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 Senate Finance Committee, the Cystic Fibrosis Foundation, along with an ad hoc patient coalition, cited support for the provision included in the Modernizing and Ensuring PBM Accountability Act that would prohibit pharmacy benefit managers from being compensated for Medicare Part D covered drugs based on the manufacturer’s lis
Ad hoc patient coalition provides comments to the Centers for Medicare and Medicaid Services on draft guidance related to the Medicare Prescription Payment Plan, arguing the importance of the plan in ultimately lowing the cost of prescription drugs for enrollees.
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.