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 Alaska's Health and Social Services Committee, the Cystic Fibrosis Foundation expressed its support to reduce the administrative burden and delays in care by establishing a gold carding provision that would exempt providers from prior authorization requirements if 90 percent of their requests were approved in the preceding 12 mont
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.
In a letter to the Illinois House Health Care Availability & Accessibility Committee and the Illinois House Insurance Committee, the Cystic Fibrosis Foundation expressed support for two bills — HB 4504, which would limit copays for prescription inhalers, and HB 5051, which would prohibit prior authorization on long-term prescriptions.
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 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 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.
In a letter to the Ohio House Insurance Committee, the Cystic Fibrosis Foundation expressed its support of HB 130 to streamline prior authorization requirements and urged the committee to lower the gold carding threshold for prescribers.
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.
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.
In a letter to the Vermont House of Representatives, the Cystic Fibrosis Foundation expressed its support for H. 766, which, if passed, would make several important reforms to the prior authorization process and would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
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.
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.
The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in providing feedback to the Departments of Treasury, Labor, Health and Human Services, and the Office of Personnel Management on new provisions outlined in the No Surprises Act.