Statements, Letters, and Regulatory Comments

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.

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 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 provided comments to the Patient Centered Outcomes Research Institute on their draft landscape of patient-centered economic outcomes that provides recommendations to researchers seeking to understand the economic impacts of living with a disease.

CF Foundation joins 1,098 organizations strongly urging Congressional leadership to finish the FY24 appropriations process and adopt the bipartisan Senate funding framework as a starting point for final negotiations.

The Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in providing feedback to the Departments of Treasury, Labor, Health and Human Services, and the Office of Personnel Management on new provisions outlined in the No Surprises Act. 

In comments provided to the U.S.

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