Patients Rising Podcast: Recent Episodes
Patients Rising
Patients Rising brings its unique and established brand of patient advocacy to a weekly podcast, featuring honest and helpful discussion about issues impacting those with chronic illness. Executive Director Terry Wilcox hosts the show, with Robert "Dr. Bob" Goldberg, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
This week’s podcast is all about the QALY and the bill going to the Senate that would ban its use.
The QALY is a metric used to determine how cost-effective a treatment is based on its ability to return a sick person to perfect health. Even if a treatment helps a chronically ill person to live longer, it will not be categorized as valuable as treatments are aimed at diseases that affect younger and healthier populations.
To help us understand how the QALY negatively impacts those with chronic illness, we’re joined by Michael Riotto, a member of Patients Rising, and Bill Smith, a Senior Fellow at the Pioneer Institute.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Treating obesity would cause chronic disease rates to go down, healthcare costs would be reduced, and the lifespan of Americans would increase. But until now, the stigmas relating to obesity have prevented any significant legislation that addresses the issue. To help break it down, we’re joined by Nancy Glick, the Director of Food and Nutrition Policy at the National Consumers League. Nancy helps us understand what an Obesity Bill of Rights actually is, who it covers, and why it's a necessary step.
We also discuss a bill that Patients Rising has been trying to move forward for a long time. We got news this week that it finally has some life!
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
In an effort to curb drug prices, President Joe Biden announced late last year a proposed framework to guide government agencies on how to use march-in authorities if a drug’s price is considered too high.
But what exactly constitutes “too high?” Your guess is as good as ours, and that’s just the beginning of the issues we expect to come from this framework if it moves forward.
We spoke with Joe Allen, Executive Director of The Bayh-Dole Coalition.
The Bayh-Dole Act is where march-in rights stem from and we figured he would be the perfect person to explain march-in rights, what this really means, and how this framework could derail the entire drug development industry if this comes to pass.
You won’t want to miss what he has to say. We also discuss the increasing prevalence of Prescription Drug Affordability Boards and what that might mean as we progress into the second month of 2024.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
As the 2024 election season starts to ramp up, we think that it’s important that you know exactly where the presidential candidates stand on healthcare.
This week, we unpack what the major players in the presidential race have to say about their healthcare plans. We get into the nitty-gritty for the front runners of each party, covering Trump, Desantis, Haley, Stein, West, and Biden.
If we didn’t talk about a candidate you’re interested in, you can find their campaigns here.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
This week, a Resource Coordinator and Patient Navigator with our Patient Helpline goes over the top four steps that patients and caregivers can take to make 2024 their smoothest and most organized healthcare year yet. From what to do in the months leading up to a visit to how to take control of your health on your own time, Levi Peterson shares everything patients and caregivers need to be prepared.
Also, applications for Patients Rising’s Fly-In Scholarships for this year’s event open this Wednesday, January 17th.
Lastly, we discuss two major news stories from this past week including a report from HealthcareDive that HHS has named its first – “Chief Competition Officer” and a report from CNBC that Eli Lilly has a new website offering telehealth prescriptions and direct home delivery of certain drugs.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
This week, we discuss the idea of “dual eligibles” with Steve Peskin, the CEO of SRP Advisors. Steve explains the difficulty for dual eligible patients in knowing what part of their healthcare is covered by Medicaid and what part is covered by Medicare. He mentions the need for coordination between state and federal government and shares a few ideas for how the current system can be improved.
Also, we talk about an announcement by the Biden administration that the Administration for Strategic Preparedness and Response will incorporate fair-pricing provisions into contracts.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
One survey shows 77% of adults over 50 would prefer to grow older where they already live instead of moving to a home or an assisted living facility–but there are obstacles in place for those who want to stay in their homes.
This week, we talk about the current challenges of aging in place with Dan Weinrieb, the Head of Strategic Partnerships at Jukebox Health, a company dedicated to making aging at home a common-sense and cost-effective option for older adults. Dan says the issues relating to aging in place are known, but taking action to fix the problems is where our system falls short. He breaks down what these barriers are, and what will need to change if we want people to actually be able to grow older where they choose.
Also, we talk about a decision from the Colorado Prescription Drug Affordability Board to not place a price cap on a best-selling cystic fibrosis medication.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Last week, the White House announced it has plans to use the government’s “March-in” rights on drugs developed with public funding.
This week, we’re joined by our very own Executive Director here at Patients Rising, MacKay Jimeson. He explains why he and other experts believe this will not lower what patients pay at the counter for prescriptions, and actually could do much more damage by discouraging new treatment development, particularly for the rare disease patient community.
We also talk about the FDA approval of a powerful new tool that will treat sickle cell disease.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Is telehealth here to stay? That’s the big question! Both providers and patients have benefited from the increase in telehealth practices born out of the COVID-19 pandemic. It has allowed high-risk patients to have access to their healthcare provider without having to risk going into a doctor's office, and providers say that telehealth has given them the opportunity to see the patient’s environment and family, which allows them to take those factors into consideration when formulating a treatment plan. This week, were joined by Kyle Zebley, the Senior Vice President of Public Policy for the American Telemedicine Association. Kyle shares a policy update and what to expect for the future of telehealth.
Also, we discuss a potential merger between two major insurance players.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
After being diagnosed with throat cancer, a top trial lawyer was told by his insurance that it wouldn’t cover the treatment his doctor ordered because it wasn't “medically necessary.” Fortunately, he did what he does best, and fought back. This week, attorney and patient advocate Robert Salim, shares his story. He explains exactly how he took on his insurance provider, how he won, and what it means for other patients dealing with the same issue.
Plus, an update on open enrollment with new uptake numbers released by the Department of Health and Human Services.
Resources and previous episodes on open enrollment:
Patients Rising Podcast: Open Enrollment Explained
Patients Rising Podcast: Get Covered
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
It can be difficult to navigate the procedures and interactions that come with a hospital visit. However, knowing what to expect going in can help improve your experience. This week, we talk with hospitalist and author, Dr. Monique S. Nugent about how to physically and mentally prepare for hospital visits. Her new book, “Prescription for Admission: A Doctor’s Guide for Navigating the Hospital, Advocating for Yourself, and Having a Better Hospitalization,” serves as a guide for patients who need help navigating the hospital.
Also, we touch on a bill introduced in Congress that would help terminally ill patients get immediate access to benefits of the SSDI program. Hear from Congresswoman Diana Harshbarger from Tennessee who helped introduce the bill in an episode of the Healthcare Policy Pop.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Taking care of and connecting with a loved one who is living with dementia is difficult, but it's also something that many people have to do. This week, we talk with Mary Anne Roberto and Debbie Axel, co-founders of Always Home Connected, a company that helps provide caregivers and families with more resources that encourage bonding. They walk us through why they started their company, the types of products they sell, and share the impact that they have made in the lives of caregivers and aging patients.
You can learn more about Always Home Connected here.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Everyone seems to be talking about Artificial Intelligence, and there have been questions about how it could benefit the healthcare industry--but what you might not know is that it’s already being used in a number of ways. Luckily, this week we’re joined by Naomi Lopez, the Founder of Nexus Policy Consulting, who has been working to help legislators understand AI. Naomi walks us through the ways that healthcare could continue to use AI to help patients and the industry as a whole.
Also, we touch on a potential bill that would help protect patients by reducing prescription drug costs and extending certain expiring provisions under Medicare and Medicaid.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
There’s a new bill that could help many rare disease patients gaining traction, but it still has a long way to go. This week, we’re joined by Peter Pitts, a Former FDA Associate Commissioner, who gives us the lowdown on the Promising Pathways Act. He tells us what types of diseases are likely to be affected by this bill, and why it will make a significant difference in the lives of patients.
We also speak with Senator Mike Braun of Indiana, who introduced the bill alongside other legislators of both parties.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
This week we talk about a major victory for patients regarding Copay Assistance Programs. We’re joined by one of the major players in the lawsuit that made it happen, George Huntley, the CEO of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition. He helps us break down why this was such a significant win for patients.
We also discuss the new Patients Rising working paper all about current formulary practices and how they’re hurting patients..
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
As the popularity of weight-loss drugs continues to rise, the Congressional Budget Office is looking for new research on anti-obesity medications to see what the impacts could be. Ike Brannon, a Senior Fellow at the Jack Kemp Foundation, joins us to chat about the potential drugs, what they mean for Americans, and how it would impact the congressional budget.
We also talk about a major Cigna settlement due to violations of the False Claims Act.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patient Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Open enrollment is officially here, so this week we do a deeper dive on everything that you need to know to help you choose the right plan. Samantha Sauer, the Director of the The Patient Helpline here at Patients Rising, helps us navigate the different types of Medicare, the options that come with employer or private insurance, and why patients with chronic illness should ask a few more questions.
Also, we have an update on the Medicare price negotiation as part of the IRA.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Maternal mental health issues impact at least one in five of those pregnant or postpartum. This week, Adrienne Griffin, Executive Director of the Maternal Mental Health Leadership Alliance, discusses misconceptions about maternal mental health and resources available to pregnant and postpartum people. She also tells us what the Alliance is doing to transform the maternal mental health landscape.
Plus, Dr. Bob breaks down a significant win for patients with copay accumulator policies.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
With the Open Enrollment Period fast approaching, Levi Peterson, a Resource Coordinator for our Patient Helpline walks us through what everyone needs to know about Medicaid and Medicare eligibility, PPOs and HMOs, and how to pick a health plan that best fits your needs.
We also discuss a so-called ICER update that doesn’t do much updating and still doesn’t help patients.
Patients Rising Now Statement | ICER ‘Updates’ are Thinly Veiled Strategy to Continue Discriminatory Tactics
ICER’s Updated Treatment Assessment Still Ignores Patient Concerns
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
It’s clear that we need to fix the way we measure the value of new medicines. Current methods fail to account for the benefits to caregivers, the long-term savings from keeping a job or avoiding the hospital, and the countless scientific discoveries that a new drug can lead to.
But there is a solution according to this week’s guest, biotech investor Peter Kolchinsky. He talks about his new study that looks at innovative ways to assess the real value of medicine. Peter explains how insurers use cost-effective math to determine what drugs they will and won’t cover, and alternative methods that take into account patient and caregiver needs.
Plus, Terry and Bob discuss some must-pass healthcare bills for the chronic disease community.
New Report: Getting the math right when measuring the value of new medicines
Protect Medicare patients’ right to get care at home | The Hill
Patients Rising Now Issues Must Pass for Patients List for Congress
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
With flu season fast approaching, Dr. Paul Offit joins us to discuss all of his vaccine recommendations, including COVID-19, RSV, and flu vaccines, population immunity, and targeting high-risk groups. Plus, Terry and Bob talk about why insurers are marking up the prices of generic drugs – which should be a cheaper option for patients.
Generic Drugs Should Be Cheap, but Insurers Are Charging Thousands of Dollars for Them
Medicare Part D: CMS Should Monitor Effects of Rebates on Plan Formularies and Beneficiary Spending | U.S. GAO
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Hope can be powerful when receiving a diagnosis… but are we able to quantify just how powerful it really is? Carol Graham joins us to discuss how she believes the U.S. should be using “hope” as a measurement of both social and economic well-being. Plus, how hope and optimism can change outcomes for patients.
And Terry and Bob tell us about the lack of patient input as Medicare announces the first 10 drugs up for price negotiations.
The Power of Hope
Stat News Article: Here are the 10 drugs that will be up first for Medicare price negotiation
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Mark King’s advocacy journey began in the 1980s after he was diagnosed with HIV. Now, he’s written a book that discusses his advocacy journey, the struggles of living with the disease, and the stigma that comes with it. Hear how he has coped over the years, and what he hopes for the next generation of advocates.
And Terry and Bob discuss a few stories about the lack of transparency in insurance claim denials. Plus, a look ahead at potentially rising insurance premiums in 2024.
My Fabulous Disease Webpage
My Fabulous Disease: Chronicles of a Gay Survivor Book Preorder
ProPublica News Article: How Often Do Health Insurers Say No to Patients? No One Knows
Kaiser Family Foundation News Article: An Early Look at What is Driving Health Costs in 2024 ACA Markets
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
For Neal Shah, life was going according to plan. Then suddenly, he became a caregiver overnight. Hear how his experience pushed him to create CareYaya, which he calls the “Uber of caregiving.” It’s a matchmaking system that pairs pre-med college students with families in need of a caregiver to provide companionship and day-to-day support for a loved one.
And Terry and Bob talk about real movement in Congress on the PBM issue. Is there any real hope for solutions? They discuss the nearly unanimous progression of one PBM bill.
CareYaya Webpage
N.C. caregiving business is growing to support seniors
Washington Examiner News Article: Legislation cracking down on pharmaceutical middlemen advances in Senate
Patients Rising Webpage: Patient Stories
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Investing in healthcare like we invest in curbing carbon emissions. It’s a novel idea, but something that Dr. Andrea Feigl, the Founder and CEO of Health Finance Institute, says could change the future of health, specifically chronic disease management.
And Terry and Bob discuss a brand new survey from Patients Rising that’s all about patients and their ability to access naloxone at the pharmacy. What the survey says about stigma and access – all in today’s episode.
Patients Rising Webpage: Accessing Naloxone at your Local Pharmacy
Health Finance Institute
Rapport Article: Do we value curbing carbon emissions more than curing cancer?
CNBC News Article: Sanofi expects infant RSV shot to roll out before respiratory virus season this fall
Patient Access and Affordability Project Report: CMS vs FDA: How Medicare and Medicaid Coverage Decisions Limit Patient Access
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Mel Mann was diagnosed with a cancer known as CML and given three years to live. That was in 1995. Today, in 2023, Mel Mann is still living and still advocating – all thanks to accelerated approval and a clinical trial. Hear the story of how this Army vet, and longest-living Gleevec patient, beat the odds and stands here today.
And Terry and Bob discuss the brand new accelerated approval report that Patients Rising released. Unprecedented coverage decisions from CMS, the history of accelerated approval, and why it’s such an essential pathway for patients are all in today’s episode.
The Mel Mann Story: From Terminal Cancer to 28 Year Survivor (Long Version)
Connect with Mel Mann on Twitter
Patients Rising Now Accelerated Approval Report
ADA Anniversary
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
What do patients really think about clinical trials? Do they trust them? Are they wary? Today’s episode features Jim Sliney Jr., who breaks down a survey project from Patients Rising that determined some surprising results.
We also speak with Myisha Malone-King, a patient advocate who was diagnosed with Crohn’s disease over 14 years ago and who recently participated in a clinical trial. Hear why her relationship with her doctor was instrumental in her health.
Patients Rising Survey: Attitudes about socialization, clinical trials, medication use & treatments in people of color & treatments in people of color with inflammatory bowel disease
Axios News Article: Retailers seek to shake up clinical trials business
Patients Rising Stories: Myisha Malone-King
CNBC News: Dr. Scott Gottlieb on cancer drug shortage – This is a multi-decade problem
Reuters News Article: Biden's junk fee crusade turns to short-term health insurance plans
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
One mom’s journey into patient advocacy started after two of her daughters were diagnosed with galactosemia, a rare disease. There’s finally a potential new treatment for this condition, which families say has helped their children who have participated in the clinical trial. But they’re worried their voices are being ignored.
Jodie Solari, Communications Lead for the Galactosemia Foundation shares how the diagnosis changed her life into a life of advocacy, and why she’s pushing for the voices of families like hers to be considered when reviewing new treatments.
Galactosemia Foundation Webpage
Glactosemia Foundation Webpage: Advocating for a Treatment
Voice of the Patient Report: Galactosemia
Fierce Healthcare News Article: Another PBM reform bill has been introduced in Congress. Here's what it includes
Patients Rising Now Webpage: Ask Your Representative to Support the Protecting Patients from PBM Abuses Act
Protecting Patients Against PBM Abuses Act
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
One mom’s journey into patient advocacy started after two of her daughters were diagnosed with galactosemia, a rare disease. There’s finally a potential new treatment for this condition, which families say has helped their children who have participated in the clinical trial. But they’re worried their voices are being ignored.
Jodie Solari, Communications Lead for the Galactosemia Foundation shares how the diagnosis changed her life into a life of advocacy, and why she’s pushing for the voices of families like hers to be considered when reviewing new treatments.
Galactosemia Foundation Webpage
Glactosemia Foundation Webpage: Advocating for a Treatment
Voice of the Patient Report: Galactosemia
Fierce Healthcare News Article: Another PBM reform bill has been introduced in Congress. Here's what it includes
Patients Rising Now Webpage: Ask Your Representative to Support the Protecting Patients from PBM Abuses Act
Protecting Patients Against PBM Abuses Act
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
This week’s episode dives into the concept of running a clinical trial before ever running a clinical trial. How is that possible? It’s an idea called digital twins & we have an expert interview to break it down.
Colin Hill, CEO and Co-Founder of Aitia shares how this AI-powered approach can make drug testing and discovery more efficient for diseases like Alzheimer’s, Parkinson’s, and more.
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
The first episode featuring our Health Plan Heroes was so good – we decided to do a second one. Listen now to see how these businesses have reinvented their health plans to provide top-tier coverage at a fraction of the cost.
Plus, did you miss this year’s Fly-In or just want to get a jump on next year’s? Registration is already open for the 2024 event.
We The Patients Fly-In 2024 Registration Webpage
Health Plan Hero Webpage
CNN News Article: FDA-approved Alzheimer’s drugs will be covered by Medicare, with some limitations, CMS says
Healthcare Policy Pop Episode: CMS Alzheimer's Decisions + No Data
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
It’s here! The 2023 We the Patients Fly-In is THIS WEEK and we have several Health Plan Hero Winners on the podcast to discuss their health insurance success stories as they get ready to accept their awards in person in Washington D.C.
Plus, Terry and Bob lay out all the policy priorities patients will be advocating for on Capitol Hill during the Fly-In, including reforms to PBMs, copay accumulator programs, and the QALY metric.
Meet the 2023 Health Plan Hero Winners
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
RSV immunizations for infants are on the way, but still have a large hurdle to clear. Ronda Miller-Ernest, a pediatric nurse practitioner with more than 30 years of experience, joins us to discuss the dangers of RSV, her personal experience, and why it’s important that future immunizations are available through the Vaccine for Children Program.
Plus, Terry and Bob dive into the healthcare news of the week, including an article from Kaiser Health News about the weird denials by insurance.
CDC Webpage: ACIP Work Groups
Submit Your Comments! Advisory Committee on Immunization Practices
NBC News Article: FDA approves world's first RSV vaccine, a shot for adults ages 60 and up
Kaiser Health News: Denials of Health Insurance Claims Are Rising — And Getting Weirder
UHC Prior Authorization Update: UnitedHealth backs off contentious prior authorization plan
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
UnitedHealthcare makes a confounding decision that could affect countless patients starting June 1st. Gastroenterologist Dr. Bruce Hennessy joins us to discuss how new prior authorizations for colonoscopies and other screenings could delay cancer diagnosis and subsequent care.
Plus, Terry and Bob dive into the healthcare news of the week, including the FTC expanding their investigation into healthcare middlemen: GPOs and PBMs.
STAT News Article: ‘Stunning’ change to United’s colonoscopy coverage roils physicians and patients
Fierce Healthcare News Article: FTC expands probe into pharmacy benefit managers to GPOs
UHC Letter
Healthcare Policy Pop Episode: Crises in Drug Shortages + Medical Supplies
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
C. diff, an infectious disease can be deadly for many – but especially those with compromised immune systems. We speak with a member of the Patients Rising team about their run-ins with the disease and learn how you can best protect yourself.
And Terry and Bob dive into the healthcare news of the week, including an article written by Bob himself with a timely metaphor for moving medicine forward.
Understanding Your Risk for C. diff Infection
Don’t forget to register for the 2023 We the Patients Fly-In!
Ad: Better For Middlemen
Rapport Policy Article: Do we value curbing carbon emissions more than curing cancer?
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
May marks National Stroke Awareness Month and this week we’re speaking with a stroke survivor who wants to make sure if a stroke ever happens to you – you’ll know all the signs. Hear Stacy Quinn’s personal story and how delaying care almost cost her everything.
And Terry and Bob dive into the healthcare news of the week, including FDA approval of the first-ever RSV vaccine, decades in the making.
Don’t forget to register for the 2023 We the Patients Fly-In!
My Stroke of Hope Webpage
Patient Impact Report: Copay Accumulators
Patient Impact Report: PBMs
CNN Health News Article: FDA approves first vaccine for RSV, a moment six decades in the making
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Another week, another middleman making it harder for patients to get the care that they need. This week, we learn more about Group Purchasing Organizations – also known as GPOs – and how they cause drug and supply shortages across the spectrum of care.
And Terry and Bob dive into the healthcare news of the week, including an opinion piece in The Wall Street Journal that details a decision by the Federal Trade Commission which could end up restricting care for patients.
Don’t forget to register for the 2023 We the Patients Fly-In!
Dr. Nikki Johnson
Group Purchasing Organizations Impact Access to Medications, Increase Drug Shortages
Medical Middlemen: Broken system making it harder for hospitals and patients to get some life-saving drugs
Free2Care’s Rx for Reforming America’s Predatory Healthcare System
Patient Impact Report: Copay Accumulators
Patient Impact Report: PBMs
Watch! Always on Call
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
So often on the Patients Rising Podcast, we discuss the affordability of healthcare. This week, guest Peter Kolchinsky outlines how thinking of paying for medicines like paying for a house mortgage leads to lower costs for patients, and encourages investment in the cures of tomorrow.
Plus, Terry and Bob look at the latest healthcare headlines, including a promising framework for a PBM bill to address interactions between PBMs and federal health programs.
Don’t forget to register for the 2023 We the Patients Fly-In!
The Great American Drug Deal
Senate Finance Committee News Release: Crapo, Wyden Release Legislative Framework to Address PBMs, Prescription Drug Supply Chain
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
For many patients living with chronic illness the idea of “fundraising” isn’t just a child’s bakesale to pay for a field trip, it’s a necessity to pay for life-saving treatment. On this week’s podcast we speak with Sonny Mullen, Director of Outreach at Help Hope Live, an organization that has been raising money to cover medical expenses since 1983. She explains the unique aspects of fundraising for medical care and what patients should consider.
And Terry and Bob dive into the latest healthcare headlines, including discussion of Prescription Drug Affordability Boards being implemented across the country. The name sounds good, but do they do what they say?
Don’t forget to register for the 2023 We the Patients Fly-In!
Gallup News Article: Record High in U.S. Put Off Medical Care Due to Cost in 2022
The Washington Post News Article: Need a new drug? You may be asked to ‘fail’ an old drug first
Colorado Politics Opinion: Consider rare diseases with Rx affordability board | OPINION
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
AI is having its moment in all industries, including healthcare. In this episode, hear how AI-driven tools can help oncologists treat patients. Navid Alipour, CEO of CureMatch, talks about the role of AI in care and how it helps doctors do their jobs.
And Terry and Bob dive into the latest healthcare headlines, including Mark Cuban’s Cost Plus Drugs’ expansion into brand name medications, how a MedPAC decision could threaten patient access to Part B accelerated approval drugs, and ProPublica’s report on insurance claims being denied without being read.
Don’t forget to register for the 2023 We the Patients Fly-In!
Additional Links:
Wendell Potter
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
The ability to catch cancer early on can greatly improve a patient’s outcome. But most cancers don’t have a traditional, routine screening. That means many patients may have cancer but not show symptoms until the disease progresses. By then, treatment options may be limited.
To spot cancer earlier, GRAIL has developed a blood test that screens for over 50 cancers. Chief Medical Officer and oncologist Dr. Jeffrey Venstrom explains how this early screening can help oncologists better treat patients and improve health outcomes for patients.
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Mystery healthcare prices leave patients in the dark. But thanks to hospital and insurer price transparency rules, those costs are being made public. The catch? The files that contain those prices aren’t easy for consumers to read.
Health tech companies have stepped up to decipher these files and make it easier for patients to shop for care. Mark Galvin, President and CEO of TALON, shares how equipping patients with upfront prices can help them find healthcare at a price they can afford.
Plus, Terry and Dr. Bob discuss the latest on accelerated approval, prior authorization, and more.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Get a look at the behind-the-scenes math that often determines whether or not insurance will cover the costs of treatments.
Health technology assessments attempt to determine the value of a new treatment. But not all of these equations take into account patient voices, experiences, and needs. That includes the QALY - a discriminatory health care metric that’s come under fire. But if it’s banned, what replaces it?
Economists Dr. Neal Masia and Dr. Darius Lakdawalla of EntityRisk explain a new model that takes into account patient needs when calculating the value of a treatment.
You can share your support for banning discriminatory metrics like the QALY here.
Plus, learn about the BENEFIT Act, and how it would inject more patient data into FDA approval process.
Links
Patient Access and Affordability Project: Health Technology Assessment Best Practices for Rare Disease Drugs
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Lack of transportation is one of the biggest barriers to patient care. But when employers cover transportation for patients, it can lead to better health outcomes and lower overall costs.
Casey Billington of Concierge Nurse Navigators explains why employers need to incorporate transportation into their health plan benefits so that patients can travel to doctor appointments or get an important second opinion.
And co-hosts Terry and Bob talk about the latest news from Washington, D.C., including the VA’s decision to cover a new Alzheimer’s treatment for veterans. Plus, a new bill in Congress, the HELP Copays Act, would prevent insurers from “double-dipping” into patient savings. Write to your representative to support this bill here!
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Vertical integration in the vision insurance market has led to higher costs and fewer options for patients. Two optometrists, Dr. Ron Benner and Dr. Bill Reynolds, explain how this impacts the price of your glasses, and how the DOC Access Act could fix this problem.
And Terry and Bob break down a new poll that shows consumers support FDA regulation of repairs to medical devices.
Links
WATCH: Stop Vision Benefit Manager Abuses
READ: Legislative Solutions to Overpriced Eyeglasses
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
The Patients Rising Podcast has moved to Monday mornings!
In this episode, hear how Florida is poised to take on PBMs, the pharmaceutical middlemen, and how potential reforms would help patients access affordable medications. Jared Willis gives his updates from the Sunshine State.
And a shortage of kidneys available for transplants has patient advocates sounding the alarm. Co-hosts Terry Wilcox and Bob Goldberg talk about the crisis facing patients with end-stage renal disease. Plus, a story of rare disease advocacy in the MLB.
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Ahead of Rare Disease Day, Congresswoman Cathy McMorris Rodgers (WA-05) joins the podcast to discuss new legislation that would ban the use of a discriminatory health care metric, quality adjusted life year, or QALY.
Learn how the QALY hurts treatment access for patients with rare diseases and disabilities, and how a government ban on QALYs would create more equitable access to care.
Plus, hear from Jean Baker, who shares her challenges getting coverage for her husband’s rare form of cancer, anaplastic thyroid cancer. And our patient correspondents from the rare disease community talk about the health care issues that impact them.
This is also our last Friday episode of the Patients Rising Podcast! You’ll be able to catch the Patients Rising Podcast on Mondays, starting March 6th, in a brand new format.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Congresswoman Cathy McMorris Rodgers, Chair, House Energy and Commerce Committee
Jean Baker, Rare Disease Caregiver and Anaplastic Thyroid Cancer Advocate
Maggie Senese, Patient Correspondent
Kaitlyn Trevathan, Patient Correspondent
Tomisa Starr, Patient Correspondent
Avery Roberts and Kelly Berger, Patient Correspondent
Links:
Chairs Rodgers, Smith, and Reps. Burgess, Wenstrup Introduce Legislation to Ban QALYs
Contact your Representative and Urge Them to Ban the QALY
Rare Disease Day February 28, 2023
Health Technology Assessment Best Practices for Rare Disease Drugs
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Current barriers to clinical trial access make it difficult for patients from underserved communities to access cutting edge care. Those barriers include restrictive eligibility criteria, which can lead to an underrepresentation of racial and ethnic minorities in clinical trials.
