Couple with cystic fibrosis learn a hard lesson in health care
Their story -- of a young couple whose common illness brought them together and whose love now drives them to stay alive -- was first reported two weeks ago by CNN. The story helped pressure UPMC and Kentucky Medicaid to strike a deal within days, after three months of leaving
But the Pragers' story also illustrates a sensitive debate within the transplant community: Which patients are transplant centers willing to risk giving a rare, healthy organ?
"The problem is, you've got not enough organs for the number of people who need them," said
The reason the Pragers had to come to
Studies show cepacia patients' post-transplant survivability is not as good as patients without the bacteria. Still, other studies show that patients with the species of cepacia that the Pragers have -- known as B. multivirons -- tend to do as well as if they did not have the bacteria.
"I'm an example that people with cepacia can do well with a transplant,"
But most of the 1,000 cystic fibrosis patients with cepacia in
A stark line was drawn in 2008 after research by
But his study had the opposite effect, and now few transplant centers will attempt them.
Some larger transplant centers, however, were emboldened by the data.
Outcomes are closely monitored by the government agencies overseeing transplants, she said. "If you're a small volume transplant center and you have one death, it can significantly affect your ability to continue to do transplants."
"The decisions-making and organ allocation processes are incredibly complex and admittedly imperfect,"
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