Teen volunteers from 27 states across the country gathered in Washington, D.C., on June 26 to advocate for friends and loved ones who have cystic fibrosis during the Cystic Fibrosis Foundation's sixth annual Teen Advocacy Day.
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CF Foundation President and CEO Robert J. Beall, Ph.D. testified today before the House of Representatives' Energy and Commerce Committee at a hearing entitled, “21st Century Cures: Incorporating the Patient Perspective.”
Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.
In 2014, the Cystic Fibrosis Foundation and advocates across the country played a vital role in shaping issues important to the CF community. CF advocates attended more than 500 meetings with elected officials and sent them more than 60,000 messages advocating on behalf of people with CF.
With promising new discoveries in the pipeline and advancements we've made in the search for new treatments and a cure, we must continue our work to protect access to adequate, affordable insurance that preserves access to high-quality cystic fibrosis care; and support progress toward new therapies and a cure.
Robust funding for the National Institutes of Health helps ensure innovation in basic research and a full pipeline of cystic fibrosis therapies. A well-resourced U.S. Food and Drug Administration helps advance therapies that are safe and effective.
In a complex and rapidly changing health care system, we support policies that promote adequate, affordable health coverage so people living with cystic fibrosis can receive the high-quality, specialized care they need to live longer, healthier lives.