together as a community, because it's only as a community we'll be able to address this issue in that. So truly, self-care is vital without a doubt, can't say more than enough about it.

TODD PICKARD: So many things that you just said resonate so strongly with me, that sense of community where you feel like the stress and everything that you're going through is shared and that sense of gratitude. Just thinking about a few things that are going right, it just lowers the threshold. It lowers the stress. So let's stick with stress for a second. Dr. Lavasani, in your experience, what are the effective strategies that you've used or experienced to mitigate stress level that are helpful?

SAYEH LAVASANI: When I experienced burnout, then I decided to learn how to cope with it and to reduce my stress level. I realized that situation was not sustainable and I needed to take some action. So what I do is that I usually set aside one hour every night for myself to do things that I enjoy. It's like my me time.

So this could be cooking or reading a book one night, or watching my favorite show on TV or Netflix the other night. And also one way that I relax is by listening to music. When I'm tired of doing my administrative work or days that I'm in office, I just listen to my favorite song. It's just three to four minutes, but it makes me feel better, and then I go back to my work.

It's also, I think, it's very important to set aside some time to do exercise. If it's not possible every day, but a few times per week. And our nutrition is also very important as you know. Fay was mentioning as well. Initially when I started working as an attending, I was always skipping lunch in clinic. But then I learned that actually taking that half an hour break to have lunch helps me to feel better and to recharge, and then I can go back to my clinical duties.

And also, I try to stay organized and complete my tasks on time. It helps me to avoid procrastination. That really increases my anxiety level, because then I feel like I have unfinished things to do and just that it increases my stress. So I try to really be organized and to be on time for everything.

And this is something that is very difficult-- I'm learning to do that-- And that's basically to say no to unrealistic demands. Medical oncologists, like other physicians, we have learned to say yes to all expectations. This is something that we need to work towards unlearning. The expectations and demands on us is really high. And we feel like we always must serve others and their needs, including our institution's administration. We have turned into passive individuals, that we agree to whatever that is thrown on us.

Unfortunately, in a lot of practices, there is a disconnect between administration and physicians. And so it is very important to engage the administration to recognize burnout. And it can really affect productivity, and they need to come up with an action plan to help physicians to do things that will make our lives easier.

And definitely getting support from other team members, from our colleagues is very important. Our peers, they play a very important role in helping us and supporting us. And we always believe you are stronger if we stick together. So definitely, this is also very important to have that support system at fort.

TODD PICKARD: It's really important that when there is that disconnect between your practice, your institution, the administrators, and what the individual providers need, they've got to have a resource. And that brings me to my next question. This is where ASCO has actually something that might help. So Dr. Hlubocky, you're serving as co-chair for the ASCO Oncology Clinical Well-being Task Force. Can you walk us through the work this task force is doing? What kinds of tools and resources are being developed and offered?

FAY HLUBOCKY: Oh, thank you. It's such a privilege to introduce our membership to this wonderful task force that's in our infancy, and it's an honor to serve as co-chair with Piyush Srivastava. It was a collaborative effort between both the ethics committee and the clinical practice committee to gather a group of folks that are experts, including, for example, Dr. McFarland is one of our tasks force members, where we could actually focus on the oncology clinician well-being.

And how have we defined well-being is it's been adapted from the National Academy of Medicine's definition that it's this integrative concept that characterizes the quality of life that encompasses that individual's work-related activities, the personal, the health, the environmental, and the psychosocial factors as well.

And our mission is to improve that quality, the safety, and the value of cancer care by enhancing oncologist's well-being and the sustainability of the practice as well. We have a five-year plan. Our task force has a five-year charter and road map. The aim is really to promote well-being across the ASCO activities, diversifying resources to promote and identify the needs through research activities, to identify the needs of that individual clinician to improve the practice as well.

So ultimately, our vision is across ASCO to create programs and strategies that can really help the clinician, as well as I think the cancer organization as well. As I said, many leaders come to us wanting to implement interventions and not really knowing how to. So although we are in our infancy, we have been quite busy and we have developed a research page that all members can access that has empirical research on there and also some tools that could be used, multiple resources on there.

We also had a webinar to introduce the task force to the members-- of course the purposes and the charter. We also recently published an editorial in the JCO JOP talking about the impact of COVID on burnout, moral distress, and the emotional well-being of the oncologists. And that actually has multiple useful interventions that the organization might consider as well. And we just conducted a focus group study that is currently under peer review of the oncologist experience, both the personal and occupational experiences during the COVID pandemic, what is that oncologist going through.

So very busy. Again, in our infancy, we have lots of plans to hope and look forward to all of these endeavors, and of course, your feedback on it. We are here to help and serve you, and we are very grateful to ASCO leadership for giving us this opportunity to advocate for the oncology team.

DANIEL MCFARLAND: Can I just say one other thought that I had? When we were talking about the interventions, I was just going to say that one way that I think about the interventions that might be helpful is that there are some interventions that are sort of pulling the clinician away from the work environment, whereas others are having the clinician kind of engage more strongly with the work environment or in a different way. And the latter seemed, obviously, to be a little bit more effective or makes sense, because we've all had that feeling of being on vacation and you go back and it's the same thing. And so I just wanted to add that that's just another way of looking at the interventions.

I always talk about this study that was done in Oregon like 20 years ago, because it was so genius that what they did was they basically-- it's a group of five different community oncology practices. They got together and they said, OK listen, burnout's a problem. We're measuring it. You guys figure it out, and we're going to remeasure it.

And the beauty of it was that it addressed what some of the problems of burnout are-- feeling like you're in control, and then kind of having that engagement part where you're engaging with whatever you're creating to mitigate the burnout. And thirdly, it brought the oncologists together. So they had to figure it out in their own way and what made sense for them. And in my mind, that's the perfect solution. And it does help bring administration and clinicians together, because ultimately, we do all care about the same thing.

FAY HLUBOCKY: It's a great example of peer support, Daniel. We always talk about peer support. And I think a lot of folks say, what does that look like? Is that a group thing? And exactly that study of getting everyone together to talk about it-- how can we make change, how can we improve burnout at our organization-- is critical. That's why it really-- it can't just be leadership alone, and we need physician champions. We need lots of folks involved in the process to ultimately improve the quality of cancer care at that institution, and I think honestly nationally and globally. That's kind of what I think even our task force is about.

TODD PICKARD: Oncology is a team sport. We're all in it together.

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TODD PICKARD: Exactly. If we're taking the patient's care in all of our hands, well then we all have a responsibility for preventing burnout and backing each other up and talking about this and being that trusted person to be that barometer. So it's a team sport. No person stands alone.

FAY HLUBOCKY: Yeah, and the oncology clinician is the most compassionate clinician, I think, out there. Truly. Of course, I have a little bit of bias there. But truly, my colleagues are the most compassionate, kindest people, people I just love being around. But it's so tough to show self-compassion isn't? We're great at giving compassion to others, to the suffering, but to self that tends to be a little bit more difficult. So that's why we have to help all one another, as you said.

TODD PICKARD: Well, this has been a terrific conversation. So thank you Dr. Lavasani, thank you Dr. Hlubocky, thank you Dr. McFarland for your engagement and conversation today. That is all the time we have. But we thank all of our listeners today for listening to this episode of the ASCO e-Learning podcast. To keep up to date with the latest episodes, please click to subscribe and let us know what you think about the podcast, leave us a review, or email us at elearning@ASCO.org. Thanks so much, everybody.

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SPEAKER: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In this episode of the ASCO Education Podcast, moderator Todd Pickard, MMSc, PA-C (MD Anderson Cancer Center) speaks with Drs. Daniel McFarland (Northwell Cancer Institute), Sayeh Lavasani (City of Hope), and Fay Hlubocky (University of Chicago) about individual and institutional interventions to prevent and address burnout among oncology professionals.

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Air Date: 6/16/2021

SPEAKER 1: The purpose of this podcast is to educate and inform. This is not a substitute for medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

SPEAKER 2: This is the first of a two-part episode on burnout in oncology. Stay tuned for part two of this conversation launching June 30, 2021.

TODD PICKARD: Hello, and welcome to ASCO's podcast episode focused on burnout in oncology. The prevalence of burnout among oncologists and other health care providers that care for oncology patients has been increasing in recent years, bringing along serious implications for personal well-being and professional satisfaction. My name is Todd Pickard. I'm an oncology PA at the University of Texas MD Anderson Cancer Center.

I'm pleased to introduce our three guest speakers today. Dr. Fay Hlubocky is a clinical health psychologist and research ethicist at the University of Chicago Medicine. She's also co-chair of the ASCO Oncology Clinician Well-Being Task Force and has extensive research experience in burnout.

We're also joined by Dr. Daniel MacFarland, a medical oncologist and consult liaison psychiatrist specializing in head and neck thoracic malignancies and psycho-oncology at Northwell Health Lenox Hill Hospital. He has conducted research on empathy, resilience, and distress in trainees, and edited an upcoming Springer book publication entitled Depression, Burnout, and Suicide in Physicians.

