The Institute for Clinical and Economic Review (ICER) developed an assessment of the comparative clinical effectiveness and value of cystic fibrosis therapies. The Foundation provided input to help inform this process.
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PTC Therapeutics has discontinued development of ataluren as a potential treatment for people with cystic fibrosis caused by a nonsense mutation. The Cystic Fibrosis Foundation is supporting efforts to pursue treatments for people with CF who have a nonsense, splicing or other rare mutations.
Yesterday, the Cystic Fibrosis Foundation met with HHS Secretary Tom Price and seven other patient advocacy groups to discuss drug pricing and the needs of the CF community. President Trump has identified drug pricing as a top priority, and this meeting was the start of a listening tour by the Secretary.
On March 20, the Cystic Fibrosis Foundation and 86 other organizations called on Congress to protect Medicaid, a critical source of coverage for people in the cystic fibrosis community.
This week, House committees released legislation to repeal and replace the Affordable Care Act. The Cystic Fibrosis Foundation issued a statement consistent with our ongoing work to promote policies to help ensure that people with cystic fibrosis have access to high-quality, specialized care and adequate affordable insurance.
The Cystic Fibrosis Foundation awarded U.S. Sen. Susan Collins (R-Maine) the Breath of Life Legislator Award on Nov. 3 for her leadership in ensuring that people with cystic fibrosis have access to the adequate, affordable care they need to live full and healthy lives.