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.
In the statement, the Partnership for Protecting Coverage applauded efforts by the Department of Labor to reverse previous decisions to eliminate or substantially alter standards and regulatory structures of association health plans, including requiring these plans to cover essential health benefits.
In the letter to the Federal Trade Commission, the Cystic Fibrosis Foundation asks the commissioner to take appropriate enforcement action against alternative funding programs, emphasizing the harmful consequences of these programs on people with CF.
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.
The Cystic Fibrosis Foundation sent a letter to the Texas Insurance Commission requesting clarity on which insurance plans are impacted by HB99, which requires insurers to apply third-party assistance to out-of-pocket maximums and other cost-sharing requirements.
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 expressed support to the New Jersey General Assembly for A1255, Ensuring Transparency in Prior Authorization, which makes several important reforms to the prior authorization process.
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 a letter to the Senate Finance Committee, the Cystic Fibrosis Foundation, along with an ad hoc patient coalition, cited support for the provision included in the Modernizing and Ensuring PBM Accountability Act that would prohibit pharmacy benefit managers from being compensated for Medicare Part D covered drugs based on the manufacturer’s lis
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.