Lucile Adams-Campbell, Ph.D., breaks down those barriers and outlines solutions to improve diversity in clinical trials and to ensure that participants receive continued care post-trial. Plus, hear from Sandra Washington, a board-certified patient advocate who shares why she fights for health equity and advocates on behalf of all patients.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Lucile Adams-Campbell, PhD,
Sandra Washington, Managing Owner, Medi-Helpz LLC
Chi Chi Nnoli, Patient Correspondent
Links:
Layoffs and Shutdowns Hit Biotech Industry in U-Turn
Personal Health Journal and Planner
Sandra Washington’s Black History Month Series
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Stephen Kay took a job 10 hours away from his wife. Why? Because he needed insurance that would cover the costs of her multiple sclerosis care. While she had Medicare before turning 65, she was unable to purchase a supplemental plan, or Medigap plan, to cover her major costs.
This is a reality facing numerous patients who live with disabilities, including ALS and End-Stage Renal Disease. Melanie Lendnal of the ALS Association explains that while patients with disabilities can receive Medicare before the age of 65, they often can’t access the supplemental plans they need. Learn about how legislation at the state and federal levels could close this gap for patients.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Melanie Lendnal, Senior Vice President of Advocacy, ALS Association
Stephen Kay
Katie Coughlin, Patient Correspondent
Links:
North Platte couple urges state to close gap in Medicare coverage for disabled
Medicare Information | ALS Association
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Over the past 30 years, cancer death rates have declined by 33%. Ahead of World Cancer Day, hematologist Dr. Rafael Fonseca joins the podcast to talk about the latest innovations and improvements in cancer care delivery that have contributed to this decline.
Plus, many patients with chronic diseases depend on employer-sponsored health plans. But losing a job and the health insurance that comes with it can leave patients scrambling for a plan that doesn’t interrupt their care. Montana Kirby shares her experience with this situation, what to know about COBRA health plans, and her advice for patients who may find themselves in a similar scenario.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Rafael Fonseca, MD, Chief Innovation Officer, Mayo Clinic in Arizona
Montana Kirby, Patient Advocate
Sherri Gorbett, Patient Correspondent
Links:
States jump into fight over prior authorization requirements
When Prior Authorization Practices Go Too Far
US cancer death rates falls 33% since 1991, partly due to advances in treatment, early detection and less smoking, report says
What young adults need to know about health insurance enrollment
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
This year, six biosimilars for the top-selling medicine, Humira, will enter the market, with the first launching on January 31, 2023. Increased competition from biosimilars can drive down costs. But experts argue that insurers and pharmacy benefit managers will receive those savings – not patients.
On this episode, hear from pharmacists, health economists, patient advocates, and health care experts about what biosimilar milestones 2023 will bring for patients. Plus, how to fix the system so that patients get the cost-savings they need.
And listen to Brandi Privitera’s story, where she discusses her health care journey with fibromyalgia and lends advice to fellow parents who live with a chronic illness.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Robert Popovian, PharmD, Chief Science Policy Officer, Global Healthy Living Foundation
Wayne Winegarden, PhD, Senior Fellow and Director of Medical Economics, Pacific Research Institute
Peter Pitts, President, Center for Medicine in the Public Interest
Vickie Wilkerson, Patient Advocate
Sameer Awsare, MD, Executive Director, The Permanente Medical Group
Brandi Privitera, Founder, BeingFibroMom.com
Kristy Birchard, Patient Correspondent
Links:
Special Report: The Biosimilars Market in 2023: Important Trends and Milestones for Chronic Disease Patients
Share Your Health Care Story in the Patients Rising Now Storybook
Record High in U.S. Put off Medical Care Due to Cost in 2022
Connect with BeingFibroMom on Facebook, Twitter, Instagram, and LinkedIn
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Can a divided Congress work together to help patients? Health policy experts Jon Deuser and Mike Gaffin tackle that question. They explain what health care issues Congress might address, including the lack of transparency around pharmacy benefit managers (PBMs), and talk about the key players on Capitol Hill who will be shaping health policy.
And patient advocate Rachael Novick shares her story about step therapy. The 11-month insurance process forced her off a stable medication, resulting in additional costs and medical care.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Jon Deuser, CEO, The Smith-Free Group LLC
Michael Gaffin, Senior Vice President, The Smith-Free Group LLC
Rachael Novick, patient advocate
Jean Baker, patient correspondent
Links:
US cancer death rates fall 33% since 1991
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
A new Alzheimer’s treatment received FDA approval under the accelerated approval program. Former FDA Associate Commissioner Peter Pitts explains how the accelerated approval pathway leads to incremental innovation, or building blocks to develop the next generation of medicines for all patients.
Plus, patient advocate Katie Coughlin shares her experience living with Ehlers-Danlos Syndrome (EDS), and why better care coordination could improve outcomes for her and fellow patients living with a rare disease.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Peter Pitts, Co-Founder and President of the Center for Medicine in the Public Interest
Katie Coughlin, EDS Patient Advocate
Kimberly Gonzalez, Patient Correspondent
Links:
A new Alzheimer’s drug will cost $26,500 a year. Who will be able to get it?
Doctors press HHS to loosen test result rule
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Last year President Biden signed the Inflation Reduction Act into law, which included several changes to Medicare. Terry and Dr. Bob discuss the three changes that start this year, including the $35 monthly cap on insulin, and more.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Doug Badger, Senior Fellow, Galen Institute
Amy Gietzen, Scleroderma Patient Advocate
Vanessa Steil, Patient Correspondent
Saida Mahoney, Patient Correspondent
Links:
Explaining the Prescription Drug Provisions in the Inflation Reduction Act
New Insulin Cost Cap Excludes An Estimated 21 Million People
Join the Patients Rising Now Storybook
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Have big goals for 2023? Set yourself up for success by setting “tiny habits.” To help you get a head start on your new year goals, listen to this rerun of our conversation with behavior scientist BJ Fogg. He shares his advice on how to set what he calls “tiny habits” and how it can help patients with chronic diseases manage their health care routines.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
BJ Fogg, Ph.D., Behavior Scientist, Stanford University
Links:
Tiny Habits
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
How do patents work in the medical space? And how do they lead to new medicines, therapies, and devices? This patent-explainer episode answers those questions and more.
Dr. Ron Cohen, a physician and President and CEO of Acorda Therapeutics brings listeners inside the patent process, including how they spur new innovations, and how he’s witnessed those innovations impact his patients.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Ron Cohen, M.D., President and CEO, Acorda Therapeutics
Links:
Using March-in Rights as a Strategy for Reducing Drug Prices
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Medicare’s proposal to reduce funding to home health care would deal a major blow to patients. But a new bill in Congress could help avert these catastrophic cuts. Guest Joanne Cunningham, CEO of the Partnership for Quality Home Healthcare, explains why this bill is a must-pass to protect patient access to home health services.
Plus, learn about a new program to help you set and achieve your personal goals in 2023 all while connecting with a community of peers. Music and yoga therapist Spring Groove gives tips on combatting isolation and talks about her new personal wellness program, Y.U.M.M.Y. Time, which is available for free for members of Patients Rising.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Joanne Cunningham, CEO, Partnership for Quality Home Healthcare
Spring Groove, Founder, Your Ultimate Music Meditation Yoga Time
Francine Pruitt, Patient Correspondent
Links:
Terry’s Op-Ed, Medicare’s cuts to home health are a step in the wrong direction
Listen: Home health care is facing devastating clawbacks
Seniors are stuck home alone as health aides flee for higher-paying jobs
Register for Y.U.M.M.Y. Time Wellness Sessions (Write “Patients Rising” when you sign-up)
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Promising clinical trial results for a new Alzheimer’s treatment are bringing hope to patients and caregivers. Hosts Terry and Bob discuss the needs of Alzheimer’s caregivers and how to measure if a new treatment helps meet those needs.
Plus, TikTok personality Kris McCabe (@lifewithgrams) joins the show to share how she became a caregiver for her grandmother who lives with the disease. Since the age of 29, Kris has been a full-time caregiver, and she shares her experiences, insights, and advice from the past five years.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Kris McCabe, TikTok @lifewithgrams
Paul Langley, Ph.D., Lead Researcher, Patient Access and Affordability Project
Sandra Washington, Patient Correspondent
Links:
‘I’ve Been a Caregiver to My Grandmother for Over 5 Years - Here’s What Led Me to Start the Conversation’
New data shows Alzheimer’s drug can slow cognitive decline
Attitudes About Socialization, Clinical Trials, Medication Use & Treatments in People of Color with Inflammatory Bowel Disease
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Congress is moving quickly to pass legislation before the year ends. Hosts Terry and Bob discuss the health care bills that, if passed, could increase patients' access to affordable and transparent care. From telehealth to generic drug access, learn how this legislation would impact you.
And hear from Dan “Dry Dock” Shockley, a Navy veteran living with Attenuated FAP, on his journey from diagnosis to advocacy.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dan “Dry Dock” Shockley, retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer syndrome (AFAP) virtual international live-case presentation
Links:
Sporting a $3.5M price tag, CSL and uniQure’s hemophilia B gene therapy crosses FDA’s finish line
Patients Rising Now and 25 Other Patient Groups Send Letter to Hill on Generic Drugs
It’s lame-duck time. Here are Congress’ health priorities
White House seeks more covid funding in lame-duck session
Telehealth policy changes after the COVID-19 public health emergency
What’s Expected to Happen During Democrats’ Lame Duck Session
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
In our special Thanksgiving episode, co-host Dr. Bob Goldberg speaks with Hillary Blackburn, PharmD, Chief Pharmacy Officer of Dispensary of Hope. Hear how the organization has channeled pharmaceutical donations to chronically ill patients in low-income communities. Plus, how the program has improved the health of communities all across the country.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Hillary Blackburn, PharmD, Chief Pharmacy Officer, Dispensary of Hope
Links:
Dispensary of Hope Site Finder
Stories of Hope
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In this episode, get the latest solutions to ensure patients get the care they need when they need it. That includes the life-saving medication naloxone which can reverse the effects of an opioid overdose. Despite standing orders in many states, persisting stigmas and a lack of education and awareness has made it difficult for patients to get. Jeff Horwitz, COO of the SAFE Project, discusses his team's work to increase access to this medication.
Veterans and military members also face barriers when it comes to accessing care through military health programs, like TRICARE. Jax Scott shares the unique hurdles facing women who served as Cultural Support Team members in Afghanistan, and their challenges accessing care.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Jeff Horwitz, Chief Operating Officer, Stop the Addiction Fatality Epidemic (SAFE) Project
Jax Scott, Board Member, Special Operations Association of America
Shannon Sharp, Patient Correspondent
Links:
Health Technology Assessment Best Practices For For Rare Disease Drugs
State Naloxone Rules and Resources
SAFE Project
How You Can Access the Medication to Save Someone from Opioid Overdose
Making Opioid Reversal Medications Available to Those At Risk For Overdose
Veterans Patients Rising
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
This Veterans Day, we’re thankful for the brave service members who have sacrificed so much to protect our country. But when many veterans return home, their next battle is with a health care system that makes it difficult for them to access the care they need.
To spearhead solutions and improve health care for veterans, Patients Rising has partnered with the Special Operations Association of America (SOAA) to launch Veterans Patients Rising. Executive Director of SOAA and veteran David Cook joins the episode to discuss the biggest health care challenges facing this community, including pharmacy access, mental health care, and cancer.
Plus, Michelle Cook shares her experience accessing health care through Tricare, the health program for active military, retirees, and their families, and how to expedite care for those who need it.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
David Cook, Executive Director of Special Operations Association of America
Michelle Cook, Senior Advisor, Veterans Patients Rising
Tom Norris, Patient Correspondent
Links:
Defense Department Health Plan Cuts Its Pharmacy Network by Nearly 15,000 Outlets
Managing Risks and Improving VA Health Care
Veterans Patients Rising
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Congress has the power to improve patients’ access to affordable and transparent care. That’s why it’s important for patients to know which lawmakers support legislation that positively impacts patients across the country.
To make this information accessible, Patients Rising Now created a beta 117th Congress Advocacy Scorecard.
This inaugural report shows how many bills each chamber considered that would impact patients, and it tested whether lawmakers had opportunities to support pro-patient legislation or Dear Colleague letters.
Spoiler alert: because Congress has been only voting on sweeping gigantic legislative packages, a lot of pro-patient policy never even made it to the floor for votes, and Members of Congress didn’t have enough bills to consider for our report card.
We will be watching this trend and working on the Hill to make Members get the opportunity to vote on pro-patient policy. Next year with a more comprehensive scoring system, Members of Congress will also be notified when Patients Rising Now will be watching and grading specific votes that affect patients.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Rachel Derby, Executive Director of Patients Rising Now
Diane Talbert, Patient Correspondent and Psoriasis and Psoriatic Arthritis Patient Advocate
Links:
117th Congress Advocacy Scorecard
Find Polling and Voting information near you
Midterm Elections Debrief Webinar Registration
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In this Halloween episode, get the biggest health care horror stories of 2022 that impacted patients all across the country. From lack of access to care to burdensome insurance delays, as detailed by migraine patient advocate Yuri Cárdenas. Plus, learn about the solutions to these challenges that can protect future patients from experiencing these nightmares.
And for our field correspondent Kate Pecora’s final show, she speaks with Bob about her ten-month-long battle to get insurance coverage for the wheelchair she needs. She shares her challenges and tips for patients on how to access durable medical equipment (DME).
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Yuri Cárdenas, Patient and Migraine Advocate
Kate Pecora, Field Correspondent
Links:
Derek’s Story
Express Scripts’ Contract With Department of Defense May Limit Access to Lifesaving Medication for Tricare Patients
How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
October is American Pharmacists Month, so we speak with Georgia Representative Buddy Carter about how his experiences as a pharmacist inspired him to advocate for patients and providers in Congress. He shares how independent, rural pharmacies are being put out of business by PBMs, and how their closures would be catastrophic to patient access.
Hear from Yuri Cárdenas, a patient and migraine advocate, who contributed to a new report on PBMs, about the hurdles they have faced accessing and affording medication due to the work of middlemen.
Plus, hearing aids are now available over-the-counter, inflation impacts health care costs for patients, and a new report reveals over a million Americans rationed insulin within the past year.
Hosts:
Terry Wilcox, CEO, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Buddy Carter, pharmacist and U.S. representative for Georgia's 1st congressional district
Yuri Cárdenas, Patient and Migraine Advocate
Links:
Pulling Back the Curtain on PBMs
Prescription drug pricing reform must rein in pharmacy benefit managers
1.3 million Americans with diabetes rationed insulin in the past year, study finds
Steep inflation is hitting the medical sector, too
Addiction drug shows promise lifting long COVID brain fog, fatigue
What to know now that hearing aids are available over the counter
First They Get Long COVID, Then They Lose Their Healthcare
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Data shows more and more young people are being diagnosed with colon cancer. How do we get more screening appointments on the books to keep people healthy?
Learn how a new campaign is changing public opinion around colonoscopies to cut through taboos and prevent cancer before it can even develop. All with a little help from actors Ryan Reynolds and Rob McElhenney.
Plus, hear about a new report that brings patient stories to the forefront of the conversation around pharmacy benefit managers.
Finally, listen in to learn about Jenna Ziegler’s journey as a patient advocate for primary sclerosing cholangitis, a rare disease, and new legislation that could improve patient access.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Brooks Bell, Founder of Lead From Behind
Jenna Ziegler, Patient Advocate and author of the Comical Colon Blog
Links:
Pulling Back the Curtain on PBMs
Lead from behind
The Access to Rare Indications Act
Support the Access to Rare Indications Act here!
Medicare’s cuts to home health are a step in the wrong direction
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Specialty medications can come with a high price tag and specialty mail-order pharmacies, mostly run by pharmacy benefit managers, have frequently created delays in getting necessary medications to patients.
However, new technologies have created a way for clinics and community practices to provide specialty medications to patients directly from their clinics. This makes it possible for clinics to have personalized, in-house pharmacies with shorter waiting periods and stronger doctor-patient relationships.
Learn how Ogi Kavazovic, Co-founder and CEO of House Rx, and Denali Cahoon, the tech start-up’s Chief Pharmacy and Operating Officer, have launched a platform to help clinics make this possible.
Plus, hear about how Sami Leyde’s 14-year journey to get reach a diagnosis led her to create an online blog that documented her experiences with Hypermobile Ehlers Danlos Syndrome.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Ogi Kavazovic, Co-founder and CEO of House Rx
Denali Cahoon, Chief Pharmacy and Operating Officer at House Rx
Sami Leyde, Patient Advocate and author of the ZeBrave Blog
Links:
Industry Voices—Integrating pharmacy into specialty practices improves access, care
House Rx
Alzheimer's drug slows progression of cognitive decline in clinical trial, drugmakers say
Ze Brave Blog
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Is the cost of your health care going up? Have you struggled to access the care your doctor recommends?
A group of physicians and health care experts are working to address these growing problems and make care patient-centered. They propose several reforms that would protect the doctor-patient relationship by reforming the role of hospital and prescription drug middlemen.
Dr. Marion E. Mass and David Balat of Free2Care discuss how the hidden health care giants (Pharmacy Benefit Managers (PBMs) and Group Purchasing Organizations (GPOs)) inflate prices and make patients pay more for the same medical care.
Plus, learn about how the caregiver crisis lead advocate Vanessa Steil to build a community for patients and caregivers.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
David Balat, Executive Director of Free2care and Director of the Right On Healthcare Initiative at Texas Public Policy Foundation
Marion E. Mass, Pediatrician and Co-Founder of Practicing Physicians of America
Vanessa Steil, Patient Advocate and Founder & Creative Director of Living In Steil and The Hospital Bar
Christine Pizanne, Patient Correspondent
Links:
Free2Care Report
Free2Care
How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits
Living in Steil
The Hospital Bar
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Pharmacy Benefit Managers (PBMs) have become embedded in the ecosystem of drug pricing– but these middlemen are one of the reasons patients see high prices at the pharmacy counter.
This episode is a crash course in everything drug pricing with a focus on PBMs, from their inception to their influence on health care costs. Guest Antonio Ciaccia, drug pricing researcher, explains how the key players of the drug supply chain, specifically PBMs, have impacted patients’ access to transparent health care.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Antonio Ciaccia, President of 3 Axis Advisors and Chief Executive Officer of 46brooklyn Research
Kelsey Feng, Correspondent
Links:
46brooklyn Research
3 Axis Advisors
Why Ryan Reynolds is telling people to get a colonoscopy
Intellia's gene editing therapies
Free2Care Report
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
An ongoing 10-year community-based project is improving the health of residents through investments in long-term health programs. Esther Dyson, the founder of Wellville, explains how community collaboration and resident involvement can have positive impacts on quality of life.
Plus, Terry and Dr. Bob discuss the latest health news, including AARP’s new financial report, which shows the bulk of its funding comes from insurance royalty deals.
And news from the FDA reveals the potential link between breast implants and cancer. Kate speaks with Maria Gmitro of the Breast Implant Safety Alliance to hear what this means for the patient community.
Finally, stick around to the end of the show to hear from patient correspondent Ashley Rankin Collins on breast cancer early detection.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Esther Dyson, Founder of Wellville
Maria Gmitro, President and Co-Founder of Breast Implant Safety Alliance
Ashley Rankin Collins, Patient Correspondent
Links:
AARP 2021 Financial Reports
About Wellville
Breast Implant Safety Alliance
FDA MedWatch
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
It takes decades of research, millions of dollars in funding, and numerous failed attempts to develop and approve a new drug for patients. Private investors have helped fund pharmaceutical research and development to bring patients life-saving medicine – but recent policy changes may slow that process down.
Venture capitalist Stan Fleming explains why the industry needs this investment to fund projects that can deliver new therapies to patients with rare and chronic diseases. And, why new policies could deter investors from funding high-risk research projects, particularly for Alzheimer’s and cancer.
Plus, hear from scleroderma advocate Amy Gietzen, as she recaps her time at the We the Patients Fly-In.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Standish Fleming, Founding managing member of Forward Ventures
Amy Gietzen, advocate and patient living with systemic scleroderma
Leslie Davis-Primo, Patient Correspondent
Links:
Patient groups sue feds to crack down on insurer, PBM copay adjustment programs
Tami’s story: Chronic pain patient becomes advocate for health care reforms
Stan Fleming’s op-ed: The outsized effect of ‘modest’ price controls on pharmaceutical innovation
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
In the rare disease community, early diagnosis can put patients on a treatment plan faster and improve outcomes. But that depends on accessible and affordable screenings, genetic testing, and holistic care. Thankfully, there are policy solutions to make that a reality.
August marked Spinal Muscular Atrophy (SMA) Awareness month, so we hear how this community advocates for greater access and affordability to improve care. We get the policy takeaways on how you can raise your voice for the rare disease community. Plus, hear one family’s story about their daughter’s diagnosis of SMA and why advancements in gene therapy are crucial.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Paul Melmeyer, VP of Public Policy & Advocacy, Muscular Dystrophy Association
Lizmara and Angel Figueroa
ChiChi Nnoli, Patient Correspondent
Links:
What Wouldn’t You Do Right Now For Your Child With a Rare Disease? with SMA advocate Khrystal Davis
Early Definitive Diagnosis of Spinal Muscular Atrophy Could Improve Outcomes
This Is Now the Biggest Driver of Employers’ Healthcare Costs, Survey Shows
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Is your Medicare plan giving you the best deal? It’s a tricky question since seniors have no tools to easily determine if their plan has the best price or coverage compared to others.
There’s also a lack of transparency in health plans, particularly with third-party endorsed plans, like those sponsored by AARP. If any organization has a financial incentive to sell a health plan, is that plan in the best interest of the consumer? Or the sponsor who gets a kickback?
Hosts Terry and Dr. Bob unpack that question, and also bring on John Grant, President and Executive Director of Seniors Across America. He shares why now more than ever, seniors need access to accessible, affordable, and transparent care.
And Seniors Rising Now has launched to advocate for critical health care policies! Visit the website and take the pledge to support increased transparency and fairness in Medicare plans.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
John Grant, President and Executive Director, Seniors Across America
Links:
Seniors Rising Now
How the U.S. Will Set Up New Medicare Drug Price Talks
Op-Ed: AARP’s Conflict of Interest
Out-of-Pocket Cost of Naloxone May Keep Many Uninsured from Using Lifesaving Treatment
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
At-home genetic testing allows expecting parents to see if they might be carriers for genetic conditions, like cystic fibrosis or sickle cell. But the data from these tests are only one part of the equation. Patients need access to experts to help them interpret and apply the findings to their health care journey, which can include family planning.
We hear how one company is on a mission to “demystify” genetic testing. Plus, multiple sclerosis and rheumatoid arthritis warrior Kathy Chester shares her diagnosis journey and love for fitness, which still remains strong despite the challenges of living with a chronic disease.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Saman Askari, Co-Founder and CEO, Mitera
Kathy Chester, Podcast House, Move It or Lose It Podcast
Veronica Brotons, Patient Correspondent
Links:
Third Semi-Annual Hospital Price Transparency Report
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Hospitals and insurers are now required to share their prices and negotiated rates with the public. The problem? Most of the data is inaccessible to patients.
Marcus Dorstel, Vice President of Operations at Turquoise Health, shares how his team has sifted through the data to create a tool patients can use to shop for health care services, compare prices, and find quality care. Plus, the shocking price discoveries they made in the process.
Terry and Dr. Bob also discuss how price transparency can help employers create health plan benefits that protect their employee’s physical and financial health.
We also hear from Melissa Moya, the founder and executive director of Lyme Fight Foundation, on her initial Lyme diagnosis and following treatment journey.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Marcus Dorstel, Vice President of Operations, Turquoise Health
Melissa Moya, Founder and Executive Director, Lyme Fight Foundation
Jen (Levi) Paterson, Patient Correspondent
Adam Berkowitz, Founder and President, Simpara
Gill Rodriguez, HR administrator, Shine Solar
Links:
Lyme Fight Foundation
Turquoise Health
President Biden Signs CHIPS and Science Act, Discusses Inflation Reduction Act
New price transparency regulations for hospitals, insurers empower patients
Health Plan Heroes
Rx Relief for All
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Congress inches closer to a massive, 725-page spending bill referred to as “Reconciliation.” It includes several drug pricing provisions that claim to lower Rx costs for seniors. But a closer look reveals that those savings aren’t as widespread as patients might expect.
Terry and Dr. Bob recruit the help of Medicare policy expert Doug Badger to uncover the top facts about the bill that patients need to know.
Plus, hear from Michael Riotto, a multiple myeloma warrior who recaps his experience at the We the Patients Fly-In, including health policies that directly impact his ability to access care. And correspondent Jess Wofford of Pittsburgh gives her perspective as a nurse and patient on PBM practices that hurt access to affordable care.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Doug Badger, Senior Research Fellow, The Heritage Foundation and The Galen Institute
Michael Riotto, Multiple Myeloma Journey Partner, HealthTree
Jess Wofford, Patient Correspondent
Links:
Apply Today! Advocacy Masterclass
RxRelief4All
Watch: Multiple Myeloma Advocate Michael Riotto in DC for We the Patients Fly-In
The Impact of HR5376 on Biopharmaceutical Innovation and Patient Health
CBO Cost Estimate: Reconciliation Recommendations for Prescription Drug Legislation
John Vernon, Fewer Drugs, Shorter Lives, Less Prosperity: The Impact of Comparative Effectiveness Research on Health and Wealth
The Financial Burden of PBM Benefit Design on People Using Specialty Medicines
It’s Time to Expose the Secret Drug Scam at the Heart of American Health Care
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
New procedures and nonopioid pain management give patients cutting-edge treatment options. But they’re frequently out of reach due to a lack of insurance coverage. Hosts Terry and Bob discuss how the bipartisan NOPAIN Act seeks to change that.
Plus, Dr. Stanley Golovac discusses nonopioid options for pain management, and how expanded access can improve patient outcomes in the long run.
And to get the patient perspective, Kate brings on Mugabi Byenkya, chronic pain advocate and author, to talk about accessing treatment options, and Tom Norris from California shares his chronic pain journey.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Dr. Stanley Golovac, Co-founder of Florida Pain
Mugabi Byenkya, Advocate and Author of Dear Philomena
Tom Norris, Patient Correspondent
Links:
Buy "Dear Philomena," via paperback
Buy "Dear Philomena" via e-book
Drug Pricing Negotiations
NOPAIN Act
Reform Medicare’s Payment Policy to Expand Patient Access to Nonopioids
Vertos Mild Procedure
Listen: Terry’s Take Special Episode
August Recess Start Date in the Air as Senators Await Ruling
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In this special bonus episode, Patients Rising Now Executive Director Terry Wilcox provides her perspective as a caregiver to seniors amidst ongoing debates in Congress over how to lower drug costs.
She shares why Medicare price negotiation, a provision within the reconciliation package, won’t lower costs for seniors at the pharmacy counter, and why rebate passthrough is the best hope for patients.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
For 17 years, the gastroparesis community has fought for the FDA to allow it access to a treatment they say is necessary to improve quality of life. Gastroparesis advocate Michael Smith details the efforts to make sure that patient voices spur action at the FDA. Plus, what this means for the broader impact of the FDA across the entire chronic disease community.
Terry and Dr. Bob also discuss the reignited conversation on drug pricing policies in Washington. Kate speaks with migraine advocate Yuri about the misconceptions about this chronic illness and the struggle to get insurance coverage for necessary care.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Michael Smith, Former Vice President of G-PACT and volunteer advisor to the Oley Foundation
Yuri Cárdenas, Patient and Migraine Advocate
Jess Wofford, Patient Correspondent
Links:
Dems try again on drug prices
FDA user fee timeline slipping, raising layoff-notice concerns
Feeling litigious, Vanda files another lawsuit against the FDA
Patients Rising Now Announces Spring Advocacy Masterclass Graduates
Register for the next Patients Rising Advocacy Masterclass
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
Biosimilars have the potential to lower costs. But due to middlemen like pharmacy benefit managers (PBMs), those savings don’t always trickle down to patients at the pharmacy counter. How can we fix this system?
Julie Reed, executive director of the Biosimilars Forum, joins the podcast to explain what biosimilars are, why uptake has been slow, and what can be done to improve patient access and lower costs.
We also hear from Lauren Kopsick, who shares her experience navigating burdensome step therapy requirements for her son’s care.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Julie Reed, Executive Director, Biosimilars Forum
Lauren Kopsick, Founder, Parent it Forward
Becca Vacha, Patient Correspondent
Links:
Patients Rising Now Announces Masterclass Graduates
Patient Action Center
Learning Module: The Role Biologics & Biosimilars Can Play in Healthcare
Lend Your Voice to Support the Safe Step Act Here
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Tired of telling your health care history over and over again to providers? Jessica Lunshof, a former nurse and caregiver found herself in this cycle that wasted time and placed an emotional burden on her and her family.
