Chronically Ill and Underinsured

Monday, November 5, 2007

As our political leaders grapple with the important issue of providing health coverage for all children ["Vote Nearing in Battle Over Kids' Health Care," news story, Oct. 14], there is an equally challenging and often overlooked piece of the puzzle: the burden faced by people -- often with rare or chronic diseases -- who are underinsured.

At the Cystic Fibrosis Foundation, we are developing therapies that could one day lead to a cure for cystic fibrosis, a fatal genetic disease. While we're fortunate that 95 percent of cystic fibrosis patients are insured, many face a daunting reality: Despite their coverage, they may not be able to afford the advanced therapies needed to keep them alive and healthy. About 21 percent of people with cystic fibrosis say that they have intentionally skipped doses of medicine to keep costs down, and 13 percent say that they have delayed seeking treatment for the same reason.

More troubling still are those who have reached a lifetime maximum allowance on their health plans by their early 20s.

The challenge faced by underinsured cystic fibrosis patients mirrors the challenges faced by the underinsured population as a whole. This is a key part of the debate and too important to ignore.


President and Chief Executive

Cystic Fibrosis Foundation


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