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 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 U.S. Department of Health and Human Services and the U.S. Department of Labor, the Foundation requested the two agencies provide guidance to health insurers across all plan types clarifying that they must follow the co-pay assistance provision included in the 2020 Notice of Benefit and Payment Parameters.
In comments to the Department of Health and Human Services, the Cystic Fibrosis Foundation provided feedback on Notice of Benefit and Payment Parameters for 2025, focusing on the standards of benefits offered in Marketplace plans with a particular emphasis on updating the drug benefit to reflect patients' evolving needs and to
In comments responding to the Department of Health and Human Services’ Notice of Benefits and Payment Parameters for 2025, the Partnership for Protecting Coverage proposed standards for issuers and Marketplaces, as well as requirements for agents, brokers, web-brokers, direct enrollment entities, and assisters that help Marketplace consumers.
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.
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 for Protecting Coverage letter to the U.S. Department of Health and Human Services outlining patient priorities for the 2025 Notice of Benefits and Payment Parameters.