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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.
Our federal and state advocacy efforts support our mission of ensuring that everyone with cystic fibrosis has access to high-quality, specialized care. We evaluate policies and legislation through one lens: How would this impact people with CF and their families?
Each year, hundreds of volunteers from across the country participate in advocacy events that help state and federal policymakers and decision-makers understand the complexities of living with cystic fibrosis and the importance of having access to affordable, adequate care and supporting research and drug development.
Partnership for Protecting Coverage letter to the U.S. Department of Health and Human Services outlining patient priorities for the 2025 Notice of Benefits and Payment Parameters.
Partnership for Protecting Coverage statement urging the Administration to take immediate action to protect patients’ Medicaid coverage amid the public health emergency unwinding.
Ad hoc patient advocacy coalition letter to the Center for Medicare and Medicaid Services on the implementation of the Medicare Part D maximum monthly out-of-pocket cap option.
CF Foundation letter to New York’s governor asking that she sign a bill that would reinstate the Adult CF Assistance Program.