37 min

Healthcare Protections for Rare Diseases with Rep. Cathy McMorris Rodgers Patients Rising Podcast

    • Medicine

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: 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, 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: 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, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.

37 min