She joins the podcast to share how she took this challenge and developed a digital solution - TAMVOES - to compile a patient’s health care data into one location. Dr. Bob and Terry discuss how these digital services are on the rise to make the healthcare system easier to navigate for the chronic disease community.
And Kate speaks with Tharaniya, an advocate on a mission to raise awareness of the importance of health literacy. Plus, patient correspondent Jemela Williams underscores the critical need for accessible mental health services.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Jessica Lunshof, Co-Founder and President, TAMVOES
Tharaniya Vallipuram, Host, “Sit, Sip, Synapse”
Jemela Williams, Patient Correspondent
Links:
Terry’s Tweet: Generic cost with insurance versus without
Health insurers are now required to post the price they pay to hospitals
TAMVOES
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Accelerated approval drugs have given patients access to care they otherwise would have waited years for. A new study shows that these drugs account for less than 1% of Medicaid spending - yet programs have placed restrictions on these medicines to curb spending.
We hear from the author of that study, Dr. Kenneth Thorpe, about its findings and alternative solutions to cut costs without compromising patient access to innovative care.
Plus, hear from Lyme Disease advocate Grace Shults about advocacy and the need for improved testing and care for this chronic condition.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Kenneth Thorpe, PhD., Chair, Partnership to Fight Chronic Disease
Grace Shults, Host, Generation Lyme
Jenny Jones, Patient Correspondent
Links:
New Analysis Finds Accelerated Approval Drugs Do Not Drive Medicaid Spending
Deep Inside the Gun Bill: A Break for Prescription Drug Middlemen
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Keyla Caba is a patient advocate who lives with Crohn’s disease and ulcerative colitis. Her son was also recently diagnosed with a chronic disease, and she shares the challenges of being both a patient and a caregiver, mental health, and affording high copays for the care she needs.
In this special episode, Kate Pecora shares her conversation with Keyla, recorded live at the We the Patients Fly-In in Washington, D.C. Hear what led Keyla into patient advocacy and how she fights for the needs of the chronic disease community.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Keyla Caba, Patient Advocate and Ambassador, Color of Crohn’s and Chronic Illness
Links:
Join the Fly-In Conversation on Twitter
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
This week, patients with chronic disease from across the country convened in Washington D.C. for the We the Patients Fly-In. They met with members of Congress and their staff to advocate for several pro-patient health care bills that would improve access, affordability, and transparency.
In this episode, we catch up with several advocates in the halls of Congress to bring listeners inside their meetings with lawmakers about the health care issues that matter to patients.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome Association USA
Jess Woffard, Nurse and IBD Advocate
Tami Seretti, Volunteer Patient Advocate, National Psoriasis Foundation
Links:
Doylestown resident with rare blood disease, others go to DC to speak for people who struggle with health care costs
Join the Fly-In Conversation on Twitter
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results.Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
No insurance? No problem. Blueberry Pharmacy in Pittsburgh is forging the path for a new kind of pharmacy. By cutting out the middlemen in the supply chain, Blueberry Pharmacy is able to provide its customers with inexpensive medications. It’s more transparent, and preserves the personal touch of an independent community pharmacy.
How’s it possible? Founder Kyle McCormick shares how his patients pay such low prices, and what the future of prescription drug access could look like with this model.
Plus, if you need to apply for SSI or SSDI, cancer legal expert Monica Bryant has you covered. She speaks with Terry about what all patients should know about these programs and how to access this insurance.
And speaking of disability insurance, hear from patient correspondent Lori Long. She discusses an SSDI policy currently in place that would cause her to lose her insurance if she gets married.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dr. Kyle McCormick, Founder and Pharmacist, Blueberry Pharmacy
Monica Bryant, COO, Triage Cancer
Lori Long, Patient Correspondent
Links:
AARP’s Billion Dollar Bounty
Understanding Insulin Prices
Blueberry Pharmacy
Kyle McCormick’s Medium Article, “Imitation is the sincerest form of flattery”
How PBMs Raise Costs for Patients + Pharmacies
Can Mark Cuban Deliver Cheaper RX?
Marriage, Ableism, and Social Security Disability - Patients Rising
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
Precision medicine harnesses the power of genetic data, which can improve treatment regimens and overall outcomes for patients. But accessing that data remains another challenge. Field correspondent Kate Pecora speaks with advocate Christine Von Raesfeld about how patient access to data can be a game-changer, and what can be done to expand that across the chronic disease community.
Plus, did you see your 2022 Medicare premium go up? Terry and Dr. Bob discuss why. They also deliver health policy updates from Capitol Hill that impact patients, including new legislation introduced that would shed light on the practices of drug supply chain middlemen known as pharmacy benefit managers (PBMs).
And June marks National Scleroderma Awareness Month. Patient correspondent Amy shares why more research funding is needed to understand this illness.
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Christine Von Raesfeld, CEO and Founder, People with Empathy
Amy Gietzen, Patient Correspondent
Links:
E&C Leaders Unveil FDA User Fees Legislative Package | Democrats, Energy and Commerce Committee
2022 Medicare Costs
Statement from HHS Secretary Becerra: 2022 Medicare Part B Premium Increase Attributable to Alzheimer's Drug Aduhelm
MDUFA Up for Renewal, Congress Recommends a Facelift | Patients Rising Now
June Is National Scleroderma Awareness Month | NIAMS
Pharmacy Benefit Manager Transparency Act of 2022
Grassley, Cantwell Introduce Bipartisan Bill to Combat Rising Prescription Drug Prices and Provide More Transparency
Patients Rising Now Submits Comments to the FTC on the Impact of Pharmacy Benefit Managers on Patients
Patients Rising Now Joins over 100 Associations on Pharmacy Benefit Managers Letter
Prosperdtx Launches Strategic Collaboration with Health Equity Researchers and Seqster to Improve Health Equity for Cancer Patients
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The formula shortage crisis has been devastating for patients with rare metabolic conditions, like PKU, who depend on specialty formulas daily. We hear from patients and families impacted by the shortage, including Lillian Isabella and Sarah Chamberlin, executive director of National PKU News.
But patients have struggled to access and afford these formulas for years, which come with high price tags and aren’t always covered under insurance. A bill in Congress, the Medical Nutrition Equity Act, aims to change that.
And ahead of Memorial Day weekend, Terry and Dr. Bob discuss three health care bills in Congress drafted to improve health care access for veterans.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Sarah Chamberlin, Executive Director, National PKU News
Lillian Isabella, Patient Advocate
Links:
National PKU News
The Effects of the Abbott Hold on the Metabolic Community
Patients and Providers for Medical Nutrition Equity
Metabolic Formula | Patient Stories
Fiscal Year 2022 Veterans Affairs Major Medical Facility Authorization Act
Patient Advocate Tracker Act
SERVICE ACT
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
A shark has entered the prescription drug waters. Entrepreneur and ABC Shark Tank investor Mark Cuban founded the ‘Mark Cuban Cost Plus Drug Company’ which aims to slash prices, improve transparency, and provide greater convenience to patients. How? It cuts out the middlemen, pharmacy benefit managers, from the supply chain.
Plus, as ALS Awareness Month continues, field correspondent Kate Pecora speaks with Giulia, who lost her boyfriend to ALS, about his journey fighting the disease and who received access to a new treatment through compassionate use. And what does the formula supply shortage mean for the rare disease community? Terry and Bob discuss.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guest:
Giulia Diguglielmo, ALS Advocate
Links:
Mark Cuban enters online prescription market 'nibbling at the edge of transparency'
Abbott says deal reached to restart baby formula plant | The Hill
Cost Plus Drugs
ALS Awareness Month: How our fight continues | The ALS Association
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
“Your medication is no longer covered” are the words no patient wants to hear. Yet this is a common occurrence for patients with rare diseases who are on private health insurance plans. In an effort for plans to save money, they’re dropping coverage for rare disease treatments and sending patients to patient assistance funds.
But once those funds are maxed out, it can leave patients on the hook for enormous copays. Guest Randi Clites of the Little Hercules Foundation shares how her son’s hemophilia treatment was dropped unexpectedly from their plan. Now, she’s on the hook for a $21,000 bill.
Kelly Maynard, Founder and President of the Little Hercules Foundation, also joins the show to share how private plans are able to get away with this, and policy solutions that can close the loophole and protect patient coverage for rare disease treatments.
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Kelly Maynard, President of the Little Hercules Foundation
Randi Clites, Rare Disease Policy Director of the Little Hercules Foundation
Angela Deeds, Patient Advocate
Links:
Trends of Prescription Drug Manufacturer Rebates in Commercial Health Insurance Plans, 2015-2019
Hospitals Look to Raise Treatment Costs as Nurses' Salaries Increase - WSJ
Little Hercules Foundation
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In recognition of ALS Awareness Month, we get a report from the frontlines of ALS research, including new breakthroughs that impact patients. Dr. Sharon Hesterlee, the Chief Research Officer at the Muscular Dystrophy Association, gives us the big picture on ALS research and other neuromuscular diseases.
Plus, Terry and Dr. Bob discuss new health legislation, including a bill that would ban the QALY, a discriminatory health care metric that hurts patients with rare or chronic diseases. And Kate speaks with Jenny Jones, an advocate for Familial Adenomatous Polyposis (FAP), about her advocacy work for this rare genetic condition.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Sharon Hesterlee, Chief Research Officer at the Muscular Dystrophy Association
Jenny Jones, Patient Advocate and Author of Life's A Polyp
Sara Healy, Patient Correspondent
Jana Healy, Patient Correspondent
Links:
Terry Wilcox Applauds QALY Ban Bill - Patients Rising Now
Amyotrophic Lateral Sclerosis (ALS) - Diseases | Muscular Dystrophy Association
Rodgers, Banks, & Wenstrup Lead QALY Ban to Affirm Every Person's Life has Value - Energy and Commerce Committee
QALY Bill | H.R.7634 - Protecting Health Care for All Patients Act of 2022
ICER to Assess Treatments for Amyotrophic Lateral Sclerosis
MOVR Data Hub (neuroMuscular ObserVational Research) | Muscular Dystrophy Association
Life's A Polyp - Youtube Channel
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Have you ever felt overwhelmed or confused in your health care journey? Many patients juggle numerous phone calls and appointments with labs, pharmacists, and specialists, while also trying to understand what is and isn’t covered. To help, some health plans have recruited nurse navigators, like Faith Barron.
In this episode, Faith provides a look into the role of nurse navigators and how she helps patients find high-quality providers, understand their medical claims, and triage communication from all members of the care team.
Field correspondent Kate Pecora also speaks with one of Faith’s patients, Sheridan Keck. She shares how Faith guided her through her cancer diagnosis.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Faith Barron,RN, Nurse Navigator, Concierge Nurse Navigators
Sheridan Keck
Links:
Alzheimer's Trials Exclude Black Patients at 'Astonishing' Rate
Why We Need Patient Diversity in Clinical Trials
Full Committee Hearing: FDA User Fee Agreements: Advancing Medical Product Regulation and Innovation for the Benefit of Patients, FDA Center Directors
Health Plan Hero
Health Plan Hero: Matheny Motors
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Frustrated with the health care system? Want to improve health care access, affordability, and transparency for you or a loved one? Learn how to make your voice heard by decision-makers on Capitol Hill by joining us for our 2022 #WeThePatients Fly-In happening on June 14th and 15th in Washington, D.C.
Terry and Dr. Bob outline the top policy priorities for the chronic illness community and fibromyalgia patient advocate Melissa Talwar underscores the importance of patient advocacy and how you can embark on your own advocacy journey.
And field correspondent Kate Pecora takes listeners international with her conversation with Megan Staley, who gives listeners a look into her life with Behcet’s and endometriosis.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Megan Staley, Patient Advocate
Melissa Talwar, Executive Director, Support Fibromyalgia Network
Links:
Attend the 2022 We the Patients Fly-In
Patient Education
Advocacy Master Class - Patients Rising Now
Patients Rising Now
Endo Girl - Youtube Channel
Hospitals' massive cancer drug markups
Contributor: Reform Medicare's Payment Policy to Expand Patient Access to Nonopioids
Season 3 | Episode 13: How PBMs Raise Costs for Patients + Pharmacies
Patients Rising Now
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Transportation to and from appointments, or lack thereof, is a major hurdle facing patients who contact our Patients Rising Concierge team. Any delays caused by transportation have a domino effect on a patient’s healthcare journey and can lead to poor outcomes.
Samantha Smith, our Patient Navigator at the concierge desk, handles transportation challenges for patients daily. She shares helpful resources to help you understand insurance coverage for transportation, how to find local and community-based services, and tips for booking transit if you have a specific illness or medical device need.
And hear Kate Pecora’s interview with Dr. Bageshree Cheulkar of Virtua Health on the community transportation services provided to patients, and how they can impact health outcomes.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Dr. Bageshree Cheulkar, Senior Project Manager, Community Based Services, Virtua Health
Samantha Smith, Patient Navigator, Patients Rising Concierge
Links:
White House proposes fix to 'family glitch' in ObamaCare | The Hill
Harris says White House will seek to ease Americans' medical debt burden
The Real Costs of Diabetes + Alzheimer's | Patients Rising Podcast
Ride Health Program | Virtua Health
Patients Rising Resource Hub
Patients Rising Transportation Resources
Terry Wilcox Statement on CMS' Coverage Determination for Alzheimer's - Patients Rising Now
A Survey to Better Understand the Role of Transportation in Healthcare
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The access and affordability challenges that face patients with Alzheimer’s and diabetes are not uncommon. In fact, they impact all patients within the chronic disease community. Hosts Terry and Dr. Bob explore underlying issues throughout the healthcare supply chain that have hindered patient access, including rebates.
This follows the House of Representatives passing the Affordable Insulin Now Act, which would cap insulin costs at $35 a month. George Huntley, CEO of the Diabetes Leadership Council, shares what this would mean for patients, and patient correspondent CJ Walker explains how the bill fails patients who are uninsured.
And in the wake of CMS' decision to restrict coverage of Alzheimer’s treatments to those in clinical trials, we air a conversation with Jim and Geri Taylor, who founded the Voices of Alzheimer's organization after Geri was diagnosed with Alzheimer's in 2012.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
George Huntley, CEO of Diabetes Leadership Council
Geri Taylor, Founder of Memory Advocate Peers, Patient advocate
Jim Taylor, Founder of Memory Advocate Peers, Patient advocate
CJ Walker, Patient Correspondent
Links:
Diabetes Leadership Council
Who We Are | Memory Advocate Peers
House Passes Bill to Limit Cost of Insulin to $35 a Month - The New York Times
CMS Proposes Medicare Coverage Policy for Monoclonal Antibodies Directed Against Amyloid for the Treatment of Alzheimer's Disease
More than $300 Billion in Health Care Spending Goes to Middlemen. We Need Accountability.
HRSA calls for Boehringer Ingelheim to be fined over 340B contract pharmacy restrictions | Fierce Healthcare
Insulin Copay Cap Passes House Hurdle, But Senate Looks for a Broader Bill | Kaiser Health News
Walmart, Amazon up the ante in pharmacy | Supermarket News
Medicare finalizes its restrictions on new Alzheimer's drug, despite pressure from drugmakers
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
One reason behind high costs at the pharmacy counter? Pharmacy benefit managers. PBM practices, like clawbacks and spread pricing, not only hurt patients but also impact community pharmacies that serve rural and underserved populations.
In this episode, the Patients Rising team gets into community pharmacies with Ronna Hauser and Matthew Seiler of the National Community Pharmacist Association (NCPA). They detail the challenges that face pharmacists, how they trickle down to impact patients at the counter, and what an FTC investigation into PBM actions could reveal.
Plus, April kicks off World Autism Month! Field correspondent Kate Pecora speaks with Mason Milne on how he advocates for the autistic and Crohn’s disease communities.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Ronna Hauser, SVP of Policy and Pharmacy Affairs at NCPA
Matthew Seiler, VP and General Counsel at NCPA
Mason Milne, Podcast Host, Crohn’s and Autism Awareness Advocate
Elisa Comer, Patient Correspondent
Links:
Independent Pharmacists Blanket Congress with Letters on Pharmacy DIR Reform | NCPA
Community Pharmacy Makes Goal Line Push to Eliminate PBM Spread Pricing | NCPA
PBM Resources | NCPA
Crohn's & Autism Awareness Advocate | iHeart
Leadership Team | NCPA
Making healthcare options more accessible on Search
Public Comments | Federal Trade Commission
Michigan Gov. Signs Laws To Combat Opaque PBM Practices | InsideHealthPolicy.com
Gov. Whitmer Signs Bipartisan Bills to Lower Prescription Drug Costs for Michiganders
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
$0 deductibles and $1 prescriptions. It sounds almost too good to be true, but companies across the country have made these health plans a reality for their employees.
For the past two decades, the cost of insurance premiums and deductibles have skyrocketed, leaving Americans with medical debt, constant switching of coverage, and deductibles that are impossible to meet.
Enter the 2022 Health Plan Hero companies. They are health insurance plan trailblazers who have diverged from the status quo. Hear from company leadership, employees, and benefit advisors who share how they have reshaped the benefit design of their insurance to save employers and employees money, while also improving healthcare coverage and care options.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Jaime Matthews, HR Director, Schaefer Autobody
David Johnson, Managing Partner, Alera Group
Lance Young, Director of Administration, Shine Solar
Adam Berkowitz, Benefits Advisor & Founder, Simpara
Gil Rodriquez, HR Administrator, Shine Solar
Matt Martin, HR Administrator, Matheny Motors
Anissa Rose, Employee, Matheny Motors
Bryce Heinbaugh, CEO, IEN Risk Management
Brittaney Medders, Employee, Johns Soules Food
Michelle Archer, Employee, Woodard Cleaning & Restoration
Sheridan Keck, Spouse of a Employee of Matheny Motors
Links:
Health Plan Heroes
Most Medical Debts To Be Removed From Consumers Credit Reports
Most medical debt will not appear on your credit report if it's been paid off | CNN Business
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at
PatientsRisingConcierge.org
Healthcare discussions in Washington are in full swing this week. Both the House and Senate meet to discuss a multitude of bills affecting everyday Americans, specifically those with rare and chronic diseases. Hosts Terry Wilcox and Dr. Bob break down the D.C. lingo and highlight three healthcare bills that will shape access to care and elevate patient voices: Cures 2.0, the BENEFIT Act, and the STAT Act.
Lastly, what does the future hold for telehealth appointments? The use of telehealth medicine has skyrocketed, but does your insurance cover it? Hear from Monica Bryant, Chief Operating Officer at Triage Cancer, who gives the must-ask questions patients should ask of their insurance plan to find out if they’re covered.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Monica Bryant, Chief Operating Officer Triage Cancer
Links:
Benefit Act
Cures 2.0
STAT ACT
What is Telemedicine | Will it be accessible to those who need it most?
Senate Hearing: Prescription Drug Price Inflation: An Urgent Need to Lower Drug Prices in Medicare
House Hearing: on "The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight" | Democrats, Energy and Commerce Committee
Triage Cancer
What is “Telehealth” & Does Your Insurance Cover it? Resources
Telehealth Has Played an Outsized Role Meeting Mental Health Needs During the COVID-19 Pandemic
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Will free vaccines for Medicare patients improve health and lower overall costs? The quick answer, maybe. Doug Badger, former policy advisor to the White House, explains the pros and cons of eliminating cost-sharing for preventative vaccines under Medicare, and what it means for patient health and finances.
Are you also experiencing longer wait times at your doctor's office? If you said yes, you are not alone. A new study conducted by the CVS Health-Harris Poll National Health project reports that Americans notice a significant decrease in the availability of their healthcare providers.
Plus, March marks Multiple Sclerosis Awareness Month! This week Kate Pecora spoke with Ritu Kaur, who uses social media to unite the MS community around the globe.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Doug Badger, Senior Fellow at the Galen Institute
Ritu Kaur, Multiple Sclerosis Patient Advocate
Links:
S2 Ep5 | The Politics of Healthcare
MS lets fight | MS Awareness Instagram
Medicare COVID-19 Vaccine Insurance Coverage
The health worker shortage is starting to get real for Americans
Pallone Introduces Bill to Improve FDA's Accelerated Approval Program | Democrats, Energy and Commerce Committee
Rally for Access March Information
Medicare Part D
Analyzing Medicare Vaccine Policy
Become a Patient Correspondent
Connect with Kate for an Interview
Submit Your Patient Story
Need help?
A successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into our own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code to get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
How can low-income communities afford costly medications? A government program called 340B, which was originally created to help low income patients, now generates significant income for hospitals. Find out what caused this program to falter and how Congress can get it back on track with today's guest speaker Dr. Bill Smith. Dr. Smith, the current visiting Fellow at the Pioneer Institute, talks with our hosts Terry and Bob as we dissect what is at stake for low- income patients and their ability to afford prescription drugs.
To catch you up on all the latest health care news, take a listen to Terry and Bob as they provide weekly updates on what's happening in Washington. From the Affordable Insulin Now Act to understanding the debate on employer-sponsored care, we have the news all chronic disease patients and advocates need to know today.
We also hear from Alyse as she shares her story on costly over-the-counter vitamins needed to treat a calcium deficiency.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
William (Bill) Smith, Ph.D., Pioneer Institute’s Visiting Fellow: Life Sciences
Alyse, Patient Advocate
Kimberly Gonzalez, Patient Correspondent
Links:
340B Drug Pricing Program | US Health Resources & Services Administration
‘We don’t know how to survive here’: a cancer ward for Ukrainian children under seige
Medicare Part D
Davis, McEachin Introduce Bipartisan Legislation to Prevent Increased Prescription Drug Costs - Congressman Rodney Davis
Season 3 | Episode 7: Meet the Healthcare Mafia (And How to Stop It)
Bennet, Warnock, Colleagues Introduce New Bill to Cap Costs of Insulin in Colorado, Across the Country | Press Releases | US Senator Michael Bennet
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
As Rare Disease Month comes to a close, we take a look at a major piece of legislation that impacts the FDA, and consequently, patients with rare diseases.
With the Prescription Drug User Fee Act (PDUFA) up for renewal in Congress, much is at stake for the rare disease community. This act expedites the drug reviewal process for new treatments, including those for patients with rare and unmet medical needs. Without it, drug reviews would slow down dramatically. And speaking of the FDA, the agency finally has a new Commissioner, Dr. Robert Califf. How will he shape the agency?
To give listeners an inside look, Terry and Bob speak with past FDA Associate Commissioner Peter Pitts, who explains the importance of PDUFA and what Dr. Califf will bring to the patient community.
And to conclude rare disease month, Kate Pecora speaks with patient advocate Yolanda Bermudez. Hear her story as she discusses how her rare disease changed her cancer journey.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Peter Pitts, Co-founder and President of the Center for Medicine in the Public Interest
Yolanda Bermudez, Patient Advocate
Annika Wojtowicz, Patient Correspondent
Jearlean Taylor, Patient Correspondent
Links:
Prescription Drug User Fee Amendments | FDA
PDUFA Renewal and the FDA: What Do Patients Need to Know?
Twitter | PatientsRiseNow Health Subcommittee Hearing on PDUFA
Robert M. Califf M.D | FDA Commissioner
Peter Pitts | CMPI
The Affordable Insulin Now Act
Creating a promising pathway for faster access to new drugs — and a Califf confirmation
Raphael G. Warnock
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Chronic disease patients often fall victim to high healthcare costs due to supply chain 'middlemen' otherwise known as Group Purchasing Organizations (GPOs). David Balat, Executive Director at Free2Care, discusses how eliminating kickback protections for middlemen can lower overall healthcare costs and lead to further transparency in the industry. Repeal of that protection, known as Safe Harbor, could also bolster innovation, increase competition, and reduce costs.
Plus, hear from Terry and Dr. Bob as they break down this week's topics in healthcare policy to understand how chronic disease patients can have more accessible, affordable, and transparent care in the future.
Field correspondent Kate Pecora also speaks with Erin Galyean, the Author of BadAss Advocate, on how to become a fierce champion for the person you care for.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
David Balat, Executive Director, Free2Care
Erin Galyean, Author of Badass Advocate
Tomi Womack, Patient Correspondent
Links:
Badass Advocate
Lowering Healthcare Costs through Safe Harbor Repeal | David Balat
Free2Care
Health Care Initiative | Texas Public Policy Foundation
Free2Care | GPO's
FTC may probe pharmacy benefit managers
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
A bid for universal healthcare falters in California. Meanwhile, the state is posed to take up misleading “Right to Repair” legislation that would allow technicians who are not held to FDA safety standards to operate on medical equipment. What are the ripple effects for patients across the country? Health policy expert Sally Pipes of the Pacific Research Institute explains what patients should know.
And hear about what’s happening at the federal level, including potential bipartisan solutions for drug pricing legislation and Medicare coverage for COVID-19 tests.
Plus, guests Eric Koleda and James Barley discuss how hyperbaric oxygen therapy (HBOT) has helped veterans overcome PTSD and traumatic brain injuries (TBI). However, accessing and affording this care remains a challenge. And the “Real Forrest Gump,” Vietnam Veteran Sammy Lee Davis and his wife Dixie share their personal stories about how HBOT has impacted their lives.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Sally Pipes, President and CEO, Pacific Research Institute
Eric Koleda, Veteran and Director of HBOT4KYVETS
James Barley, Brigadier General, Desert Storm and Vietnam Veteran
Sammy Lee Davis, “The Real Forrest Gump,” Medal of Honor Recipient
Dixie Davis
Links:
TreatNOW
Cancer Moonshot Fact Sheet
Universal Healthcare - CA
Right to Repair Act
Biden-Harris Administration Will Cover Free Over-the-Counter COVID-19 Tests Through
Medicare | CMS
Build Back Better Act
Hyperbaric Oxygen Therapy: Get the Facts | FDA
HBOT for Kentucky Vets
Letter Supported: Opposition to any “Right to Repair” Legislation - Patients Rising Now
Survey: Most Californians believe worst of COVID is over | The Sacramento Bee
California's single-payer bill dies - POLITICO
Is Your Medical Equipment Safe? | Patients Rising Podcast
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
With Congress back in D.C. this week, the hill looks to debate on current legislation. This includes the Build Back Better plan, which has several health policies that would affect patients, particularly those on Medicare. To discuss these policies we hear from health policy expert Charla Penn from Winning Strategies Washington. While the future of BBB appears dim, she shares what policies might survive, be scaled down, or cut altogether.
Plus, hear from Beth Waldron, a patient advocate who suffers from both deep vein thrombosis DVT and pulmonary embolism PE. Beth’s insurance company recently forced her to be non-medically switched from a blood-thinning medicine she’s been stable on for the past eight years. Learn more about how insurance companies can hinder the doctor-patient relationship for chronic disease patients across the country.
And do you have a favorite Superbowl snack? Terry and Bob weigh-in.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Charla Penn, Health Care Policy Specialist, Principal at Winning Strategies Washington.
Beth Waldron, Patient Advocate
Beth Steckler, Patient Correspondent
Links:
Build Back Better Plan
AARP Insurance
Exclusive: US diabetes deaths top 100,000 for second straight year | Reuters
AARP's Stop Rx Greed Campaign Should Focus on AARP's Rx Greed
Terry Wilcox Op-Ed: AARP’s drug pricing conflict of interest
Real Stories from People Who Have Experienced Blood Clots - Beth Waldron | CDC
Non-Medical Switching Hurts Patients Rising Podcast Episode
Center for Medicine in the Public Interest
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Congress is quiet on health policies this week, but the federal health agencies are making noise. Terry and Dr. Bob cover the controversy over CMS’ proposed coverage decision for a new Alzheimer’s treatment. And learn about the FDA’s decision to make hearing aids more accessible.
Plus, Medicare receives scrutiny over not reimbursing at-home tests for seniors. And when it comes to COVID treatments, high demand and low supply present new challenges in the fight for health equity.
