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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?
Antibiotics | Infection Prevention and Control | Social Life and Relationships
The Right Way to Stick Your Wife With a Needle

Learning to help my wife access her port is part of our shared journey with CF. Check out our video for some tips and tricks we’ve learned along the way.

Peter Frey
| 2 min read
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.
Antibiotics | North American CF Conference | Infection Prevention and Control
What I Learned About Treating NTM at NACFC

Even though I haven't cultured for nontuberculous mycobacteria, I was excited to learn more about the treatment for the bacteria in people with cystic fibrosis during the virtual session at the North American Cystic Fibrosis Conference.

Meagan Helmick
| 3 min read
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Cystic Fibrosis Foundation Joins Peer CF Organizations in Commenting on Draft Guidance on Single-Arm Trials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European Cystic Fibrosis Society, and Cystic Fibrosis Europe provided comments to the European Medicines Agency on draft guidance on establishing efficacy of a new treatment based on single-arm trials.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
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.