On February 27, more than 200 advocates rallied together in Washington, D.C., to represent the cystic fibrosis community during the 14th Annual Cystic Fibrosis Foundation March on the Hill. Advocates shared their compelling personal stories with lawmakers, educating them about the needs of people living with CF. On the same day, during the Foundation's annual Online Day of Action, advocates from around the country sent virtual messages to their lawmakers, amplifying the community's voice on the Hill.
In their nearly 300 meetings with members of Congress, attendees of March on the Hill advocated for the following:
- Affordable, adequate health coverage that remains critical for people with CF to access the highly specialized care they need to live longer, healthier lives.
- Support of robust, reliable funding for the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA). Advocates asked for $44.7 billion for the NIH to help ensure innovation in basic research that has laid the groundwork for a full pipeline of CF therapies. Additionally, advocates asked for $3.29 billion in funding for the FDA.
Additionally, advocates asked lawmakers for their help sustaining a healthy pipeline of antibiotics. By using their personal stories, advocates spoke about the vital need for more antibiotics as many people living with cystic fibrosis battle difficult-to-treat infections for which there are no effective treatments. Advocates shared information about the CF Foundation's Infection Research Initiative and the 10 programs the CF Foundation is funding to develop treatments for CF-related infections. They then urged Congress to do its part to help tackle the need for new antibiotics.
“We are proud to be one of the only patient organizations advocating for the development of new antibiotics. We know many people living with cystic fibrosis face life-threatening infections to which there are no treatments available. Research alone cannot solve this problem - we need Congress to help support a sustainable pipeline of antibiotics for all who face an infection,” said Mary Dwight, senior vice president and chief policy and advocacy officer of the CF Foundation.
On the same day, during the Foundation's Online Day of Action, led by Tré La Rosa and Katie Fielding, both adults with cystic fibrosis and advocates from around the country sent messages to their lawmakers, echoing the community's voice on the Hill.
Here are some highlights from the day: