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 the CDC Coalition in a letter to leaders of the House Appropriation Subcommittee on Labor, Health, Human Services, Education, and Related Agencies, urging them to include $11.581 billion for the Centers for Disease Control and Prevention in the Fiscal Year 2025 budget.
In response to a request for information from the U.S.
In a letter to bill sponsors, the Cystic Fibrosis Foundation expressed their support of S.3138, the Stabilize Medicaid and CHIP Coverage Act, which will provide reliable access to care and continuous coverage to all adult Medicaid beneficiaries.
In a letter to bill sponsors, the Cystic Fibrosis Foundation signaled their endorsement of H.R. 5434, the Stabilize Medicaid and CHIP Coverage Act, which will provide reliable access to care and continuous coverage to all adult Medicaid beneficiaries.
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 House Energy & Commerce Health Subcommittee, the Foundation joins a cohort of patient organizations to stress the importance of addressing antimicrobial resistance and prioritize the passage of the PASTEUR Act.
In a letter to the House Energy & Commerce Committee, the Cystic Fibrosis Foundation states its support for legislation that addresses antimicrobial resistance, orphan drug exclusivity, and access to specialized care across state lines.
In a letter to the Department of Health and Human Services and the Domestic Policy Council, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging for the prompt finalization of a number of pending rules that will greatly advance affordable, accessible, and adequate healthcare coverage.
In a letter to the Department of Labor, the Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in encouraging the department to rescind the 2018 Association Health Plan rule due to a number of inappropriate provisions including that the rule was at odds with both the text and purpose of the Employee Retirement Income Security
The Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in urging the Centers for Medicare and Medicaid Coverage to strengthen critical policies that would improve the Medicaid redetermination process.
The Cystic Fibrosis Foundation joined the coalition in an amicus brief and related statement to explain how the court’s decision would threaten patients’ and providers’ ability to rely on the U.S. Food and Drug Administration’s decisions regarding drug safety.
The Cystic Fibrosis Foundation joined patient and health groups in writing a letter to House appropriators, asking they ensure the National Institute of Allergy and Infectious Diseases receives boosted funding needed to meet its critical, multi-faceted mission.
The Cystic Fibrosis Foundation joined the Partnership to Protect Coverage in strongly urging governors and states to take additional action to protect Medicaid coverage for the children and families over the next year.
In response to a request for information from the U.S. Senate Committee on Health, Education, Labor, and Pensions, the Foundation called for novel, innovative coverage models to ensure access of these critical therapies when they become available to people with cystic fibrosis.
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.
The Cystic Fibrosis Foundation joined an ad hoc coalition of stakeholders in calling for strong support of newborn screening programs as Congress continues ongoing negotiations for the Fiscal Year 2024 Labor, Health and Human Services, and Education Appropriations bill.