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The Patients Rising Podcast

Every week, Patients Rising Podcast will dig deep into the week’s healthcare policy issues that impact you.

Your Hosts





Terry Wilcox

Host





Kate Pecora

Corespondent





Robert M. Goldberg, PhD

Host

About the Patients Rising Podcast

For years, Patients Rising has given patients the information they need about health policy developments from Washington, all while giving them a voice in the nation’s capital.

Now we are bringing the news to you in a format that’s easy to take with you wherever you go. Every week, Patients Rising Podcast will dig deep into the week’s healthcare policy issues that impact you. 

Each episode features the latest news, in-depth discussions with policymakers and patient advocates, and updates from patient correspondents around the country.

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Latest Episodes

Episode 40: fighting pancreatic cancer

Patients Rising Podcast

Ep 40 Show Notes

Title: Fighting Pancreatic Cancer 

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 

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.

Episode 39: How Precision Medicine Can Help YOu

Patients Rising Podcast

Ep 39: How Precision Medicine Can Help You

Show Notes

Title: How Precision Medicine Can Help You

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.

Episode 38: Patient Victory for price transparency

Patients Rising Podcast

Ep 38: 

Show Notes

Title: Patient Victory for Price Transparency

Power to patients! A new price transparency rule from 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. And 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.

Episode 37: How pbms profit at your expense

Patients Rising Podcast

Ep 37: How PBMs Profit at Your Expense

Show Notes

Title: How PBMs Profit at Your Expense

Summary

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.

 

Episode 36: Your access to gene therapies

Patients Rising Podcast

Ep 36: Your Access to Gene Therapies

Show Notes

Title: Your Access to Gene Therapies 

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.



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