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.”
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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.
Legislation introduced today will help more people with cystic fibrosis, and other rare diseases, participate in clinical trials without fear of losing important benefits or health coverage. The bill is sponsored by a bipartisan group of senators and legislators.
William Elder, Jr., a medical student with cystic fibrosis and long-time advocate for the CF community, has been invited to sit with First Lady Michelle Obama at tonight's State of the Union address. The White House invitation highlights the momentum and progress toward finding a cure for this devastating disease.