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.
Health Equity | Drug Pricing and Access | Medicaid CF Foundation Supports Tennessee's Efforts to Improve Access to Medicaid and Ban Maximizers and Alternative Funding Programs

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.
Health Equity | Medicaid Coalition Supports Hawaii’s Proposal to Provide Continuity of Care for Children on Medicaid

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.
Health Equity | Medicaid CF Foundation Endorses Senate’s Stabilize Medicaid and CHIP Coverage Act

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.
Health Equity | Medicaid CF Foundation Supports the House’s Stabilize Medicaid and CHIP Coverage Act

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.
Affordable Care Act | Health Equity Coalition Urges Preservation of No-Cost Preventative Services in Braidwood Management v. Becerra

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.
Antimicrobial Resistance | Health Equity CF Foundation Supports Legislation Supporting Patients With Rare Diseases

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.        
Health Equity | Medicaid | Other Coalition Letter on Pending Rules to Advance Affordable, Accessible, and Adequate Healthcare Coverage

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.
Health Equity | Medicaid Coalition Comments on CHIP Eligibility Expansion in Florida

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.
Appropriations | Health Equity | State Programs CF Foundation Urges New York to Use Unspent Funds to Continue Funding the Adult CF Assistance Program

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.
Health Equity | Medicaid CF Foundation Supports California’s Efforts to Implement Continuous Medicaid Coverage for Young Children

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.
Health Equity | Medicaid Coalition Provides Comments on Federal Medicaid Renewal Requirements

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.
Health Equity | Newborn Screening CF Foundation Urges Changes to Nebraska Bill Making State Newborn Screening Optional

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.
Health Equity | Medicaid Coalition Issues Statement Encouraging States to Take Up Flexibilities in Medicaid Unwinding

The Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in strongly urging  governors and states to take additional action to protect Medicaid coverage for the children and families over the next year.
Health Equity | Other CF Foundation Comments on PCORI Patient-Centered Economic Outcomes Landscape

The Cystic Fibrosis Foundation provided comments to the Patient Centered Outcomes Research Institute on their draft landscape of patient-centered economic outcomes that provides recommendations to researchers seeking to understand the economic impacts of living with a disease.
Appropriations | Health Equity Coalition Letter to Congress on Finalizing FY24 Spending

CF Foundation joins 1,098 organizations strongly urging Congressional leadership to finish the FY24 appropriations process and adopt the bipartisan Senate funding framework as a starting point for final negotiations.
Health Equity | Medicaid CF Foundation Supports Pennsylvania’s Efforts to Implement Changes to Its Medicaid Program

In a letter to the state’s Department of Human Services, the Foundation supported Pennsylvania’s request to change provisions of its Medicaid program, including continuous eligibility for children under 6 and services for health-related social needs.