Radio Rare: Recent Episodes

Rare Cancers Australia

Radio Rare is a podcast where we share the stories of those in and around the rare and less common cancer community.

Being diagnosed with a rare cancer doesn’t mean you’re alone. Radio Rare will dive into the human stories of the rare cancer experience, the innovation and the advocacy.

Addressing the feeling of isolation experienced by so many, we look to create a close community of those affected by rare and less common cancers.

Produced by Rare Cancers Australia

Two-year-old Luna’s family is fundraising for treatments only available overseas for her rare childhood cancer, neuroblastoma. They sat down with Gary Hardgrave on the 4BC Radio Drive program to share their experiences.

People living with cancer urgently need action on expanded access to precision therapies

Over the past two decades, our ability to rapidly obtain genomic information on an individual and their cancer has led to a dramatic shift in how we can diagnose, treat, monitor and prevent cancer, leading to an era of precision oncology.

With this expanded knowledge of cancer there are several promising treatments that can specifically target the drivers of an individual’s cancer, that are already under review through Australia’s health technology assessment process. Too many people living with cancer in Australia still don’t have access; and they can’t afford to wait.

In this edition of The Conversation Hour, hosted by ABC Radio Melbourne, we hear the experiences of callers who have been diagnosed with a rare cancer and their families. We also learn about the latest developments in treatment and support with guests Professor Clare Scott who is a clinician scientist, leading the ovarian and rare cancer laboratory at WEHI and Danielle Spence from the Cancer Council Victoria.

Credits

Richelle Hunt, Presenter

All rights belong to ABC Radio Melbourne.

Noel Carmona, living with thymic carcinoma, and Rare Cancers Australia CEO Christine Cockburn, sat down with ABC Radio in the Upper Hunter to talk about the cost of treatment for people diagnosed with a rare cancer, and what needs to change to make things fair for rare.

**Professor Grant McArthur

Executive Director, VCCC Alliance

Head of the Molecular Oncology Lab, Peter Mac**

Thinking big: how we can make a difference for patients

In this episode, RCA Chief Executive Richard Vines speaks to Professor Grant McArthur about:

· The challenges of personalising cancer treatment

· How the moon landing sparked a career in medicine

· Why he chose to specialise in cancer, and melanoma

· What gets him out of bed in the morning, and what drives him

· The vision of the VCCC, and how it came about

· Why he moved from a full-time research and clinical role to a leadership position

· The sensitivities around prescribing medications that are not PBS funded

· The gaps between published evidence, TGA approval and PBS listing

· Ideas on how to speed up patient access to life-extending and life-saving treatment

· The challenges and opportunities of developing combination treatments

· How we can continue to improve cancer outcomes in the next 10 years

More about Professor Grant McArthurGrant is the Executive Director of the VCCC Alliance, a powerful partnership of 10 leading research, academic and clinical institutions, working together to fundamentally reshape the way we tackle cancer.Grant is also Head of the Molecular Oncology Lab at the Peter MacCallum Cancer Centre, and a highly cited melanoma researcher.

Emeritus Professor Ian Frazer University of Queensland

The future of cancer and medical research

In this episode, RCA Chief Executive Richard Vines speaks to Professor Ian Frazer about:

Inventing the technology behind the world’s first cancer vaccine
Vaccine hesitancy, and the potential of other vaccines for cancer
What makes the Translational Research Institute so special
The interface between clinicians, scientists and patients in medical research
Our expanding understanding of cancer and targeted treatment
The experience of being Australian of The Year, and what he’s working on now
How the Medical Research Future Fund works
The alleged brain drain of medical researchers from Australia
The need to better embed medical research into the health system
How he sees medical research benefiting patients in 10 years’ time

More about Emeritus Professor Ian Frazer Ian and his colleague co-invented the technology behind the world’s first cervical cancer vaccine.

He is the founding CEO of the Translational Research Institute in Brisbane, heads a biotechnology company working on new vaccine technologies, and chairs the advisory board of the Medical Research Future Fund.

