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 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.
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.
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.
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.
CF Foundation letter thanking Michigan’s governor for providing adequate funding for the Children’s Special Health Care Services program and Medicaid in the state’s 2024 budget, both of which play an important role in ensuring consistent access to care for Michiganders living with CF.
Ad hoc patient advocacy coalition provides comments to Pennsylvania’s Insurance Commission to inform decision making regarding the state’s essential health benefits benchmark plan.
Partnership to Protect Coverage issues a statement encouraging all states to use Medicaid flexibilities to ensure patients have ample opportunity to respond to redetermination requests, and to minimize disruptions in their health coverage.
Coalition letter asking Georgia’s governor to pause Medicaid procedural terminations to ensure that those who are currently enrolled in Medicaid can maintain their coverage, if eligible, or transition to other forms of coverage.
Partnership for Protecting Coverage statement urging the Administration to take immediate action to protect patients’ Medicaid coverage amid the public health emergency unwinding.
CF Foundation letter to the Wisconsin governor thanking him for funding the Wisconsin Chronic Disease Program and Wisconsin Medicaid in the 2023-2025 biennial budget.