And hear from psoriasis and psoriatic arthritis patient advocate Diane Talbert, who previews an upcoming collaboration to create a community space for patients with psoriatic arthritis.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Dr. Joel Zinberg, MD, Senior Fellow, Competitive Enterprise Institute
Diane Talbert, Psoriasis and Psoriatic Arthritis Patient Advocate
Jenny Jones, Patient Correspondent
Links:
Build Back Better Act
Public Health and American Well-Being - Paragon Institute
The Alzheimer's Death Panel - WSJ
Attorney General John Formella Urges FDA to Preserve State Regulation of Over-the-Counter Hearing Aids
Seniors are at high risk of COVID, but Medicare Doesn’t Pay for Rapid Tests
Race as a factor in COVID treatments
Opinion: New York’s racial ‘risk factor’ for COVID treatment is illegal and immoral
The newest pandemic wedge issue: Sotrovimab
How Sesame Street is Handling the Pandemic
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
If you’ve ever felt like your healthcare providers were dismissive of your knowledge and preferences when it comes to making the decisions about your treatment, then this episode is for you!
In this episode, learn about shared-decision making in medicine, and how patients partner with their doctor to evaluate, understand, and decide on their own healthcare and treatment choices.
Dr. Talya Miron-Shatz, medical decision-making expert and author of the book, Your Life Depends on It: What You Can Do to Make Better Choices About Your Healthdiscusses the benefits of having access to all potential medical outcomes and care options in order to make the right choice for you. This transparency gives patients individualized care and an ability to co-decide on medical treatments.
And learn about the No Surprises Act, a new law to protect you from surprise out-of-network bills. Legal expert Monica Bryant explains what patients should know about the law and how it will impact emergency care.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dr. Talya Miron-Shatz, Author Your Life Depends on It: What You Can Do to Make Better Choices About Your Health
Jim Sliney Jr., Director of Patient Outreach
Monica Bryant, COO, Triage Cancer
Links:
Dr. Miron Shatz’s book, Your Life Depends on It: What You Can Do to Make Better Choices About Your Health
Ted Talk by Baba Shiv
Factors Associated with Overuse of Health Care Within US Health Systems
NHS Predict Tool
Surprised by a Medical Bill? Here’s What to Do
State Consumer Protection Agency
Triage Cancer - State Laws
No Surprises Act
CMS - No Surprises Act Homepage
1-800-985-3059 - CMS Helpline for the No Surprises Act
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
States are like dominos. When one state enacts a health policy, others replicate. Oregon’s Medicaid draft 1115 waiver has several red flags for patient healthcare access, and all patients should watch this carefully.
Meghan Moyer, the public policy director at Disability Rights Oregon, explains why the waiver is a concern for chronic and rare disease patients. From discriminatory healthcare metrics that determine coverage to a closed formulary that would hinder access to FDA accelerated approval drugs, it’s filled with problems for patients.
Plus, get the latest news on Medicare. Terry and Dr. Bob explain what you need to know about a proposed CMS Rule that attempts to lower costs in Medicare Part D, plus the limited Medicare Part B coverage for Alzheimer’s treatments.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Meghan Moyer, Public Policy Director, Disability Rights Oregon
Jim Sliney Jr., Director of Patient Outreach, Patients Rising
Janet Roberts, Patient Correspondent
Links:
Patients Rising Now’s Comments on Oregon’s 1115 Waiver and Impact on Access
The Rare Access Action Project’s Comments on Oregon’s Health Authority’s Section 1115 Waiver
CMS Takes Action to Lower Out of Pocket Medicare Part D Prescription Drug Costs
Section 1115 State Waiver List - Medicaid
Medicare limits Aduhelm Coverage Clinical Trials
Bob Saget's remembered as a Scleroderma advocate
" For Hope " Movie Produced by Bob Saget
Patients Rising Advocacy Master Class Application
Share your healthcare story on the podcast!
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
With COVID-19 cases on the rise, remote care through telehealth is critical to keep patients safe. But it also serves a vital role beyond the pandemic. For chronic disease patients, it can unlock greater access to care regardless of where you live.
Former U.S. Secretary of the Department of Veterans Affairs, Dr. David Shulkin, led the charge to implement telehealth services within the VA. His model is a blueprint for success for broader telehealth adoption across all patient populations. Plus, Terry and Dr. Bob debunk the myth that telehealth isn’t a legitimate option for chronic and rare disease patients.
And Wisconsin rare disease advocate Kerri Engebrecht shares her mission to make patient voices heard by establishing a Rare Disease Advisory Council within the state legislature.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
David Shulkin, MD, Former U.S. Secretary of the Department of Veterans Affairs
Kerri Engebrecht, Wisconsin Rare Disease Advocate
Nikki Lott, Patient Correspondent
Links:
The No Surprises Act Took Effect January 1; Here’s What It Means for Your Medical Bills
FDA Authorizes Pfizer COVID-19 boosters for 12 to 15 year olds
White House Aims to Improve Government’s Healthcare ‘Customer Service’
Telehealth in the Post-Pandemic World: What Do Stakeholders Want?
Telemedicine As The New Face of Healthcare in the US?
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
For the chronic disease community, 2022 is set to be a major year of health policy. On this episode, Republican and Democrat political experts weigh in on what’s on the horizon for healthcare policies in the new year.
Matt Rodriguez, a democrat political strategist, and Doug Badger, a conservative public policy expert at the Heritage Foundation, share their insights on the politics of healthcare. The roundtable conversation dives into drug price setting in Build Back Better, insulin price caps, COVID-19 response, and how healthcare issues will shape the 2022 midterm elections.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Matt Rodriguez, Founder and CEO, Rodriguez Strategies
Doug Badger, Senior Fellow for Domestic Policy Studies, The Heritage Foundation
Links:
GOP Report: Role of Pharmacy Benefit Managers in Pharmaceutical Markets
Dem Report: Unsustainable Drug Prices: Findings from the Committee’s Drug Pricing Investigation and the Need for Structural Reforms
Democrats’ plan to cap consumer insulin costs face GOP threat, skeptical advocates
The U.S. health secretary hints that more federal funds may be needed to fight an Omicron surge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
A doctor knows their patients’ needs best. But too often, insurance gets in the way. In an effort to lower costs, insurers sometimes force stable patients off of prescribed medication to a cheaper option. It’s called non-medical switching, and can harm a patient’s health.
We hear from Gary Lawson, who shares the story of his son’s extreme case of Crohn’s disease. After finally finding a treatment that alleviated his painful symptoms, his insurance company non-medically switched him against his doctor’s advice.
Plus, learn about the ongoing advocacy efforts to make airplanes wheelchair accessible. Field correspondent Kate Pecora speaks with the founders of All Wheels Up, an organization actually crash testing wheelchairs for commercial flights.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Gary Lawson, Lawson Attorneys PLLC
Michele Campanelli-Erwin, President and Founder, All Wheels Up
Alan Chaulet, COO and Founding Board Member, All Wheels Up
Ella Balasa, Patient Correspondent
Links:
Biden’s FDA pick on track for confirmation with GOP help
Nearly one-third of Americans skipped care in the past three months due to cost: poll
Update on the Phase 4 Confirmatory Study of Aduhelm
Register Today: Patients Rising Advocacy Masterclass
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Have you received an unfair medical bill? You’re not alone. Many patients have faced high bills that are simply incorrect, or even predatory. But let’s face it, even understanding complex and confusing bills is a huge challenge. Patients Rising wants to arm you with how to fight back on this week’s episode.
Investigative journalist Marshall Allen has worked with patients for years. He’s dug into their medical bills to understand the ins and outs of medical billing. He shares his tips to empower patients to fight back against unfair charges.
And hear from a patient about her own medical bill drama: DeeAnn Dean’s husband, Jason, received a bill for over $6,000 for just six stitches, leading her to delay her own medical care out of fear they’d receive another astronomical tab.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Marshall Allen, author, Don’t Pay the First Bill
DeeAnn Dean
Morgan Fitzgerald, Patient Correspondent
Links:
Senate passes bill to delay nearly 10% in Medicare cuts expected to start in January
The ER charged him $6,589.77 for 6 stitches, a cost that led his wife to avoid the ER
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Today’s medical research and development creates the cures of tomorrow. But it requires immense amounts of funding to develop safe and effective drugs, treatments, and medical devices. In the rare disease space, funding is in short supply.
Hear how rare disease organizations harness the power of grassroots advocacy to raise support for their community. Dawn Ireland, President and Founder of Congenital Diaphragmatic Hernia (CDH) International, shares how she launched the first CDH organization from her living room over twenty years ago, their ongoing successes, and the road ahead.
Plus, parents Zach and Shelby Gallegos share the story of their nearly one-year-old daughter, Reagan, who is a CDH survivor. They give listeners a glimpse into their lives and the challenges of this rare birth defect.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Dawn Ireland, Founder and President, CDH International
Zach and Shelby Gallegos, Parents to Reagan
Stephanie Tomlinson, patient correspondent
Links:
Statement: Build Back Better Offers No Guarantee to Lower Patient Costs
Watch: President Biden Delivers Remarks on the Cost of Prescription Drugs
Documents Reveal the Secrecy of America’s Drug Pricing Matrix
Watch: Biosimilar Discussion Lab
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The Senate faces a race to the end of the year with a mountain of healthcare policies on its plate. Taking center stage is the House’s version of the Build Back Better plan. But it’s likely to undergo several changes, all of which will impact the chronic disease community.
Hosts Terry and Dr. Bob break down the legislative process ahead. Specifically, three key healthcare provisions at risk in the Senate: price caps, transparency rules for pharmacy benefit managers, and the $35 monthly insulin price cap.
Plus, still deciding on a health plan? Legal expert Monica Bryant of Triage Cancer delivers her tips for open enrollment season. Learn what to look for in a health plan and how to use it effectively.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Monica Bryant, COO, Triage Cancer
Gay Grossman, Patient Correspondent
Links:
Squawk Box: Scott Gottlieb
Moderna CEO says it will take months to clear a new Covid vaccine targeting omicron
Perspective: We don’t need universal booster shots. We need to reach the unvaccinated.
Senate Parliamentarian could further narrow Democrats’ Build Back Better bill
Letter: AHA urges Congress to provide relief from forthcoming Medicare sequester cuts
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Half of individuals with health insurance are covered by their employer. If you are in this group, this episode is a must-listen. Learn how benefit design impacts your out-of-pocket expenses, your in-network providers, and the care available to you.
Host Terry Wilcox is solo this Thanksgiving week, and brings listeners a feature interview with Dave Chase of the Health Rosetta. Together, they explore how to transition high-cost benefit design into transparent, affordable, and accessible healthcare. Plus, how to bring employers into these key healthcare conversations.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Dave Chase, Creator, Health Rosetta
Links:
Tedx Talks: Healthcare Stole the American Dream - Here’s How We Take it Back
Understanding LOCAL
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Cold and flu season is here. If you are immunocompromised, respiratory infections pose an even greater risk. Antibiotics are a common go-to solution, but there’s a catch: the more we use them, the less effective they become.
Dr. John Rex of AMR.Solutions explains antimicrobial resistance, and why we should view these drugs as fire extinguishers. Plus, how the PASTEUR Act can bolster research and development of antimicrobials.
And hear from cystic fibrosis patient advocate Ella Balasa on how antibiotics impact her health. She shares her healthcare journey and why it’s critical that antibiotics are used carefully to ensure they’re effective for those most vulnerable.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
John Rex, MD, Editor-In-Chief, AMR.Solutions
Ella Balasa, Cystic Fibrosis Advocate
Desiree Rubio, Patient Correspondent
Links:
Biden nominates Califf as FDA chief
How Democrats’ Build Back Better Plan Would Spike Seniors’ Drug Costs
PASTEUR Act
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
This Veteran’s Day, hosts Terry and Dr. Bob explore potential federal policies to improve healthcare for U.S. veterans. Congresswoman Nancy Mace (SC-01) serves on the Veterans Affairs Committee and she joins the show to share what Congress can do to improve veteran healthcare. As the daughter of a retired Army General, it’s a personal issue.
Plus, Kate Pecora speaks with Air Force veteran Eric Koleda about a growing health issue among veterans: traumatic brain injuries. He shares the work his organization TreatNOW is doing to connect veterans with hyperbaric oxygen therapy to heal brain wounds, and the legislative efforts to increase access to this care.
And after a busy week in Washington, Terry and Dr. Bob get to the core of what patients and caregivers should know.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Congresswoman Nancy Mace, Representative, South Carolina District 1
Eric Koleda, Director of State Legislative Efforts, TreatNOW Coalition
Wanda Green, Patient Correspondent
Links:
No Surprises Act Letter
The Mission Act is supposed to help US veterans get health care outside the VA. For some, it’s not working.
Book: In the Company of Men: A Woman at the Citadel
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Hosts Terry and Dr. Bob catch up with patient advocates following their virtual meetings on Capitol Hill. Patients Rising Now Patient Advocacy Day, held at the end of October, had patients and caregivers sharing their healthcare stories and asking for support on important bills to improve access and affordability to care, like the Safe Step Act and more.
Plus, a new report on myasthenia gravis therapies raises red flags. Health economist Dr. Paul Langley examines the latest report from the Institute for Clinical and Economic Review (ICER), and explains why it could hinder patient access to important myasthenia gravis therapies.
And if you’re confused by Medicare, don’t worry! Legal expert Monica Bryant of Triage Cancer breaks down all the different kinds of Medicare, and what patients should know when choosing a plan.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Maria Gmitro, President, Community Outreach and Patient Advocacy Director, TrackMy Solutions
Christine Von Raesfeld, Founder/CEO, People with Empathy
John Linnel, State Captain, COPD Foundation
Nisha Trivedi, Rare Disease Advocate
Paul Langley, Ph.D., Lead Researcher, Patient Access and Affordability Project
Monica Bryant, COO, Triage Cancer
Links:
Safe Step Act
Improving Seniors’ Timely Access to Care Act
BENEFIT Act
Worksheet: Medicare Plan Options Comparison
Health Insurance Laws by State
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
No two patients are the same, so often care teams can’t predict a treatment outcome from one patient to the next. That’s where biomarker testing comes in: the first step in personalized medicine.
Biomarker tests help physicians identify specific treatment options a patient will respond to best based on biologic factors. The problem? The testing isn’t accessible for all patients.
Hilary Gee Goeckner of the American Cancer Society Cancer Action Network shares why biomarker testing is so critical, the health equity implications, and how to expand access through policy. Plus, Alecia Mandal shares how biomarker testing allowed her to receive immunotherapy for her colorectal cancer, which she credits to her current health.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Hilary Gee Goeckner, Senior State and Local Campaigns Manager - Medicaid, American Cancer Society Cancer Action Network
Alecia Mandal, colorectal cancer advocate
Melissa Strader, Patient Correspondent
Links:
FDA approves Cyltezo as first interchangeable biosimilar for inflammatory disease
Share Your Story About Precision Medicine and Biomarker Testing
State Policy Principles to Support Access to Biomarker Testing
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Congress promises to lower drug prices. But patients won’t see any cost savings at the pharmacy counter.
We sort through the facts and myths of drug pricing, how “middlemen” in the supply chain lead to higher costs and real solutions to lowering out-of-pocket costs for patients. Clinical pharmacist and health economist Dr. Robert Popovian dives into the complicated world of drug pricing and simply explains how it impacts patients' health and pockets.
As part of Breast Cancer Awareness month, metastatic breast cancer patient Pam Kohl shares her healthcare journey and what patients should know about the risks of extravasation during scans and treatments.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Robert Popovian, PharmD, Chief Science Policy Officer, Global Healthy Living Foundation
Pam Kohl, metastatic breast cancer patient and advocate
Kathi Luis, Special Projects Director, Amyloidosis Foundation, patient correspondent
Links:
Biden eyeing FDA veteran Robert Califf to lead the agency
Francis Collins to step down as director of the National Institutes of Health
J&J recipients should ‘feel good’ about booster dose recommendation: Fauci
Flow of Money Through the Pharmaceutical Distribution System
Gross-to-Net Bubble Update: Net Prices Drop (Again) at Six Top Drugmakers
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
COVID-19 continues to put the most vulnerable at risk, including the elderly and those with chronic illnesses. At its peak, it filled up hospitals and forced those seeking non-COVID care to postpone critical appointments. To protect patients and caregivers from the next pandemic, the government needs to adapt, change, and prepare.
Former FDA Commissioner Dr. Scott Gottlieb shares where the government response failed, how to address pandemic preparedness through a national security lens, and ways to bolster the research and development of therapeutics. Plus, field correspondent Kate brings us part two of her conversation with Dorothea Lantz on her son’s diagnosis of Prader-Willi Syndrome and the impact of growth hormones on his life.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Scott Gottlieb, MD, Former FDA Commissioner
Dorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome Association
Maggie Senese, Patient Correspondent
Links:
New Legislation Aims to Eliminate Some Prior Authorization Burdens
WHO recommends groundbreaking malaria vaccine for children at risk
Pfizer officially asks the FDA to authorize its COVID vaccine for kids aged 5-11
BOOK: Uncontrolled Spread: Why COVID-19 Crushed Us and How We Can Defeat the Next Pandemic
NORD Statement on Proposed Changes to the Orphan Drug Tax Credit
Impact of the Orphan Drug Tax Credit on treatments for rare diseases
PWSA: Save the Orphan Drug Tax Credit
PSWA: The Benefit Act
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Patients depend on the research and development cycle to produce innovative, life saving medicines for rare and chronic conditions. But this medical innovation faces hurdles if Congress passes medicare price negotiations within the Build Back Better Plan.
Terry and Dr. Bob look at what this means for small, biotech companies creating the cures of tomorrow. And if you’re confused about drug development and pricing, Dr. Ron Cohen of Acorda Therapeutics breaks down the process and what it means for patients.
Plus, get the patient perspective on the importance of rare disease research. Dorothea Lantz is the mom of Hunter, a 4-year old living with Prader-Willi syndrome. She explains why Congress must leave the Orphan Drug Tax Credit alone in order to protect the development of future treatments that could help patients like Hunter.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Ron Cohen, MD, Founder, President and CEO, Acorda Therapeutics
Dorothea Lantz, Community Engagement Specialist, Prader-Willi Syndrome Association
Katie Moureau, Patient Correspondent
Nichole McLaud, Patient Correspondent
Links:
Democrats weigh health care provisions in $3.5 trillion bill
The High Costs of Democrats’ prescription drug price-setting
Rep. Ayanna Pressley And Congressional Colleagues Unveil Bill to Support People Experiencing Hair Loss
Merck pill seen as ‘huge advance,’ raises hope of preventing COVID-19 deaths
NORD Statement on Proposed Changes to the Orphan Drug Tax Credit
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Numerous health policies are under debate in Congress. As Senators and Representatives hash out drug pricing legislation and more, where are patients in the conversation?
Advocate and former Ohio state legislator Randi Clites shares how patients can get involved in policy advocacy. Plus, how the rise of Rare Disease Advisory Councils in state legislatures are giving patients a seat at the table.
Terry and Dr. Bob deliver a healthcare policy crash course on this week in D.C., and Kate speaks with Jen Roman about her rare disease and mission to combat misconceptions about rare disease patients.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Randi Clites, Rare Disease Policy Director, Little Hercules Foundation
Jen Roman, Rare Disease Advocate
Shannon Sharp, Patient Correspondent
Links:
Senate passes infrastructure bill that restarts sequester cuts, delays rebate rule
NORD Statement on Proposed Changes to the Orphan Drug Tax Credit
Medicaid Home and Community Based Services
Congress Likely to Scale Back HCBS Funding as Part of Budget Compromise
The High Costs of Democrats’ prescription drug price-setting
Rare Disease Advisory Councils by State
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
As Congress continues to debate solutions to lower healthcare costs, biosimilars are a promising option. But uptake of biosimilars has been slow in the U.S., and few patients are seeing direct savings at the pharmacy counter.
Brian Lehman, Director of Patient Advocacy at Sandoz, explains how biosimilars play a role in patient care and result in cost savings to the healthcare system. Mary Jo Carden, Head of Policy, lays out policy actions to boost biosimilar use. And while biosimilars might not be a good fit for all patients, Terry and Dr. Bob look at the ways these medications can improve patient access for many individuals.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Brian Lehman, Director, Patient Advocacy and Strategic Alliances, Sandoz
Mary Jo Carden, Head of Policy, Sandoz
Monica Bryant, COO, Triage Cancer
Dorothea Lantz, Patient Correspondent
Links:
The Role Biologics and Biosimilars Can Play in Healthcare
Biosimilars: What is Interchangeability, Reference Product, and Why You Should Care
U.S. FDA approves first biosimilar rival to Roche’s blockbuster eye drug
Triage Cancer Estate Planning Resources
State-Specific Estate Planning Toolkit
Introduction to Estate Planning
NORD Statement on Proposed Changes to the Orphan Drug Tax Credit
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
President Biden outlines a new COVID-19 strategy, the U.S. Senate returns to Washington, and the House of Representatives debates prescription drug prices. Hosts Terry Wilcox and Dr. Bob Goldberg break down D.C.’s busy week and what chronic disease patients should be watching.
Plus, many hospitals continue to operate at capacity. For those with chronic conditions or non-COVID related emergencies, getting seen by a doctor is a battle. Kate Pecora brings listeners through the halls of an overcrowded Boston hospital as she shares her story of trying to get care during the pandemic.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Shivani Vyas, Host, The Rare Disorder Podcast
Dawn Ireland, Patient Correspondent
Links:
Alabama man Ray DeMonia dies after being turned away from 43 hospitals as covid packs ICUs, family says
President Biden delivers remarks on lowering prescription drug prices
President Biden’s Path Out of the Pandemic
Presiden Biden unveils plan to boost COVID vaccinations and fight Delta variant
Reps. Peters, Schrader Unveil Plan to Cut Patients’ Drug Costs & Preserve America’s Ability to Produce Live-Saving Cures
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Want greater access to your doctor at a lower price? It’s possible through direct primary care. This healthcare solution allows patients to develop personal relationships with their doctors and receive care quicker and cheaper. Three physicians weigh in on how direct primary care works and how it can help chronic disease patients receive timely, personalized care.
Plus, guest host David Balat of the Texas Public Policy Foundation joins Terry Wilcox to discuss the healthcare needs of 9/11 first responders. Plus, the status of prescription drug legislation in Congress and what it means for patients.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Guest Host: David Balat, Healthcare Policy Director, Texas Public Policy Foundation
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Peter Lazzopina, MD, Founder, FRONTIER Direct Care
Geetinder Goyal, MD, Founder and CEO, First Primary Care
Cliff Porter, MD, PhD, Managing Partner and Founder, Texas Direct Medical Care
Patricia Carroll, Patient Correspondent
Links:
The Mystery of 9/11 and Dementia
What is Direct Primary Care?
Free2Care
Free2Care Annual Conference
Drug Channels
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
What can Congress do to aid in the fight against ovarian cancer? If reauthorized, Johanna’s Law would increase funding for ovarian cancer education and awareness programs.
Ovarian Cancer Research Alliance’s VP of Policy, Chad Ramsey, explains how federal funding can reduce health disparities and improve outcomes. Plus, hear from ovarian cancer survivor Randalynn Vasel on her cancer journey. And Runsi Sen, founder of Ovarcome, shares the signs and symptoms of ovarian cancer that all women should know.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Chad Ramsey, VP of Policy, Ovarian Cancer Research Alliance
Randalynn Vasel, Co-Producer, Sips with Survivors
Runsi Sen, Founder, Ovarcome
Links:
Key Statistics for Ovarian Cancer
Support Johanna’s Law
Ovarian Cancer Awareness Month Toolkit
Biogen Offers Free Alzheimer’s Drug as Medicare Payment Uncertainty Remains
Successful Prescription Drug Discount Program Expands to Benefit More Consumers at Point-of-Sale
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Kids across the country are headed back to school. But as the Delta variant spreads, what should families living with chronic disease know to stay healthy and safe?
Pediatrician Dr. Marlene Wust-Smith gives a back-to-school checklist, including what hand sanitizers are safe and unsafe. Plus, what the Delta variant means for children.
Terry and Dr. Bob break down the latest healthcare headlines, including booster shots, hospital price transparency and more. And field correspondent Kate sits down with Melody Olander, founder of But You Don’t Look Sick, healthcare challenges facing the chronic disease community.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Dr. Marlene Wust-Smith, Pediatrician and Publisher, Physician Outlook Magazine
Melody Olander, Founder, But You Don’t Look Sick
Myisha Malone-King, Patient Correspondent
Links:
U.S. plans COVID-19 booster shots at six months instead of eight
Janet Woodcock reportedly out of the race for permanent FDA commissioner
Health care industry sues over another transparency rule
FDA Must Step Up Oversight of Hand Sanitizer Safety
Chuck Schumer and Stephen Colbert Dance
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
What’s the purpose of a patent? In the pharmaceutical industry, it helps manufacturers reinvest in new research and development to improve upon treatments and drugs. It’s a key part of the cycle of developing new treatments.
Terry and Bob look at the R&D cycle, and how patents fit in. Expert Jaci McDole gives listeners a crash course in the patent process and what patients should know.
Plus, Kate Pecora speaks with patient advocate Elisa Comer about the double dip - and who is preventing you from saving money through patient assist funds.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Jaci McDole, Senior Policy Analyst, Information Technology and Innovation Foundation
Elisa Comer, Patient Advocate
Sarah Wells Kocsis, Patient Correspondent
Links:
Apply for the Patients Rising Advocacy Master Class
Terry Wilcox Statement on President Biden’s Drug Pricing Announcement
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Premiums, deductibles, and copays continue to rise as insurance companies grow fat through mergers and monopolies. Host Terry Wilcox speaks with former insurance executive-turned-advocate Wendell Potter. Together, they explore the reasons behind climbing costs and what a public option would mean for patient access to insurance.
Plus, Kate interviews Morgan Fitzgerald who lives with chronic migraines. She shares her battle to receive insurance coverage for the preventative treatments she depends on.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Wendell Potter, President, Center for Health and Democracy
Morgan Fitzgerald, Migraine Advocate
Links:
Laws to Help Patients Get Pricey Drugs Fall Short, Advocates Say
Migraine: The Invisible Illness that Alters the Lives of Millions
Wendell Potter Now Substack
Op-Ed: Want a Public Option? Not So Fast, Say Health Insurers
Dr. Marion Mass Tweet
CMS nixes ‘most-favored nation’ pricing model for Medicare Part B
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The Delta variant, a breakdown of the FDA’s accelerated approval process, and how pink socks are bringing together patient advocacy groups.
Hosts Dr. Bob Goldberg and guest host Kate Pecora dive into the news of the week, including where the debate on the new Alzheimer drug stands. Nick Adkins of Pinksocks Life shares the story on how the gift of pink socks turned into a worldwide movement to spark connectivity. And cancer rights attorney, Monica Bryant explains the Family Medical Leave Act and common myths and misunderstandings of the law.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Nick Adkins, Co-Founder, Pinksocks Life
Paul Langley, Ph.D., Director, Maimon Research LLC
Monica Bryant, Chief Operating Officer, Triage Cancer
Melissa Talwar, Patient Correspondent
Links:
Triage Cancer: Employment Related Laws by State
Last Word: ICER’s Final Evidence Report on new Alzheimer’s Treatment
The Science Is In: Our Immunocompromised Patients Need a Third Dose
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Opioid overdoses are rising as the COVID-19 pandemic continues. In 2020, overdose deaths rose by 30%. However, many chronic disease patients rely on prescription opioids for their healthcare regimen. We examine a balanced policy approach to combat the pandemic while protecting patients with chronic illness.
As part of the Reverse the Silence campaign, former Congresswoman Mary Bono shares policy ideas to combat the opioid epidemic and overdose-reversing drugs to save lives. And Las Vegas Raiders tight end Darren Waller reflects on his battle with addiction.
Plus, August is Health Care Awareness Month. Field Correspondent Kate speaks with the organizers behind the movement, Peter Morley and Rachel Brody, about how you can participate in this month-long advocacy campaign and make your healthcare story heard.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Mary Bono, Co-Convener, The Community Anti-Drug Coalitions of America (CADCA), Mothers Against Prescription Drug Abuse (MAPDA), SAFEProject, and Shatterproof
Darren Waller, tight end, Las Vegas Raiders, and opioid addiction advocate, Reverse the Silence
Peter Morley, Founder’s Council Member, United States of Care
Rachel Brody, Executive Director, Health Care Awareness Month
Richie Khan, Patient Correspondent
Links:
Reverse the Silence Campaign
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The high price tag for a new Alzheimer’s drug has fueled the ongoing drug price debate. But will patients really pay sticker price? (Spoiler alert: No!).