And finally, we are also joined by Dr. Sayeh Lavasani, a medical oncologist specializing in breast cancer and an assistant clinical professor in the department of medical oncology and therapeutic research at City of Hope. Many oncologists around the world are struggling with burnout, but the topic is rarely openly discussed. We are excited to launch a discussion of causes and signs of burnout, as well as proven tools for the prevention of burnout that our listeners may apply in their own daily lives.

Welcome, all. I look forward to this interesting conversation today. Dr. Lavasani, can you tell us about your personal experience with burnout during your training and professional life? And then, how has the pandemic affected your experience of burnout?

SAYEH LAVASANI: Sure. First, I want to thank you for having me on this podcast. I noticed the symptoms of burnout when I was an internal medicine resident and had to do 30-hour shifts covering the ER, admissions, the internal medicine service, code blues in hospital, et cetera. It was a challenging time. I had a young child and [INAUDIBLE].

I would try to relax and meditate. And the peer support at that time was critical. All residents were very close to each other, which, I believe, can be the best strategy to overcome burnout during training. When I was going through my fellowship, things were definitely better and my calls were all home calls. And then I started to work as an attending.

Initially, I was under the impression that things would be easier, but I realized that my job is still very stressful but in different ways. I'm fully responsible for my patients and treatment decisions I make for them. Patients and their families are under tremendous amount of stress. We need to provide them with support and give them the strength to help them to go through treatment.

I felt multiple times that this is overwhelming for my health and well-being. I experienced burnout as a [INAUDIBLE] oncologist when I was in the process of moving to my current position, which required moving from East Coast to West Coast, moving and settling in there. Very stressful.

And then, this month actually marked the one-year anniversary of the start of the COVID-19 pandemic and the subsequent restrictions and lockdowns. It was an exhausting and challenging year for everyone, especially the health care community having countless number of meetings, integrating telehealth into our practices, fear of contracting COVID and spreading it to our families.

When I look back at this past year I have experienced fear, disappointment, but at the same time resilience and hope. I feel that like I learned a lot. We learned how to fight a pandemic. I personally learned to appreciate my health and time with family. I learned how to use small things during my day to cope with stress better. This has been my experience so far.

TODD PICKARD: Thank you for sharing that. COVID-19 has definitely added to the stress and burnout that many of us face. So thank you. It's a very common experience for many of us. Dr. MacFarland, would you like to share your personal experience with burnout? And has your approach to preventing or dealing with burnout changed over the course of your career? And if so, what's working well for you?

DANIEL MACFARLAND: Yes, thank you very much. I am delighted and honored to be here with everyone today and to share my story and our mutual interest in burnout and hopefully help some people along the way. Being that I had trained in two disciplines, medicine and psychiatry, I became very interested in burnout mostly as a result of having undergone supervision in psychiatry.

And then similarly to what Dr. Lavasani was saying, seeing the intense training conditions of the residents actually, once I had become a fellow, and it made me think back to a lot of the principles that I had learned undergoing supervision in psychiatry, meeting with the psychoanalysts. At that time, I was in Chicago, go down to Michigan Avenue and have these talks all about me, what my experience was in dealing with patients and life and the things that would trigger emotion for me, et cetera.

And I really felt like, I wish everyone could have that experience. And it almost made me sad or angry that people didn't and-- because once I became a fellow I saw that the residents actually were dealing with the sickest patients on the wards, talking to families, breaking bad news, and the look in their eyes.

Maybe my residency was rather cushy, I don't know. It was a little bit more intense where I trained for oncology fellowship. So I had started a program of research there to look at the empathy of resilience and distress. And I think stemming from that I got interested in burnout because there are these conceptual ideas that are all overlapping.

And, for me, it started from this idea of, how does the patient environment affect the clinician? And, thankfully, we're at a point where we-- you said at the beginning that we're not talking about burnout, but we are talking about burnout. We're talking about it right now. And the conversations are ongoing, are increasing, becoming more nuanced, in depth. And it's actually a really exciting time.

And not that long ago this was off limits, to really explore this area. And I think it's exciting and I think there's definitely hope. In my research, and I mentioned this book that we have coming out, et cetera, when you look back these things are not new, in a sense. There's always been this underbelly of medicine.

And the stoicism that was pretty much the only kind of working way to move through it, like sort of put up or shut up, frankly, which didn't work for a lot of people, and now we have an opportunity to make it better. And so it's so exciting.

So in terms of answering your question, it was really at the beginning an academic interest, I suppose. On a personal level, I will tell you that many of the things that you read about with burnout I've certainly experienced in practice seeing a lot of patients, that feeling of cynicism, this isn't working, losing the motivation, this is somehow losing the meaning, which is distressing.

Certainly cases of moral distress are challenging and you can bring it home. And even as a psychiatrist where you're trained not to do that, it happens. And we see things in oncology that they don't see as much in psychiatry. So how do you figure that out with the help of our palliative care colleagues, et cetera, is really important.

I noticed when I started practicing, for example, and it was a very busy practice at first, that I would use humor in a way that wasn't normal for me. I'm a somewhat funny guy, I suppose, but it was a little too much. And I knew that. One day I sat down, I said, this isn't me. Nothing atrocious. It happened. I don't know. Maybe I turned someone off. I don't know.

But it was this little light bulb in my head like, something is different. And I just thought, OK, of course. I mean, I'm the attending now, I'm seeing-- these are my decisions, this is weighty, heavy stuff, a lot of patients are not doing well. Many patients were doing well, which is great. But you see what I'm saying. So, wow, it happens. It happens to all of us. And, yeah, that was the biggest thing.

The other thing, having different, disparate interests has been challenging. A lot of what burnout stems from are systemic issues, are personal issues. How do we interpolate ourselves into the systems in which we work? Having interests in medicine and psychiatry, that's not easy. And so I've had to step back, reflect, take some life changes here and there, which I think, for the most part, has actually been quite beneficial.

So you asked, what are the things that I'm doing to help with burnout? Those are a couple. I would say the last thing, we're always told to eat well, do yoga, exercise. I do feel like I understand why we need to do that a little bit more, and that's what's helpful about learning about burnout because some of these-- you get burnt out learning about all the things you're supposed to do for burnout.

But if you understand the reasons why, and we'll probably talk about the data a little bit later, it's really helpful. So, I'd say a new approach to my personal burnout prevention regimen.

TODD PICKARD: I agree. I am encouraged by the fact that we're having more of these conversations. And our training is really an intense, intense time. I wish 25 years ago when I went through my training that it was encouraged to talk about burnout, because back then it was not. So you simply suffered in silence, put up, shut up, keep coming, and do what needs to be done.

So I'm very encouraged and grateful that we're having this conversation. We've talked a lot about burnout, but, Dr. Hlubocky, how is burnout defined? Many people, we all think what it is, but help us. What's the definition?

FAY HLUBOCKY: Oh, thank you. It's such an honor and a pleasure to be with my esteemed panelists here, and especially with all of you ASCO members to talk about your well-being. That is our priority at ASCO.

So burnout actually is an empirically driven phenomenon and it's been formally defined recently by the World Health Organization as an occupationally related syndrome that results from chronic workplace stress that hasn't been successfully managed. And there are three dimensions, or three signs, that are apparent.

It's a feeling of physical and emotional exhaustion, it's a feeling of cynicism and pessimism, and a decrease in professional efficacy. The clinician feels like they're not as efficient as they should be. Now this is the hard-working physician. It actually starts with several stages. The phenomenon is actually not new.

It was first described by Herbert Freudenberger, a psychologist in the 1970s, who noticed his colleagues on the inpatient mental health wards going through this phenomenon, this state of exhaustion and cynicism and reduced professional fulfillment and efficacy. And it's been done, well described now in the research by industrial organizational psychologists, like Christina Maslach, and more formally driven with empirical research and instruments that have been developed.

And then now in the clinical setting, in specifically oncology, we have a lot to thank Dr. Tait Shanafelt because he was probably one of the first ones to really describe it in oncology and in oncology physicians as to what-- so it certainly is not new. It's not just a bad day. It's not just being stressed out. This is a chronic, insidious process that we really have to prepare clinicians for, whether they're junior clinicians, to say this is going to happen, to be prepared for it.

And I really appreciate Dr. MacFarland's talk about psychiatry and psychology. We are almost a little bit more prepared for that. I think a lot of our supervisors tell us, you better watch out, you're going to be dealing with a lot of sick patients that are undergoing a great deal of suffering. Both he and I are in psycho-oncology so we work with the cancer patient and the mental health aspect as well.

So there was always this kind of supervision, making sure that you were OK. And, unfortunately, I think the COVID pandemic has afforded us an opportunity to have an open discussion, to reduce the stigma around burnout, that this is simply OK. It is right to talk about your well-being, that it is important to talk about your well-being in the long run.

TODD PICKARD: That's really helpful. I'm also curious, we've also heard the term of moral distress. Dr. Hlubocky, Dr. MacFarland, how do you differentiate burnout from that concept of moral distress? How are they different? Are they interrelated? Are they completely independent?

FAY HLUBOCKY: So I'll take the first stab, I guess. So actually, the research, it says that either moral distress precedes burnout or that they can co-occur. It depends on what literature you're looking at. So we're all distressed. The individual is in an environment where they know what is the moral action, the right thing to do, but because of the environmental constraints around they are unable to perform that duty.