Emeritus Professor Ian Frazer University of Queensland

The future of cancer and medical research

In this episode, RCA Chief Executive Richard Vines speaks to Professor Ian Frazer about:

Inventing the technology behind the world’s first cancer vaccine
Vaccine hesitancy, and the potential of other vaccines for cancer
What makes the Translational Research Institute so special
The interface between clinicians, scientists and patients in medical research
Our expanding understanding of cancer and targeted treatment
The experience of being Australian of The Year, and what he’s working on now
How the Medical Research Future Fund works
The alleged brain drain of medical researchers from Australia
The need to better embed medical research into the health system
How he sees medical research benefiting patients in 10 years’ time

More about Emeritus Professor Ian Frazer Ian and his colleague co-invented the technology behind the world’s first cervical cancer vaccine.

He is the founding CEO of the Translational Research Institute in Brisbane, heads a biotechnology company working on new vaccine technologies, and chairs the advisory board of the Medical Research Future Fund.

**Ann Single

Patient Voice Initiative**

Improving the patient voice in the Australian health system

In this episode, RCA Chief Executive Richard Vines speaks to Ann Single about:

The limitations of Australia’s Health Technology Assessment (HTA) process
How and why the HTA process needs to be framed from a patient perspective
Australia’s perception of ‘value’ as it applies to health versus other areas like defense
The need to embrace uncertainty and speed up patient access to cancer treatments
Why she finds HTA fascinating and why she’s optimistic about the HTA Review
What she’s learned from 20 years of working with patients
Improving the patient voice in the Australian health system
Why she moved from journalism to science communication

More about Ann Single

Ann is Coordinator of the Patient Voice Initiative, an association that works towards improving the patient voice in the Australian health system. She has more than 20 years of experience in developing policy and practice in patient involvement in health technology assessment, or HTA. Ann is Chair of the HTAi Interest Group for Patient and Citizen Involvement in HTA and has been selected as a consumer representative on the Australian Government’s HTA review.

Professor John Zalcberg

Head, Cancer Research Program, School of Public Health, Monash University

Our responsibility to patients who can’t afford to wait

In this episode, RCA Chief Executive Richard Vines speaks to Professor John Zalcberg about:

How he was destinated to be in medicine since childhood
Why he chose to specialise in cancer care
The challenges around making clinical trials more ‘ambitious’
How wealth impacts your access to cancer drugs in Australia
How the cost of drugs to the community trumps urgent provision to patients
The challenges of working within the current health system
Ideas to help speed up critical access to treatment
The untapped potential of patient data

More about Professor John Zalcberg

John was Director of Cancer Medicine at the Peter MacCallum Cancer Centre for 17 years, as well as their Chief Medical Officer for six. He is highly regarded both nationally and internationally as a leader in his field, is a mentor to some of the most accomplished clinicians in Australia, and is a well-known advocate for patient access to new cancer drugs.

thoughtleaderseries

Professor John Zalcberg

Head, Cancer Research Program, School of Public Health, Monash University

Our responsibility to patients who can’t afford to wait

In this episode, RCA Chief Executive Richard Vines speaks to Professor John Zalcberg about:

How he was destinated to be in medicine since childhood
Why he chose to specialise in cancer care
The challenges around making clinical trials more ‘ambitious’
How wealth impacts your access to cancer drugs in Australia
How the cost of drugs to the community trumps urgent provision to patients
The challenges of working within the current health system
Ideas to help speed up critical access to treatment
The untapped potential of patient data

More about Professor John Zalcberg

John was Director of Cancer Medicine at the Peter MacCallum Cancer Centre for 17 years, as well as their Chief Medical Officer for six. He is highly regarded both nationally and internationally as a leader in his field, is a mentor to some of the most accomplished clinicians in Australia, and is a well-known advocate for patient access to new cancer drugs.

thoughtleaderseries

**Carlo Montagner

Co-Founder and CEO, Specialised Therapeutics Australia**

Risks and rewards: getting new medications into the hands of patients

In this episode, RCA Chief Executive Richard Vines speaks to Carlo Montagner about:

His move from psychology to pharma
Building a strong foundation in the industry
Founding STA with his wife
The barriers to, and costs of, supplying drugs in Australia
How the process can be improved and simplified
Accessing drugs not listed on the PBS
The responsibility of clinicians around reimbursement
The challenges and opportunities of Health Technology Assessment (HTA)
Why STA is expanding into Asia
His family’s personal experience with rare cancer
Why he is passionate about bringing rare cancer drugs to Australia
His vision for the future

