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 HHS, OMB, SSA, and OPM, the Cystic Fibrosis Foundation expresses concern that these abrupt changes could result in loss of access to lifesaving therapies, care, and resources for the CF community.
In a letter to the Alaska House Committee on Health and Social Services, the Cystic Fibrosis Foundation expressed its support of HB 151, a proposal to implement continuous Medicaid eligibility for children under six years of age as a way to improve equitable access to care in the state.
The Cystic Fibrosis Foundation also thanked the lead Senate cosponsors of the Help Ensure Lower Patient (HELP) Copays Act (S.864), which, if enacted, would ensure patients’ health and financial well-being are not sacrificed in a systemic debate around drug pricing.
In a letter to the state’s House Committee on Health and Mental Health, the Cystic Fibrosis Foundation expressed its support for HB 1195, which would cap out-of-pocket expenses for insulin and related supplies at $35 per 30-day supply.
In a letter to Congressional leadership, the Cystic Fibrosis Foundation joined 212 other organizations in calling for action on H.R. 1509/S. 752, legislation that would enable children covered by Medicaid or the Children’s Health Insurance Plan to receive time-sensitive care from health care providers outside their home state.
In a letter to Alaska’s Senate Committee on Labor and Commerce, the Cystic Fibrosis Foundation expressed its support for SB 133, which would make several important reforms to the prior authorization process.
In a letter to the state’s Senate Health and Welfare Committee, the Cystic Fibrosis Foundation urged committee members to support SB 851, which would expand Medicaid, a critical step for improving health outcomes and ensuring that Tennesseans with CF have the coverage they need to live long, healthy lives.
In a letter to the state’s House Health and Government Operations Committee, the Cystic Fibrosis Foundation expressed its support of SB 773, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
In a letter to Congress, the Cystic Fibrosis Foundation joined other patient organizations in opposing legislation such as the REINS Act (H.R. 142), the Midnight Rules Act (S.164/H.R. 77) and the GOOD Act.
In a letter to the state’s Senate Committee on Health Policy, the Cystic Fibrosis Foundation expressed support for SB 135 which would preserve critical protections for people with chronic and life-threatening conditions, like cystic fibrosis.
In a letter to Indiana’s lawmakers, the Cystic Fibrosis Foundation expressed support for Amendment 3 to HB 1604 which would ban co-pay accumulators, maximizers, and alternative funding programs.
In a letter to the state’s House Insurance Committee, the Cystic Fibrosis Foundation supported four bills — HB 404, HB 535, HB 618, and HB 755 — to preserve critical protections for people with chronic and life-threatening conditions, like cystic fibrosis.
In a letter to the Texas Drug Utilization Review Board, the Cystic Fibrosis Foundation requested expanded coverage for inhaled tobramycin and aztreonam lysine for inhalation for children under age six covered by Medicaid.
In a letter, the Cystic Fibrosis Foundation urged state legislators to sign on as co-sponsors and support LRB 1278/1 and LRB 2364/1, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements and prohibit some alternative funding programs.
In a letter to Ohio legislators, the CF Foundation thanked the legislature for their continued protection of the state’s Complex Medical Help program and asked that legislators continue to protect this crucial program for people with cystic fibrosis.
In the letter, the Cystic Fibrosis Foundation outlined its top policy priorities and urged the Administration to take the needs of people with CF into account when considering new health care policies and proposals.