Great Strides 2008
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New Data Reveals Growing Challenges in Access to Care


Source: Annual Cystic Fibrosis Patient Survey, 2008

Like many teenagers with CF, Emma (last name withheld) depends on a daily regimen of medications to stay healthy. She recently had to battle her disease for over a month without a full supply of treatments, after a change in her family’s insurance made one of her crucial drugs unaffordable. A recent survey issued by the CF Foundation showed that Emma’s situation is not unique. More and more people with cystic fibrosis are being forced to cut back on their medications because they simply cannot afford them. The 2008 survey found:

In addition, although 99 percent of people with CF have some form of health coverage, a growing number are finding their coverage does not meet their needs:

To help address the problem, the CF Foundation is making elected officials aware of the growing challenges many people with CF face. As lawmakers consider national healthcare reforms, the Foundation will recommend specific legislation to improve access to affordable care for CF patients. These include protections against high out-of-pocket costs and lapses in care, and greater commitment to making new treatments available to patients at a reasonable cost.