Advocacy Achievements

Together, we can speak out, get involved, and inspire action to affect public policy and make an impact on CF

In 2013, the Cystic Fibrosis Foundation and its advocates helped to achieve real progress on behalf of those living with cystic fibrosis.

Sen. Markey and Teen Advocates
The Cystic Fibrosis Foundation enjoyed a number of public policy successes in 2013. CF advocates held over 400 meetings with elected officials and sent more than 55,000 messages to legislators. This outreach spurred a number of federal and state accomplishments, including prompting 37 members of Congress to send letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits. For more information visit our briefings and testimonies page (add link).  

CF Advocate Provides Remarks about Kalydeco, FDA Review at Congressional Briefing
On July 24, 2013, the Cystic Fibrosis Foundation participated in a Congressional briefing hosted by Friends of Cancer Research to educate members of the U.S. Senate about new processes developed by the FDA to speed the approval of breakthrough therapies.

William Elder, Jr.

William Elder, Jr., (right) discusses new breakthrough therapies for cystic fibrosis.

William Elder, Jr., a medical student with cystic fibrosis, spoke at the event about the health gains he has experienced since starting Kalydeco, the first oral drug that treats the underlying cause of CF in a small group of people with the disease. He also stressed the importance of keeping the FDA fully funded, telling Senators and their staff about the promise of the new process used by the Food and Drug Administration (FDA) to speed the development of breakthrough therapies, including those for cystic fibrosis.

Elder was joined by Sen. Michael Bennet (D-Colo.), who provided the keynote address at the briefing, Jeffrey Leiden, the chief executive officer of Vertex Pharmaceuticals, Janet Woodcock, director of the FDA’s Center for Drug Evaluation and Research and other representatives from the medical community.

Thanks to dedicated advocacy by the CF community, in 2013 the Congressional Cystic Fibrosis Caucus added 23 new members of the House of Representatives, and there are now over 150 bi-partisan members of this important organization. The CF Caucus raises awareness of cystic fibrosis, supports CF research through the National Institutes of Health (NIH) and other federal research agencies, and advances public policies that address access to quality, affordable CF care.

The CF Advocates made sure the voices of those with CF were heard in Congress and state capitols throughout the country.

  • Network advocates were hard at work last year sending more than 55,000 messages to members of Congress urging them to fund agencies critical to helping people with CF.

  • 2013 was a record breaking year for advocacy at the Cystic Fibrosis Foundation. Between March on the Hill and Teen Advocacy Day more than 100 advocates travelled to DC to meet with their federal legislators to discuss ways to support people with CF. Throughout the year our advocates met with more than 380 members of Congress.

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Updated: 9/5/2014