Take Action: Protect Those Waiting for Lung Transplants — Willem Wery & Carmel Aronson, MSW (Video)

On May 7, 2026, the national scoring system used to determine who receives donated lungs changed. This change occurred despite unanimous opposition from lung transplant experts, and before lung transplant candidates, recipients, and caregivers were able to provide feedback. The change threatens to increase the number of people who do not survive the wait for transplant, and could make matching even more difficult for people who are very short, have type O blood, high antibodies, or who live on the West coast. Luckily, an opportunity to give feedback on this policy change has just opened up. Between now and July 3rd, individuals can submit a comment to share their thoughts on this change to the lung transplant scoring system. At 10:52 in the podcast you will receive very specific instructions for taking action. The lung transplant community needs your help to reverse this change. Visit www.lungtransplantfoundation.org/act to add your public comment. CFRI would like to thank Willem Wery, an adult with CF who received a double lung transplant, and Carmel Aronson, MSW, volunteer with the Lung Transplant Foundation, for shedding light on this important issue. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2026 has been provided to date by Viatris and Vertex Pharmaceuticals.