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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 archived state and federal statements, letters, and regulatory comments from 2018–June 2023.
The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. During an election cycle, it's important to ask questions of candidates to understand how their positions would impact the CF community.
The Congressional Cystic Fibrosis Caucus unites bipartisan members from both chambers to raise awareness for CF; support CF research, drug discovery, and development; encourage collaboration between the public sector and private organizations; and support access to quality, affordable care for people living with CF.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
From budgeting for the everyday, to triaging the unexpected and dreaming of the future, there is a lot to consider when building a financial plan. While living with cystic fibrosis may be costly, financial planning can help ease some of the stress you may feel so you can focus on other areas of your life.
Scientists around the world agree that global innovation is needed to address the shortage of effective antibiotics. Our Infection Research Initiative supports much-needed research and development, but new policies are needed to promote a sustainable, robust antibiotics pipeline and a marketplace that rewards innovation.
People living with cystic fibrosis may apply for Social Security Disability Insurance or Supplemental Security Income, programs that serve as a source of income and health insurance coverage for people who are unable to work due to their health status.
More states are establishing prescription drug affordability boards to assess and address the cost and affordability of prescription drugs. Learn more about what these reviews mean for you and your loved ones.
Alongside the cystic fibrosis community, we advocate for policies and programs that promote access to highly specialized CF care and that help advance research and drug development.