More about Carlo Montagner: Specialised Therapeutics Australia (STA) is a pharmaceutical company that has been instrumental in helping Australians living with rare cancer to access new medications that would otherwise be out of reach. Before co-founding STA, Carlo held senior roles at some of the world’s largest pharmaceutical companies. #thoughtleaderseries

Professor Shelley Dolan Chief Executive, Peter MacCallum Cancer Centre From Registered Nurse to Chief Executive In this episode, RCA Chief Executive Richard Vines speaks to Professor Shelley Dolan about:

Signing up as a nurse dressed in full punk rock gear, complete with pink hair
Her love of intensive care and why she moved to cancer care
Moving up the ranks from nurse to CEO
What she’s learned, and continues to learn, from patients and their families
Making your voice heard as a patient
The challenges of being a nurse – and a woman – in a patriarchal system
How Peter Mac works, access to drugs, and why it’s such a special place
How we can improve access to clinical trials in rural and regional areas
Her vision for the future

More about Professor Shelley Dolan Shelley began her career as a registered nurse in the UK, rising through the ranks to become Deputy Chief Executive at one of the largest hospitals in Europe and also at Europe’s largest comprehensive cancer centre.

She has over 30 years of experience in healthcare, specialising in critical care and cancer nursing.

In the latest episode of the Radio Rare podcast, Clinical Nurse Specialists Julie and Giovanna from Cancer Council Victoria share how the turbulence of the last 18 months has affected people living with cancer, and what patients are most concerned about at the moment.

In the latest episode of the Radio Rare podcast, we chat to Rupert Saunders from headspace for an insight into what many young people are feeling in the wake of 18 months of constant changes and challenges.He also provides some tips and strategies for people of all ages who may be struggling to deal with the ongoing uncertainty.

We are living in extraordinary times, and uncertainty drives us to seek answers. It’s easy to get swept away in a sea of conflicting information.In the latest episode of Radio Rare in our COVID Connect mini-series, we go back to basics with Professor Rhonda Stuart from Monash Health. Drawing on her extensive career in public health, she explains how the COVID-19 virus operates, how the vaccines work, and how both of these things can effect people living with cancer.

The impact of COVID-19 on our healthcare system has and continues to be significant.In our latest episode of Radio Rare in our COVID Connect mini-series, we take you into the hospital world and explore the NSW and Victorian experiences through the lens of two experts – Oncologist at Royal North Shore Hospital, Prof Nick Pavlakis and Director of Prevention and Wellbeing at the Peter MacCallum Cancer Centre, Geraldine McDonald.

It was just before Melbourne’s second lockdown (lasting 111 days) that Maddie was diagnosed with thymoma.In our first Radio Rare episode in our COVID Connect mini-series, she shares how she adjusted to her new normal – facing not just a cancer diagnosis, but the added uncertainty of a rare cancer diagnosis in a global pandemic.

When many people think of childhood cancers, images of babies and toddlers often appear. But what about teenagers living with a rare cancer?This is a very different picture, and one that is often overlooked as Tamlin explains in our latest episode of Radio Rare.

Even when you are a doctor, finding out your son has a rare cancer can be difficult to understand.In this special #RareCancersAwarenessDay edition of Radio Rare, our very own Dr Emily shares a very personal experience with her husband and oncologist by her side.

It's an exciting time in cancer care with advances in medicine allowing us to look more closely at each person’s cancer, and to identify more effective treatments for each patient’s case.In the latest episode of Radio Rare we explore this and what this means for patients with our very own Dr Amanda Ruth, Head of Policy and Public Affairs at Rare Cancers Australia and Executive Director of the National Oncology Alliance.

Benchtop to bedside is a commonly used term when it comes to research.But what does it mean in the reality of cancer treatments, and what does it look like when it comes to developing new medicines for cancer patients?We explore this in our latest episode of Radio Rare featuring Dr Jay Perry, Associate Research Fellow at the Illawarra Health and Medical Research Institute.

In this weeks episode, we sit down and talk with Cindy Bakos and Cassandra Howcroft and explore why it’s so important for children living with a cancer diagnosis to stay active, and how parents can make it fun, together. Cindy and Cass are two mums at the front of the exercise as medicine movement, with their organisation, Little Big Steps, making paediatric oncology wards just a little more active!Find out how on this episode of Radio Rare

Appearing this week on Episode 3 of Radio Rare: Exercise Physiologist, Tracey Duggan, who specialises in working with cancer patients on their treatment journey.Join us alongside Dr Emily as we explore how fitness helps lower your cancer fatigue, and how you can find the right place to get started today.

