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.
The Cystic Fibrosis Foundation joined other patient advocacy organizations in providing comments to Nevada’s Department of Health and Human Services requesting pass-through funds to implement a coverage program that would improve access to affordable coverage in the state.
Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on North Carolina’s proposal to provide continuous program eligibility for children.
Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on Maryland’s proposal to make permanent policies that would make the program eligibility review process timelier and more efficient, reducing the administration burden faced by the patient.
In comments provided to the U.S.
Ad hoc patient advocacy coalition provided feedback to the U.S. Department of Health and Human Services on Massachusetts’ proposal to provide retroactive Medicaid coverage, continuous eligibility, and increased eligibility for marketplace subsidies.
The Cystic Fibrosis Foundation sent feedback to the Maryland Prescription Drug Affordability Board on their proposed Cost Review Study Process.
The CF Foundation provided feedback to Hawaii’s Medicaid director, commending Hawaii’s efforts to provide multi-year, continuous Medicaid coverage for children under six as well as two-year continuous eligibility for older children.
The CF Foundation expressed support to members of the Wisconsin State Legislature on LRB 1683/1, legislation that would provide a number of measures to protect patients’ access to medication, including requiring insurers to apply third-party assistance to out-of-pocket-maximums and other patient cost-sharing requirements.
In comments provided to the U.S. Departments of Health and Human Services, Labor, and Treasury, the Partnership for Protecting Coverage supported the Mental Health Parity and Addiction Equity Act but asked that the departments remove proposed exceptions which would undermine important progress.
In their response to the House Budget Committee’s request, the Partnership for Protecting Coverage outlined three overarching principles to guide health care reform and improve the U.S. health care system.
An ad hoc coalition of patient advocacy organizations sends a letter to Governor DeSantis asking the state to address the redetermination process and the unnecessary loss of coverage for children.
The CF Foundation sent a letter of support to Ohio’s Public Health Policy Committee supporting House Bill 177, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
Partnership to Protect Coverage response to request for information issued by the Treasury Department, the Consumer Financial Protection Bureau, and the Department of Health and Human Services on medical credit cards, loans, and other financial products used to pay for health care that may contribute to medical debt.
CF Foundation provides comments to the U.S. Department of Health and Human Services and the Centers for Medicare and Medicaid Services responding to the 2024 Medicare Physician Fee Schedule, focusing on improving access to care through telehealth.
CF Foundation letter to Michigan’s Committee on Insurance and Financial Services supporting HB 4719, which would require insurers to apply third party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
Ad hoc patient coalition provides comments to the U.S. Department of Health and Human Services supporting Washington’s proposal to extend continuous eligibility to the Children’s Health Insurance Program to children under six years of age in the state.