And certainly, if there is an extended period of moral distress, certainly that can lead or be correlated to burnout. And the research is very clear. There have been some initial research and hematologic malignancies we've seen that Dr. Shanafelt was a part of. So both very important.

And especially you being an ethicist, it's incredibly important for us to recognize that that phenomenon can co-occur and actually even precede burnout. So as a community, we have a responsibility to recognize the ethical implications that burnout really does bring. Daniel, I'm curious as to what's your perspective.

DANIEL MACFARLAND: Yeah, great. I agree completely. I generally would look at it as burnout's a broader umbrella term, and that moral distress has both moral and distress-- moral implications of certain situations. The ways in which they're similar, a lot of the moral distress, as Fay was saying, come from being in a position of where your power is undermined or your autonomy to make decisions is undermined.

And obviously that is tough across the board, causes distress and even-- in terms of health inequities, you can look at how much locus of control you have, predicts your health. They go hand in hand. The other thing about the moral distress is when you're making the decisions you're less likely to be distressed about than when it's other people's decision.

So a lot of this actually comes out of the nursing literature about moral distress. But at the same time, there's the idea of moral success and moral climate. And so all things moral. So it's, again-- there are a lot of ethical implications to burnout, but it's more that burnout exists, the implications of burnout leading to worse patient care, worse quality of life, and all those other bad things.

But this is really about specific situations. And as it happens with, I think, ethical situations, the more that they're discussed, brought up, different perspectives are evaluated, the moral distress can recede. So the solutions are different. That's the solution for moral distress. And for burnout it's a little bit more amorphous. That may not be exactly what you would need if you were burnt out.

TODD PICKARD: Yeah, that's really interesting because I can't think of anything that would add more to my sense of burnout than knowing the right thing to do and feeling disenfranchised from doing that. That would be really difficult and would really cause additional stress and anxiety.

And so I can see how they're related. But, Dr. MacFarland, how do you know when burnout's starting? What are the signs? What are the symptoms? And then what happens if you don't address your burnout?

DANIEL MACFARLAND: Great questions. I think we have seen burnout in other people, and it may be easier to recognize the burnout in others than it is in ourselves. It goes without saying. I would be most inclined to pay attention to those subtle, automatic thoughts, if you will, that start-- as I was describing earlier, that's really the beginning of it.

And looking at variations of the sort of pattern of yourself, and-- I mean, the definition of burnout is emotional exhaustion, cynicism, depersonalization, this idea of personal accomplishment. But all of that is vague. In any given day you could have a little of this, a little of that, that kind of stuff. There is a general barometer, I suppose.

And I think this is one of the challenges of working with burnout is it's not going to get to zero. Where is that level that's good enough? It's hard to say. So in terms of identifying when you're having burnout, I think even, as I mentioned, sort of tongue in cheek, but even talking to colleagues, having that conversation about it is, how do you think I'm doing? I don't know. That might be a little too much.

But looking a little outside yourself, so look at your patterns, like, well, why am I showing up to work 20 minutes late every day, what's going on? Trying to take a look at something a little deeper to those behaviors. And I think it's an iterative process, in that regard. Maybe change one thing here, one thing there.

And so to get-- there was a second part to your question. The first was about signs and symptoms of burnout, and the second part was-- what was it exactly, Todd?

TODD PICKARD: What happens when you've got burnout and you don't do anything about it?

DANIEL MACFARLAND: Oh, boy. OK. Great question. If you were to ask me the same question about depression I would tell you that the general course of depression is nine months, hauling through it for nine months, don't do any therapy, don't take any medications, you've got about a year of suffering. I don't know that that's true with burnout.

I think burnout really is a relational concept between a worker and the workplace. And that's a way that it's different from depression, because symptom-wise they can look very similar. So the other thing would be all of the bad consequences of other entities that are associated with burnout, namely depression, anxiety. We're talking about issues with relationships, that these are your crucial support systems.

We're talking about your job, your work, your calling in life being compromised. And as has been alluded to, these symptoms can start early in one's career, even in training. And that's why they are so important to address, because it's a time when we want to be putting our best foot forward and burnout doesn't allow for that to happen.

So the consequences are myriad. It's you name it. Almost anything bad. Right? That's the short answer.

TODD PICKARD: I really like, and it resonated with me, when you mentioned using a trusted individual as a barometer to check yourself. But it also seems that having that trusted person that you could even talk about it with might be a way of preventing or supporting or addressing burnout. So I really like that idea of somebody that you can trust and check in with.

So, Dr. Hlubocky, how does this show up at work? What are those work-related and personal risk factors that can make us really susceptible to burnout and depression? How does our practice environment, what's its role and our risk for burnout?

FAY HLUBOCKY: Yeah. Well, first I'll speak a little bit historically what research has identified as what are some of the individual and the organizational risk factors. So originally and historically a lot of research and studies have confirmed that it was the single, the unmarried, mostly female, junior clinician, the very type-A personality, very dedicated to one's job, not knowing when to set boundaries, very much dedicated to patient care, potentially the community oncologist, for example, that was the person most prone and at risk for burnout.

But also, now we have identified that it affects actually everybody at every point in time in their career. So although females may present with exhaustion, males present with a great deal of cynicism. So those kind of earlier research has really changed. And the COVID pandemic, in particular, we'll have to see years from now, but the research that's in its infancy it says that the sense of loneliness, the fact that the oncologist really misses their colleagues, their patients, even the family members, that isolation that they have had to undergo as a result of caring for potentially COVID-positive patients, that is quite challenging individually.

But more so, we really need to focus on the organizational risk factors. And historically it's been those, of course, long hours, working with seriously ill patients, increase in administration time, the limited autonomy and independence and lack of control over the daily responsibilities that a lot of clinicians-- and the increase in the EMR, that really takes away from that clinical encounter.

Why did so many of us become clinicians? Because we loved our interactions with patients. But yet, now we're more beholden to the EMR, into the computer, and doing all this administrative work. So certainly research has shown that almost more now recently, within even the past five years, that the organization, and that environment, that culture, it's important to change. It's important.

Burnout is reflective of the practice help. You won't have a burnout physician if the practice is supportive in a way. And that's not to beat up at all on administration or leadership. I work with tons of leaders that want to help their colleagues, they just don't know how to. So it's important to encourage both the individual clinician as well as for the system to change.

So important to optimize our clinical environment, really to change that culture, the infrastructure, the resources, the EHR. Scribes, for example, have been used in some practices as a support and really reducing the stigma associated with burnout and any mental health issues that may arise as a result of unaddressed burnout. So many colleagues are frightened to report that they're having an issue, that they might be judged, that they have to report it to their state boards. We really, really have to come together as a community to optimize oncology care and optimize well-being for the oncology clinician.

TODD PICKARD: Absolutely. This is a great tie-in to the environment of care that we work in, the systems that we work in. So I'm very curious, Dr. Lavasani, are there any burnout prevention strategies that your institution, or your practice, is using?

SAYEH LAVASANI: Yes. We have a well-being committee at my practice that meets once a month. We have access to an external psychiatrist, counselor, and also an internal psychiatrist. She also sits on the well-being committee. All physicians that are multiple activities that we can attend to like [INAUDIBLE] parties.

And there's also Zumba and yoga classes over Zoom that, twice a week, that we can participate. And there are also support sessions using mindfulness to recognize, reduce stress. And we have also annual medical staff survey about burnout and stress.

TODD PICKARD: It's great to hear that your practice and institution is taking some steps to support their providers. That's great. Well this has been a terrific conversation. I really enjoyed it. I feel that I've learned a lot from all of you. So thank you, Dr. Lavasani. Thank you, Dr. Hlubocky. Thank you, Dr. MacFarland, for your engagement and conversation today.

Unfortunately, that is all the time we have, but we thank all of our listeners today for listening to this episode of the ASCO eLearning podcast. To keep up to date with the latest episodes, please click to subscribe and let us know what you think about the podcast. Leave us a review or email us at elearning@ASCO.org. Thanks so much everybody.

SPEAKER 1: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive eLearning center at elearning.asco.org.

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In this Social Determinants of Health (SDOH) episode, Dr. Randy Vince (University of Michigan) moderates a talk with Dr. Robert Winn (VCU Massey Cancer Center) and technology innovator and cancer survivor, Sylvie Leotin (Equify Health) on solutions for rebuilding patient-provider trust and communications, with insights from the clinician and patient perspective.

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Air Date: 6/9/2021

TRANSCRIPT

[MUSIC PLAYING]

LORI PIERCE: Hi. I'm Dr. Lori Pierce, president of the American Society of Clinical Oncology. Thank you for tuning in to this discussion on social determinants of health and their impact on cancer care. The purpose of this podcast is to educate and inform. It is not a substitute for medical care, and it is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere. I have dedicated this vision to my term as ASCO president.

These conversations bring many voices to the table, voices that we need to hear in order to move forward and find solutions. We hope you learned new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look like, receives high-quality, equitable cancer care. Thank you.

