Healthcare Protections for Rare Diseases with Rep. Cathy McMorris Rodgers

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.