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 House leadership and the Appropriations Committee, the Cystic Fibrosis Foundation, joined by more than 30 organizations, urged Congress to reverse recent policy changes that have destabilized the nation’s research programs.
Medicaid is a lifeline for nearly 40% of people living with cystic fibrosis.
In the statement, the Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in expressing deep alarm that actions from the House Energy and Commerce Committee and Ways and Means Committee could terminate health care for millions of people living with serious and chronic health conditions.
In a letter to Congressional leadership, the Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage coalition in expressing strong opposition to proposed cuts to Medicaid Congress is considering in the FY2025 budget reconciliation package.
In a letter to the Secretary of the U.S. Department of Health and Human Services, the Cystic Fibrosis Foundation joined a coalition of 272 organizations urging the Administration to reinstate the committee and preserve the nation’s newborn screening infrastructure.
In a letter to Massachusetts state legislators, the Cystic Fibrosis Foundation expressed its support for H 1101 and S 698, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
In a letter to Oregon’s House Committee on Behavioral Health and Health Care, the Cystic Fibrosis Foundation expressed support of SB 289, which would allow the state’s prescription drug affordability board to determine up to nine drugs are unaffordable per year, rather than exactly nine.
The Cystic Fibrosis Foundation joined a coalition of patient and health groups in a letter to the Congressional appropriators warning that proposed cuts would further devastate the nation’s research, scientific, and public health infrastructure.
In a letter to Michigan’s Senate Committee on Finance, Insurance, and Consumer Protection, the Cystic Fibrosis Foundation provided input on SB 3 and recommended the inclusion of additional provisions to put the needs of patients at the center of the discussion when selecting drugs for affordability reviews.
In a letter to HHS, OMB, SSA, and OPM, the Cystic Fibrosis Foundation expresses concern that these abrupt changes could result in loss of access to lifesaving therapies, care, and resources for the CF community.
In a letter to the Alaska House Committee on Health and Social Services, the Cystic Fibrosis Foundation expressed its support of HB 151, a proposal to implement continuous Medicaid eligibility for children under six years of age as a way to improve equitable access to care in the state.
The Cystic Fibrosis Foundation also thanked the lead Senate cosponsors of the Help Ensure Lower Patient (HELP) Copays Act (S.864), which, if enacted, would ensure patients’ health and financial well-being are not sacrificed in a systemic debate around drug pricing.
In a letter to the state’s House Committee on Health and Mental Health, the Cystic Fibrosis Foundation expressed its support for HB 1195, which would cap out-of-pocket expenses for insulin and related supplies at $35 per 30-day supply.
In a letter to Congressional leadership, the Cystic Fibrosis Foundation joined 212 other organizations in calling for action on H.R. 1509/S. 752, legislation that would enable children covered by Medicaid or the Children’s Health Insurance Plan to receive time-sensitive care from health care providers outside their home state.
In a letter to Alaska’s Senate Committee on Labor and Commerce, the Cystic Fibrosis Foundation expressed its support for SB 133, which would make several important reforms to the prior authorization process.
In a letter to the state’s Senate Health and Welfare Committee, the Cystic Fibrosis Foundation urged committee members to support SB 851, which would expand Medicaid, a critical step for improving health outcomes and ensuring that Tennesseans with CF have the coverage they need to live long, healthy lives.