By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our state and federal statements, letters, and regulatory comments.
Statements, letters, and regulatory comments issued before July 2023 can be found in our archive.
In comments provided to the Florida Health Care Administration, the Cystic Fibrosis Foundation joined a coalition of patient groups to express support for expanding eligibility for the Children’s Health Insurance Program in Florida and urged legislators to remove premium requirements.
In a letter to select Florida legislators, the Cystic Fibrosis Foundation expressed its support of SB 228/HB 363, which would ban co-pay accumulator programs in the state.
An ad hoc coalition of patient advocacy organizations sends a letter to Governor DeSantis asking the state to address the redetermination process and the unnecessary loss of coverage for children.