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 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
In a letter to Connecticut's House Committee on Insurance and Real Estate, the Cystic Fibrosis Foundation provided feedback on HB 5054 which would establish an affordability board with the goal to improve access to and affordability of care for Connecticuters.
In a letter to Nebraska's Banking, Commerce and Insurance Committee, the Cystic Fibrosis Foundation provided feedback on LB 833 which would establish an affordability board with the goal to improve access to and affordability of care for Nebraskans.
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 a letter to the Virginia Senate Committee on Commerce and Labor, the Virginia House Committee on Labor and Commerce, and all members of the House of Delegates, the Cystic Fibrosis Foundation provided feedback on SB 274/HB 570 which would establish an affordability board with the goal to improve access to and affordability of care for Virginia
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 Department of Labor, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in encouraging the department to rescind the 2018 Association Health Plan rule due to a number of inappropriate provisions including that the rule was at odds with both the text and purpose of the Employee Retirement Income Security
In a letter to select Florida legislators, the Cystic Fibrosis Foundation expressed its support of SB 228/HB 363, which would ban co-pay accumulator programs in the state.
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.
In a letter to Wisconsin’s Assembly Committee on Health, Aging, and Long-Term Care, the Cystic Fibrosis Foundation expressed their support of AB 773 which would ban co-pay accumulators in the state and require covered benefits to be considered essential health benefits.