[MUSIC PLAYING]

RANDY VINCE, JR.: Hello, and welcome to the sixth episode of the ASCO Social Determinants of Health series. I'm Dr. Randy Vince, Jr., a fellow of urologic oncology at the University of Michigan. Today, I'm joined by Dr. Robert Winn, the director of the Virginia Commonwealth University Massey Cancer Center, and Dr. Sylvie Leotin, who is a technology innovator, cancer survivor, and a recent recipient of a $750,000 Health Equity Innovation Award.

This series is part of a new initiative proposed by ASCO president Dr. Lori Pierce, focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer, inspired by Dr. Pierce's presidential theme of equity, every patient, every day, everywhere. During the fifth episode of this series hosted by Dr. Smith-Graziani, there was a deep dive into the impact of structural racism on medicine, both historically and contemporarily.

As a country, we find ourselves at a point of inflection. Many citizens and health care providers are starting to grapple with the fact that both interpersonal and structural racism impacts various aspects of our daily lives. As health care providers, it is imperative that we understand this history and how this affects our patient-provider interactions. To build on episode five, we will discuss the importance of patient-provider relationships and eliminating cancer disparities.

So the first question goes to you, Dr. Winn. I know you have made community engagement an essential pillar at the Massey Cancer Center with the goal of reducing and ultimately eliminating cancer disparities. This initiative is a critical step. But many times when we discuss social determinants of health, we talk about factors outside of the health system. But I'm wondering if you can comment on how patient-provider communication influences cancer disparities.

ROBERT WINN: No, absolutely, and thank you for that. And I think that the work that's happening at the ASCO right now is just outstanding. I wanted to actually also go back to making sure that we don't conflate individual needs with social determinants of health, because there sometimes is muddying of individual needs with social determinants.

And I want to make sure that as we talk about it, and through the lens of social determinants, that we understand that that's built on structure. And part of that structure is the doctor-patient communication, but also the medical community's communication to communities, which is frequently very one direction.

And even when we talk about being patient centered, frequently we don't have the patient at the center of our discussions. It becomes almost this very colonial-like— but benevolent colonialism, right? It starts from a good place. But it becomes this very benevolent, colonial flavor to it where we're talking for people, we're talking at people, but we're not talking with folks, nor with communities.

And so I think that to keep my answers short, we are going to have to, as a health profession, have a little bit of grace and a little bit, just a touch more of humility to understand that where we have— although well meaning, and certainly we're armed with knowledge, but they are too in communities.

And I'll end with saying that while we also talk about our patient-centered approaches and communities as being illiterate— health delivery system illiterate or scientifically illiterate, they'll remind you that we are, too, illiterate. And so trying to talk at people in this unidirectional way will give us some results, but not the best results. And I think there's many more, much more productive results to come if we have a little bit more humility of making sure that we are not just engaging but involving community.

RANDY VINCE, JR.: So the next question I'll pose to you, Dr. Leotin. First, I'll say this. You have an impressive background that spans multiple disciplines. And so I have a two-part question for you. First, with your expertise as an innovator and your personal experience as a cancer survivor, I wonder if you can share your thoughts about what can be done broadly to improve cross-cultural patient-provider interactions.

And the second part of the question is, you were recently awarded a large grant to collaborate with Emory School of Medicine. Can you share some information about your project and the innovative solutions you're developing to help reduce cancer disparities?

SYLVIE LEOTIN: Thank you for your question, Dr. Vince. First, I would like to stress, [INAUDIBLE] the patient first, that cross-cultural patient-provider communication is worse than many health providers imagine. And this directly affects disparities. There was a recent study, as an example from Genentech, that showed that 50% of Black, Latinx, and LGBT patients have delayed or discontinued their care because they didn't feel understood by their providers.

So second, to answer your question, I agree with Dr. Winn, and I applaud your leadership in transforming community engagement. As you said, I think that it's also part of the solution. I think that another part of the solution is really improving patient-provider relationship inside the hospital. And I see that a lot of providers are not looking at this when, as a patient, I can tell you that it is really an essential component of reducing disparities. And I'm going to try to unpack that.

So we talk about trust, we talk about mistrust, and we talk about patients needing to trust the health care system. But we have to realize that trust is a two-sided process. And it's not incumbent upon the patient to trust the health care system if the health care system keeps perpetuating mistrust. So my position is really that providers need to step up.

As Dr. Vince was so eloquently saying, they need to step up to inspire trust. And more than inspire trust, they have to stop fueling and perpetuating mistrust in their day-to-day interactions with patients. So I think that the providers are not equipped today to build trust and have good relationships with cross-cultural or racially discordant patients. I don't see this taught in medical school, and I don't see it in continuing education today.

So people will tell me that now we are starting to see anti-bias trainings and why this is a positive thing. I do not think that these trainings are sufficient to really have an impact on the patient experience of Black and Brown patients. I think that we need something that is a lot more practical, a lot more pragmatic, experiential, and, as Dr. Winn was saying, patient centered to really transform cross-cultural patient-provider relationships, which leads me to my grant.

So I'm happy to share that I recently won a $750,000 Health Equity Innovation Grant from Genentech in collaboration with Emory School of Medicine. And the grant is going to fund some research with Black patients and oncology providers at Emory Winship Cancer center, but also at the Grady Hospital in Atlanta. And we are also going to pilot an innovative training, which I designed, which is going to help improve cross-cultural patient-provider communication.

This training is coming from my background as a multicultural cancer patient, but I also have 20 years of experience in innovation and in human-centered design. And before I got cancer, I developed a model that is really the underpinning innovation about this training that will really give providers an experiential understanding of what it's like to be a Black patient in the health care system. So I'm not going to take the whole time.

RANDY VINCE, JR.: No, that's amazing. That's amazing. Thank you. And I'm looking forward to seeing the research that comes out of this and really provide some useful techniques for providers to implement in their daily interactions with patients. So I'm definitely going to be looking out for that, Dr. Leotin.

For my next question, I'm going to pose it first to you, Dr. Winn. And then, Dr. Leotin, you can weigh in on this as well. So we know that the history of structural and interpersonal racism can influence these patient-provider interactions. And so I wonder if you can provide thoughts on how, specifically, providers can establish a trusting relationship with their patients of color, given that this history we just discussed is so ingrained in so many of our daily interactions.

ROBERT WINN: Yeah, I think on the practical [INAUDIBLE] patience matters. And I mean that. So I think this is where, sometimes, well-meaning physicians get very frustrated, that they will say, well, I've been decent to you, and I've been pleasant to you, and I'm not getting your trust. Martin Luther King once said it best when he says, let's not get decency confused with equality.

And there is a level where just because you're decent, doesn't mean that you're building trust. Decency should be expected as a health profession. So I'm sometimes confused when people say, well, I've been nice, and I'm trying to be nicer. What does that mean? So it goes beyond just decency.

So trust is built up over time, number one. And I think I heard it once best from one of my mentors who says, trust is gained drop by drop by drop. But trust is lost, and when it's lost, it's lost in buckets. And I'll say that there's been reasons why we need to have more patience as health professions to understand that just because you've been good to someone for a year or two years, doesn't gain their trust. It may actually gain you some decency back, but that's not the same as trust.

So I'm going to say that people want me to give them a protocol because, as academics, everything is protocolized, right? And they want me to give them a protocol for, how do I build trust? And I'm going to tell you the following, that your mom and your grandmother probably taught you this a way long time ago.

Be nice. Have grace, have humility, and patience. Show up and show out every time. And do it whether there's— whether you feel that there's being trust built or not. Do it anyways. And if you do it anyways just because it's the right thing, over time you'll get people and communities' trust.

RANDY VINCE, JR.: Dr. Leotin, your thoughts?

SYLVIE LEOTIN: So I really love this answer. I would like to add my perspective because in the training that I'm developing, and I will be piloting at Emory University, we are addressing some of this from a different vantage point. I'm a patient. I'm an innovator. I'm not an MD, so I think differently.

And my belief is that in addition to what you were describing, Dr. Winn, there is an element of empathy and cross-cultural empathy that is often missing. And this is not about the health care industry. This is our society at large. And I think this is happening because we have a hard time taking the perspective of someone else without projecting our own projections, filters, biased assumptions on top of them and thinking, oh, this is what I would do if I were them, instead of really what it's like to be someone else.

And I love this quote from Harper Lee that said, you never really understand a person until you consider things from their point of view, until you crawl under their skin and walk around in it. So I developed a training to actually do this in a simulated environment. What I'm seeking to do is to give this really groundbreaking perspective to providers on what it is like.

What does it feel like at the visceral level to be a Black patient in health care undergoing and constantly facing biased interaction? And I think that until we really understand what it's like, it's hard for us to fix it, because racism and bias— they operate below the level of our consciousness, many times. And yes, I'll stop here. I'll say more later.

RANDY VINCE, JR.: Yeah, yeah, but I'd like to build on that a little bit. Because I know many of you have spoken prior to recording this podcast, and you said that in your interaction with many other Black oncology patients, there was often a feeling of being unheard or feeling dismissed by their providers.

We often talk— and Dr. Winn mentioned this earlier— about illiteracy when it comes to health care information. And often, people cite health insurance as a barrier to health equity. But we know that a lot of these disparities exist even in insured, educated patients. And so I wonder if you can share some thoughts on why you think this disparity exists, again, even when Black patients are insured and well educated, like yourself.

