Advocacy Achievements!

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

Sen. Markey with teen advocates.

In 2012, the Cystic Fibrosis Foundation and its advocates helped to achieve real progress on behalf of those living with cystic fibrosis.

On July 9, 2012, President Obama signed into law the Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act, legislation championed by the CF Foundation and CF advocates.

  • The EXPERRT Act increases collaboration among rare disease experts and the U.S. Food and Drug Administration (FDA) to streamline the drug approval process and move vital new treatments swiftly into the hands of patients.

  • The EXPERRT Act was developed by Senator Sheldon Whitehouse (D-RI) and Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA), Tom Marino (R-PA) and Cliff Stearns (R-FL).

Congressional briefing sponsored by the Cystic Fibrosis Foundation on October 17, 2012 touted cystic fibrosis research successes and advocated for increased NIH funding.

  • The CF Foundation joined the American Thoracic Society, the National Heart, Lung, and Blood Institute and the Children’s Interstitial Lung Disease Foundation to sponsor “Advances and Opportunities in Child Lung Health,” a standing-room-only event for members of Congress and their staff.

  • The event featured a panel of experts in pediatric lung disease who highlighted successes in cystic fibrosis research and drug development. Following the panel, a CF patient shared his personal story about living with CF and how new medications to treat the disease have resulted in steadily rising life expectancy.

  • Speakers emphasized the importance of funding for the National Institutes of Health, which provides critical support for research into cystic fibrosis and other life-threatening 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 worked to preserve access to CF treatments for Medicaid beneficiaries in over half of the 50 states.

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

  • Advocacy leaders conducted nearly 500 meetings with elected officials in 2012, while Network Advocates sent more than 50,000 messages to their representatives.

  • 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.

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