In episode one, we heard from Kate Vines on what life has been like living with a rare cancer. In episode two, we want to follow that with Dr. Damien Kee from the Austin Hospital and talk about what specifically makes rare and less common cancers so different from common types of cancer.So join us, as Dr. Kee takes us down the rabbit hole that is clinical research and study, available wherever you get your podcasts.You can learn more about ARC portal here: https://www.arcportal.org.au/ and visit the CART-Wheel website here: https://www.cart-wheel.org/

Season two of Radio Rare is here and for episode one, we chat to Kate Vines, one of the founders of Rare Cancers Australia, talking about her life with a rare cancer and how technology has opened new treatment options. We also have a special guest, Dr Damien Kee, a medical oncologist based at the Austin hospital, to talk about rare cancers from a researchers perspective.So plug in your headphones, get comfy, and join us for the Radio Rare Season Two premiere!

Our guest this week, making his debut appearance, is Mike George. One of a small number of Australias, who has undergone a laryngectomy.Mike talks us through the journey of his diagnosis, and advocacy work. As you'll hear not having a voice box hasn't slowed Mike down, hear him tell his own story.

Palliative Care. Two words that often cause so much discomfort and fear, but what do we really know about it? Join Dr. Emily and Sidekick James, as they dive into the world of Palliative Care.

CAR-T: Easy to spell but hard to explain. So, we took a shot at breaking it down.This week's Rare Bites reaches out to explore the world of CAR-T Therapy, how it works and what it does. We even find out how it feels. Tune in each week to Rare Bites for more bite-size info in the cancer space.

There are so many things that go into getting Medicines to the public, and so much of it is confusing. So we thought we'd break it down. #RareBites

There are so many things we wish we could un-say and take back, but sadly, it doesn't work that way.So here's the next best thing, 3 Golden Rules to help you say the right thing to someone going on a cancer journey.We've also included a few things we've heard or have been said to us at RCA, so you can see how much impact words really have.

Rare Bites is our new short-form podcast series where we take a look at complicated topics and questions in the cancer space and bring you some bite-sized answers.In episode one, we look at Sex, Intimacy, and where they fit into the cancer experience.Do people with cancer have sex? How can you be intimate while living with cancer? And what about masturbation? These are important questions that need to be answered, and our team is here to help.This episode features Dr. Emily Isham and James Mathews of Rare Cancers Australia, with a special guest, Ross Jacobs, of Canteen Australia.You can find the Cancer Council PDF here.

For our final episode of Radio Rare, we chat to Rare Cancers Australia (RCA), CEO, Richard Vines as he pulls back the curtain and talks about how RCA came to be and why the need is so great.All clips in this episode can be found in Season One of Radio Rare.

Ben shares the heartfelt cancer journey of his family when his wife Donna was first diagnosed with a rare cancer. He recounts from the time of the first biopsy, through the ups and downs that no-one sees coming.Motor Events 2020Motor Events has Australia’s most diverse competitive grassroots racing events that YOU can be involved in! No huge expenses to get started, no confusing rules or restrictions. Just get a bunch of mates, build your race car and get some safety gear. Find more information here: https://www.motorevents.com.au/Today's episode is sponsored by Care Connected

Hosam is a father of 3 and a dentist by career. In 2009, he was diagnosed with a rare type of brain cancer and in this episode of Radio Rare, he shares the strange experience that he had when he was first diagnosed and describes the highs and lows of his rare cancer journey.Today's episode is sponsored by Care Connected

As precision medicine looks to provide new hope to cancer patients, we speak to Professor Sean Grimmond from the Melbourne University Centre of Cancer Research. Professor Grimmond discusses how far Genomic sequencing has come and how much further it will go.Today's episode is sponsored by Care Connected

To round out Sarcoma Awareness Month we speak to Ewing Sarcoma survivor and member of the ANZSA consumer advisory panel, Julijana Todorovic. Julijana was diagnosed at the age of 22 and dives into how a cancer experience can feel as though you are at a crossroads.

