Statements, Letters, and Regulatory Comments

The Cystic Fibrosis Foundation joined other public health groups in a statement applauding the U.S. Court of Appeals for the Fifth Circuit ruling in Neese v. Becerra, which challenged protections outlined in the Affordable Care Act for LGBTQ+ patients receiving health care services.

In a letter to the New Jersey Senate Committee on Commerce, the Cystic Fibrosis Foundation expressed support for S3818, requiring insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing obligations.

In a letter to Congress, the Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in urging policymakers to reject any cuts to Medicaid in FY 2025 that would pose access barriers.

In a letter to Congressional leadership, the Cystic Fibrosis Foundation joined the Partnership for Protecting Coverage in outlining several patient priorities that would improve and expand access to high-quality, affordable coverage.

In a letter to Congressional leadership, the Cystic Fibrosis Foundation joined 230 other organizations in calling for action on  H.R. 4758/S. 2372, legislation that would enable children covered by Medicaid or the Children’s Health Insurance Plan to receive time-sensitive care from healthcare providers located outside of their home state.

In a letter to the North Carolina Department of Insurance, the Cystic Fibrosis Foundation urged the state to ensure the successful implementation of SB 257, which requires state-regulated insurers to apply third-party assistance to out-of-pocket maximums.

In a letter to committee leadership, the Cystic Fibrosis Foundation joined the Ad Hoc Group for Medical Research in calling on the committee to provide no less than the Senate Appropriations Committee-approved funding level of $48.9 billion for the NIH and ARPA-H.  

In a letter to the Texas Department of Insurance, the Cystic Fibrosis Foundation urged the state to ensure the successful implementation of HB 999, which requires state-regulated insurers to apply third-party assistance to out-of-pocket maximums.

In a letter to New Jersey’s General Assembly Financial Institutions and Insurance Committee, the Cystic Fibrosis Foundation noted that A4275 would help mitigate coverage denials due to administrative changes that could delay access to critical CF therapies, protecting patients from gaps of coverage and delays in care.

In comments submitted to the Colorado Prescription Drug Affordability Board, the Cystic Fibrosis Foundation recommended additional provisions to help clarify the objectives and methodology for affordability reviews, enhance the transparency of the board’s processes, and expand relevant data inputs and criteria for drug selection.

In a letter to New Hampshire’s Committee on Commerce and Consumer Affairs, the Cystic Fibrosis Foundation signaled its support for HB1571, which would build on prior legislation to limit copayments for continuous glucose monitoring devices and other diabetic supplies such as test strips and sensors.

In its comments to the Organ Procurement and Transplantation Network (OPTN) Membership and Professional Standards Committee, the Cystic Fibrosis Foundation also emphasized that the proposed changes do not diminish the need for, or value of, existing OPTN education and mentoring programs.

The Cystic Fibrosis Foundation joined nearly 30 patient, provider, and professional organizations to call on Congress to pass the Supplemental Oxygen Access Reform Act or SOAR Act (S. 3821/H.R.

The Cystic Fibrosis Foundation joined the CDC Coalition in a letter to the U.S.

In its comments, the Cystic Fibrosis  Foundation commended the U.S.

In a letter to the House of Representatives Energy & Commerce Committee, the Cystic Fibrosis Foundation signaled support for the two bills, which recognize the complexity of modern rare disease drug development and protect telehealth flexibilities by removing certain barriers to access that are no longer necessary or beneficial to patients o