From the New York Times –
When Erika Royer’s lupus led to kidney failure four years ago, her father, Radburn, was able to give her an extraordinary gift: a kidney.
Ms. Royer, now 31, regained her kidney function, no longer needs dialysis and has been able to return to work. But because of his donation, her father, a physically active 53-year-old, has been unable to obtain private health insurance.
Like most other kidney donors, Mr. Royer, a retired teacher in Eveleth, Minn., was carefully screened and is in good health. But Blue Cross and Blue Shield of Minnesota rejected his application for coverage last year, as well as his appeals, on the grounds that he has chronic kidney disease, even though many people live with one kidney and his nephrologist testified that his kidney is healthy. Mr. Royer was also unable to purchase life insurance.
Officials with Blue Cross and Blue Shield of Minnesota refused to discuss Mr. Royer’s case because of privacy laws, but said in a statement that Minnesota residents who are rejected by private insurers can buy coverage through the Minnesota Comprehensive Health Association high-risk pool, which is what Mr. Royer said he did, though he is paying more for less comprehensive insurance.
The officials refused several requests for an interview, saying in an e-mailed statement that “healthy individuals who happen to have one kidney can and do receive coverage” through Blue Cross and Blue Shield as long as their test results are within medically accepted normal ranges.
Mr. Royer said he is baffled by the denial. “From my perspective, I’d be a good risk,” he said. “I’d just be putting in premiums and helping balance the system out.”
There is little data on how often kidney donors have trouble obtaining insurance, but advocates say the fear of being uninsurable may be a powerful deterrent to donation. A 2006 study done by an advocacy organization for transplant professionals found that 39 percent of transplant centers reported that they had had eligible donors who declined to donate because they feared having future insurance problems.
The health of living donors is seldom at issue: Though some research suggests that kidney donors may be slightly more prone to develop high blood pressure as they age, long-term studies have found donors live as long as other healthy people. One study reported that donors live even longer.
Most insurers maintain that prior kidney donation does not affect coverage decisions or premiums, but while transplant cases like Mr. Royer’s are rare, advocates and social workers who work closely with donors say the problem may be more common than is recognized. A review study published in 2007 by Canadian researchers found that as many as 11 percent of them have encountered problems with life and health insurance coverage.
It’s a problem with implications for thousands of people. In 2008, the last year for which figures were available from the National Institute of Diabetes and Digestive and Kidney Diseases, 17,413 kidney transplants were performed, most of them (11,382) from cadavers. But there were 87,820 people awaiting a kidney transplant as of February 2011, and another 2,249 waiting for both a kidney and a pancreas.