From working in the mines in Queensland to having a life-changing CT scan which revealed a lump on the brain. Luke Bourne shares his 5-year experience of living with an incredibly rare cancer known as Alveolar Soft Part Sarcoma.Lifeline: https://www.lifeline.org.au/Beyond Blue: https://www.beyondblue.org.au/

Dr Denise Caruso, CEO of the Australia and New Zealand Sarcoma Association, ANZSA, chats with Dr Emily Isham about sarcomas, clinical trials for rare cancers, and how to educate without inducing paranoia.

20% of childhood cancers in Australia are Sarcoma. Tania Rice-Brading, co-founder of the Cooper Rice-Brading foundation shares why she is passionately striving for more sarcoma research and we also hear the emotional story of who the Cooper behind the Cooper Rice-Brading Foundation is.A note that the conversation contains stories of childhood cancer which may be upsetting for some listeners. Please reach out to your support network if you are affected or call Lifeline on 13 11 14.

Dr Emily Isham talks with Judi as she shares her remarkable cancer experience from the beginning of her diagnosis, what it’s like to live with a rare cancer, her close encounter with mercury poisoning, and how she has picked up the slack when it comes to finding support.

Patient advocate and founder of the Patient Voice Initiative, Jessica Bean, discusses some topics that are central to many rare diseases, not just rare cancers, clinical trials, compassionate access, and patient advocacy.

It is common to think that a cancer journey ends once a person goes into remission and it can feel as though the parade has passed by. Professor Bogda Koczwara from Flinders University talks about the true meaning of Cancer Survivorship and how Australia’s healthcare system is dealing with this phase of the cancer journey.

Professor David Thomas from the Garvan Institute of Medical Research provides a glimpse of what the future of cancer research could look like. Professor Thomas gives us an insight into the man behind the white coat, how patient experiences shape his daily work and how molecular medicine is changing things for patients of today and tomorrow.

Dr Richard Tothill from the University of Melbourne gives us a glimpse into the future of cancer treatments, particularly in CUP and NETS. His research in genomics is bringing cutting edge concepts to reality and we are on the cusp of a seismic shift. For this Genomics Group leader, it's just another day in the lab.

Christine Cockburn, Head of Support and Operations here at Rare Cancers Australia shares the emotional story of caring for her mum during her cancer journey along with the roller coaster that was her own cancer journey. Christine provides insight from not only a carers perspective but a patient perspective as well.

Adam Lynch, father of two children and founder of BEAT Bladder Cancer Australia shares the journey of his late wife Anna as she tried to overcome Bladder Cancer. Adam dives into the inspiration of founding BEAT Bladder Cancer Australia.

Scientist, advocate, mum and caregiver Dr Rebecca Kelly sits down with us to talk about the highs and lows of caring for her to 8-year-old son Ryan who was diagnosed with leukemia. Dr Kelly dives into the hurdles of a new diagnosis and being able to advocate for a sick child and keep everything else moving along.

Clinical psychologist of more then 30 years Bruce Schubert shares his observations and thoughts around the current state of physical distancing and how some are more suited to it than others. Bruce and Emily chat about what cancer patients have known for some time, that life doesn't always go the way you expected it to.

Often the glue that holds it all together when someone is diagnosed, is the carer. They don't sign up for the role and like the loved ones they care for - they don’t expect it. Simone Cloake tells her story of caring for her Dad after being cancer free for 21 years and diagnosed with a rare cancer called Cholangiocarcinoma.

Carers play a crucial role in a cancer patients journey often being the anchor to everyday life. In episode 3 of Radio Rare Mohab Kamel very kindly and honestly shares the experience of his and his wife's cancer journey. Mohab also shares how he coped through the financial and emotional struggles.

Radio Rare episode two! Paul Cross joins us for a passionate discussion about the approval process of new therapies. Paul is a publisher and the founder of the Biopharma Dispatch. We cover a wide range of topics from the PBS (Pharmaceutical Benefit Scheme) and HTA (Health Technology Assessment), to Australia's role in the global market and Paul's views on investing in new therapies to give people more time.

Welcome to the first episode of season 1! Dr Emily Isham sits down with Rare Cancers Australia CEO Richard Vines. Richard discusses his role as a carer over the past 30 years, the NFP industry and how RCA was born.

Rare Cancer patients quite simply don't fit into the current health system. Radio Rare is a podcast that looks deeper into the issues that hold rare cancers back from having parity with the access, treatment pathways, timely diagnosis and overall survival common cancers experience. We talk to patients, their families, experts and game-changers on the current state of Rare.