Advocacy Achievements!

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

In 2011, the Cystic Fibrosis Foundation and its advocates helped to achieve real progress on behalf of those living with cystic fibrosis.

The Cystic Fibrosis Foundation and CF advocates helped build support for the new National Institutes of Health (NIH) National Center for Advancing Translational Sciences (NCATS).

• The new NIH center will be dedicated to translating basic research discoveries into new treatments and cures for diseases like cystic fibrosis.
  
  
• The CF Foundation hosted a Congressional briefing with NIH Director Francis S. Collins, Ph.D., and members of the U.S. House of Representatives to discuss how the Foundation’s successful drug development model can be applied to NIH programs like NCATS.

The CF Foundation garnered support for increased funding of key federal agencies that oversee important research and drug development for people with CF. 

• The Food and Drug Administration (FDA) won increased funding, which will help ensure new CF therapies are reviewed swiftly and effectively.
  
  
• The National Institutes of Health also secured a budget increase, providing the necessary resources to support programs that accelerate the development and testing of new treatments for rare diseases.

The CF Foundation worked to protect patients’ access to care and vital CF therapies throughout the country.

• The CF Foundation and advocates worked to protect state Medicaid programs, ensuring access to health benefits and coverage for nearly half of all children with CF and more than one third of all adults with CF.
  
  
• Advocates helped restore funding for 20 state-level adult CF care programs that may have otherwise been eliminated and preserved access to CF treatments on over 20 state Medicaid preferred drug lists (PDLs).
  
  
• The CF Foundation articulated the need for specialized care and health coverage for people with cystic fibrosis.

Thousands of people made their voices heard in Congress and in state capitols throughout the country.

• Volunteers held over 350 meetings with members of Congress in Washington, D.C. to discuss issues affecting people with cystic fibrosis.
  
  
• In the fall, CF advocates sent nearly 32,000 emails and more than 500 “retweets” of the CF Foundation’s Twitter messages to Congress’ Deficit Reduction Supercommittee in just two weeks, highlighting the importance of Medicaid coverage for CF care.
  
  
• CF Foundation advocates representing 25 states participated in the Foundation’s annual March on the Hill event in Washington, D.C. Volunteers held more than 140 meetings with Members of Congress and their staff to discuss important CF issues.
  
  
• Forty-seven teens from 20 states joined their peers in Washington, D.C. for the CF Foundation’s third annual Teen Advocacy Day in June 2011. Teens ages 12 to 18 met with their elected officials on behalf of friends and relatives with cystic fibrosis.

Watch National Advocacy Co-chairs, Amy & Peter Barry, and learn how easy it is to be an advocate for CF.