This is the first step in a long process and does not immediately change the health insurance coverage that people with cystic fibrosis and their families have today. Those currently enrolled in a plan through the Affordable Care Act or Medicaid expansion will continue to be covered for the immediate future. Congressional committees are now expected to begin drafting potential changes to current law.

The Cystic Fibrosis Foundation will continue its advocacy on behalf of people with CF and their families to ensure that those with CF have access to the high-quality, specialized care and innovative treatments they need to stay healthy. For more information, see our governing policy principles. 

“People with cystic fibrosis need access to high-quality, specialized care and adequate, affordable health insurance,” said Mary Dwight, senior vice president for policy and patient assistance programs at the Foundation. “We are working to ensure that the needs of people with CF are top-of-mind in the ongoing discussions around health care reform.” 

The Foundation is addressing health care reform through in-depth policy analysis, government and organizational outreach, and community education and mobilization.

In December 2016, we joined 72 other chronic and rare disease organizations to send a letter to President-elect Trump and Congressional leadership. The letter explained the critical role that high-quality and affordable health insurance plays in helping our community access essential treatments and care and expressed our desire to work together to create a health care system that benefits all Americans.

For questions about specific circumstances, the Foundation offers assistance through Compass, a personalized service to help with insurance, financial, legal and other life issues. To speak with an expert, you can call 844-COMPASS (844-266-7277) Monday - Friday from 9 a.m. to 7 p.m. ET, or email compass@cff.org.