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.
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.
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 | 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 | 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.
Health Equity | Medicaid CF Foundation Supports Pennsylvania’s Proposal to Provide Continuity of Care for Children on Medicaid and CHIP

In a letter to Pennsylvania Department of Human Services, the Cystic Fibrosis Foundation expressed support for Pennsylvania’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 Coalition Provides Comments to HHS on Proposed Changes to North Carolina’s Medicaid Program

Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on North Carolina’s proposal to provide continuous program eligibility for children. 
Health Equity | Medicaid Coalition Provides Comments to HHS on Proposed Changes to Maryland’s Medicaid Program

Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on Maryland’s proposal to make permanent policies that would make the program eligibility review process timelier and more efficient, reducing the administration burden faced by the patient.
Affordable Care Act | Health Equity | Medicaid Coalition Provides Comments to HHS on Proposed Changes to Massachusetts’ Medicaid Program

Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on Massachusetts’ proposal to provide retroactive Medicaid coverage, continuous eligibility, and increased eligibility for marketplace subsidies.
Health Equity | Medicaid CF Foundation Comments on Hawaii’s Proposal to Broaden Child Access to Medicaid

The CF Foundation provided feedback to Hawaii’s Medicaid director, commending Hawaii’s efforts to provide multi-year, continuous Medicaid coverage for children under six as well as two-year continuous eligibility for older children.