Co-host Dr. Bob Goldberg explains the research/value assessment of the drug, while Host Terry Wilcox discusses the growing barriers to access the drug even as health networks refuse to offer it and the Institute for Clinical and Economic Review (ICER) decides to ignore its benefits.
Hear from UsAgainstAlzheimer’s COO Russ Paulsen about this breakthrough and what it means for the community, particularly minority populations. Also, against a backdrop of debates over high health care and prescription drug costs, Dr. Mark Fendrick and Dr. Jon Schommer take time to explain the problems they see affecting patients.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Russ Paulsen, COO, UsAgainstAlzheimer’s
Mark Fendrick, MD, Director, University of Michigan’s Center for Value-Based Insurance Design
Jon Schommer, PharmD, Professor, University of Minnesota College of Pharmacy
Myisha Malone King, Patient Advocate
Adam Johnson, Patient Correspondent
Links:
As COVID-19 wanes, the Alzheimer’s epidemic is just beginning
Dr. Mark Fendrick: Policies to Increase Access and Affordability to Essential Medical Care
National Health Issues Survey Results: Access and Affordability
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Access to all of your health data - MRIs, screenings, and lab results - could be right at your fingertips. COVID-19 put healthcare tech companies into high gear to deliver health data to patients. The end result? Empowered patients, improved clinical trials, and greater control over healthcare decision making.
Ardy Arianpour, CEO and co-founder of Seqster, explains how his platform is giving patients ownership and control of their data. Plus, how these technologies are helping clinical trials boost participation and diversity.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Ardy Arianpour, CEO and co-founder, Seqster
Diane Talbert, Patient Correspondent
Links:
Drug Prices Are One Focus of Biden’s Push to Boost Competition
Seqster Teams with Rewards Firm Trustr to Incentivize Patient Participation in Clinical Trials
FDA chief asks for independent investigation into approval of Biogen’s Alzheimer’s drug Aduhelm
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Patients depend on safety and accuracy of medical equipment. If they’re improperly repaired, it could derail a patient’s healthcare journey and risk their health and safety.
The Right to Repair Act aims to expedite medical device repairs by giving third-party groups access to the original manufacturer’s tools and instructions. But if repair organizations aren’t held to the same FDA safety standards, patients could see poor outcomes or be misdiagnosed.
James Nestel of Simon Hegele Healthcare Solutions gives us a look into the work that repair companies do, and the importance of FDA regulations that hold them to high standards. Also, Erika Hanson Brown, Managing Principal of ONE CANCER PLACE, shares how device accuracy and safety is critical to cancer patient outcomes.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
James “Jim” Nestel, CEO, Simon Hegele Healthcare Solutions (Americas, Asia Pacific)
Erika Hanson Brown, Managing Principal, ONE CANCER PLACE
John Linnell, Patient Correspondent
Links:
National Health Issues Survey Results: European-Style Price Controls
Why There’s New Hope for Alzheimer’s Patients
Comments on ICER’s May 5 Draft Evidence Report, “Aducanumab for Alzheimer’s Disease: Effectiveness and Value”
JAMA: Experimental Assessment of Carbon Dioxide Content in Inhaled Air With or Without Face Masks in Healthy Children
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Doctor’s visits, tests, procedures and therapies are just one part of a healthcare journey. Knowing and understanding the laws that govern and protect your right to work, along with health insurance coverage and reimbursement, are another challenge.
Monica Bryant, a cancer rights attorney and chief operating officer of Triage Cancer joins the episode to chat about the common myths and mistakes facing patients. Many of which apply to all chronic and rare diseases.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Monica Bryant, Chief Operating Officer, Triage Cancer
Noreen Czyzak, Cancer Patient
Michael Riotto, Patient Correspondent
Links:
What’s Legal About Cancer
He Inherited a Devastating Disease. A CRISPR Gene-Editing Breakthrough Stopped It
Patients for Affordable Drugs Report
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Drama continues to unfold following the FDA’s controversial approval of a new Alzhiemer’s treatment. Members of the FDA’s advisory committee voted against approval, and some members resigned in protest. But how does this impact you or loved ones with chronic disease?
On this episode: Peter Pitts, a former FDA Associate Commissioner, who previously oversaw the committee process. He explains how the committees make recommendations on new and emerging treatments and drugs for rare and chronic diseases. And how reforms to strict conflict of interest rules could bring more patient voices to the table.
Plus, Field Correspondent Kate Pecora speaks with lung cancer survivor Jeff Julian on overcoming the odds and his search to find the best treatment for him.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent, Patients Rising
Guests:
Peter Pitts, President and Co-Founder, Center for Medicine in the Public Interest
Jeff Julian, Cancer Advocate
Jody Quinn, Patient Correspondent
Links:
3 Experts Have Resigned from an FDA Committee Over Alzheimer’s Drug Approval
Obamacare survives after Supreme Court rejects latest Republican challenge
Pfizer CEO urges Biden to form coalition to cut drug costs
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
A new FDA-approved drug for Alzheimer’s signals a breakthrough in innovation for patients and caregivers, but has raised doubts from some over the price tag and approval process. Confused about what all of this means for you? This episode breaks it down.
Dr. Bob walks listeners through the accelerated approval process while Terry looks at the role this plays in future medical innovation. Sue Peschin, President and CEO of the Alliance for Aging Research, explains how the price tag fits into the ongoing debate over drug pricing policies. And we hear from Allison Wilson, who gives a caregiver’s perspective as she reflects on her mother’s diagnosis of early-onset Alzheimer’s.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Sue Peschin, President and CEO, Alliance for Aging Research
Allison Wilson, Caregiver
Becky Brandt, Patient Correspondent
Links:
Alliance for Aging Research + Milliman Report on Assessing Value of Alzheimer’s Treatments
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Following a pandemic that exposed disparities, and failures to patients with chronic disease, now is the time for lawmakers and the industry in the U.S. to rethink its approach to healthcare. On this episode: how to create supportive networks between a patient’s home team and their doctors, technology to improve patient-doctor connections, and empathy in healthcare.
Dr. Summer Knight shares her vision to improve quality of care and patient outcomes in her book, Humanizing Healthcare. Plus, hosts Terry and Dr. Bob break down the big decision from the FDA to approve a groundbreaking Alzheimer’s treatment.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Guests:
Dr. Summer Knight, Author, Humanizing Healthcare
Nisha Trivedi, Patient Correspondent
Carmen Rose Fiallo, Patient Correspondent
Links:
COVID-19 Vaccinations in the United States
FDA Grants Historic Approval to Alzheimer’s Drug Designed to Slow Cognitive Decline
The Value Versus the Challenge Of Social Security Disability
What’s Legal About Cancer
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Can you tell the difference between an advertising claim and research-backed statistics? For chronic disease patients who take supplements to manage their conditions, this is an ongoing problem. And the Food and Drug Administration can’t always keep up with new products, claims, and supplements.
ChromaDex CEO Robert Fried explains what patients should look for in a company when researching supplements. And how clinical research is unlocking their potential uses for rare and chronic diseases. Also, Kate speaks with Kayla Smock on insurance hurdles facing Occipital Neuralgia patients and why the condition is so much more than just a headache.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Robert Fried, CEO, ChromaDex
Kayla Smock, President and Founder, Occipital Neuralgia Foundation
Ronetta Stokes, Patient Correspondent
Links:
Congress Should Prioritize Dietary Supplement Reform as Part of Its Efforts to Strengthen Public Health
Drugmakers sue HHS over Medicaid drug rebate rule
Improving Seniors’ Timely Access to Care Act of 2021
Patients Rising Survey: Occipital Neuralgia: A New Look at Patient Experiences
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
More than 60 million Americans live with allergies or asthma. COVID-19 brought much needed attention to lung and respiratory challenges, but where do allergy and asthma patients go now in this emerging post-pandemic world?
Tonya Winders, President and CEO of the Allergy and Asthma Network, explains the hurdles that remain for this patient population, including poor access to primary care providers and high out-of-pocket costs. Also, Kate speaks with allergy patient and entrepreneur Evan Edwards about his journey to create an epinephrine injector that worked for him. Bob and Terry look at health policies under discussion on Capitol Hill that could impact patients, while correspondent Ella Balasa shares her story about living with cystic fibrosis.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Guests:
Tonya Winders, President and CEO, Allergy and Asthma Network
Evan Edwards, Co-Founder, Kaleo
Ella Balasa, Patient Correspondent
Links:
Comments on ICER’s May 5 Draft Evidence Report, “Aducanumab for Alzheimer’s Disease: Effectiveness and Value”
Chiquita Brooks-LaSure becomes the first Black administrator confirmed to lead Medicare and Medicaid
Submit a Letter to ICER: Institute for Patient Access
Alzheimer’s Association Letter to ICER
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Demands for mental and behavioral health services are on the rise. These services represented nearly half of all telehealth claims during the pandemic, but the digital divide and lack of in-network mental health providers create barriers for patients seeking treatments.
Dr. Nishi Rawat assesses the current mental health landscape, health inequities, and how new technologies are looking to meet patients where they are. Also, advocate Gabe Howard shares his diagnosis of bipolar disorder, he tells you how you can support loved ones living with a mental illness. Plus, patient correspondent Karen Kaiser shares her fight to receive her critical mail-order prescriptions on time.
Guest:
Nishi Rawat, M.D.
Co-Founder, OpenBeds
Dr. Nishi Rawat is a co-founder of OpenBeds and Senior Vice President at Appriss Health. She is a physician and healthcare services researcher, trained in critical care and emergency medicine, and a member of the faculty at Johns Hopkins University School of Medicine. She is an NIH-sponsored investigator who has won several awards for her research, and leadership awards from Johns Hopkins for her quality improvement activities. Nishi brings a wealth of healthcare knowledge, creativity and vision to OpenBeds Inc.
As a critical care physician, Dr. Rawat experienced the frustration of locating the proper care for her patients suffering from behavioral health conditions. That led to the development of OpenBeds, a software platform that improves transparency, communications, and ultimately care for behavioral health. In 2015, NIDA approached Dr. Rawat to partner to develop technology to service the opioid epidemic. OpenBeds is now implemented in hundreds of organizations and serves 8 state governments. Given its success, OpenBeds Inc. was recently acquired by Appriss Inc. where Nishi now leads its strategy in the healthcare sector.
Links:
OpenBeds
Dr. Nishi Rawat
Gabe Howard
Inside Mental Health Podcast
House moderates signal concerns with Pelosi drug pricing bill
Senate Finance Committee, Subcommittee on Health Care Hearing on Mental Health
HHS Hearing on COVID-19 and the Mental Health and Substance Use Crisis
Patient Correspondent: Karen Kaiser
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
When it comes to saving a buck, rare and chronic disease patients are too often put on the chopping block. Accelerated approval drugs are key to treating life threatening diseases. So why is Medicaid and CHIP Payment and Access Commission (MACPAC) targeting these lifesaving treatments?
Dr. Ken Thorpe of the Partnership to Fight Chronic Disease and rare disease advocate Marc Yale explain why this attempt at cost savings hurts patients. Plus, Terry and Dr. Bob look at the debate around waiving vaccine patents and alternative solutions to combating COVID-19.
Guest:
Kenneth Thorpe, Ph.D.
Chairman, Partnership to Fight Chronic Disease
Dr. Thorpe is chairman of the Partnership to Fight Chronic Disease, an international coalition of over 80 groups focused on highlighting the key role that chronic disease plays in the growth in healthcare spending, and the high rates of morbidity and mortality. PFCD focuses on identifying best practice prevention and care coordination strategies and scaling them countrywide. He also serves as co-chair of the Partnership for the Future of Medicare, a non-partisan organization focused on identifying long-term reforms that would make the program more efficient and improve the quality of care provided to beneficiaries.
Dr. Thorpe is also the Robert W. Woodruff Professor and Chair of the Department of Health Policy & Management, in the Rollins School of Public Health of Emory University, Atlanta, Georgia.
Links:
Kenneth Thorpe, Ph.D.
Limiting Medicaid Access to Accelerated Approval Drugs: Costs and Consequences
Partnership to Fight Chronic Disease
Coronavirus: Vaccines and Variants with Vin Gupta, MD, and Peter Hotez, MD, PhD
Haystack Project
International Pemphigus & Pemphigoid Foundation
Marc Yale
Patient Correspondent: Anna Williams
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Patients rely on access to a broad range of innovative and effective medications to find a treatment option that best suits them. But restrictive formularies and price caps could prevent patients from accessing newer medications that could improve their lives.
Senator Marsha Blackburn discusses her mission to protect innovation and the competitive structure of Medicare Part D to keep drug costs low and options high for patients.
Plus, health economist Dr. Paul Langley underscores the importance of including patient and caregiver voices while assessing the cost value of drugs. And Kate speaks with Kristine Hutchinson from a caregiver’s perspective, and Patient Correspondent Angela Deed reflects on the frustration of not being heard by doctors.
Guest:
U.S. Senator Marsha Blackburn was sworn in to the Senate in January 2019.
Marsha Blackburn was elected to the U.S. Senate in 2018, and is currently serving her first term representing the state of Tennessee. Before her election to the Senate, Marsha represented Tennessee’s 7th Congressional District.
In 2002, Marsha was elected to represent the people of Tennessee’s 7th Congressional District based on her record in the state legislature. She brought her Tennessee values to Washington, DC, and became a leader in the fight for small, efficient federal government that is accountable to its citizens. As a Congressman, Marsha was often selected by her colleagues to lead the charge for principled conservatism. Her congressional career has been punctuated by her Chairmanship of the Energy and Commerce Committee’s Subcommittee on Communications and Technology, as well as bipartisan expertise in defending songwriters’ and performers’ rights.
Links:
U.S. Senator Marsha Blackburn
Protecting Innovation for the Next Generation Act
New Jersey ‘Shot and a Beer’ program offers free beer to those who get Covid-19 vaccine
H.R. 3’s international reference pricing misses the mark
A Better Way: Replacing the QALY with a true, patient-centered quality-of-life measure
Patient Correspondent: Angela Deeds
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
April is Donate Life Month, and we examine many challenges facing organ transplant recipients. Amidst the physical and emotional toll of surgery, many patients also have to juggle apartment searching, moving, and financing a second home or apartment while they recover. And insurance companies refuse to cover these expenses.
Denise Redeker, Founder and CEO of Heartfelt Help Foundation, shares her experience undergoing a heart transplant, her move to Silicon Valley for the procedure, and how her organization helps other organ recipients find affordable housing.
Plus, field correspondent Kate Pecora interviews Richard Sperry on his misdiagnosis of ALS and how it led him to patient advocacy. And neurologist Dr. Ray Dorsey outlines action items for helping the Parkinson’s community.
Guest:
Denise Redeker
Founder and CEO, Heartfelt Help Foundation
Denise Redeker is a heart transplant recipient, patient advocate, organ donation advocate and founder of Heartfelt Help Foundation. Founded in 2020, Heartfelt Help Foundation helps Bay Area transplant recipients both afford and source the medically required post transplant housing that, for most transplant recipients, necessitates relocating temporarily to within a short distance of their hospital. Such expenses are rarely covered by insurance, often extremely expensive, and sufficiently critical to transplant recovery that an inability to afford them can delay a patient’s life-saving transplant surgery. In her free time, Denise loves long walks on the beach and discovering new hiking trails with her husband, Jim and son Matthew.
Links:
Denise Redeker
Heartfelt Help Foundation
White House Proclamation on National Donate Life Month
Patients Rising Statement on H.R. 3
LISTEN: What’s in H.R. 3? Peter Pitts Explains
Richard Sperry
Everything ALS
Patient Correspondent: Dr. Ray Dorsey
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/author(s) and do not reflect the official policy or position of Patients Rising.
The FDA’s Acting Commissioner Dr. Janet Woodcock brings listeners inside the FDA. While the agency’s hands are full with a global pandemic, the FDA is also still tasked with shepherding accelerated approvals for rare and chronic disease treatments, improving clinical trials, and assessing the cost effectiveness of medications.
Plus, the patient perspective of FDA-accelerated approval medications. Sickle cell advocate Teonna Woolford stresses the urgency behind approving medications. And patient correspondent Nichole Davis shares her journey with fibromyalgia and the importance of health literacy.
Guest:
Dr. Janet Woodcock
Acting Commissioner, Food and Drug Administration
As Acting Commissioner, Dr. Woodcock oversees the full breadth of the FDA portfolio and execution of the Federal Food, Drug, and Cosmetic Act and other applicable laws. This includes assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices; the safety and security of our nation's food supply, cosmetics, dietary supplements, products that give off electronic radiation; and the regulation of tobacco products.
Dr. Woodcock began her FDA career in 1986, joining the agency’s Center for Biologics Evaluation and Research (CBER) as Director of the Division of Biological Investigational New Drugs, as well as serving as CBER’s Acting Deputy Director for a period of time. She later became Director of the Office of Therapeutics Research and Review in CBER, which included the approval of the first biotechnology-based treatments for multiple sclerosis and cystic fibrosis during her tenure.
Links:
Dr. Janet Woodcock
Teonna Woolford
The Sickle Cell Reproductive Health Education Directive
Patients Rising Diversity, Equity, and Inclusion Council
Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses
Drug Board is Wrong Rx for Colorado
What Do You Do When Kids Are Still Unvaccinated?
Supply vs. Demand: When Will the Scales Tip on COVID-19 Vaccination in the US?
Patient Correspondent: Nichole Davis
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The most effective treatments are often out of reach for patients. Big news came from the FDA announcing the approval of CAR-T therapies for multiple myeloma patients, but drug assessments from third-party groups are concerning. Will patients be able to access these life-saving treatments?
Multiple myeloma oncologist Dr. Rafael Fonseca highlights the benefits of CAR-T therapies, the future of these advanced technologies, and the impossible task of putting a dollar value on patient quality of life. We also hear from multiple myeloma patient and advocate Dale Hopkins on how designer drugs like CAR-T could be a game-changer for his treatment regimen.
Guest:
Rafael Fonseca
Interim Director, Mayo Clinic Cancer Center
Rafael Fonseca, M.D., is the interim director of Mayo Clinic Cancer Center and the director for Innovation and Transformational Relationships at Mayo Clinic's Arizona campus.
Dr. Fonseca has a broad range of research interests, including clinical trials for the treatment of myeloma and related conditions, a better understanding of the genetics of myeloma and related conditions (including the clinical implications), new drug development (including harnessing the cells' metabolism to develop effective therapies), myeloma bone disease, pharmacoeconomics, and policy.
The cumulative research efforts of Dr. Fonseca's laboratory have led to a better understanding of myeloma and related diseases, and unlocked novel treatment options for patients and provided context for the pharmacoeconomic implications of new therapies.
Links:
Dr. Rafael Fonseca
Dale Hopkins Blog
FDA Approves First CAR-T Cell Therapy for Multiple Myeloma
ICER’s Review on Multiple Myeloma
Limiting Medicaid Access to Accelerated Approval Drugs: Costs and Consequences
Patient Correspondent: Megan Claire-Chase
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
You may have seen Johns Hopkins Hospital surgeon Dr. Marty Makary all over the national news this week, and he also joins the Patients Rising Podcast to talk with us about the winners and losers in the healthcare system, why doctors would rather spend time with you but are bogged down with paperwork, and how technology and healthcare reform could help.
Plus Kate Pecora speaks with cystic fibrosis advocate Kori Tolbert on a cross-country move just to receive treatment. Plus a tip from the Patients Rising Concierge Desk on locating family members within the hospital system.
Guest:
Marty Makary, M.D., M.P.H.
Surgical Oncologist, Johns Hopkins Hospital
Dr. Marty Makary is a New York Times bestselling author and leading voice for transparency in health care. He is the recipient of the 2020 Business Book of the Year Award for The Price We Pay. A professor at the Johns Hopkins Bloomberg School of Public Health, he has published over 250 scientific articles on the redesign of healthcare, medical innovation, and vulnerable populations. Dr. Makary has been elected to the National Academy of Medicine and is Editor-in-Chief of Medpage Today. He has written for The Wall Street Journal, The New York Times, and USA Today and is a frequent medical commentator.
Clinically, Dr. Makary practices pancreas surgery and has pioneered novel operations at Johns Hopkins. He is the recipient of the Nobility in Science Award from the National Pancreas Foundation and has been a visiting professor at over 20 medical schools.
Links:
Dr. Marty Makary
The Price We Pay
John Lewis NIMHD Research Endowment Revitalization Act of 2021
Discrimination in the Doctor’s Office
Black Woman Ignored - Ends up with Stage 3 Cancer
She’s 14 months old and needs a drug that costs $2.1 million to save her life
AbCellera’s COVID-19 treatment is saving lives in the U.S. In Canada, it’s sitting in storage.
GAO Report on Federal Contributions to Remdesivir
Kori Tolbert
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
We conclude our series on lupus with a trip to the doctor’s office, where rheumatologist Dr. Mark Box delves into the clinical side of the disease. He explores dealing with insurance companies and preserving the doctor-patient relationship. Our field correspondent, Kate Pecora speaks with Cheryl Etheredge, founder of Smiles Behind Lupus, on her lupus journey and how she gives back to others through the Lupus Smile Box program.
And in the aftermath of the Institute for Clinical and Economic Review’s (ICER) assessment of lupus nephritis treatments, Terry and Dr. Bob examine how the potential results could impact the community. Plus, is ICER creeping into state legislatures?
Guest:
Mark Box, M.D.
Rheumatologist, Carondelet Rheumatology
Dr. Box is board-certified in rheumatology and a certified densitometrist who also conducts research that informs future treatments for his patients. He is active in the healthcare industry, advocating for medical legislation, and supporting clinical research.
His areas of interest include Internal Medicine, Densitometry, Autoimmune Disorders, Rheumatoid Arthritis, Osteoarthritis, Psoriatic Arthritis, Bursitis, Sjogren's Syndrome, Raynaud's Disease, Still's Disease, Lupus, Fibromyalgia, Ankylosing Spondylitis, and Gout.
Dr. Box earned his medical degree from the University of Missouri School of Medicine.
Links:
Dr. Mark Box
Smiles Behind Lupus
Cheryl Etheredge
New Health Legislation Includes Insulin Cap
Robert Popovian: We Need Greater Transparency to Improve the U.S. Healthcare System
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
This week, the Institute for Clinical and Economic Review (ICER) deliberates the fate of insurance coverage for patients with lupus.
In this episode, Mollee Huffman shares her diagnosis of lupus, how it impacted her Navy career and day-to-day life.
Plus, Terry and Dr. Bob look at how hospitals are making it impossible for patients to Google search their prices, drug pricing legislation in Congress (H.R. 3), and what ICER’s poor track record for undervaluing drugs signals to the lupus community awaiting their review.
Guest:
Mollee Huffman
Chronic Illness Advocate and Patient
Links:
Mollee Huffman
ICER’s Lupus Nephritis Public Meeting (3/26)
Hospitals Hide Pricing Data From Search Results
States are Eyeing Public Option Health Plans. Many Obstacles Stand in the Way.
House Passes Bill That Would Extend Medicare Sequester Cuts Until December
Drug Pricing, Climate, Immigration: House Dems Eye ‘Kitchen Sink’ for Next Big Bill
ICYMI: Last Word: ICER’s flawed pricing recommendations for new high cholesterol treatments
Patient Correspondent: Megan Staley
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
When a chronic condition prevents you from working, you might find yourself filling out a disability claim. But what happens when it’s denied? And how can you fight to receive your health benefits?
All of this ties back to ERISA, the Employee Retirement Income Security Act. This week’s guest, ERISA lawyer Glenn Kantor, helps us understand how ERISA impacts patients on employer-sponsored health plans.
Plus, a look inside the fight for marriage equality within the disability community. Kaitlin Kerr shares her story and explains how patients with disabilities could lose their Social Security Disability Insurance upon entering an interabled marriage.
And Dr. Paul Langley kicks off a new segment, The Last Word, where he breaks down ICER's flawed pricing recommendations for high cholesterol treatments.
Guest:
Glenn Kantor
Founding Partner, Kantor & Kantor LLP.
Glenn Kantor is founding partner of Kantor & Kantor LLP. As a young attorney, Glenn saw the injustice of wrongful insurance denials and created a law firm to represent individuals seeking to obtain their rightful benefits. Glenn is committed to ensuring that clients receive the benefits they are entitled to under their insurance policies or group health plans.
Glenn also represents family members to obtain wrongfully withheld life insurance benefits in situations regarding DUI deaths, domestic partnerships, failure to disclose, and improper enrollment. He works with elderly clients to help them obtain long-term care benefits that they are entitled to under their long-term care insurance policies.
In 2011, Glenn worked with California Insurance Commissioner Dave Jones to help pass California Insurance Code Section 10110.6, a law that prevents disability insurance companies from inserting language into policies that gives them the discretion to deny claims.
Glenn earned his J.D. from the University of Southern California Law Center.
Links:
Glenn Kantor
How the American Rescue Plan will Improve Affordability of Private Health Coverage
Marriage in the Disabled Community: More Complicated Than You May Think
Marriage, Ableism, and Social Security Disability
The Marriage Penalty: Choosing Love or Money
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
If you have trouble adhering to your medication regimen or know you need to eat healthier, but are overwhelmed, tiny habits may be your answer. Examining your small habits can help patients with chronic illness live healthier lives. Behavior scientist and best-selling author BJ Fogg gives us step-by-step tips for implementing habits into their daily routine.
Plus, field correspondent Kate Pecora virtually travels across the pond to speak to U.K. patient Jess Logan, founder of Making the Invisible Visible. She shares her journey with inflammatory bowel disease (IBD), long wait times to see a specialist and making her voice heard in the doctor’s office.
Guest:
BJ Fogg, Ph.D.
Founder and Director, Behavior Design Lab at Stanford University
Dr. BJ Fogg is a behavior scientist with deep experience in innovation and teaching. At Stanford University, Dr. Fogg directed a research lab for over 20 years. He also teaches his models and methods in special Stanford courses each year.
On the industry side, Dr. Fogg trains innovators to use his work so they can create solutions that influence behavior for good. The focus areas include health, sustainability, financial wellbeing, learning, productivity, and more.
In 2002, Dr. Fogg published a book entitled, Persuasive Technology, about how computers can be designed to influence attitudes and behaviors. At the time of publication this book was mostly ignored. Now, almost 20 years later, Dr. Fogg sees his predictions and warnings about persuasive technology were surprisingly accurate.
In 2009 his research interests moved away from persuasive technology toward human behavior in general, especially health habits. This led to creating a new set of models and methods that comprise what he calls “Behavior Design.” In January of 2020, Dr. Fogg shared 300 pages of new and practical uses for Behavior Design in his New York Times Bestselling book Tiny Habits.
Links:
BJ Fogg
Tiny Habits
CDC: Vaccine Guidance
Statement in Support of Medigap Insurance for Patients with End-Stage Renal Disease
Give a Crap Challenge
Making the Invisible Visible
Jessica Logan
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
COVID-19 has caused people to delay important cancer screenings and medical appointments. Coupled with the rising rates of colon cancer among younger adults, it’s clear the healthcare industry must change its approach to screenings, education, and prevention.
Cindy Borassi, Interim President of the Colon Cancer Foundation, explains how the organization aims to increase colon cancer screenings in underserved communities. Plus, she discusses the importance of educational outreach among younger populations. And Kate interviews Cassie Fraser on her experience being diagnosed with colon cancer in her forties, and the importance of having a strong support network.
Guest:
Cindy Borassi
Interim President, Colon Cancer Foundation
Cindy Borassi is the President of the Colon Cancer Foundation, a not-for-profit “Dedicated To A World Without Colorectal Cancer™.” Ms. Borassi has spent nearly 30 years developing and leading new programs and business initiatives in the not-for-profit space, both in the U.S. and abroad.
Prior to joining the Foundation, Cindy served as Development Director for the International Executive Service Corps (IESC). As Development Director, Cindy was responsible for IESC's corporate, private and governmental development efforts. While there, she used private-public partnerships to leverage existing and new programs around the globe.