SYLVIE LEOTIN: Yes, I'm glad that we're making this point today. I personally interviewed several— many— Black patients with cancer. And I have to tell you that all those people had insurance. Many had great insurance. Many were educated. And they were still experiencing disparities in cancer care. And I would like to give you some concrete examples.

So there was a woman that I spoke to with stage II cancer. She stopped to take a hormone therapy drug because she didn't know what it was for, and the side effects were bothersome. The oncologist had not even explained what this drug was for, and he had been so disrespectful in their interaction that she never wanted to speak to him again. What happened a few years later is her cancer metastasized.

I spoke to another Black woman who complained of migraines and headaches for two years. The doctor dismissed her and said that, it must be stress. Your work is stressful. It became really bad, and one day she had a colleague at work who told her, did you get the blood test? So she went to get the blood test, and she found out that she had advanced melanoma spread to multiple spots in her body.

There was a Black woman that had, also, breast cancer, who was given a choice between a lumpectomy and a mastectomy. But she wasn't able to get the pros and cons from her surgeon, who was really rushing her to make a decision without information. She decided to take a mastectomy because she was thinking, oh, I'm going to be done faster, and I won't get to do chemo.

Well, after she got a mastectomy, she went to see a medical oncologist. And the medical oncologist ordered an Oncotype DX type test. And it turned out that she had to do chemo. So she was really mad at herself for not answering her question and rushing her into surgery. She felt that if she had been a white patient, she wouldn't have been treated that way.

Fast forward several months, she goes into chemo treatment, and she had many problems. She told me that they didn't want to give her a port for chemo. They said that she had good veins and she didn't need a port. She kept complaining, and nobody listened to her. Those are the stories that are happening. I had my fair share myself.

I'm an Ivy League-educated Black woman. I have four degrees. And I had an instance, I had a core breast biopsy. I was miserably butchered by a barbaric radiologist. He took so many, so many, an insane number of samples on me. And it was the equivalent of getting a lumpectomy without anesthesia. I had horrible post-surgery complications, and many other stories I will share in my book, which I'm finishing and should be published at the end of this year. But as you can see, it's not pretty.

RANDY VINCE, JR.: Yeah, thank you for sharing those experiences because these stories need to be told more because we can learn from them. And really, these stories constantly need to be promoted so we can make progress. So in closing, Dr. Winn, I'm going to post this last question to you. And I just wonder if you can provide your thoughts on how, collectively, a combination of better patient-provider interactions as well as community outreach can help reduce cancer and other health disparities.

ROBERT WINN: Yep, just quickly, I think, again, all data, great and small, is valued in my world. Why community? Because I think that the community— by being honest, by having the humility, by actually doing things differently, we'll be able to better serve our communities because they will give us some better information to help us literally refine our approaches and maybe even refine our questions.

The other thing I would actually add is that we have an obligation to not just— to really serve the community. It also means we should be thinking about, how do we actually have them not at the table but gainfully employed if we want to build trust?

So how do we do it? I think by totally, really engaging with the grace and humility that I know we're capable of, I think we will move the next 50 years— as we have the first 50 years as NCI-designated cancer centers, the next 50 years, I think, we'll do even better because we'll take the community along with us on the ride. As opposed to actually doing things to them, we'll start doing things with them.

RANDY VINCE, JR.: Absolutely. That was a great answer.

SYLVIE LEOTIN: Can I just add something?

RANDY VINCE, JR.: Sure, really quickly.

SYLVIE LEOTIN: Yes, I think that in addition to— in collaboration with talking to the community, I believe that the training that I'm building is going to equip doctors to be a lot more efficient in their conversation with communities. So it's both inside and outside the hospital.

RANDY VINCE, JR.: Great. Thank you. So this conversation has been incredibly enlightening. I want to thank both Dr. Winn and Dr. Leotin for being with us today. So as we conclude, I think it's important to say that while conversations like this are vital to impacting change, words alone won't bring about a kind of change that's needed. So it's of the utmost importance that we all back our words with actions and really engage the community and engage with our patients.

So I want to thank everyone for joining us on this episode of the ASCO Social Determinants of Health series. To keep up with the latest episodes, please click Subscribe below. Let us know what you think about the series by leaving a review or emailing us at professionaldevelopment@asco.org. That's all one word. And again, it's professionaldevelopment@asco.org. Also, to access any sources mentioned on the show or to read on Dr. Leotin's recent grant and her company, Equify Health, please check out the show resources.

[MUSIC PLAYING]

LORI PIERCE: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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Dr. Demetria Smith-Graziani (University of Texas) moderates a discussion with Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll (University of Washington) on the historical and structural reasons for patients’ mistrust of the healthcare system due to systemic racism in medicine, with insights from both the clinician and patient perspective.

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Air Date: 5/27/2021

TRANSCRIPT

LORI PIERCE: I’m Dr. Lori Pierce, the President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care. The purpose of this video is to educate and inform. It is not a substitute for medical care, and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed an ASCO position or endorsement. For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individual – Every Patient. Every Day. Everywhere. I have dedicated this vision to my term as ASCO president. These conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look, receives high quality, equitable cancer care. Thank you.

DEMETRIA SMITH-GRAZIANI: Welcome to the fifth episode of ASCO Social Determinants of Health Series. I'm Dr. Demetria Smith-Graziani, and I'm a clinical fellow at M.D. Anderson Cancer Center. I'm joined today by Ericka Hart, an activist and sexuality educator, and Dr. Kemi Doll, a health equity researcher and gynecologic oncologist from the University of Washington.

This series is part of an initiative proposed by ASCO President Dr. Lori Pierce focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer. Inspired by Dr. Pierce's presidential theme of equity every day, every patient everywhere, in this episode, we'll discuss the historical and structural reasons for patients mistrust of the health care system due to systemic racism in medicine within the clinician and patient perspective. So it's important to know that race is a social construct that continues to affect the health of marginalized populations. We have laws and practices that date back to chattel slavery, and clinicians really need to understand each patient's identity within the appropriate historical context in order to provide optimal care and engage in meaningful research to improve outcomes.

The health care system has not proven itself to be trustworthy in the past. It's still not trustworthy today. And there's a long history of institutional discrimination against racial and ethnic minorities, sexual and gender minorities, people with disabilities, and other marginalized groups that continues today and affects the patient-provider relationship. We'll focus today on anti-Black systemic racism within health care, and this will provide a foundation that we hope will encourage further discussion about other forms of discrimination within health care.

Thank you both so much for joining me today. We'll start with the first question, and that's that conversations about trust and health care among the Black community are usually centered around the Tuskegee study of untreated syphilis in the Negro male. But there are many other instances of clinicians and researchers engaging in unethical medical neglect and experimentation on African-Americans. So what other historical and current events should clinicians know about and what resources should they be using to stay informed? And we can start with Dr. Doll.

KEMI DOLL: SURE. So I think history is vital because without understanding our history, it's very hard for us to make sense of what's happening around us. And I think that the US study of untreated syphilis is-- in many ways, a medical education obscured the contemporary racism and the contemporary exploitation and mistreatment of Black people in the health care system. And so my first-- in terms of what else do people need to know-- is that they need to know that horrors as terrible as the syphilis experiment continue today all the time. I don't think you have to look far to find these incidences.

I will point out Dr. Susan Moore, a Black woman doctor, who died just a few months back being mistreated in a hospital system in the region where she practices and could not get care to the point where she was able to verbalize, I'm going to die. Because I am being mistreated, I'm not going to make it, and she didn't. So I want to gently remind us that to have to pull back to the syphilis experiment is demonstrating a willful not seeing, a willful choice not to see what's happening to us every single day.

The other thing that I would say for clinicians or researchers that want to stay abreast is that everything impacts health care. So the current trial of Derek Chauvin right now for the murder of George Floyd is an example of racism and how we value Black life. And so we need to understand as clinicians that when you walk into a room-- and now thinking about the oncology world that I'm in, the cancer world that I'm in-- and you are for example, trying to have a discussion with somebody about the risks and benefits of a certain treatment and survival and their life and maybe even trying to have a conversation that maybe it's time to stop treatment because I don't think you're going to make it and that patient is Black, you need to understand that that's happening in the context of us understanding that our lives do not matter to the same extent that other people's do just walking around on a daily basis.

DEMETRIA SMITH-GRAZIANI: Great point. Great point. Ericka, anything to add?

ERICKA HART: Yeah, for sure. Thank you for saying that, Kemi. That's brilliant and I do think it's important to be thinking about how this is continuing to show up contemporarily as folks will hearken back to the past as if we are now in a new day, and we are 100% not. But I do think what's important to talk about is whose stories get told. The focus now is on the Derek Chauvin trial due to the murder of George Floyd, but there wasn't this much attention, I would say, around Breonna Taylor's case and the fact that it wasn't actually addressed.

And even again, another marginalized community is Black trans people. When Black trans women die, what then is the national conversation? It doesn't exist. And I think that has a lot to do with the bodies that we are saying are worthy to be considered. And so what we talk about when I get so frustrated about the Tuskegee experiment being repeated over and over again is the erasure of Black femmes.

