Patients Rising Podcast

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: [email protected]

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. 

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: [email protected]

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

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: [email protected]

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

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: [email protected]

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

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: [email protected]

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

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: [email protected]

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

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: [email protected]

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

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: [email protected]

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 

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: [email protected]

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

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: [email protected]

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.