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Public Policy
Our Public Policy Work
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?
About the CF Foundation | Advocacy | Public Policy
Statements, Letters, and Regulatory Comments
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.
Public Policy
Ways to Advocate
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.
Public Policy
CF Foundation Provides Comments to the Colorado Prescription Drug Affordability Board

The Cystic Fibrosis Foundation along with directors of Colorado's Cystic Fibrosis care centers sent a letter to the state's Prescription Drug Affordability Board commenting on the list of prioritized drugs eligible for an affordability review. 
Public Policy
Cystic Fibrosis Foundation Joins Peer CF Organizations in Commenting on Draft Guidance on Single-Arm Trials

The Cystic Fibrosis Foundation, European Cystic Fibrosis Society, and Cystic Fibrosis Europe provided comments to the European Medicines Agency on draft guidance on establishing efficacy of a new treatment based on single-arm trials.
Public Policy
CF Foundation Supports Efforts By House of Representatives to Mitigate Drug Shortages

The Foundation sends a letter to leaders of the House Energy & Commerce Committee urging passage of H.R. 3008, 3793 and 3810 which would help mitigate drug shortages and ensure patients will have access to all necessary medications.
Public Policy
CF Foundation Provides Comments to Colorado’s Prescription Drug Affordability Board on Its Review of Trikafta

In a letter sent to Colorado’s Prescription Drug Affordable Board, the Cystic Fibrosis Foundation provides feedback on the board’s review of Trikafta®, including concerns around the board’s proposed methodology, and provides a compilation of published data on Trikafta’s effects on clinical outcomes and other health care utilization.
Public Policy
Coalition Provides Comments to CMS on Medicare Prescription Payment Plan

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.  
Public Policy
CF Foundation Provides Comments to the Administration on the 2024 Medicare Physician Fee Schedule Proposed Rule

CF Foundation provides comments to the U.S. Department of Health and Human Services and the Centers for Medicare and Medicaid Services responding to the 2024 Medicare Physician Fee Schedule, focusing on improving access to care through telehealth.
Public Policy
Coalition Provides Comments to the Administration on a Proposed Rule Concerning Short-Term, Limited-Duration Insurance Plans

Partnership to Protect Coverage provides comments to the U.S. Department of Health and Human Services, the Treasury Department, and the Department of Labor on a proposed rule concerning short-term, limited-duration insurance plans.