As Interim President of the Colon Cancer Foundation (CCF), Cindy leads CCF’s national communications and outreach efforts focused on building awareness of colorectal cancer and the importance of early screening and detection of the nation’s second-leading cancer killer of women and men. She has been actively involved in the organization and growth of the Foundation’s annual Early Age Onset Colorectal Cancer Summit (EAOCRC) since its inception in 2015.
Links:
Cindy Borassi
Colon Cancer Foundation
Give a Crap Campaign
Raising Awareness About Colorectal Cancer, in March and Beyond
Mass. House QALY Ban Bill
Mass. Senate QALY Ban Bill
Biden administration pumps breaks on signature Trump drug pricing proposal
COVID-19 related delays to colorectal cancer screening causing a 11.9% increase in death rates, new research reveals
The False Dilemma of Post-Vaccination Risk
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Rare Disease Day is February 28. New and exciting medical innovations and drug therapies for rare disease abound, but accessing those treatments is another challenge. Discriminatory healthcare metrics like quality-adjusted-life-years (QALYs) devalue rare disease patient lives, signaling that a patient’s life isn’t worth covering treatments and therapies.
Dr. Bill Smith explains how QALYs are used and how it prevents patients from getting the life-saving care they need. Plus, Patients Rising Field Correspondent Kate speaks with Marni Cartelli, a rare disease patient living with complex regional pain syndrome, and Patient Correspondent Lillian Isabella celebrates Rare Disease Day by sharing her story of being diagnosed with PKU.
Guest:
William Smith, Ph.D.
Visiting Fellow in the Life Sciences, The Pioneer Institute
Dr. William S. Smith is The Pioneer Institute’s Visiting Fellow in the Life Sciences. Smith has 25 years of experience in government and in corporate roles, including senior staff positions on Capitol Hill, the White House Office of National Drug Control Policy, and the Massachusetts Governor’s office where he served under Governors Weld and Cellucci.
He spent ten years at Pfizer Inc as Vice President of Public Affairs and Policy where he was responsible for Pfizer’s corporate strategies for the U.S. policy environment. He later served as a consultant to major pharmaceutical, biotechnology and medical device companies. Dr. Smith earned his Ph.D. in political science with distinction at The Catholic University of America.
Links:
William Smith, Ph.D.
The Biden administration needs to look beyond ICER for evaluating drug therapies
Inside Xavier Becerra’s quest for health care for immigrants
Maryland Senate overrides Hogan veto of bill that funds nation’s first drug affordability board
Senate Democrats push for public option as Biden weighs health-care reform plans
Marni Cartelli
She Started A Nonprofit Around Her Rare Disease. Here's Why.
Rare Disease Patients, You Must Make Yourselves Heard
Swapna, Alabama, and the Spotlight on Rare Disease
Patients Rising Concierge
Patient Correspondent: Lillian Isabella
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Minority communities are underrepresented in healthcare leadership roles. By dismantling systemic barriers, the entire healthcare industry can benefit from talented professionals, scientists, and researchers from diverse backgrounds.
To help with this effort, Dr. Frank Douglas discusses his project, Safe Haven Dialogues, which empowers individuals to push back against discriminatory environments and make impactful change. Plus, Kate speaks with Andrea Baer of Mended Hearts to mark American Heart Month and patient correspondent Carina Fuller shares her experiences encountering healthcare discrimination.
Guest:
Frank L. Douglas, Ph.D., M.D.
Save Haven Dialogues LLC
An award-winning industry veteran with more than three decades of experience in healthcare, pharmaceuticals and entrepreneurship, Dr. Douglas has held leadership roles in both large and small biopharmaceutical companies. He led teams that were responsible for the development and marketing approval of many drugs, including Allegra, Lantus, Taxotere, and Actonel.
Dr. Douglas has also held several academic positions. While at Massachusetts Institute of Technology (MIT), Dr. Douglas was the Professor of the Practice in the MIT Sloan School of Management and also held similar appointments in the departments of Biology, Biological Engineering, and the Harvard-MIT Division of Health Sciences and Technology and was the founder and first executive director of the MIT Center for Biomedical Innovation.
Dr. Douglas holds a BS in Chemistry from Lehigh University, Ph.D. in Physical Chemistry, and a M.D. from Cornell University.
Links:
Dr. Frank Douglas
Safe Haven Dialogues
Mended Hearts
Andrea Baer
Nursing Home Disclosures Taint Cuomo’s Pandemic Performance
ICER to Assess Two Treatments for Lupus Nephritis
Patients Rising Concierge
Patient Correspondent: Carina Fuller
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Digital tech became a major healthcare tool during the pandemic. And AI-powered prescription drug apps are leading the charge in creating accessible and affordable medications. So how can these apps help patients take control of their healthcare?
Dr. Bob Arnot of Carecard dives into AI-powered apps and shares how users can find coupons for the drugs they need. Plus, Shelly Rosenfeld returns for this month’s Legal Tips segment to discuss laws in place to diversify clinical trials, and how patients can find out if they’re eligible.
Guest:
Bob Arnot, M.D.
Chief Medical Technologist, Carecard
Dr. Bob Arnot, internal medicine professional, journalist, author, and former medical correspondent for NBC and CBS, is Carecard's Chief Medical Technologist. He is a best-selling author and award-winning war correspondent who now focuses on Machine Learning with a broad background in systems architecture and user interface.
Dr. Arnot received his doctor of medicine degree from McGill University.
Links:
Carecard
Momnibus Legislation
Huntsville Mom Battling ALS Calls for Better Access to Experimental Treatment
The Interoperability and Patient Access Final Rule is Here
Patients for Affordable Drugs Press Release
Shelly Rosenfeld
Cancer Legal Resource Center
Clinical Trials - American Cancer Society
Clinical Trials - National Cancer Institute
Cancer During COVID Series
Patient Correspondent: Myisha Malone King
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Underserved communities are at higher risk for COVID, but they’re getting vaccinated at a slower pace. How do we correct a healthcare system that fails to serve all Americans?
Dennis Johnson joins the show to share lessons learned from his time at the Children’s Health Fund and how to serve marginalized communities by lifting barriers to accessing care.
And Kate speaks with breast cancer survivor Megan-Claire Chase about encountering healthcare discrimination throughout her medical journey.
Guest:
Dennis Johnson
Managing Director for Strategy and Evaluation at Mother Cabrini Health Foundation
Dennis Johnson is part of the executive team at the Mother Cabrini Health Foundation as Managing Director for Strategy and Evaluation. The MCHF mission is to improve the health and wellness of economically disadvantaged and underserved populations in New York State. Mr. Johnson works to develop and direct the foundation's strategic planning and evaluation framework to inform and support effective, impactful grant-making.
Previously, Mr. Johnson was Executive Vice-President for Government Affairs at Children's Health Fund, a non-profit organization that initiates and supports innovative pediatric programs and policies designed to meet the complex health care needs of medically underserved, homeless and economically-disadvantaged children. Mr. Johnson was also Policy Director of the National Center for Disaster Preparedness at Columbia University’s Earth Institute.
Mr. Johnson received his Bachelor's Degree from the University of Pennsylvania and his Master's Degree in Political Management from the Graduate School of Political Management at Baruch College.
Links:
Dennis Johnson
Megan-Claire Chase
CDC: Vaccine database on race and ethnicity paints incomplete picture
Trump-era rebate rule for Medicare Part D on hold until 2023
Aimed Alliance Asks CMS to Reinstate Six Protected Classes Requirements
Beating Cancer Despite the Inequities in Healthcare
Black Woman Ignored - Ends Up with Stage 3 Cancer
Discrimination in the Doctor’s Office
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Congress may soon revisit legislation to tackle the high costs of prescription drugs under Medicare. But drug pricing is never a simple fix.
Guest Peter Pitts explains the ins and outs of drug pricing. Plus, Terry and Bob discuss the Trump-era insulin rule recently frozen by the HHS, and Kate interviews Taylor Kane of Remember the Girls, an organization that advocates for carriers of X-linked diseases.
Guest:
Peter Pitts
President and Co-Founder, Center for Medicine in the Public Interest
From 2002-2004 Peter was FDA’s Associate Commissioner for External Relations, serving as senior communications and policy adviser to the Commissioner. He supervised FDA's Office of Public Affairs, Office of the Ombudsman, Office of Special Health Issues, Office of Executive Secretariat, and Advisory Committee Oversight and Management. He served on the agency’s obesity working group and counterfeit drug taskforce.
His book, Become Strategic or Die, is widely recognized as a cutting edge study of how leadership, in order to be successful over the long term, must be combined with strategic vision and ethical practice. He is the editor of the new book, Coincidence or Crisis, a discussion of global prescription medicine counterfeiting.
He has served as an adjunct professor at Indiana University’s School of Public and Environmental Affairs and Butler University. Mr. Pitts also currently serves as a visiting professor at the University of Paris School of Medicine.
Links:
Peter Pitts
Center for Medicine in the Public Interest
How U.S. CDC missed chances to spot COVID’s silent spread
Biden’s 1M shots-a-day COVID-19 goal was already reached - by Trump
Biden Inherits a Vaccine Supply Unlikely to Grow before April
Remember the Girls
Taylor Kane
Getting to Know Diseases of the Thyroid
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Vaccine distribution is off to a rocky start. While some states are exceeding expectations, others continue to lag behind. This week we grade America’s pandemic response to this point and vaccine distribution. Pandemic preparedness and biodefense expert, and Former Health and Human Services Deputy Secretary, Tevi Troy joins the show to explain where the country passes and fails in its COVID-19 response.
And in our new segment to give legal help to patients, Shelly Rosenfeld of the Cancer Legal Resource Center gives caregivers tips for navigating time off and understanding caregiver duty.
Guest:
Tevi Troy
Former Deputy Secretary, U.S. Department of Health and Human Services
Tevi Troy is a best-selling presidential historian, and a former senior government official. His latest book is Fight House: Rivalries in the White House, from Truman to Trump.
On August 3, 2007, Dr. Troy was unanimously confirmed by the U.S. Senate as the Deputy Secretary of the U.S. Department of Health and Human Services. As Deputy Secretary, Dr. Troy was the chief operating officer of the largest civilian department in the federal government, with a budget of $716 billion and over 67,000 employees.
Dr. Troy has extensive White House experience, having served in several high-level positions over a five-year period, culminating in his service as Deputy Assistant and then Acting Assistant to the President for Domestic Policy.
In addition to his senior level government work and health care expertise, Dr. Troy is also a presidential historian, making him one of only a handful of historians who has both studied the White House as a historian and worked there at the highest levels.
Dr. Troy has a B.S. in Industrial and Labor Relations from Cornell University and an M.A and Ph.D. in American Civilization from the University of Texas at Austin.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Tevi Troy
Fight House: Rivalries in the White House from Truman to Trump
Shall We Wake the President?: Two Centuries of Disaster Management from the Oval Office
HHS Regulations with Enduring Impact on Pricing and Reimbursement of Medical Services and Technologies
Shelly Rosenfeld
Cancer Legal Resource Center
American Cancer Society Caregiver Resources
Cancer Support Community
Caregiver Action Network
Who Cares for the Alzheimer's Caregivers?
From Wife to Caregiver
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
With the new Hospital Price Transparency rule, patients will finally be able to view and compare the costs of services across hospitals. David Balat of Right on Healthcare joins the podcast to share how patients across the country will benefit from transparent prices. Learn how the rule can help you save money on hospital costs.
Plus, Kate speaks with Meredith Casey of the Mighty Meredith Project on advocacy for invisible illnesses.
Guest:
David Balat
Director, Right on Healthcare
David Balat is the director of the Right on Healthcare initiative at the Texas Public Policy Foundation. He has broad experience across the healthcare spectrum with special expertise in healthcare finance. He is a former congressional candidate in Texas’ 2nd Congressional District and a seasoned hospital executive with more than 20 years of healthcare industry leadership and executive management experience.
Balat has earned the privilege of being invited to testify before the U.S. House Committee on Oversight and Reform in Washington, D.C., and before various House committees in the Texas state Legislature. He is a published author and op-ed columnist in Newsweek, U.S. News & World Report, Real Clear Politics, and other news outlets. He is also an active speaker and commentator on matters of health policy.
Balat often volunteers to help families navigate their bills and how to understand their benefits. He serves as a board member for a nonprofit focused on educating legislators and the community about important matters pertaining to healthcare freedom.
Balat is a first-generation American and the first in his family to graduate from college. He received his B.S. from the University of Houston and joint master’s degrees in business administration and hospital administration from the University of Houston – Clear Lake.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
David Balat
Texas Public Policy Foundation
Mighty Meredith Project
CMS Hospital Price Transparency
Price Transparency in Health Care: Will It Soon Be a Reality?
Governor explains how West Virginia became a top state for Covid vaccine administration
Israel is vaccinating so fast it’s running out of vaccine
Patients Rising Concierge
Patient Correspondent: Mollee Huffman
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Democrats soon will control Congress and the White House. What should patients with chronic conditions expect from a federal government run by Democrats who now appear to have no political obstacles for their legislative agenda?
David Mark of the Washington Examiner explains how a Democrat-controlled Senate, House, and White House might influence the direction of health policy. From the likelihood of Medicare for All to expansion of the Affordable Care Act, Terry and David discuss the possible changes in policy that will impact the chronic disease community.
Plus, Kate speaks with Debilee Flores about her battle with Chron’s Disease and the healthcare discrimination she’s endured along the way.
Guest:
David Mark, Senior Editor, Washington Examiner
David Mark is senior editor at the Washington Examiner. Previously, he served as a senior editor at Politico for six years and at CNN Digital Politics, among other roles. He is the author of two books, one about negative campaigning and another examining political language, written with Chuck McCutcheon. David appears regularly as a political analyst on television and radio broadcasts, and in other forums. He also has spoken on policy and politics in 20 countries during lecture trips sponsored by the State Department and European Union.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
David Mark
Discrimination in the Doctor’s Office
Pro-Patient Agenda
Court Ruling in Favor of Hospital Price Transparency
Judge Blocks Trump’s ‘Most Favored Nation’ Drug Pricing Rule
‘Care now has to be rationed’: Los Angeles COVID-19 spike is crushing hospitals
Oklahoma City hospital posts surgery prices online; creates bidding war
SARS-COV-2 Transmission among Marine Recruits during Quarantine
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Congress and the new Biden White House are ready to hit the ground running in 2021. So we’re here to make sure patient needs are addressed and included in upcoming legislation.
On this episode, Terry outlines the Pro-Patient Agenda, a list of 8 items that patients need from the Biden administration. Dr. Bob and field correspondent Kate Pecora join Terry to discuss tackling copay accumulators, healthcare transparency, and more.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Trump’s ‘most favored nations’ experiment undermines care for millions covered by Medicare
Proposed CMS Policy Will Allow Insurers to Broadly Implement Copay Accumulators
Supreme Court upholds controversial Arkansas law that regulates pharmacy benefit managers
‘Maisie’s Army’ Helps 16 Other Children Get Life-Saving Medication Denied by Insurance
Tamika Felder
Cervivor
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The Most Favored Nation Rule will take effect on January 1st. It’s bad news for Medicare infusion patients and providers, but there’s still time to stop it.
The rule makes it financially impossible for medical practices to offer infusion services to Medicare patients. Julie Baak, practice manager at The Arthritis Center, near St. Louis, Missouri, explains how the rule will force many Medicare patients to abandon infusion treatments. And Kate speaks with one of Julie’s patients who depends on his infusion treatments to relieve his pain.
Guest:
Julie Baak, Practice Manager, The Arthritis Center
Julie Baak is the Practice Manager at The Arthritis Center near St. Louis, Missouri. She is a fierce patient advocate and a frequent contributor in the infusion advocacy space. She has published articles on NICA’s (National Infusion Center Association) blog, articles in Rheumatology News, and has been a speaker panelist at NORM (National Organization of Rheumatology Managers) and CSRO (Coalition of State Rheumatology Organizations) annual conferences. Her office is very active on social media and gets results for its patients, by any means necessary, even through public shaming of insurance companies and pharmacy benefit managers.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Julie Baak
Trump’s ‘most favored nations’ experiment undermines care for millions covered by Medicare
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Navigating the legal issues that come with a cancer diagnosis is challenging. From employer discrimination to financial toxicity, legal consultation provides much-needed peace of mind and guidance. Shelly Rosenfeld makes her Patients Rising Podcast debut to address the common legal hurdles faced by patients. Plus, a lesson in patient advocacy for those looking to make their voices heard. Jenn McNary from the Patients Rising Advocacy Master Class tells Kate Pecora how you can take advantage of the program.
Guest:
Shelly Rosenfeld, Co-Director, Disability Rights Legal Center’s Cancer Legal Resource Center (CLRC)
As Co-Director, Ms. Rosenfeld provides legal services through CLRC’s national telephone assistance line to people with cancer-related legal issues, counseling cancer patients, health care professionals, and caregivers. Ms. Rosenfeld’s close to twenty legal articles have been featured in a variety of legal publications, including Conquer: The Patient Voice, Cancer Today, Coping With Cancer magazine, Cancer Wellness magazine, and Cure magazine.
Ms. Rosenfeld participates in the Orange County Cancer Coalition, volunteers as a Legislative Ambassador of the American Cancer Society’s Cancer Action Network, and serves as Board Member of the Cancer Free Generation, the young professionals’ division of the Tower Cancer Research Fund. Ms. Rosenfeld was selected as a recipient of the 40 Under 40 in Cancer Award, an award to recognize the nation’s most promising young oncology professionals and celebrate their contributions to improve the lives of those affected by cancer.
Ms. Rosenfeld earned an LL.M. at UCLA Law School, a JD at UC Hastings College of the Law, a Masters Degree at Northwestern University, and a BA at UC Berkeley. She is a member of the State Bar of California and the District of Columbia.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Shelly Rosenfeld
Cancer Legal Resource Center
Disability Rights Legal Center
Jennifer McNary
Advocacy Master Class
Supreme Court upholds Arkansas law regulating PBMs
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
As President-elect Joe Biden makes his health team picks, we discuss what patients may expect out of a new Democratic Administration and increased Republican seats in the U.S. House. We bring policy experts from both sides of the aisle to discuss what’s in store for patients with chronic disease. Republican strategist Matt Gorman, Democrat strategist Matt Rodriguez, and primary care physician Dr. Mark Fendrick discuss what the future holds for vaccines, value-based care, and healthcare policies.
Guests:
Matt Gorman, Vice President, Targeted Victory
Matt Gorman has advised presidential candidates, members of Congress, and Fortune 500 companies on communications and rapid response. Gorman was most recently the Communications Director for the National Republican Congressional Committee (NRCC) — the youngest in its history. A veteran of two presidential campaigns, he served as rapid response director and national spokesman for Jeb Bush’s 2016 presidential campaign and an aide to Mitt Romney’s 2012 campaign. Gorman regularly appears as an analyst on network and cable news programs.
Matt Rodriguez, CEO, Rodriguez Strategies
A veteran Democratic strategist with more than 20 years of experience working for candidates and causes across the nation, Matt focuses on designing and leading coalition-building campaigns for diverse entities, ranging from emerging nonprofits to Fortune 500 corporations.
In 2008, Matt served as the Western States Regional Director for Obama for America, where he managed campaign operatives and executed strategy throughout the Western United States. Prior to the general election, he served as the New Hampshire State Director for the Obama campaign during the 2008 presidential primary.
A. Mark Fendrick, M.D. Director, Center for Value-Based Insurance Design (V-BID) at University of Michigan
Dr. A. Mark Fendrick is V-BID Center’s Director and a Professor of Internal Medicine in the School of Medicine and a Professor of Health Management and Policy in the School of Public Health at the University of Michigan. Dr. Fendrick received a bachelor’s degree in economics and chemistry from the University of Pennsylvania and his medical degree from Harvard Medical School. He completed his residency in internal medicine at the University of Pennsylvania where he was a fellow in the Robert Wood Johnson Foundation Clinical Scholars Program.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Matt Gorman
Matt Rodriguez
Dr. Mark Fendrick
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Can Republicans and Democrats work together to help the chronic disease community? Former FDA Commissioner Dr. Mark McClellan predicts what healthcare challenges may benefit from bipartisan support in the new year. Plus, he offers his view on the future of the FDA. Terry and Dr. Bob review President-elect Biden’s cabinet picks, as Kate visits with patient advocate Kristina Wolfe about her fight for patient rights and handling advocacy burnout.
Guest:
Mark McClellan, MD, PhD, Director, Margolis Center for Health Policy at Duke University
Mark McClellan, MD, PhD, is Director and Robert J. Margolis, MD, Professor of Business, Medicine and Policy at the Margolis Center for Health Policy at Duke University. He is a physician-economist who focuses on quality and value in health care, including payment reform, real-world evidence, and more effective drug and device innovation. Dr. McClellan is at the center of the nation’s efforts to combat the pandemic, and is the author of a roadmap that details the steps needed for a comprehensive COVID-19 response.
He is the former administrator of the Centers for Medicare & Medicaid Services and former commissioner of the U.S. Food and Drug Administration, where he developed and implemented major reforms in health policy. Dr. McClellan is an independent director on the boards of Johnson & Johnson, Cigna, Alignment Healthcare, and PrognomIQ; co-chairs the Guiding Committee for the Health Care Payment Learning and Action Network; and serves as an advisor for Arsenal Capital Group, Blackstone Life Sciences, and MITRE.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Mark McClellan, MD, PhD
Deploying Big Data to Determine How Well Vaccines Work
Kristina Wolfe
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In the wake of Alex Trebek’s passing, we take a look at the state of pancreatic cancer treatments and care. Julie Fleshman, CEO of the Pancreatic Cancer Action Network, gives insights into the increase in treatment options. Plus, how improving supportive care could potentially improve outcomes for patients fighting this deadly disease.
And in the spirit of Thanksgiving, hear how Quin Taylor helps empower patients living with chronic disease. She works with patients to cope with their conditions and improve their mental health.
Guest:
Julie Fleshman, President and CEO, Pancreatic Cancer Action Network (PanCAN)
The Pancreatic Cancer Action Network is a nonprofit, 501(c)(3) nationwide network of people dedicated to fighting the world’s toughest cancer. Founded by a group of pancreatic cancer survivors and caregivers in 1999, the organization relentlessly pursues its mission by implementing an aggressive and comprehensive strategy of research, patient support, advocacy and awareness.
Julie Fleshman became the organization’s first full-time staff person and its first Executive Director in April 2000. Having lost her father to pancreatic cancer in 1999, she has made it her passion and commitment to change the course of the disease. In July 2004, the Board of Directors appointed Fleshman President and CEO. Under her leadership, the Pancreatic Cancer Action Network has grown from a staff of one with revenues of $228,000 to a staff of over 140 with a budget of more than $40 million.
In addition, Fleshman is the Chair of the World Pancreatic Cancer Coalition, a coalition of more than 80 pancreatic cancer organizations representing 32 countries on six continents.
Fleshman holds her JD and MBA degrees from Santa Clara University and a BA from the University of California, Santa Barbara.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Pancreatic Cancer Action Network
Julie Fleshman
Tayloring Gratitude
Quin Taylor
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Precision medicine is revolutionizing cancer care. Dr. Razelle Kurzrock highlights how personalized treatments improve patient outcomes and quality of life. Plus, it’s enrollment season! Get the information you need for Medicare enrollment in this week’s conversation with Samantha Smith from the Patients Rising Concierge. And as November marks Lung Cancer Awareness Month, Terry and Dr. Bob look at COVID-19’s impact on cancer screenings and late-stage diagnoses.
Guest:
Razelle Kurzrock, M.D. Chief Medical Advisor and Co-Founder, CureMatch
A board-certified medical oncologist and a renowned expert in precision medicine, Dr. Kurzrock is known for developing one of the largest and best known Phase I clinical trial programs in the United States while at MD Anderson Cancer Center in Texas. She is currently heading UCSD’s newly established Center for Personalized Cancer Therapy at the Moores Cancer Center in San Diego, California.
As a physician-scientist, she brings extraordinary expertise, clinical research insights, and business operations experience, while also serving as Chief of the Hematology and Oncology Division at the UCSD School of Medicine. With over 400 peer-reviewed published articles, she has a strong record of competitive grant funding. She also has been the principal investigator for the National Cancer Institute’s U01 Phase I Studies of Targeted Anti-Cancer Agents.
Dr. Kurzrock received her medical degree from the University of Toronto School of Medicine.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Razelle Kurzrock
CureMatch
Samantha Smith
G-Pact
How AI is helping lung cancer patients
COVID-19 in cancer patients on systemic anti-cancer therapies
Moderna’s COVID-19 Vaccine: What You Need to Know
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Power to patients! A new price transparency rule from the U.S. Department of Health and Human Services will allow you to see exactly what you’re paying for. Terry and Dr. Bob discuss the rule that will require private insurers to publish their negotiated rates. Cynthia Fisher shares how the rule will give patients greater control over their healthcare decisions.
Guest:
Cynthia Fisher, Founder and Chairman, Patients Rights Advocate
Cynthia A. Fisher is a life sciences entrepreneur, independent investor, and corporate board director. She founded WaterRev, LLC to invest in novel technologies that enable sustainable practices in water use.
Cynthia is best known for her pioneering work as Founder and CEO of ViaCord, Inc., a leading umbilical cord blood stem cell banking service which she started in 1993. In 2000, she co-founded and was President of the cellular medicines company, ViaCell, Inc. (VIAC). Prior to founding ViaCord, Cynthia ran the Blood Bank Division of Haemonetics Corporation, a medical equipment manufacturer. She began her career in sales at IBM focusing on healthcare IT, insurance, and defense industries.
Cynthia holds an MBA from Harvard Business School, as well as an Honorary Doctorate of Science and BS in Biophysics from Ursinus College.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Cynthia Fisher
Patient Rights Advocate
HHS Finalizes Rule on Insurer Price Transparency
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
As a heated election season wraps up, Terry and Dr. Bob examine the latest results and what they mean for patients and federal healthcare policy. Dr. Madelaine Feldman discusses tactics used by pharmacy benefit managers (PBMs) to profit at the expense of patients. Also, Kate speaks with TikTok sensation Marc Winski about his stutter and the ways he’s embraced it on social media to educate others about the condition.
Guest:
Madelaine Feldman, MD, FACR, President, Coalition of State Rheumatology Organizations
Dr. Madelaine Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans, LA. She is President of the Coalition of State Rheumatology Organizations, Chair of the Alliance for Safe Biologic Medicines, and past member of the American College of Rheumatology Insurance Subcommittee.
Dr. Feldman is a Clinical Assistant Professor of Medicine at the Tulane University School of Medicine, and lectures extensively to patients, physicians, regulators, and legislators, both locally and nationally, speaking before the House Energy and Commerce Committee Health Subcommittee in 2019. She has spoken and written on the drug supply chain, particularly the effect that formulary construction and utilization management tools have on pricing and access to drugs, related to availability and affordability.
Dr. Feldman received her medical degree from the Tulane University School of Medicine.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Madelaine Feldman
Marc Winski
Insurers Must Stop the Tricks, New Rule Says, Offering Consumers a Treat
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Gene therapies can be lifesaving for many patients. But accessing them can be a challenge of its own. Terry and Dr. Bob discuss the private sector’s work to improve accessibility with Biotech executive John Crowley, who shares his views on the moral obligations companies have to patients. Also, Ciji Green shares her battle with her insurance company to access spinal muscular atrophy gene therapy for her daughter.
Guest:
John Crowley, Chairman of the Board, Chief Executive Officer, Amicus Therapeutics
John’s involvement with biotechnology stems from the 1998 diagnosis of two of his children with Pompe disease—a severe and often fatal neuromuscular disorder. In his drive to find a cure for them, he left his position at Bristol-Myers Squibb and became an entrepreneur as the Co-founder, President, and CEO of Novazyme Pharmaceuticals, a biotech start-up conducting research on a new experimental treatment for Pompe disease (which he credits as ultimately saving his children’s lives). In 2001, Novazyme was acquired by Genzyme Corporation where John continued to play a lead role in the development of a drug for Pompe disease as Senior Vice President, Genzyme Therapeutics.
