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:
- 25 percent of CF patients skipped doses of their medicine or purposefully took smaller doses because of cost, a 4 percent increase over 2007.
- 18 percent of CF patients delayed seeking medical care because they worried about cost, up 5 percent from 2007.
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:
- 42 percent of CF patients said their biggest concern is rising out-of-pocket costs.
- Nearly half of CF patients report out-of-pocket expenses on medications, enzymes, vitamins and supplements totaling $200 or more per month, up from 27 percent in 2007.
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.