So J. Marion Sims is a pseudo medical provider who operated on countless Black femme people without anesthesia and then was named the father of gynecology. And then we come into the 1920s with Margaret Sanger and the experimentation of birth control experiments and the sterilization that continues to happen to this day. And what was happening is that Margaret Sanger used Black folks to say W. E. B. Du Bois was on-- I always say, "DeBwa"-- Du Bois is their name. They're from Massachusetts, so I'm going to give them spice.

W. E. B. DuBois really worked alongside of Margaret Sanger's eugenics project to essentially eradicate disabled folks and Black people and also went all the way to Puerto Rico to essentially attack and harm Black Puerto Ricans to create this birth control for white people. And then coming to the 1950s, we have Henrietta Lacks and the experiment on her body when she went to John Hopkins for actual care and the lack of informed consent. So I get frustrated when the focus is always on the Tuskegee experiment just as much as I get frustrated when we talk about police brutality being focused on Black cisgender man. There are so many folks who get impacted by the state, and often times we don't even hear their names because the media has construed who we see as important. And beyond the media, whiteness says whose identities are most important.

And it's important that when folks are studying medicine that you understand that you are also indoctrinated in this idea that certain people's identities are more valuable than others. And oftentimes, I'm told that there isn't much conversation around racial and social justice, gender justice at all in medical spaces. And I would say my resource is Medical Apartheid by Harriet A. Washington. It is necessary reading for anyone who wants to do anything in the world that relates to people's bodies beyond the medical spaces. I think it's important that you understand how folks bodies have been regarded in this country.

Another book I just got is called Medicalizing Blackness-- hold on, let me give you the author-- by Rana A. Hogarth. This is the book. Also, highly recommend-- it's just you have to do your research and really be applying this. Again, like Kemi said, it is not a function of the past.

It is happening currently. We can look to maternal mortality to really get the continuation of medical experimentation. I'm not a linguist, but even the word experiment has a lot to do with using someone to prove something.

So even inside of that, there is so much that we don't know that's not even really covered in these books. There's so much that has been buried. So yeah, that's what I would say.

DEMETRIA SMITH-GRAZIANI: Great [INAUDIBLE].

ERICKA HART: Thank you.

KEMI DOLL: May I have one more book Deirdre Cooper Owens, Medical Bondage, which focuses on the history of-- I love the pseudo. I love pseudo-physician. I'm going to start using that. Thank you, Ericka. A pseudo-physician J. Marion Sims, so thank you.

ERICKA HART: You're welcome.

DEMETRIA SMITH-GRAZIANI: This transitions well into a question about how does medicine as an inherently racist institution actually address these failings? One of the things that's been focused on recently is increasing diversity, increasing representation within medicine.

ERICKA HART: Yeah, so diversity and inclusion is ineffective. And what it does is it creates this idea that if you have cookie dough-- cookie dough without the chocolate chips is already kind of brown, right? But let's just imagine that it's mostly white.

So you have cookie dough, and then you're like, OK, you're not going to make chocolate chip cookies without chocolate chips, so you throw in the chocolate chips. That's diversity and inclusion. The basis, the foundation of it, is still white. You haven't done anything to uproot or change or acknowledge the harm that has been caused. What you are now doing is throwing Black people and non-Black people of color into the space to say, OK, look we got some Black doctors here.

But then, how do you address the fact that most medical schools are impossible to get into? The barriers that set up to actually get into medical school are incredibly financially impossible. And when Black doctors are practicing, they get so much racism that they experience from patients-- patients saying things like, I don't want that doctor. I don't want to work with them. What then is the impact on the doctor?

And then, can a Black doctor actually be politicized in their highly political position? Or do they have to essentially have-- I don't want to say minstrel show-- but perform Blackness in a way that's palatable to white people so they can keep their job? It has to go beyond identity. Identity will not save us. I want to know what your politic is, and diversity and inclusion is consistent with doing that as a way to absolve white institutions of their racism.

KEMI DOLL: If I could plus one, heart, like everything Ericka said times 10. I 100% agree especially regarding the point about identity. And it's not just about, I think, Blackness. It's about, I mean-- I don't know how to say this word-- but visible blackness, I'll just say. I mean, it's about the--

We are very hypervisible. Black physicians are hypervisible, especially in academic places. And I have to speak there because that's my experience.

So what happens is you walk in the door, and 30 seconds after you walk in the door, your face is on a poster. Somewhere, you in marketing materials, girl. You're already there.

And then on top of that-- so you're very visible. You just started. The scrutiny about what kind of doctor you are and the quality of care that you can provide is ramped up immediately even up and over what would be for a normal person starting.

Then you add on the layer of exactly what Ericka is talking about, which I have certainly experienced, is the also higher bar that patients have for you. Because they walk in, they're like, oh, you're my doctor. Now all of a sudden, you're reciting your pedigree, you're reciting how many cases of X you've done, you've done all of this stuff, plus the microaggressions that happen on a daily basis from staff who are supposed to be reporting to you but feel a type of way about reporting to a Black woman or a Black femme in a certain kind of position.

So you add on all of that. And so then, I say you add on all that, and then you turn to the Black doctor and you say, you're the solution to medical racism. It's ridiculous, it's insulting, and it's actually just racism. I agree 100% that simply having a Black doctor is not going to fix racism, and my perspective also is that it's necessary but not sufficient.

So we're definitely not getting anywhere without Black doctors. However, I personally did not get into my politic and understand race, gender, and the intersection of race, gender, and health and racism as it applied to my particular area, GYN oncology and endometrial cancer, until I was through medical training, through subspecialty training, and deliberately spent years consuming sociology and anthropology and equity frameworks, which just gives you a sense. Because I'm a Black woman watching all of this happen in front of me as a trainee.

If you do a four-week course in the summer on racism, you're not doing anything because it's about the embeddedness everywhere. It's about how we talk about Black bodies. It's about how we talk about race as a risk factor instead of racism as a risk factor. And I can just speak personally it's a journey out of that and then to turn around and look at it and then to say, now I am deliberately staying because I am deliberately trying to deconstruct.

And I do think that that saves lives. I do know that being in my position and a Black woman walking in with the politic and understanding that I now have is the difference between her getting the care she needs and not getting the care she needs. I've had people come to me as their third or fourth opinion because they can't have a respectful conversation with an oncologist who can listen to them and their concerns and who understands that everything isn't black and white. The things that we measure aren't always the things that matter to everybody.

And so it's both/and for me. We do have to grapple with the problem that Black people in medicine can obscure the progress towards anti-racism in medicine and towards deconstructing these things when all they are is identity and there's no effort to understand and define a politic. And I understand that makes us vulnerable, but it's always going to make us vulnerable until we remake the system. So that's what I would add.

DEMETRIA SMITH-GRAZIANI: Yeah. Thank you. It's really, really important points. So building off of all of that-- so let's say people are saying, OK, I'm learning to look through this lens where we're going to infuse the practice of learning about racism throughout medical training.

OK, now what do I do now? I'm a physician. I'm a nurse. I'm a health care practitioner. How do I use the power and privilege that I have to then to combat racism in medicine when I see it to help my patients? Who's going first this time? Maybe we can start with Kemi this time.

KEMI DOLL: It's-- OK. So what can I do is a hard question to me because there's a billion things to do, and so I just want to acknowledge that that question is sometimes used to not do anything. There's always something to do.

If the issue was you had high infection rates after all of the surgeries, people would have 30,000 things that they would try immediately tomorrow. So the first thing I just want to-- I have to say is stop asking that question. And in addition to reading something-- you got book recommendations already-- start doing something different. Just try. Iterate. Do that first.

Secondly, I would say that look in your own house. So what we know-- I'm going to quote a study and it's going to be terrible I can't tell you where it was. I can't remember anything about it. But it was about-- I think it was cardiologists, and they surveyed the survey cardiologists. And they were like, there was a study that came out that demonstrated that specifically-- getting to the intersectionality point-- specifically Black women, when reporting cardiac symptoms suggestive of a heart attack, are not referred to get cardiac catheterization to literally save their lives compared to white men and women and Black men.

After this, there's a study that asks cardiologists they say, OK, well, where do you think racism exists in the health care system? And it's like, out in the health care system, at my own hospital, in my own practice with me and my patients. And you might imagine what that looks like.

Oh, it's definitely out there. Maybe it's in my hospital. It could be in my practice, but not with me.

And so my answer to that question is acknowledge that there's racism in your practice because you literally live and breathe white supremacy. So acknowledge that it exists. We're not fighting that question.

And then because I am a research person-- I apologize-- get your data. Pull your-- stop assuming. Pull your data right now and look and see who's not doing well.

To Ericka's point about trans, non-gender binary people. Where are they? Are you asking people? Do you even have that data?

And then going on-- race, ethnicity, ethnicity breakdowns within the Asian population. Are you even looking to see how are we doing on these metrics? Who's getting care and who is not?

That is like the bare minimum of what you would do if you said, today, I am trying to change something. You would go get your own data. You wouldn't keep asking people, what should I do? So that's my answer. But also, just listen to Ericka.

