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 a letter to the Department of Health and Human Services and the Domestic Policy Council, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging for the prompt finalization of a number of pending rules that will greatly advance affordable, accessible, and adequate healthcare coverage.
The Cystic Fibrosis Foundation provided comments to the Patient Centered Outcomes Research Institute on their draft landscape of patient-centered economic outcomes that provides recommendations to researchers seeking to understand the economic impacts of living with a disease.
The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in providing feedback to the Departments of Treasury, Labor, Health and Human Services, and the Office of Personnel Management on new provisions outlined in the No Surprises Act.
In their response to the House Budget Committee’s request, the Partnership for Protecting Coverage outlined three overarching principles to guide health care reform and improve the U.S. health care system.
Partnership for Protecting Coverage statement is in response to a hearing entitled “Reduced Care for Patients: Fallout from Flawed Implementation of the Surprise Medical Bill Protections.”