John and his family have been profiled on the front page of The Wall Street Journal and are the subjects of a book by Pulitzer prize-winning journalist Geeta Anand, “The Cure: How a Father Raised $100 Million - And Bucked the Medical Establishment - In a Quest to Save His Children.” The major motion picture, Extraordinary Measures, starring Brendan Fraser and Harrison Ford, is inspired by the Crowley family journey. John also is the author of a personal memoir: Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy.
John is a commissioned officer in the U.S. Navy Reserve, assigned to the United States Special Operations Command, and is a veteran of the global war on terrorism, with service in Afghanistan. He graduated with a B.S. in Foreign Service from Georgetown University, and earned a J.D. from the University of Notre Dame Law School, and an M.B.A. from Harvard.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
John Crowley
Amicus Therapeutics
‘Maisie’s Army’: How a grassroots group is mobilizing to help toddlers access a lifesaving drug
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
States have begun to release their vaccine distribution plans, and President Trump and Biden spent the final debate sparring over the vaccine delivery timeline. The media says conflicting things. What should you believe, and how do you sift through all of these competing ideas? Terry and Dr. Bob discuss the latest on the vaccine front, and in true Patients Rising fashion, offer straight talk on interpreting the messages. Plus, Dr. Hugh Rosen breaks down COVID-19 testing, emerging vaccines and therapeutics.
Guest:
Hugh Rosen, M.D., Ph.D. Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.
Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions.
Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals.
Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmaceutical company focused on the research and development of molecular drugs.
Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Hugh Rosen
Voices from the Pandemic: Ian Haydon
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Drug pricing continues to make the news, so we’re revisiting our conversation with Dr. Janet Woodcock of the FDA about bringing drug manufacturing back to the U.S. Hear how American-made drugs might lower costs and improve overall safety. Plus, get caught up on this week’s healthcare news headlines in our weekly news roundup.
Guest:
Janet Woodcock, M.D. Director, Center for Drug Evaluation and Research (CDER) at the Food and Drug Administration (FDA)
Since Dr. Janet Woodcock joined the FDA in 1986, she has led numerous FDA drug initiatives while maintaining the reliability of the FDA’s regulatory process. She worked to incorporate risk management practices into evaluating drug safety and has taken the lead on efforts to update drug manufacturing procedures and regulations, known as the “Pharmaceutical Quality for the 21st Initiative.”
Dr. Woodcock also recently launched two new drug safety initiatives to improve safety management and regulation both within and outside the FDA.
Currently, Dr. Woodcock is the Director of the Center for Drug Evaluation and Research (CDER) which ensures the effectiveness of drugs, provides data and instructions to health care providers and patients, and monitors clinical trials of new drugs.
Dr. Woodcock received her bachelor’s degree in chemistry from Bucknell University in Lewisburg, Pennsylvania, and her doctor of medicine degree from the Feinberg School of Medicine at Northwestern University Medical School in Chicago, Illinois.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
President Trump’s apparent quick and successful battle with the COVID-19 virus should set the standard for care that all Americans should receive.
Terry and Dr. Bob look at how the White House is grappling with spreading infections, and Dr. Mark Fendrick shares the impact of value-based insurance design on lowering patient costs and improving outcomes. Plus, Kate is joined by Carly Flumer, a patient living with a rare cancer. She tells the story of her journey and how it led her to patient advocacy.
Guest:
A. Mark Fendrick, M.D. University of Michigan’s Value-Based Insurance Design, Director
Dr. Fendrick conceptualized and coined the term Value-Based Insurance Design (V-BID) and currently directs the V-BID Center at the University of Michigan, the leading advocate for development, implementation, and evaluation of innovative health benefit plans. His research focuses on how clinician payment and consumer engagement initiatives impact access to care, quality of care, and health care costs.
He has authored over 250 articles and book chapters and has received numerous awards for the creation and implementation of value-based insurance design. His perspective and understanding of clinical and economic issues have fostered collaborations with numerous government agencies, health plans, professional societies, and health care companies.
Dr. Fendrick is an elected member of the National Academy of Medicine (formerly IOM), serves on the Medicare Coverage Advisory Committee, and has been invited to present testimony before the U.S. Senate Committee on Health, Education, Labor and Pensions, the U.S. House of Representatives Ways and Means Subcommittee on Health, and the U.S. Senate Committee on Armed Services Subcommittee on Personnel.
He is the co-editor in chief of the American Journal of Managed Care and is an editorial board member for 3 additional peer-reviewed publications. He is also a member of the Institute for Healthcare Policy and Innovation at the University of Michigan, where he remains clinically active in the practice of general internal medicine.
Dr. Fendrick received a bachelor’s degree in economics and chemistry from the University of Pennsylvania and his medical degree from Harvard Medical School. He completed his residency in internal medicine at the University of Pennsylvania where he was a fellow in the Robert Wood Johnson Foundation Clinical Scholars Program.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. A. Mark Fendrick
Applying Value-Based Insurance Design to Low-Value Health Services
Putting the Human Back in Healthcare
Diagnosed, Not Defeated
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The future of the Affordable Care Act is uncertain with a Supreme Court vacancy. Terry and Dr. Bob discuss protections for preexisting conditions, and Congressman Michael Burgess speaks on the need for price transparency and passing rebates onto patients. Plus, one of Congressman Burgess’ constituents shares her struggles with accessing her medication due to copay accumulators and specialty pharmacy procedures.
Guest:
Congressman Michael C. Burgess, M.D. U.S. Representative, Texas’ 26th Congressional District
Since 2003, Congressman Michael C. Burgess has served the constituents of Texas’ 26th Congressional District. Prior to his election to Congress, Rep. Burgess spent nearly thirty years as a practicing physician.
Rep. Burgess currently serves on the prestigious House Energy and Commerce Committee as the Republican Leader of the House Energy and Commerce Subcommittee on Health, and also sits on the Subcommittee on Oversight and Investigations and the Subcommittee on Consumer Protection and Commerce. In addition, he is a member of the powerful House Rules Committee.
As of the 115th Congress, Rep. Burgess is the most senior medical doctor, on both sides of the aisle, serving in the House of Representatives. Because of his medical background, Rep. Burgess has been a strong advocate for health care legislation aimed at reducing health care costs, improving choices, reforming liability laws to put the needs of patients first, and ensuring there are enough doctors in the public and private sector to care for America’s patients and veterans. He has voted to repeal the Affordable Care Act over 50 times and has played an important role in bipartisan efforts to reform the Food and Drug Administration.
Rep. Burgess earned his medical degree from the University of Texas Medical School in Houston, and his master’s degree in medical management from the University of Texas in Dallas.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
U.S. Congressman Michael C. Burgess
PatientTexas Twitter
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Cancer research may yield a potential COVID-19 therapeutic. Dr. Bob interviews Dr. John Rothman of Tyme Technologies about the promising preclinical studies for a new therapeutic. Plus, Kate speaks with Michelle Whitlock, a two-time cervical cancer survivor who had a heart attack in her 40s. She shares the importance of self-advocacy in the doctor’s office.
Guest:
John Rothman, Ph.D. Executive VP of Product Development, Tyme Technologies Inc.
Dr. Rothman has more than 30 years of experience in product development across many disciplines and markets. He was a clinical scientist at the pharmaceutical companies, Schering Plough and Roche, where he was also a clinical director for a number of different therapeutic areas and senior director for all of Roche’s data acquisition, statistical analysis and report writing for all experimental and approved drugs in the Roche portfolio. His work on Interferon-α in AIDs-related Kaposi’s Sarcoma resulted in the approval of the first recombinant drug and AIDS treatment called Referon-A.
Dr. Rothman later held R&D director positions at Roche and was associated with a number of development programs that resulted in marketed drugs, including Rocephin, Coactin, Rimadyl, Larotid, Dalmane, Rimantidine, Gantrisin, Versed, and more. Dr. Rothman was later an executive vice president of science and operations at the biotech company, Advaxis, where he was responsible for R&D, toxicology, regulatory, chemistry, data management, manufacturing, and intellectual property. Dr. Rothman has since held chief executive roles with several biopharmaceutical companies. During his career, Dr. Rothman filed numerous patents and managed a portfolio of over 80 issued patents and patent applications.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. John Rothman
Tyme Inc.
Tyme’s Oncology Research Reveals Potential New Oral Therapy TYME-19 in the Fight Against COVID-19
In ‘Power Grab,’ Health Secretary Azar Asserts Authority Over F.D.A.
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The finish line for the vaccine race is just around the corner. Terry and Dr. Bob react to vaccine developments and respond to ICER’s recent attacks.
Plus, the second part of our interview with Dr. Robert Popovian gives us the latest on Operation War Speed, President Trump’s executive orders and the impact on drug costs for patients. And Kate brings us an inside look at a clinical trial from participant Ian Haydon.
Guest:
Robert Popovian, PharmD. VP of U.S. Government Relations, Pfizer Inc.
Robert Popovian is currently Vice President, U.S. Government Relations at Pfizer Inc. where he leads the advocacy function in the U.S. Robert brings over two decades of experience in numerous facets of the biopharmaceutical and health care industry with a strong track record of expertise in Health Care Policy and Economics, Government Relations, Medical Affairs, and Strategic Planning.
Robert has published and presented extensively on the impact of biopharmaceuticals and health policies on health care costs and clinical outcomes, including authorship in clinical and healthcare delivery journals, and is a published expert source in First Word, The Hill, Los Angeles Times, USA Today, Pink Sheet, Managed Healthcare Executive and Bloomberg News amongst many others.
He also writes a regularly published column in Morning Consult regarding health policy and economic issues relevant to the biopharmaceutical industry. He is a frequent speaker at healthcare policy and medical conferences on topics such as payment and delivery reform, pricing, reimbursement, biosimilars, biopharmaceutical innovation, and health economics. He currently serves on the Board of Councilors of the University of Southern California, School of Pharmacy and Board of Advisors for Capital RX.
He is one of the few researchers who has studied and published both clinical and policy related economic analysis as well as one of a handful who have studied and published empirical data regarding emerging payment models in the U.S. healthcare system and for biopharmaceutical reimbursement. He also was one of the first to secure inclusion of health outcomes data regarding labeled indication of a biopharmaceutical.
Robert completed his Doctorate in Pharmacy and Master of Science in Pharmaceutical Economics and Policy degrees at the University of Southern California with honors. He also has completed a residency in Pharmacy Practice/Adult Internal Medicine and Infectious Diseases at the Los Angeles County – University of Southern California Hospital and a fellowship in Pharmaceutical Economics and Policy at University of Southern California.
Robert is married to Maylin Megran Popovian. They have two daughters, Katrina and Natalya. They have residences both in Los Angeles, CA and Washington, DC.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Robert Popovian
Voices from the Pandemic: Ian Haydon
The Federal Program That Keeps Insulin Prices High by Adam J. Fein
How Lilly is Helping Discounts Reach People with Diabetes in 340 B
Contributions of Public Health, Pharmaceuticals, and Other Medical Care to US Life Expectancy Changes, 1990-2015
How ‘Emergency Use’ Can Help Roll Out a COVID Vaccine
Pfizer Opted Not to Take Fed Money to ‘Liberate Scientists from any Bureaucracy’
Terry’s Twitter Response
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Get an inside look into the drug supply chain and the factors that impact your bill at the pharmacy counter. Dr. Robert Popovian, VP of Government Relations at Pfizer, joins Terry to discuss how benefit design and rebates impact the cost of your medicine. Plus Kate speaks with Jackie Price, a double lung transplant recipient, on cystic fibrosis and the importance of organ donors.
Guest:
Robert Popovian, PharmD. VP of U.S. Government Relations, Pfizer Inc.
Robert Popovian is currently Vice President, U.S. Government Relations at Pfizer Inc. where he leads the advocacy function in the U.S. Robert brings over two decades of experience in numerous facets of the biopharmaceutical and health care industry with a strong track record of expertise in Health Care Policy and Economics, Government Relations, Medical Affairs, and Strategic Planning.
Robert has published and presented extensively on the impact of biopharmaceuticals and health policies on health care costs and clinical outcomes, including authorship in clinical and healthcare delivery journals, and is a published expert source in First Word, The Hill, Los Angeles Times, USA Today, Pink Sheet, Managed Healthcare Executive and Bloomberg News amongst many others.
He also writes a regularly published column in Morning Consult regarding health policy and economic issues relevant to the biopharmaceutical industry. He is a frequent speaker at healthcare policy and medical conferences on topics such as payment and delivery reform, pricing, reimbursement, biosimilars, biopharmaceutical innovation, and health economics. He currently serves on the Board of Councilors of the University of Southern California, School of Pharmacy and Board of Advisors for Capital RX.
He is one of the few researchers who has studied and published both clinical and policy related economic analysis as well as one of a handful who have studied and published empirical data regarding emerging payment models in the U.S. healthcare system and for biopharmaceutical reimbursement. He also was one of the first to secure inclusion of health outcomes data regarding labeled indication of a biopharmaceutical.
Robert completed his Doctorate in Pharmacy and Master of Science in Pharmaceutical Economics and Policy degrees at the University of Southern California with honors. He also has completed a residency in Pharmacy Practice/Adult Internal Medicine and Infectious Diseases at the Los Angeles County – University of Southern California Hospital and a fellowship in Pharmaceutical Economics and Policy at University of Southern California.
Robert is married to Maylin Megran Popovian. They have two daughters, Katrina and Natalya. They have residences both in Los Angeles, CA and Washington, DC.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Robert Popovian
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
In celebration of Labor Day, we look at a business that is empowering the chronic disease community. Kate interviews Keisha Greaves, founder of the clothing brand Girls Chronically Rock. Plus, Terry and Dr. Bob discuss a potential COVID-19 vaccine by fall and provide an update on Erica Dean’s canceled ICER speech.
Guest:
Keisha Greaves, Owner, Girls Chronically Rock
Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock offers inspired fashion celebrating muscular dystrophy and other chronic illnesses.
Over the past few years, Keisha has been featured in Improper Bostonian, Boston Voyager, Herself 360, and Liz on Biz, among other outlets on and offline.
She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and most recently, Girl’s Night Out for Muscular Dystrophy, a Boston-area fundraising event held by NextonScene.
Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA, the most successful collaborations being with renowned designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week.
One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb-Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge.
Keisha earned her bachelor’s degree in fashion design and merchandising from Framingham State College, and her master’s in business management from Cambridge College.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Girls Chronically Rock
Keisha Greaves
Owning Personal Health Records is the Key to Medical Innovation, by Dr. Robert Goldberg
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The lives of chronic and rare disease patients depend on the progress of medical discoveries. Dr. Gary Michelson explains how investment in innovative, high-risk research will improve patient outcomes. Plus hear from Lindsey Kizer, who depends on the U.S. Postal Service to deliver medication for her narcolepsy.
Guest:
Gary Michelson, M.D. Founder, Michelson Medical Research Foundation
Dr. Gary Michelson is an orthopedic spinal surgeon, inventor, and philanthropist. He is an accomplished surgeon, having made numerous contributions to the medical field through his research and development of 950 patents.
After over two decades of medical practice, Dr. Michelson began several philanthropic efforts. In 1995, he founded The Michelson Medical Research Foundation (MMRF), which invests in innovative research projects to improve patient outcomes across the world.
Through MMRF, Dr. Michelson has been involved with a variety of philanthropic projects, including the Michelson Center for Convergent Bioscience at USC, Michelson Ethical Research and Education, Michelson Prizes for Human Immunology and Vaccine Research (HPV), and more.
Dr. Michelson received his medical degree from Hahnemann Medical College of Drexel University, and his bachelor’s degree in biology and psychology from Temple University in Philadelphia.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Michelson Medical Research Foundation
America’s Needed Medical Revolution
Lindsey Kizer
Patients Rising Concierge
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ICER’s pricing models assess the value of a drug and whether your life is worth paying for it. Health economist Dr. Paul Langley explains how ICER’s recommendations devalue patient lives and create barriers to accessible treatments. Dr. Bob and Terry examine the high profits recently reported by health insurance companies, while Kate speaks with Jen Hepworth on accessing cystic fibrosis treatments for her daughter. And we hear from Erica Dean, a mom with a daughter living with cystic fibrosis, who ICER canceled from speaking at their event next week. We allow her to share her story with us!
Guest:
Paul C. Langley, Ph.D. Health economist and adjunct professor in the College of Pharmacy, University of Minnesota
Dr. Paul C. Langley is a health economist with an extensive background in drug evaluation for pharmacy and therapeutics companies. In the early 1990s, Dr. Langley evaluated the economics for the introduction of new pharmaceutical products. In Australia, he worked to analyze cost-effectiveness cases brought forward by pharmaceutical companies introducing new products until 1994.
After moving to America, Dr. Langley produced numerous research projects regarding evaluation techniques for the introduction of new pharmaceutical and therapeutic products to the United States. In 1997, he also established the Center for Pharmaceutical Economics at the University of Colorado.
From 1999 to 2005, Dr. Langley used his global experience and perspective in his role as International Manager of Health Economics at 3M Pharmaceuticals.
Dr. Langley’s research focuses on issues of population health. His recent publications have analyzed how ICER’s cost-effectiveness claims in the U.S. do not meet scientific standards.
Currently, Dr. Langley is the director of Maimon Research LLC, an Arizona-based health economics consulting and research company. He also works as an adjunct professor at the University of Minnesota’s College of Pharmacy. Dr. Langley is currently an Advisory Board Member and Research Director for the Institute of Patient Access.
Dr. Langley earned his bachelor’s degree in economics from the University of Hull in the U.K., his master’s degree from Carleton University, and his doctorate degree from Queen’s University in Canada.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Maimon Research LLC
Langley PC. More Unnecessary Imaginary Worlds – Part 3: Cystic Fibrosis and the Institute for Clinical and Economic Review’s Draft Evidence Report. Inov Pharm. 2020;11(1): No. 15
Langley P. Value Assessment in Cystic Fibrosis: ICER’s Rejection of the Axioms of Fundamental Measurement. Inov Pharm. 2020;11(2):No. 8
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With a vaccine still months away, Americans with chronic disease are adapting to life with COVID-19. Dr. Paul Offit returns to discuss the status of a vaccine and living with the risk of infection. Terry and Bob consider school re-openings, and Kate interviews patient advocate Michael Smith on his work with the FDA to expand treatment options for gastroparesis.
Guest:
Paul Offit, M.D.
Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia.
Dr. Paul Offit has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. He is a recognized expert on vaccines, immunology, and virology.
Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.
Dr. Offit has published over 160 papers in medical journals concerning his work on the rotavirus vaccine and overall vaccine safety practices. He also has authored eight books on vaccines and how they are explained to the general public.
Previously, Dr. Paul Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two.
Dr. Offit earned a B.S. from Tufts University in Boston, Massachusetts, and his M.D. from the University of Maryland, Baltimore.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Paul Offit
Overkill: When Modern Medicine Goes Too Far
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Patients deserve easy access to their medical records. With digital healthcare solutions on the rise, new companies are providing patient-centric solutions to gather, own, and share personal health data.
Dr. Bob speaks with Seqster CEO and Co-Founder Ardy Arianpour, who is striving to make health data more accessible for patients. And Kate interviews Marie Dagenais-Lewis about creating inclusive workplaces for employees with disabilities.
Guest:
Ardy Arianpour, Seqster, CEO and Co-Founder
Ardy Arianpour is CEO & Co-Founder of Seqster, an award-winning SaaS healthcare platform that enables organizations to drive efficient healthcare via comprehensive medical records (EHR), individual genomic profiles (DNA), and personal health device data.
For the first time, users create their own matched, longitudinal health data profile across all of their U.S.-based healthcare data sources through person-centric interoperability. Ardy is a visionary health tech executive and serial entrepreneur in biotech and digital health. Prior to starting Seqster, Ardy launched several clinical and consumer-based genetic tests as CCO of Pathway Genomics, and served as SVP of Ambry Genetics, which sold to Konica in 2017 for $1 billion.
As a key player in the 2013 landmark SCOTUS decision scrapping gene patents, Ardy played an instrumental role in expanding genetic testing access with the launch of BRCA testing benefiting patients and family members across the country. He made Medical, Marketing, and Media’s (MMM) list as a Top 40 Healthcare Transformer and was recognized among the San Diego Business Journal’s 40 under 40.
Ardy received his bachelor’s degree in biological sciences from UC Irvine and his MBA from Marshall Goldsmith School of Management.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Seqster
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
President Trump’s recent executive orders are a move to lower prescription drug prices for patients. But what changes should patients expect to see? We talk to the former lead health advisor to President Trump, Katy Talento, who breaks down exactly how the orders will impact patients.
Terry and Bob discuss the policies, including co-pay accumulators and rebates. And Kate speaks with Jack Haskins, who has to pay thousands of dollars for medication due to co-pay accumulators.
Guest:
Katy Talento
Katy Talento is an epidemiologist, licensed benefits consultant, and healthcare policy advisor. Ms. Talento most recently served as the lead health advisor to President Trump on the Domestic Policy Council. In her White House role, Ms. Talento worked to promote healthcare price transparency, lower prescription drug prices, and promote affordable healthcare options.
Currently, Ms. Talento is the President of KFT Consulting, where she advises organizations and employers on health programs, updates in healthcare policies and the resulting industry impacts, and strategies for lowering costs while improving quality of care.
Ms. Talento has been active in both the public and private sectors. For fifteen years she advised five U.S. senators on health policy. Within the private sector, she helped energy companies implement plans to protect their workforces from infectious diseases.
Ms. Talento earned her bachelor’s degree in sociology from the University of Virginia, and her master’s degree in epidemiology from Harvard’s T.H. Chan School of Public Health.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Katy Talento
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Value-based healthcare models are a way to improve patient outcomes and lower the cost of care. Dr. Bob speaks with former FDA and CMS chief Dr. Mark McClellan, who says the pandemic has shown the benefits of value-based care and digital medical technologies.
And as many offices begin reopening, immunocompromised employees are put in a difficult position. Kate speaks with New York City resident Danielle, whose doctor advised against her return to her workplace.
Guest:
Mark McClellan, M.D., Ph.D.
Dr. Mark McClellan is a physician and economist with healthcare policy experience in both the government sector and academia. Dr. McClellan served as commissioner for the Food and Drug Administration from 2002 to 2004. He then immediately transitioned into his role as administrator for the Centers for Medicare and Medicaid Services in the U.S. Department of Health and Human Services, where he served until 2006.
Dr. McClellan’s research focuses on improving the quality of healthcare, economic and policy impacts on healthcare decisions, and how digital technologies can impact care delivery and cost.
Currently, Dr. McClellan is the Director of the Duke-Margolis Center for Health Policy at Duke University. The center conducts extensive interdisciplinary research on health policy initiatives to improve the value of healthcare.
Additional public service roles include Deputy Assistant Secretary for Economic Policy at the Department of Treasury, member of the President’s Council of Economic Advisers, and White House Senior Director for Healthcare Policy.
Dr. McClellan earned his medical degree from the Harvard-MIT Division of Health Sciences and Technology, and his doctorate in economics from Massachusetts Institute of Technology.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Mark McClellan
Margolis Center for Health Policy
Complaints Related to COVID-19 Regulations (New York)
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Despite interruptions due to COVID-19, Congress continues working to address health disparities, chronic disease, and relief for coronavirus. Terry interviews Congressman Fred Upton, co-author of the 21st Century Cures Act, to find out what is in store for Cures 2.0. And Kate speaks with Lori Long, who faces losing her disability benefits if she marries her fiancé.
Guest:
Congressman Fred Upton,U.S. Representative, Michigan’s 6th Congressional District
Congressman Fred Upton represents Michigan’s 6th Congressional District, which is home to agricultural, auto parts manufacturing, and biomedical industry centers. In 2014, Rep. Upton co-authored the 21st Century Cures Act, with a goal of expediting the research and delivery of rare disease treatments. The bill was signed into law by former President Barack Obama in 2016.
Currently, he serves as the top Republican leader of the Subcommittee on Energy. From 2010 to 2016, he served as Chairman of the Committee on Energy and Commerce, where he oversaw matters of healthcare, trade, manufacturing, and more.
Prior to his election to Congress in 1986, Rep. Upton worked in the Office of Management and Budget under former President Ronald Reagan.
Rep. Upton received his bachelor’s degree in journalism from the University of Michigan.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
U.S. Representative Fred Upton
The government is still telling disabled people whom they can marry and this woman has had enough of it.
Lori’s Law Petition
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Can technology improve healthcare, even without the in-person relationship? Telemedicine has seen an explosion of utilization due to the pandemic. On this episode, we explore the countless new technologies that are changing healthcare as we know it. Dr. Bob speaks with Dr. Eric Topol on advances in artificial intelligence and personalized medicine. And Kate interviews a woman with metastatic breast cancer on the healthcare disparities that impact African American women.
Guest:
Eric Topol, M.D. Executive VP, Scripps Research
Dr. Eric Topol is a physician-scientist, cardiologist, and author, with over forty years of experience in the medical field. Dr. Topol has conducted extensive research in personalized medicine, which analyzes a patient’s biological makeup to pinpoint an appropriate treatment plan. He has also written three best-selling books on technology and the future of medicine.
Currently, Dr. Topol serves as Executive Vice President at Scripps Research. In 2007, he founded Scripps Research Translational Institute, where he now serves as director. The Translational Institute seeks to combine advances in human genomic research with wireless technological developments to promote individualized approaches to healthcare.
Due to his research achievements, Dr. Topol is one of the top ten most cited researchers in medicine. A 2012 poll conducted by Modern Healthcare ranked him as the most influential physician leader in America.
Dr. Topol earned his bachelor’s degree in biomedicine from the University of Virginia and his medical degree from the University of Rochester’s School of Medicine and Dentistry.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Eric Topol
Jamil Rivers
Facing MBC Together
Ignoring cancer care now may trade one public health crisis - COVID-19 - for another, NCI chief warns
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
At the pharmacy counter, patients are often surprised by mysterious high costs, due to pharmaceutical benefit managers (PBMs). These middlemen lead to inconsistent and unclear prices, making it difficult for chronic disease patients to access medication. But some PBMs are breaking this mold. We hear from the CEO of Capital Rx, a PBM that is setting the industry standard by putting the patient first.
Guest:
A.J. Loiacono, CEO, Capital Rx
A.J. Loiacono is a healthcare executive with 20 years of experience in pharmacy benefits, finance, and software development. His diverse skill set led him to develop engineering solutions to improve patient care within the pharmacy benefits industry.
Mr. Loiacono is CEO of Capital Rx, a pharmaceutical benefit manager that operates on a “Clearinghouse Model” to deliver price transparency. As CEO, Mr. Loiacono works to improve patient outcomes by reducing employer group prescription drug costs.
Prior to Capital Rx, Mr. Loiacono co-founded Truveris, where he served as CEO for eight years. He also founded Victrix, a pharmaceutical supply chain consultancy.
Mr. Loiacono earned his degree in finance from Manhattanville College in Purchase, New York.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Capital Rx
ICER Provides First Treatment to Pricing Models for Remdesivir as a Treatment for COVID-19
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
COVID-19 has hit minority populations particularly hard, delivering a wake-up call to healthcare policymakers. How can we change the system to help marginalized communities get access to the care they need? Dr. Bob speaks with Dr. Frank L. Douglas, who describes his experiences fighting racism within the healthcare industry. And we hear from a member of the LGBTQ+ community battling the stigma of HIV.
Guest:
Frank L. Douglas, M.D., Ph.D.
Dr. Frank L. Douglas has over thirty years of experience in the healthcare and pharmaceutical industry. Most recently, Dr. Douglas served as CEO of TheVax Genetics USA Inc. and Member of the Board of TheVax Genetics Vaccine Co.
Born in Guyana in 1943, Dr. Douglas traveled to America on a Fulbright scholarship to attend college. After completing his studies and receiving his medical degree, he went on to teach clinical pharmacology at the University of Chicago’s Pritzker School of Medicine. He’s also held positions as Chief Scientific Advisor of Bayer Healthcare, First Executive Director of the MIT Center for Biomedical Innovation, and co-founder of Douglas Ahmed Consulting.
In 2019, Dr. Douglas published his memoir Defining Moments of a Free Man from a Black Stream. It describes his experiences navigating racism within both university and professional settings in America.
Dr. Douglas earned his doctorate in physical chemistry and his medical degree from Cornell University in Ithaca, New York.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Frank L. Douglas, M.D., Ph.D.
