Advocacy Achievements!

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

Our 2010 successes

Sen. Markey and Teen Advocates
The CF Foundation and its Advocates Successfully Shepherded Clinical Trials Act into Law
  • The CF Foundation and its Advocates guided the passage of the “Improving Access to Clinical Trials Act” into law. This will allow people with CF to participate in important clinical research without losing their public health coverage.

  • The Cystic Fibrosis Foundation identified this significant barrier to clinical research and worked with Congress to write this common-sense legislation.

  • The Foundation and Advocates garnered 141 cosponsors of the House version of the bill, and 21 cosponsors for the Senate version. Learn more.

The CF Foundation Helped Ensure that Programs which People with CF Rely on for their Care are Kept Active and Well-Funded

  • Due to the direct intervention of the Foundation and its Advocates, multiple states have restored funding for state-level CF care programs, helped ensure access to needed health benefits, and protected the ability of CF patients to receive the therapies they need. A sampling of the states that have already promised to protect vital resources for people with CF include:
    • Florida
    • Louisiana
    • Missouri
    • North Carolina
    • New York
    • Wisconsin

  • The CF Foundation also successfully fought to ensure that newly available medications and delivery systems that will help those with CF would be covered by Medicaid nationwide

The CF Foundation Successfully Fought for Health Care Reform to Contain Provisions to Help People with CF

  • While not taking a position on any particular bill, the CF Foundation encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis. The final bill contained numerous key provisions to benefit those with CF:
    • Guaranteed coverage for those with pre-existing conditions
    • Ending the insurer practice of establishing annual and lifetime spending caps
    • Expanded Medicaid coverage
    • Limits on out-of-pocket health care expenses
    • Insurance coverage for dependents on parental health plans until age 26
    • Assistance to help employers provide health insurance

  • Learn more.

The CF Foundation Brought NIH Director Francis Collins to Tell the Success Story of CF Drug Discovery to the United States Senate

  • The CF Foundation hosted a briefing in the United States Senate with National Institutes of Health (NIH) Director Francis S. Collins, M.D., Ph.D. Dr. Collins highlighted the Cystic Fibrosis Foundation’s success at bridging the gap between basic science discoveries and creating new patient therapies. Learn more.

CF Congressional Champions Share Their Dreams for CF

  • Congressional CF Caucus Co-Chairs Rep. Ed Markey (D-MA) and Cliff Stearns (R-FL) joined CF families to share their dreams to find a cure for CF.

Thousands of Advocates Made their Voices Heard in Congress on Behalf of People with CF

  • In the first 9 months of 2010, CF Advocates sent over 8,000 messages and letters, made many thousands of phone calls, and held over 250 meetings with Members of Congress.

  • In March, 35 CF Advocates from across the country met with members of Congress and Congressional staff as part of the Foundation’s annual March on the Hill event. These Advocates shared their personal stories and asked legislators to support the Foundation’s public policy agenda. Learn more.

  • In June, the CF Foundation brought 24 teens, ranging in ages from 12 to 17, and their families from around the country to meet with members of Congress. These teens explained how CF affects their loved ones and how Senators and Representatives can play a crucial role in helping the CF Foundation control and ultimately cure the disease (teens and families pictured above with Congressional CF Caucus Co-Chair Rep. Ed Markey (D-MA)). Learn more.

Our 2009 successes

  • The CF Foundation succeeded in its campaign to have laws enacted in all 50 states and the District of Columbia to require that all newborns be automatically screened for cystic fibrosis. Learn more.

  • In a Senate Appropriations Committee hearing on biomedical research, Senator Richard Shelby (R-AL) and Acting NIH Director Raynard Kington, M.D., Ph.D., acknowledged the CF Foundation as a leader in rare disease research. Learn more.

  • In New York, the CF Foundation and CF Advocates restored funding to the state’s CF Adult care program after it had been targeted for elimination.

  • In Idaho, the CF Foundation and CF Advocates persuaded the Legislature to protect the Adult CF program from a bill that would have removed funding for the program.

  • On April 6th, 2009, the CF Foundation sent a letter to President Obama, the Administration’s health officials, congressional committees with jurisdiction over health care, and congressional leadership, urging them to recognize the unique health care needs of people with CF as health care reform becomes a priority in Washington. The letter articulates the need for CF patients to have access to high quality, comprehensive and coordinated health care and to benefit from advancements in CF therapies.

Our 2008 successes

  • The CF Foundation helped pass the Newborn Screening Saves Lives Act. The Act provides help to the states to expand or establish newborn screening programs. Learn more about newborn screening.

  • The CF Foundation helped pass legislation to support CF research. The U.S. House of Representatives passed legislation to reauthorize the Small Business Innovation Research (SBIR) program, which provides grants to small biotechnology and pharmaceutical companies. The legislation includes a provision requiring that special attention be given to research for rare diseases, like CF, when SBIR grants are awarded. Robert J. Beall, Ph.D., president and CEO of the CF Foundation testified before Congress to ensure passage.

  • The CF Foundation helped pass a CF Awareness Resolution in both chambers of Congress, which officially recognizes May as National CF Awareness Month. By passing the Resolution, Congress signaled its commitment to finding a cure or control for CF.

  • Nearly 50 CF Advocates across the country participated in the first ever Summer Advocacy Campaign. These Advocates met with their members of Congress to tell them, face-to-face, what it’s like to have CF. Advocates asked their Members of Congress to support the CF Foundation’s public policy agenda.

  • The CF Foundation increased the number of states screening newborns for CF to 45. At the close of 2008, 45 states, plus the District of Columbia, were screening for CF – up from 36 in 2007.
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