Piper Beatty, a 35-year-old with cystic fibrosis and two-time double-lung transplant recipient, served as a panelist at a public meeting today hosted by the Food and Drug Administration (
Piper works at the Cystic Fibrosis Foundation on developing community partnerships and recently participated in Real Talk Live, a video series about living with CF. At the FDA meeting, Piper discussed managing her condition and the needs of the CF community.
The Cystic Fibrosis Foundation recently announced several new initiatives to improve lung transplantation for people with CF. These plans include a $15 million, multiyear investment in developing a consortium of academic medical centers and laboratories dedicated to improving outcomes after lung transplantation. The consortium will focus on improving delivery of lung transplant clinical care, increasing the understanding of
The Foundation is also creating programs to better support people with CF and their families as they consider lung transplantation. For example, a mentoring program will connect individuals who are preparing to undergo transplantation with others who have experienced the transplantation process.
Additionally, through a collaboration with ORGANIZE, a nonprofit dedicated to making systems change in the organ donation space, the Foundation will focus on increasing the number of organ donors and decreasing lung transplantation waiting time.
According to the CF Patient Registry, approximately 200 people with CF had a lung transplant in 2014. During that same year, 182 people were accepted and on the waiting list for a lung, kidney, heart or liver transplant.