DEMETRIA SMITH-GRAZIANI: Yes. Yes. [INAUDIBLE] kind of ruled this into how this affects your day-to-day experience as a patient, tying that together, hopefully. Yes. [INAUDIBLE]

ERICKA HART: Yeah, sure. I'll tie it together as well. I think everything that can be said and what I'll add is the lack of intersectionality, the lack of looking at intersecting identities that influence how folks receive or don't receive health care. One point that I feel like when we're having these conversations about medical institutions is that we leave out insurance companies, and insurance companies are a major barrier to actually accessing health because it is politicized in this country. It is connected to the government, which it should never be.

Folks should have access to health care. That should not even be a radical statement. Everybody should have access to health care, and we don't. I'll tell you right now-- and this is not an exaggeration-- I pay $660 a month for health insurance, and that is just because I don't want to leave my oncologist.

I don't want to have to search for another oncologist. I want to stay with this oncologist for the next-- I've been with them for five years. $660, right? And I'm in a privileged position where I can afford that, but it is still a lot of money. That is ridiculous.

So addressing the barriers-- my breast cancer surgeon actually saw me when I did not have health insurance. I don't know that-- I won't say his name because I don't know what you all to be finding him or doing nothing to him. That's my homie.

He really saved my life. He was willing to see me even though I did not have health insurance. Stop putting up the barriers of red tape. Right now, what we're seeing in states like Arkansas and Mississippi are racist and transphobic governors and politicians who are trying to stop trans young people from accessing health care.

The government is going to do what the government is going to do. What are you going to do when folks come into your office? Are you going to tell a trans young person, oh, the government says that I can't treat you? Hell no.

So my suggestion to medical providers, to folks who work in any field that serves people, is to risk losing your job. Put your job on the line for somebody else. Do not not give me care so you can continue to collect a check. How do you sleep at night?

What needs to happen is that medical institutions need to go away. They are consistent with supporting-- they work with the state clearly. They are informed by the state. Therefore, they are also informed by police. We are inside of a police state.

All of these things are connected. As a Black queer non-binary femme who has to navigate medical institutions on a regular basis, it is terrifying. And it is exhausting how most even when I get at the door and I fill out the copious amount of paperwork that ask me for everything besides how much butt hair do I have.

There's nothing on there that ask me my pronouns. There's nothing on there to ask me my gender identity. There's most likely to be an assumption of who my partner is or who I love or how I love, which is now triggering. I'm now stressed out to be at the doctor.

I'm also a person of size. I am inside of fat activism spaces I am considered a small fat. So any time I go to the doctor, there are some sort of correlation made with my health connected to my fatness.

It's pseudo-science. Anything you're talking about in terms of race has then a function of anti-Black racism, how I have been harmed in terms of racism, how my body is weathering due to the constant racism and transphobia and classism and fatphobia that I have to navigate. Don't contribute to that. Cut it out.

DEMETRIA SMITH-GRAZIANI: Yeah, it's kind of-- it seems complex, but it is kind of simple, right?

ERICKA HART: It's so simple. That complexity is a function of white supremacy as well-- to make it complex, so we could constantly be, like Kemi said, what do we do? And what do we do? It's nonsense.

You know what to do. You are unwilling to do it because it could eventually, hopefully lead to this institution falling apart. Great.

I want to go to the doctor underneath a tree. I don't care if the red tape to get to the technology has to be addressed. And that's all I mean.

DEMETRIA SMITH-GRAZIANI: All those barriers.

KEMI DOLL: Exactly. I just want to point that out though because I think in medical discursive spaces when people hear Ericka saying, we don't need the institution. We don't need all of this stuff. We need to dismantle it.

That gets skewed into we don't need anything, like all of this-- we're going to go back to bloodletting. That's not what we're talking about. But what we're talking about is we don't have to couple those things together.

We don't have to couple innovation and knowledge together with power and class and exclusion. Those can be decoupled. And I don't know, I'm like-- I don't know. My view is always like that is the goal. And then, what am I doing today?

What am I doing today that is disruptive? If you're doing something today disruptive, you're disrupting, and you're disrupting every day. Sometimes, that disruption is in the form of how you're talking to somebody as the first person who's talking to them as a person, as a whole human being, as a whole non-defective human being, and seeing everything that's on top of them not as something intrinsically wrong with their body, but as a function of the experience that they've had.

But in addition to that, in addition to an individual disruption of thinking about people as problems to solve, then disruption can also look like, for example, not allowing the same appointment length of time for a patient who speaks your language and a patient who doesn't. Just think about that. If all of your appointments are 30 minutes and you see-- or 15-- and you know somebody is coming to see you that y'all don't speak the same language, that means that you have to have a translator.

By definition, by the structure, that person gets half as much time with their doctor. They pay the same amount, they have to deal with the same insurance, all of those things, and yet they get half the amount of time because you're spending time going back and forth. That is a systematic disruption that's available to you right now.

To say, schedulers, an hour every time somebody comes in who does not speak my language? Double the appointment time because that's the bare minimum of equity. I mean, there's more things. I don't want to pretend like that's the solution. But there's an infinite number of things that you can do while still choosing to be in a system that disrupts that system is how I think about it.

DEMETRIA SMITH-GRAZIANI: I think we're always afraid of rocking the boat. But really, we have to think about, well, what are the consequences? And sometimes the consequences aren't really that bad, and that all depends on your personal identities and how you might be [INAUDIBLE] within a larger institution. But a lot of times the consequences aren't that bad if you push that boundary.

I wish I could continue this conversation all day. There are so many gems here, but I know this is just the beginning of the conversation. I really hope this is something that continues among oncologists, among other clinicians, health care providers, researchers. But we'll end there.

But thank you so much for sharing your time with me. This was amazing. And thank you all for joining us on this episode of ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click Subscribe. Let us know what you think about the series by leaving a review or emailing us at professionaldevelopment@asco.org.

SPEAKER 4: Thank you for listening to this week's episode of the ASCO eLearning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.

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In this episode of the ASCO Education Podcast, moderator Dr. Annie Im speaks with fellows and training program directors about oncology training during the COVID-19 pandemic. Featuring Drs. Kathryn Bollin (director), Farah Nasraty (fellow), Jonathan Berry (fellow), Nino Balanchivadze (fellow), and Nishin Bhadkamkar (director).

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Air Date: 5/26/2021

TRANSCRIPT

[MUSIC PLAYING]

SPEAKER: The purpose of this podcast is to educate and inform. This is not a substitute for medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

ANNIE IM: Hello, and welcome to ASCO's podcast episode focused on the impact of the COVID-19 pandemic on oncology fellows and training programs. My name is Dr. Annie Im. And I'm an associate professor of medicine and the Fellowship Program Director at the University of Pittsburgh. I am pleased to be joined by our five guest speakers today.

NINA BALANCHIVADZE: Hello my name is Nina Balanchivadze. I'm a second year fellow at Henry Ford Hospital in Detroit, Michigan.

JONATHAN BERRY: Hi, my name is Jonathan Berry. I'm a first year fellow at Beth Israel Deaconess in Boston, Massachusetts.

NISHIN BHADKAMKAR: Hi, I'm Nishin Bhadkamkar. I'm an associate professor in the departments of general oncology and gastrointestinal medical oncology. I'm at MD Anderson Cancer Center. And I'm the Program Director of the Hematology Oncology Fellowship Program.

KATHERINE BOLLIN: Hello, everyone. I'm Katherine Bollin. I'm the Associate Program Director for Hematology Oncology at Scripps MD Anderson Cancer Center in San Diego. And I'm also the Wellness Chair for the GME Division of Physician Wellness, and a medical oncologist specializing in cutaneous oncology.

FARAH NASRATY: Hi, Everyone. I'm Farah Nasraty. I'm a third year hematology oncology fellow at Scripps Clinic MD Anderson in San Diego, California.

ANNIE IM: Thank you. So let's get right into it. First, let me ask how are training programs adjusted at your institution during the COVID-19 pandemic? What was the impact on learning? What adjustments did your institution make? And what has worked well that you can share with the treating program community? Let's start with Dr. Bhadkamkar.

NISHIN BHADKAMKAR: When the pandemic hit us, we obviously had to rapidly make changes to our clinical and educational programs. I think the first change that came about was transitioning to telemedicine for many of our outpatient visits. And obviously this had an impact on outpatient rotations for our trainees. At the same time, we also changed all of our didactic programming to the virtual format. And this also had to be done fairly quickly to meet institutional requirements.

And what we found in making these changes was first and foremost on the clinical side that trainees on outpatient rotation definitely had a perception that their learning would be adversely impacted by having less in-person interactions. And so we really relied on our rotation coordinators to make sure that fellows were involved in the telemedicine platforms to talk about decision making, and to interact with the patients. Obviously, there's no way to completely recreate the interaction. But we wanted there to be the element of fellow talking to patient, than fellow talking to the attending, and then all three again coming together to talk about the treatment plan.

With regard to education, we certainly found that there was a social element that is important to learning that it was more difficult to recreate on a virtual platform. However, there were certainly advantages to the virtual setting in the sense that it allowed people to connect from different campuses. It allowed some people to participate who perhaps in a live setting would be less likely to speak up. And so using chat features and other elements, we found that there was a segment of our trainees who actually were participating more than they would have in our normal format. So clearly there were advantages and disadvantages. But I think overall it was a necessary change, and one that I think trainees in the end embraced and were able to make the most of.

