Cystic Fibrosis Foundation's Statement on Health Care Reform

August 13, 2009

The Cystic Fibrosis Foundation is following the health care reform discussion very closely. We commend those who are working to create a health care system that would improve care for people with cystic fibrosis and other chronic diseases.

Cystic fibrosis is a costly disease to treat, and increasing numbers of people with CF are struggling to pay for the care they need. In a recent survey, one in four people with CF reported delaying or skipping care because of cost. Medical costs for people with cystic fibrosis are nine to 13 times higher than for the average health care consumer.

It’s important that people with cystic fibrosis get the care they need. To ensure this, the CF Foundation is pressing Congress to include specific reforms that are essential for the treatment of CF. Because the health care debate is still evolving, the Foundation has not yet taken a position on any particular health care reform bill.  However, we are pleased that the plans being discussed contain many of the provisions the Foundation supports, including:

  • Ensuring that people with CF are able to receive quality, comprehensive care from an accredited CF care center, and can choose their health care providers even if they switch health plans. 

  • Reducing restrictions on coverage, including annual and lifetime health insurance caps, as well as limits on pre-existing conditions. We also support provisions that allow dependents up to age 26 be covered by their parents’ insurance plan. 

  • Protecting against exorbitant out-of-pocket costs, which helps protect patients and ensures they can benefit from specialized medication without unreasonable economic burden.

As this landmark debate unfolds, the CF Foundation continues to educate elected officials about the unique needs of people with CF to ensure the health care system can best deliver exemplary care to extend the quality and length of life for all those with cystic fibrosis.