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 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.
The Cystic Fibrosis Foundation joined the CDC Coalition in a letter to leaders of the House Appropriation Subcommittee on Labor, Health, Human Services, Education, and Related Agencies, urging them to include $11.581 billion for the Centers for Disease Control and Prevention in the Fiscal Year 2025 budget.
In response to a request for information from the U.S.
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 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 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.
In a letter to the House Energy & Commerce Health Subcommittee, the Foundation joins a cohort of patient organizations to stress the importance of addressing antimicrobial resistance and prioritize the passage of the PASTEUR Act.
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.
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.
In a letter to Maryland's Senate Finance Committee and House Health and Government Operations Committee, the Cystic Fibrosis Foundation expressed its support for HB 879/SB 595, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements as well as ban alternative funding prog