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 letter to all Utah legislators, the Cystic Fibrosis Foundation expressed its support for SB 152, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
The Foundation calls on the health plan to reverse its decision to remove CFTR modulators from marketplace and small employer plan formularies as required by patient protections guaranteed in the Affordable Care Act. The letter was also sent to insurance commissioners in Utah, Nevada, Colorado, and Idaho.
The letter responds to Select Health’s changes in coverage criteria, urging the health plan to cover Trikafta for all people with cystic fibrosis who meet eligibility requirements per the U.S. Food and Drug Administration label.