News

The package of tax reforms expected to be signed into law includes several provisions that will impact some people with cystic fibrosis.

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.

New data show positive results in individuals with a single F508del mutation as well as people with two copies of F508del and support continued development of triple combination therapies. 

As part of the Cystic Fibrosis Foundation's ninth annual Teen Advocacy Day, 162 advocates from 38 states met with elected officials in Washington, D.C., to tell their stories and make sure the cystic fibrosis community is heard in ongoing health care reform discussions.

Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.

The U.S. Food and Drug Administration (FDA) today approved ivacaftor (Kalydeco^®) for people ages 2 and older who have at least one of 23 residual function mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

The U.S. House of Representatives has passed the American Health Care Act (AHCA), legislation that fails to adequately protect people living with cystic fibrosis.

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.