NINA BALANCHIVADZE: We had a lot of the similar changes as described. And I would say that what worked the best was clear communication and clear messages from the program leadership. One of the important things that our program did was we had a town hall like meeting where all fellows got together with program leadership and faculty, and we discussed going forward. And we discussed what changes will be made. And fellows this way felt empowered. We had our voice, and we were part of a decision.

As you all know, the pandemic brought shock. And as the pandemic unraveled, in particular, Detroit was one of the hardest hit cities. Therefore, all of these changes I would say got to us before too many places. Another thing that worked well was splitting up the fellow group in three separate groups, which allowed two week blocks. So a group of fellows did inpatient hematology and oncology related work such as consults. In the same groups, there was a fellow who covered the clinic, and saw patients that could not be seen virtually.

There was another group that covered the COVID wards. That was the group that was deployed to take care of patients at the front lines. And a third group of fellows were actually at home, and participated in remote and telemedicine type visits. So the way the structure went-- two weeks of being at home doing remote didactics. Then two weeks doing hematology oncology related work. And then two weeks doing COVID related work. Therefore, after kind of going through these phases, it allowed all the fellows to kind of have a time to decompress and decongest. So I think that really worked well for our program.

KATHERINE BOLLIN: So we did many of the same things that have been highlighted already and shifting didactics online, and multidisciplinary conferences. And also clinic visits became mostly telemedicine. And we were able to institute technology within the hospital wards to facilitate interactions that may not have been in person being a consultative service as well. So those things went fairly smoothly at our institution where the impact of COVID initially was relatively low compared to other institutions across the country. So we were able to maintain a safe and functional environment.

But what's been interesting is that, yes, we've been nimble in making this kind of transition, but now our eyes are open to the advantages of working and functioning in a virtual world. And we're looking at how we might carry this over in a post COVID way. I think that remains to be seen. But it's been wonderful having fellows at different centers coming together over a virtual format not just within our own cancer center from different satellite clinics, but also in combining with other cancer centers. And sharing didactic and multidisciplinary conferences and the like.

So I think that the strain and the impact of COVID on our fellowship has been tricky and difficult in many ways. But it's open the door to really facilitating living in a virtual world in the future.

ANNIE IM: We know this pandemic has affected everyone in some way. Regarding your personal life and well-being, would you like to share what was particularly challenging during this pandemic? What has been helpful through difficult times?

NINA BALANCHIVADZE: I think that pandemic has been challenging on various levels, particularly in personal lives. A lot of the fellows live away from their families or extended family and have children. So the quarantine, and being at home, daycares being closed, I think affected a lot of fellows. In addition, having virtual visits, having teleconferences, is difficult if you have a toddler running around the house. And I think this also puts a whole new layer and dimension to the stress that fellow experienced during this time.

And then there was the stress of am I going to get infected? Am I going to infect my children? How am I going to cope? And I believe that these were the questions that everybody had and went through. Personally, what helped me was collaborating and talking to other fellows. I created a Facebook page where I had included a lot of the fellows I knew not only from hematology oncology but as well as from other specialties. So I also took up a hobby. I started gardening and I started taking care of flowers and flowering. And trying to do things that were more family centered to try to get through this difficult time.

FARAH NASRATY: I would agree with that. I think COVID of course now we're a year into it, but it brought so many challenges with it all at once. Maybe we were used to dealing with a challenging patient interaction or interpersonal interaction. But it just brought everything together. Not seeing your family, your friends. Not being able to see patients or your co-fellows.

And then as we have talked about, just your own fear of getting sick and dying. Or your family member or co-worker getting sick. And so it was just a lot to take all at once. And I think anyone could kind of crack under that pressure almost. And so I kind of used that period initially as a stopping point for myself to kind of regroup, and see where I have resiliency skills or strengths. And where I could build upon that.

And at Scripps, at my clinic, we had just recently gone through a resiliency course. So I kind of had those tools ready. But I also spent part of the beginning of COVID taking an online course called The Science of Well-being. It's a free course, it's offered through Yale available online at Coursera. And that was a really helpful tool for me to use then, and to continue to use now. Because I think as medical professionals we had an idea of the handwashing, and the masks, and social distancing. But I think in terms of emotional support, and in terms of our being, I think that also took a hit. And we really needed additional support there.

And the course I took online and our course at Scripps, there wasn't necessarily anything you didn't already know. Just general reminders. But I think sometimes that's what we need. Right. Like excess use of social media is bad. Increased sleep is good. But it also opened my eyes to some other ideas that even through such a dark time as COVID something like keeping a gratitude journal, which for me is just like in the Notes app on my iPhone. But just little things like that. What are the small positives I could find in the day when I was going through such a hard time.

And I think taking that course, taking the resiliency tools I had, and trying to actively remind myself of that, which I hadn't ever done in the past going through medicine, I think that really helped me kind of get through the day to day struggle. And I still use it today. So it's been really helpful.

JONATHAN BERRY: So I actually started fellowship last summer. I'm just in my first year. And so we were already several months into the pandemic by the time we entered our hemog fellowship. And I think the most important kind of support in my personal life was really our program thinking about how we as first year fellows can support, and encourage, and be there for each other. So historically, prior to our year, the first year are almost all in the clinic. And so they share what could probably be best termed a very cozy office or a large closet, which of course, did not meet social distancing rules under the normal kind of new standards.

And so there is was great advocacy to get us a different office where we could all be at the same workspace appropriately kind of spread out. But be able to support each other as we go through the challenges of starting this new year, and all of the ups and downs of hemog fellowship. And so that was absolutely huge was having that support at work. And on the same way, having my partner and having my close friends that we only saw each other for the first few months. I think just having those people around who are able to remind you of the world outside of medicine whenever things are really challenging was by far the most important part.

And the ways in which we couldn't have those interactions that we would have normally had with far more people were some of the hardest parts.

ANNIE IM: Next, I want to ask, how have you coped with remote instruction and limited in-person interaction with peers, patients, and mentors? Any lessons learned from this experience that you'd like to share with others?

JONATHAN BERRY: So I think one of our big concerns as I was a new fellow in hemog was with the total change of everything moving to online education, and having less in-person interaction locally and at conferences-- national conferences, which obviously also were happening online-- there is this worry of how this would affect our learning in this pivotal first year. And I think that's something that's continued to be a question. And to be honest, I think I still have some areas where I feel like I might have learned this a lot better if I was able to sit with colleagues around a table, and talk about it in person as opposed to online.

But that being said, I think there's definitely been some developments. Some things that I've learned and some things that our program has learned about how to make remote instruction as effective as it can be. I think any time we can get people talking and interacting-- like was mentioned earlier, whenever there is educational sessions that are structured in such a way that they're not just one way conversations, but they're kind of small group conversations, or they have interactive elements, or use breakout rooms effectively, those things are extremely helpful at making remote instruction stick a lot better. I think the other aspect is there are types of conferences and types of lectures that actually seem to work a lot better online.

So I found that things like grand rounds and having these speakers who often I would be intimidated to approach in person to ask a question, having them online and being able to pose a question in a chat format is significantly less intimidating. And then we also have the ability of bringing in anyone at any time for grand rounds. You don't have to deal with thinking about travel, and housing, and hotels, and things like that. And so I think some of those sorts of things like invited speakers, the online format of instruction has actually worked a lot better. And I anticipate that some of that might actually stick around. Although hopefully, we will still travel from time to time and see each other at conferences and in each other's institutions as well.

NISHIN BHADKAMKAR: I think that each fellowship class experienced the pandemic in a different way. And I think that it was very important for program leaders to think carefully about that the first year fellows who started last July didn't know when they applied they didn't know that they were going to be in the midst of a pandemic. And so there was a different type of experience that they had being apart from their families sometimes unexpectedly compared to other fellowship classes. And we found that it was important to try to maintain social connections within the classes and also among the three classes as much as we could.

With regard to virtual instruction, the engagement and interactivity piece became even more critical. When you have in-person instruction, there's a natural flow and the natural dynamic to the learning that I think is conducive to fellows education. And when that piece was lost, it was important that we try to include as many interactive elements using small group sessions, using multidisciplinary sessions, to try to engage fellows in virtual platforms.

NINA BALANCHIVADZE: I believe that a pandemic did change our outlook on medicine. And general medicine as well as on our subspecialty training. A lot of us felt lost because some of the procedures were not being done. There was a feeling of, am I going to get enough instruction? Am I going to see enough procedures? And on the flip side, we've all felt that we have had acquired additional points in our training that was important for the future, such as triaging patients better. Which before pandemic, I would have never thought that a patient with cancer on cytotoxic chemotherapy can be seen virtually. And now we had to triage which patients were safe to be seen via televisit, and which patients had to come in.

We also honed on our skills on some of the basic general internal medicine issues. And I also think that having this experience and going through deployment opened our eyes to what is it like to be in the shoes of other specialists, such as hospitalists, and emergency room physicians, the infectious disease physician. So I think this period was important for team building. And it was important to further our respect for different subspecialists. So carrying that forward, I think, will be very important for me as a physician and as a specialist.

ANNIE IM: What has been the impact of the pandemic on your clinical training?