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 Mississippi legislators, the Cystic Fibrosis Foundation expressed support for HB 1725 which, if passed, would expand eligibility for Medicaid. The letter also urged legislators to ensure that the bill expands eligibility to adults with incomes up to 138% of the federal poverty line.
The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in a letter to the U.S. Department of Health and Human Services supporting CHIP eligibility expansion in Florida but opposing a proposal that would disenroll families who fail to pay premiums.
The Cystic Fibrosis Foundation joined the Connecting to Coverage Coalition in applauding the Centers for Medicare & Medicaid Services for implementing key measures aimed at maintaining enrollment for individuals eligible for Medicaid and the Children’s Health Insurance.
The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in a letter to Alabama legislators opposing SB 232, a bill that could ultimately authorizing a nonprofit agriculture organization to offer health benefits to its members.
In a letter to the Tennessee House Insurance Subcommittee, the Cystic Fibrosis Foundation expressed support for two bills: HB 2557, which would direct the state to apply for a waiver for continuous coverage for children under age 6, and HB 2170, which would require covered benefits to be considered essential health benefits.
The Cystic Fibrosis Foundation joined a coalition of patient advocacy organizations in expressing support for Hawaii's proposal to provide multi-year continuous Medicaid coverage for children under age six, which would protect patients and families from gaps in care and promote health equity.
In a letter to bill sponsors, the Cystic Fibrosis Foundation expressed their support of S.3138, the Stabilize Medicaid and CHIP Coverage Act, which will provide reliable access to care and continuous coverage to all adult Medicaid beneficiaries.
In a letter to bill sponsors, the Cystic Fibrosis Foundation signaled their endorsement of H.R. 5434, the Stabilize Medicaid and CHIP Coverage Act, which will provide reliable access to care and continuous coverage to all adult Medicaid beneficiaries.
In a statement following their filed amicus brief, the Partnership for Protecting Coverage called on the U.S. Court of Appeals for the Fifth Circuit to preserve access to evidence-based preventative services without cost-sharing as required under the Affordable Care Act as the court hears oral arguments in Braidwood v. Becerra.
In a letter to the House Energy & Commerce Committee, the Cystic Fibrosis Foundation states its support for legislation that addresses antimicrobial resistance, orphan drug exclusivity, and access to specialized care across state lines.
In a letter to the Department of Health and Human Services and the Domestic Policy Council, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging for the prompt finalization of a number of pending rules that will greatly advance affordable, accessible, and adequate healthcare coverage.
In comments provided to the Florida Health Care Administration, the Cystic Fibrosis Foundation joined a coalition of patient groups to express support for expanding eligibility for the Children’s Health Insurance Program in Florida and urged legislators to remove premium requirements.
In a letter to the President Pro Tempore and Majority Leader, the Cystic Fibrosis Foundation thanked the Senate for their continued support of the Adult CF Assistance Program and urged that they use unspent funds appropriated for people with CF in previous years to extend the program past March 31.
In a letter to the California Department of Health Care Services, the Cystic Fibrosis Foundation expressed support for California's proposal to provide multi-year continuous Medicaid coverage for children under age four, which would protect patients and families from gaps in care and promote health equity.
The Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging the Centers for Medicare and Medicaid Coverage to strengthen critical policies that would improve the Medicaid redetermination process.
In a letter to the Nebraska Senate’s Committee on Health and Human Services, the CF Foundation urged legislators to amend LB 1060 to require the provision of materials to parents about the lifesaving benefits of newborn screening and the risks of opting out before parents decide to forgo this service.