Defining Moments of a Free Man from a Black Stream
COVID-19 Will Help Us Overhaul Clinical Trials
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Patients with rare diseases may soon have better access to treatments. A second installment to the 21st Century Cures Act is in the works that would make improvements to telemedicine and digital health regulations. Find out what this means for the rare disease community in this interview with Diane Berry, Ph.D. And hear Kate’s interview with Lan Sena, a healthcare advocate who has been battling Hodgkin’s lymphoma for the past ten years.
Guest:
Diane Berry, Ph.D. Senior VP, Global Health Policy, Government and Patient Affairs, Sarepta Therapeutics
Diane joined Sarepta Therapeutics in December of 2011 and serves as Vice President, Global Policy, Government & Patient Affairs. She engages policymakers at the federal, state, and local levels, as well as patient advocacy organizations. She works to advance critical policies related to newborn screening, regulatory policy, and reimbursement and access, with the goal of expediting development and patient access to genetic-based therapies for rare diseases.
Previously, Dr. Berry served in leadership roles for the federal government in both the legislative and executive branches, overseeing and implementing science, technology and public health activities. She served as a Subcommittee Staff Director and Senior Professional Staff Member for the U.S. House of Representatives Committee on Homeland Security and as Chief Scientist and Senior Biodefense Advisor at the Department of Homeland Security inside its Office of Health Affairs.
Dr. Berry was also a Senior Science Advisor at McKenna, Long, and Aldridge, and a Science and Technology Policy Advisor and Fellow within the Department of Defense through the American Association for the Advancement of Science.
Dr. Berry earned her Ph.D. in chemical engineering from Northwestern University and her B.S. and M.S. in chemical/biochemical engineering from Tufts University.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Diane Berry, Ph.D.
Be The Match
Doctors can still prescribe HCQ to patients, says U.S. Health Secretary
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Made in the USA: The return of drug manufacturing to the U.S. could help improve drug safety, cost, and accessibility for patients with chronic disease. Dr. Janet Woodcock is director of the FDA’s Center for Drug Evaluation and Research. She tells us about new technologies and processes to make this possible. Also, Dr. Bob celebrates his birthday by looking into Medicare options. Field correspondent Kate Pecora speaks with Mark Olsen, who describes the challenges of securing adequate healthcare and education for his son who lives with a rare disease.
Guest:
Janet Woodcock, M.D. Director, Center for Drug Evaluation and Research (CDER) at the Food and Drug Administration (FDA)
Since Dr. Janet Woodcock joined the FDA in 1986, she has led numerous FDA drug initiatives while maintaining the reliability of the FDA’s regulatory process. She has worked to incorporate risk management practices into evaluating drug safety and has taken the lead on efforts to update drug manufacturing procedures and regulations, an effort known as the “Pharmaceutical Quality for the 21st Initiative.”
Dr. Woodcock also recently launched two new drug safety initiatives to improve safety management and regulation.
In her current position, Dr. Woodcock’s organization works to ensure the effectiveness of drugs, provides data and instructions to health care providers and patients, and monitors clinical trials of new drugs.
Dr. Woodcock received her bachelor’s degree in chemistry from Bucknell University in Lewisburg, Pennsylvania, and her Doctor of Medicine degree from the Feinberg School of Medicine at Northwestern University Medical School in Chicago.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Asymptomatic spread of Coronavirus is ‘very rare,’ WHO says
Manufacturing API, Drugs and Excipients (MADE) in America Act
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
A victory for patients in Oklahoma as the state bans a discriminatory healthcare metric. Quality-adjusted-life-years (QALYs) are used by numerous insurance companies to block coverage based on disability or age. Two mothers of children with spinal muscular atrophy (SMA) explain how QALYs impact their children’s access to affordable healthcare.
Guest:
Amanda Chaffin
Amanda Chaffin is the mother of Kayden, a seven-year-old with spinal muscular atrophy (SMA). Amanda and her family reside in Norman, Oklahoma, where a ban on quality-adjusted-life-years was recently enacted.
Following Kayden’s diagnosis, Amanda faced immense challenges in securing the medical equipment he needed, which propelled her into the patient advocacy space. She works with Cure SMA, an organization that drives funding for SMA research and provides support for families affected by the genetic disease.
Kayden Chaffin made news headlines over the thousands of Christmas cards that strangers sent to him over the holidays.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Oklahoma QALY Ban
Patients Anticipate Future Access to Care Troubles from COVID-19
Kayden’s Christmas Cards
Cure SMA
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Higher quality care at lower prices might be possible. Some companies are harnessing the power of anonymous, patient data to improve patient protocols and replace pharmacy benefit managers. Dr. Bob sits down with two leaders in the health care data industry that are doing just that. And with Memorial Day weekend still fresh on our minds, Kate speaks with a veteran who makes a plea for protecting veteran care under the Veterans Administration.
Guests:
Travis Leonardi, Chief Executive Officer at Agilum Healthcare Intelligence
Travis Leonardi has been involved in the healthcare space for over 30 years. Mr. Leonardi is a pharmacist and entrepreneur who has combined his medical and business experiences to create several health care-focused companies.
In 2004, Mr. Leonardi founded Sentry Data Systems, where he currently serves as President and CEO. The Florida-based company provides pharmacy procurement and utilization services and focuses on analyzing real-time data to improve the quality of care at lower costs.
Currently, Mr. Leonardi also serves as the CEO at Agilum, a leading provider of Comparative Rapid Cycle Analytics for hospitals, life sciences companies, and payers.
Travis Leonardi is a registered pharmacist and graduate of St. John’s Pharmacy School in New York City.
William Kirsh, D.O., M.P.H. Chief Medical Information Officer at Agilum Healthcare Intelligence
Dr. William Kirsh has over 30 years of experience in the public health field, including clinical practice, healthcare insurance, and software development. Dr. Kirsh is certified to practice geriatric medicine, hospice and palliative medicine, and family medicine. Combined with a background in IT innovation, Dr. Kirsh brings a unique perspective to his current role as Chief Medical Information Officer at Agilum.
Dr. Kirsh’s work is focused on applying data to solve population-based health problems in order to improve treatment practices and patient outcomes. His interests lie in public health and epidemiology.
Previously, Dr. Kirsh served as the CEO and Chief Medical Officer at Foundation Health Plan of Florida and was the Vice President of Medical Affairs and Quality Assurance at the Physicians Corporation of America Inc.
Currently, Dr. Kirsh continues to practice acute care medicine at several local hospitals and serves as a volunteer physician in the United States Coast Guard Auxiliary.
Dr. Kirsh received his D.O. from Nova Southeastern University in Fort Lauderdale, Florida, and his M.P.H. from Johns Hopkins University in Baltimore, Maryland.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Agilum
Ted Corcoran
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your ZIP code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
What will this cost? It’s the big question when it comes to healthcare, and it’s often impossible to answer. Health care policy expert David Balat explains how transparent pricing models put patients in control of their healthcare finances, and Kate speaks with Siobhan Benham, a nurse practitioner who explains the patient benefits of Direct Primary Care.
Guest:
David Balat, Healthcare Policy Director for the Texas Public Policy Foundation
David Balat is a healthcare finance expert with over twenty years of experience and leadership in the healthcare industry. With his wealth of industry experience, he has served as the healthcare advisor for the Texas House of Representatives and has counseled numerous members of the U.S. Congress on healthcare policy.
Currently, Mr. Balat serves as the Healthcare Policy Director for the Texas Public Policy Foundation, where he leads the Right on Healthcare Initiative, which aims to put patients in control of healthcare decisions through price transparency and expanded healthcare options.
Mr. Balat has worked extensively within executive management positions in the healthcare field. Starting in 2013, Mr. Balat served as the Executive Director of Olive Branch Management Services, where he worked extensively within the healthcare field to improve patient access and processes while decreasing costs. Past experiences also include serving as the President of Torch Recovery Services, Interim CEO of Humble Surgical Hospital, LLC, and CFO of Mobile Diagnostics.
Mr. Balat received a B.S. in biology from the University of Houston, and a joint M.B.A./M.H.A. from the University of Houston Clear Lake.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Colorado Changes How Coronavirus Deaths are Counted
Right on Healthcare Initiative
Free to Care
Hearthside Family Health
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
The nation is focused on development of a COVID-19 vaccine. And there’s conflicting information from all sides. For those with chronic illnesses, a vaccine will be even more critical if they hope to return to offices and clinics for routine treatments and doctor visits.
But what dangers lie in a vaccine being developed too quickly? On this episode, Dr. Paul Offit explores the current state of the COVID-19 vaccine. And recent college graduate Kate Pecora speaks with a patient whose health relies on the vaccination of others.
Guest:
Paul Offit, M.D. Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia.
Dr. Paul Offit has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. His expertise and research focus is on vaccines, immunology, and virology.
Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.
Dr. Offit has published over 160 papers in medical journals dealing with his work on the rotavirus vaccine and overall vaccine safety practices. He also has authored eight books on vaccines and how they are communicated to the general public.
Previously, Dr. Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two.
Dr. Offit earned a B.S. from Tufts University in Boston and earned his M.D. from the University of Maryland, Baltimore.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Paul Offit
Overkill: When Modern Medicine Goes Too Far
Rare Candace
Patients Rising Concierge
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Health economist Dr. Paul C. Langley explains the faults in ICER’s price calculations. Dr. Bob discusses his antibody test for COVID-19, and Kate speaks with a mother whose son passed away due to insulin rationing.
Guest:
Paul C. Langley, Ph.D. Health economist and adjunct professor in the College of Pharmacy, University of Minnesota
Dr. Paul C. Langley is a health economist with an extensive background in drug evaluation for pharmacy and therapeutics companies. In the early 1990’s, Dr. Langley evaluated the economics for the introduction of new pharmaceutical products. In Australia, he worked, until 1994, to analyze cost-effectiveness cases brought forward by pharmaceutical companies introducing new products.
After moving to America, Dr. Langley produced numerous research projects regarding evaluation techniques for the introduction of new pharmaceutical and therapeutic products to the United States. In 1997, he also established the Center for Pharmaceutical Economics at the University of Colorado.
From 1999 to 2005, Dr. Langley used his global experience and perspective in his role as International Manager, Health Economics, at 3M Pharmaceuticals.
Dr. Langley’s research papers largely focus on issues of population health. His recent publications have analyzed how ICER’s cost-effectiveness claims in the U.S. do not meet scientific standards.
Currently, Dr. Langley is the director of Maimon Research LLC, an Arizona-based health economics consulting and research company. He also works as an adjunct professor at the University of Minnesota’s College of Pharmacy. Dr. Langley is currently an Advisory Board Member and Research Director for the Institute of Patient Access.
Dr. Langley earned his B.S. in economics from the University of Hull in the U.K., his M.A. from Carleton University, and his Ph.D. from Queen’s University in Canada.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Maimon Research LLC
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Many patients with chronic illnesses have had their treatments delayed or postponed as healthcare shifts its focus to COVID-19. Lifesaving procedures for the chronically ill have been put on the back burner.
How does the healthcare system prioritize who is worth immediate care, and what does that mean for the patients put at the end of the line?
On this episode, we explore these moral dilemmas in healthcare with the help of Dr. Camosy, a professor of bioethics. And Kate speaks with Jennifer McNary, a mother fighting against ICER’s pricing roadblocks in order to get her sons’ access to treatment for Duchenne Muscular Dystrophy.
Guest:
Charles C. Camosy, Ph. D. Author and associate professor of theological and social ethics at Fordham University
Dr. Charles C. Camosy is an award-winning author and avid researcher on issues related to bioethics, healthcare, moral anthropology, and more. Through his work on “intellectual solidarity,” he aims to unpack the often complex and highly emotional issues that are prevalent in societal discourse.
Dr. Camosy has authored four books that analyze the polarization of topics including abortion, binaries in public discourse, treatment of animals, and healthcare. He has written numerous academic articles on issues of morality and bioethics.
Currently, Dr. Camosy is an associate professor at Fordham University’s theology department. He serves on both the board of the College Theology Society and the advisory board of the New England Partnership for the Common Good.
Dr. Camosy earned his B.A., M.A., and Ph.D. from the University of Notre Dame in Indiana.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Dr. Charles C. Camosy
The drugs and treatments that could stop COVID-19
Patients Rights Advocate
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
Restaurant menus list their prices. So why not hospitals? Unfortunately, patients usually don’t know the cost of their procedure or medication until they get the bill. Getting access to hospital pricing is also just as difficult as getting a hold of your own digital medical records. So how can patients take back control over their healthcare decisions?
On this episode, we discuss the ins and outs of price transparency models, and how to pass legislation that will put you in control of your finances and health.
Guest:
Cynthia Fisher, Founder and Chairman, PatientRightsAdvocate.org and founder and former CEO of ViaCord, Inc.
Cynthia Fisher is an established science entrepreneur with over 25 years of experience in the life science industries. She is an advocate for real price transparency, having founded the non-profit Patient Rights Advocate in 2017. Under her leadership, the organization seeks to elevate the voices of patients that are burdened by healthcare costs and to raise awareness of price transparent healthcare models.
Cynthia is best known for establishing ViaCord Inc. in 1993, a company that offers umbilical cord blood banking and genomic testing with the goal of potentially treating select cancers and genetic diseases. In 2000, Cynthia co-founded ViaCell Inc., which absorbed ViaCord Inc. as a new division. At ViaCell Inc., Cynthia served as President and sat on the Board of Directors.
Her experience in healthcare advocacy also extends into the public sector. In 2017, Cynthia was appointed to the Health Information Technology Advisory Committee by former Speaker of the House Paul Ryan.
Cynthia earned a B.S. in Biophysics from Ursinus College in Collegeville, Pennsylvania. Ursinus College also awarded her an Honorary Doctorate in Science. She earned her MBA from Harvard Business School.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
The APANDEMIC Initiative
Patients Rights Advocate
The Discomfort Zone
The Discomfort Zone Twitter
The Discomfort Zone Facebook
The Discomfort Zone Instagram
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
COVID-19 has brought global attention to the fragility of the medical supply chain. For those with chronic illnesses, drug shortages and access to medication often are lifelong battles. As the coronavirus spread begins to slow, will the pandemic bring about increased awareness of the everyday struggles of patients with chronic diseases? And how can we bridge the gaps in the medical supply chain?
On this episode of the Patients Rising Podcast, we discuss new technologies that can quickly develop small-batch drugs in high demand among patients. We also look into how the pandemic has slowed the supply chain’s transportation of APIs (active pharmaceutical ingredients).
Guest:
Lili Valletta, Founder and CEO of CIEN+, and Marketing Executive at Bright Path Laboratories.
Lili Valletta is a marketing professional with over 20 years of experience, specifically in the medical and pharmaceutical industries. In 2010, Lili co-founded CIEN+, which is a Cultural Intelligence Engine designed to help companies bring cultural trends into their business designs and solutions.
In conjunction with CIEN+, where Lili continues to serve as the CEO, she is a marketing executive and strategic partner at Bright Path Laboratories. Bright Path focuses on pharmaceutical manufacturing technology for API production designed to meet drug shortages in the supply chain due to its scalable design.
For 10 years, Lili worked as the Director of Global Marketing at Johnson & Johnson, where she developed numerous diversity marketing initiatives, including the company's first multicultural marketing strategy. PRWeek named Lili one of its Top 50 Healthcare Influencers.
Lili earned her Masters in Business Administration from the University of Colorado in Colorado Springs.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest
Kate Pecora, Field Correspondent
Links:
Bright Path Laboratories
The APANDEMIC Initiative
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or positions of Patients Rising.
Medical supply chains that transport medications for chronically ill patients are at risk of shutting down due to COVID-19. And for those that have contracted the disease, getting access to clinical trials is not an easy process. For at-risk patients, accessing life-saving medications is becoming increasingly more difficult.
This week on the Patients Rising Podcast, we discuss treatment testing for coronavirus. We also discuss how the strain on the medical supply chain is impacting the routine medications relied on by thousands of chronically ill Americans. Finally, we follow up with some good patient news on Michael Goldsmith’s acceptance into a coronavirus clinical trial.
Guest:
Robert Hariri, M.D, Ph.D Chairman, Founder, and CEO of Celularity
Dr. Robert Hariri is an experienced surgeon and biomedical scientist. His research focuses on utilizing stem cells for the treatment of numerous human diseases, particularly in the areas of immuno-oncology and cell therapy. Dr. Hariri’s major medical discoveries include his findings on human placenta-derived stem cells, which include pluripotent stem cells and novel immune cells.
For nearly 14 years, Dr. Hariri served as the CEO of Celgene’s Cellular Therapeutics division, a global pharmaceutical company. In 2014, he co-founded Human Longevity, Inc., a genomics-based biotechnology company.
Currently, Dr. Hariri serves as Chairman and CEO of Celularity. The biotech company focuses on cell therapy research based on Dr. Hariri’s findings on the uses of postpartum placenta cells. This research guides Celularity’s work in immuno-oncology and hematology.
Dr. Hariri earned his B.A. in Biological Anthropology from Columbia University and his M.D. and Ph.D. from Cornell University.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Fight Like a Warrior
Patients Rising Concierge
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The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.
As coronavirus continues to spread across New York City, other virus hot spots are emerging across the country, including Detroit and New Orleans. These epicenters are seeing a surge in coronavirus patients but lack the medical supplies and staff to combat this growing crisis. But how exactly do these coronavirus epicenters come to be? And what does this mean for immunodeficient patients living in these places?
This week on the Patients Rising Podcast, we have part two of Dr. Bob’s interview with Dr. Hugh Rosen, who explains how and why these COVID-19 hotspots emerge. He also discusses experimental treatments for those who have contracted the virus.
Guest:
Hugh Rosen, M.D., Ph.D. Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.
Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions.
Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals.
Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmeceutical company focused on the research and development of molecular drugs.
Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
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Both the federal and state governments have begun turning to the private sector for solutions to supply tests, masks, and other necessary materials for fighting COVID-19. The private sector may also have potential coronavirus treatments, some of which are already in use for other diseases.
On Episode 5 of the Patients Rising Podcast, we discuss the potential treatment options for COVID-19 and the other ways in which the private sector is helping to alleviate the impact of coronavirus.
Guests:
Sara Goldberg, Clinical social worker.
Hugh Rosen, M.D., Ph.D. Professor of Molecular Medicine at The Scripps Research Institute’s California Campus and Chairman and President of ActivX Biosciences Inc.
Dr. Rosen has over 30 years of medical experience with a research focus on lymphocyte trafficking. His work at The Scripp’s Research Institute (TSRI) led to the development of ozanimod, which helps alleviate brain atrophy for patients with multiple sclerosis. Its benefits may also extend to those suffering from other autoimmune conditions.
Prior to his work at TSRI, Dr. Rosen served as the Executive Director of Immunology, Rheumatology, and Infectious Diseases at Merck Research Laboratories. He was also Chair of the Worldwide Business Strategy Team for Antibacterials and Antifungals.
Currently, Dr. Rosen serves on the Board of Directors at Regulus. In 2017, Dr. Rosen became the President and Chairman of ActivX Bioscience Inc., a biopharmaceutical company focused on the research and development of molecular drugs.
Dr. Rosen earned his M.D. from the University of Cape Town and his Ph.D. in Physiological Sciences from the University of Oxford.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
Fears of shortages of critical health supplies like hospital gowns, masks and drugs are a big topic on every media channel. Public health leaders are concerned about reports healthcare professionals are running short of the personal protective equipment they need. Government officials are working to address the supply chain in time, and this week President Trump invoked the Defense Production Act of 1950 to address predicted supply shortfalls.
On Episode 4 of the Patients Rising Podcast, we discuss how the current pandemic is putting the medical supply chain to the test and how this affects patients with chronic disease.
Guest:
Marion Mass, M.D.
Philadelphia-area pediatrician and Co-Founder and Executive VP of The Practicing Physicians of America.
Dr. Marion Mass has practiced pediatrics in Philadelphia for over 20 years. She also currently serves as a board member of the Bucks County Health Initiative and as a delegate to the Pennsylvania Medical Society. Dr. Mass has previously been on the board of Physicians Working Together, a grassroots advocacy group focused on educating patients on healthcare issues and empowering doctors to join the healthcare reform movement.
Alongside her extensive medical career, Dr. Mass has also focused on advocating for sustainability within the American healthcare system.
In 2017, Dr. Mass co-founded The Practicing Physicians of America, which gives physicians across America a voice in Washington, D.C., and seeks to protect the patient-physician relationship and support physician autonomy. Her focus is on drug shortages and maximizing patients’ value in the healthcare system.
Dr. Mass earned her M.D. from Duke University School of Medicine.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Alabama Rare
National Organization for Rare Disorders
Patients Rising Concierge
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health related resources using your zip code for local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
What does coronavirus spread across the country mean for the 10 million Americans who are immuno-deficient? While COVID-19 poses a risk for the elderly, it is also concerning for Americans suffering from underlying chronic health illnesses, such as diabetes, high blood pressure, and cardiovascular disease and those in treatment for cancer.
On this episode of the Patients Rising Podcast, we break down what the risk of coronavirus means for these patients and their caregivers, and what precautionary resources and steps should be considered.
Guest:
Paul Offit, M.D., Professor of Pediatrics and Director of Infectious Diseases at The Children’s Hospital of Philadelphia.
He has worked at the Children’s Hospital of Philadelphia for over 20 years, where he serves as the Director of Infectious Diseases and as a Professor of Pediatrics. His expertise and research focus is on vaccines, immunology, and virology.
Dr. Offit is well known for being the co-creator of the rotavirus vaccine, RotaTeq, which was approved for inclusion in the U.S. vaccination schedule in 2006. For his work on the vaccine, he received the Luigi Mastroianni and William Osler Awards from the University of Pennsylvania School of Medicine and the Charles Mérieux Award from the National Foundation for Infectious Diseases. He was also honored by Bill and Melinda Gates during the launch of their Foundation’s Living Proof Project for global health.
He has published over 160 papers in medical journals dealing with his work on the rotavirus vaccine and overall vaccine safety practices. He has also authored eight books on vaccines and how they are communicated about with the general public.
Previously, Dr. Paul Offit has been a member of the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices. He is a founding board member of the Autism Science Foundation and a board member of Every Child by Two.
Dr. Offit earned a B.S. from Tufts University in Boston, Massachusetts, and earned his M.D. from the University of Maryland, Baltimore.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Virology expert: coronavirus mortality ‘keeps coming down’
Philly vaccine pioneer: We can’t rush a coronavirus vaccine |Q&A
Where to go for the latest information:
CDC: COVID-19 What You Should Know
Coronavirus.gov
Resources from NIH
- Coronaviruses (National Institute of Allergy and Infectious Diseases)
- Coronavirus resources (National Library of Medicine)
- Coronavirus news and resources for global health researchers (Fogarty International Center)
- NIH clinical trial of remdesivir to treat COVID-19 begins (National Institute of Allergy and Infectious Diseases)
- Structural Biology Points Way to Coronavirus Vaccine (NIH Director's Blog)
- NIH Guidance on Travel and Meetings
Will my insurance cover a coronavirus test?
Health Insurance Providers Respond to Caronavirus (COVID-19)
Medicare: Is my test, item, or service covered?
Who should be tested for Coronavirus?
In addition to the advice that is continually updated by the CDC, you should check with your doctor about whether you need to be tested or when to take additional steps to protect yourself.
CDC: COVID-19 Information for Specific Groups
Are my meds in short supply?
ASHP: Current Drug Shortages
Data and studies:
GIS COVID-19 Data
Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China
Get a flu shot.
Finally, we would be remiss if we did not urge our audience to get a flu shot and ensure that vaccinations for other diseases such as measles, pneumonia, etc., are up to date.
There have been 32 million cases of influenza during the 2019-2020 flu season.
Last year nearly 1300 people contracted measles. That’s the highest number since 1992.
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org
Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
Price: one the of largest barriers to medical treatment and accessible medicine. As many patients struggle to afford the high price tags at the pharmacy, there might soon be a solution. As more biosimilars enter the commercial market, some experts are claiming that they will actually lead to lower drug costs for patients everywhere.
In the second episode of the Patients Rising Podcast, we look into the relationship between biosimilars and drug prices, break down what exactly biosimilars are, and how they are changing the healthcare landscape.
Guest:
Chad Pettit, Executive Director, Global Value Access and Policy, Amgen Biosimilars Business Unit, Thousand Oaks, California.
Chad Pettit has worked with biotechnology company Amgen for nearly 20 years. In his current role as Executive Director, Mr. Pettit serves as a liaison with biopharmaceutical companies on biosimilar policy. He also focuses on introducing biosimilars to the market and working with policy to ensure commercialization leads to cost savings in all global regions. He works at the intersection of policy and biopharmaceutical medicine to facilitate greater accessibility and has an acute understanding of the impacts biosimilars have on the global health care market. Most recently, he has worked to construct a global market access launch strategy for Amgen’s 10 biosimilars.
Previously at Amgen, Mr. Pettit served on the U.S. Biosimilars industry trade group as the Amgen Board Member.
Mr. Pettit earned a B.S. in Chemical Engineering from the University of California, Davis, and an M.B.A. from the University of California, Los Angeles.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent
Links:
Public Workshop: FDA/FTC Workshop on a Competitive Marketplace for Biosimilars
Heimerdinger Foundation
Ceres Community Project
Patient’s Rising Concierge
The Centers for Medicare & Medicaid services are about to put a rule in place that allows insurers and pharmacy benefit managers to get paid TWICE for some of your prescriptions.
This policy is called “the copay accumulator,” and it allows insurers to accept payment for a drug without applying the payment to your deductible.
In the first episode of the Patients Rising Podcast, we discuss copay accumulators, and what patients need to know about them. We also talk about a looming deadline to comment on a proposed federal rule on the topic.
How to take action
The deadline to comment on the rule regarding copay accumulators is 11:59 pm eastern standard time Monday, March 2nd, 2020.
Let your voice be heard. Send your comments directly to Seema Verma, Administrator, Centers for Medicaid and Medicare Services (CMS).
Tell her to honor your already high out of pocket costs, and to allow copay assistance to be applied to your deductible.
You can also do this directly from our website
Guest:
Carl Schmid, Executive Director, HIV + Hepatitis Policy Institute, Washington, D.C.
Carl Schmid has been a national policy and advocacy leader in the HIV community for over 20 years. He spent 16 years with The AIDS Institute, where he served as its Deputy Executive Director and led the Institute’s HIV and viral hepatitis federal policy work before the executive agencies and the Congress. In December 2019, he left The AIDS Institute to form the HIV + Hepatitis Policy Institute, which promotes quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.
Mr. Schmid helps lead the HIV and hepatitis communities’ advocacy efforts in Washington, D.C., to ensure domestic HIV and hepatitis programs, including the Ending the HIV Epidemic initiative, the Ryan White Program, CDC HIV and hepatitis prevention programs, and NIH AIDS Research, are based on sound public policy and receive full funding.
He has expertise in healthcare financing systems, including Medicaid and Medicare, and leads efforts to ensure that the Affordable Care Act meets the needs of people living with or at risk of HIV and hepatitis. As part of HIV + Hep’s work in advocating for people with HIV and hepatitis, Mr. Schmid works extensively with other patient and disease groups on collective efforts to ensure that patients, particularly those with chronic conditions, have access to quality and affordable healthcare, including prescription medications.
Mr. Schmid served as a consumer representative to the National Association of Insurance Commissioners in 2018-19. In July 2019, he was appointed to the PEPFAR Scientific Advisory Board.
He was a member of the Presidential Advisory Council on HIV/AIDS from 2007-09 and chaired its Domestic Subcommittee. In 2010, he was named by POZ magazine as one of the 100 most effective AIDS fighters and by Whitman-Walker Health as one of the 25 individuals who have played prominent roles in the fight against HIV in D.C. In 2016, he was named the Champion of the Year by the ADAP Advocacy Association.
Mr. Schmid earned a B.A. in Public Affairs and a M.B.A. in International Affairs from the George Washington University in Washington, D.C.
Hosts:
Terry Wilcox, Executive Director, Patients Rising
Dr. Robert Goldberg, “Dr. Bob”, Co-Founder and Vice President of the Center for Medicine in the Public Interest.
Kate Pecora, Field Correspondent