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.
The Cystic Fibrosis Foundation and the Cystic Fibrosis Therapeutics Network sent a letter to the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research to request a meeting to discuss novel approaches to clinical trial design for cystic fibrosis nucleic acid-based therapies.
Partnership for Protecting Coverage response to request for information issued by the Treasury Department, the Consumer Financial Protection Bureau, and the Department of Health and Human Services on medical credit cards, loans, and other financial products used to pay for health care that may contribute to medical debt.
Coalition letter asking Georgia’s governor to pause Medicaid procedural terminations to ensure that those who are currently enrolled in Medicaid can maintain their coverage, if eligible, or transition to other forms of coverage.
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.
Partnership for Protecting Coverage statement urging the Administration to take immediate action to protect patients’ Medicaid coverage amid the public health emergency unwinding.
CF Foundation letter to the Wisconsin governor thanking him for funding the Wisconsin Chronic Disease Program and Wisconsin Medicaid in the 2023-2025 biennial budget.
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.
CF Foundation letter to the Ohio governor and state legislature thanking them for funding the Children and Youth with Special Health Needs program and Ohio Medicaid in the 2024-2025 budget.
CF Foundation letter to the Senate Finance Committee in support of the Modernization and Ensuring PBM Accountability Act which would enhance accountability and address the opaque influence of pharmacy benefit managers.