Feb. 24, 2023

Healthcare Protections for Rare Diseases with Rep. Cathy McMorris Rodgers

Healthcare Protections for Rare Diseases with Rep. Cathy McMorris Rodgers
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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. 


Terry Wilcox, CEO, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest


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


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 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.