Statements, Letters, and Regulatory Comments

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.

Statements, letters, and regulatory comments issued before July 2023 can be found in our archive.

Other Patient, Research Organizations Call on Congress to Protect Nation’s Biomedical Research Institutions and Infrastructure

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.

May 14, 2025
Medicaid Cystic Fibrosis Foundation Issues Statement on Proposed Cuts to Medicaid

Medicaid is a lifeline for nearly 40% of people living with cystic fibrosis.

May 13, 2025
Affordable Care Act | Medicaid Coalition Urges Congress to Stop Attacks on Medicaid, Affordable Care Act Ahead of Key Committee Markups

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.  

May 12, 2025
Appropriations | Medicaid Coalition Expresses Concerns About Proposed Cuts to Medicaid

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.

May 5, 2025
Health Equity | Newborn Screening Coalition Expresses Concerns About the Elimination of the Advisory Committee on Heritable Disorders in Newborns and Children

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.

May 5, 2025
Drug Pricing and Access CF Foundation Supports Massachusetts's Efforts to Ban Co-Pay Accumulators

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.

April 29, 2025
Drug Pricing and Access CF Foundation Supports Updates to the Statutes of Oregon’s Prescription Drug Affordability Board

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.

April 29, 2025
Appropriations Coalition Expresses Concerns About the Administration’s Proposed HHS Budget

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.

April 25, 2025
CF Foundation Provides Comments on Michigan’s Proposal to Establish a Prescription Drug Affordability Board

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.

April 23, 2025
Other CF Foundation Urges Administration to Reverse Rapid, Large-Scale Reductions in Force

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.

April 9, 2025
Health Equity | Medicaid CF Foundation Supports Continuous Medicaid Coverage for Children Under Six in Alaska

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.

April 3, 2025
Drug Pricing and Access CF Foundation Expresses Support for the HELP Copays Act

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.

April 2, 2025
Drug Pricing and Access CF Foundation Supports Out-of-Pocket Cap for Insulin in Missouri

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.

April 1, 2025
Drug Pricing and Access | Medicaid Coalition Supports Accelerating Kids’ Access to Care Act

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.

March 26, 2025
Prior Authorization CF Foundation Supports Alaska’s Efforts to Streamline the Prior Authorization Process

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. 

March 26, 2025
Affordable Care Act | Medicaid CF Foundation Supports Efforts to Expand Medicaid in Tennessee

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.

March 26, 2025