National Public Radio’s “Morning Edition” Features CF Families Struggling to Cover Health Costs

November 20, 2008

Increasing numbers of families nationwide are struggling to pay for the life-saving therapies needed to treat cystic fibrosis, according to an in-depth report today on “Morning Edition” of National Public Radio.

Not long ago, people with CF died in childhood. Now, with new drugs and treatments, the median predicted age of survival has doubled to 37, and it keeps growing, the report said.

"We have patients living into their 50s and 60s at this point," says Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "You know, this should be a time of great hopefulness in terms of the patients and their future." But unfortunately, the cost of treatment is increasingly out of reach.

New Cystic Fibrosis Patient Assistance Program

To address this issue, the Foundation recently launched a Cystic Fibrosis Patient Assistance Foundation to help qualifying families cover the cost of certain medications. The Foundation also has a patient hotline for information about insurance coverage:
1-800-622-0385 or

Tell your story to Congress

In January, President-Elect Barack Obama and a new Congress are expected to take a close look at health care reform. Please contact your elected officials today and tell them your story: how is the high cost of drugs affecting you and your family? 

Read and hear the full NPR story.