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 Mississippi legislators, the Cystic Fibrosis Foundation expressed support for HB 1725 which, if passed, would expand eligibility for Medicaid. The letter also urged legislators to ensure that the bill expands eligibility to adults with incomes up to 138% of the federal poverty line.
The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in a letter to the U.S. Department of Health and Human Services supporting CHIP eligibility expansion in Florida but opposing a proposal that would disenroll families who fail to pay premiums.
In a letter to Colorado legislators, the Cystic Fibrosis Foundation expressed its support for SB 24-203 which, if passed, would require that the state’s Prescription Drug Affordability Board consider orphan drug status and, if the drug is an orphan drug, patient input when selecting drugs for affordability review.
In a letter to the Rhode Island General Assembly, the Cystic Fibrosis Foundation expressed its support of 8041, which if passed, would ban all state-regulated payers from including co-pay accumulator programs in their health insurance plans.
The Cystic Fibrosis Foundation joined the Connecting to Coverage Coalition in applauding the Centers for Medicare & Medicaid Services for implementing key measures aimed at maintaining enrollment for individuals eligible for Medicaid and the Children’s Health Insurance.
In a letter to the Vermont Senate, the Cystic Fibrosis Foundation expressed its support for HB 233, which, if passed, would ban co-pay accumulator programs in the state and require covered benefits to be considered essential health benefits.
In a letter to California's Assembly Committee on Health, the Cystic Fibrosis Foundation expressed its support for AB 2180, which, if passed, would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements, as well as require covered benefits to be considered essential health benefits.
In response to a request for information from the U.S.
In a letter to the Tennessee Senate Committee on Commerce and Labor, the Cystic Fibrosis Foundation expressed support for SB 2008 which would require covered benefits to be considered essential health benefits and limit alternative funding programs in state-regulated plans.
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 Missouri's House Committee on Health and Mental Health Policy, the Cystic Fibrosis Foundation expressed its support for HB 1628, 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 Senate Committee on Health Care, and later to the full Senate, the Cystic Fibrosis Foundation expressed its support for HB 4113, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.