Live Kidney Donors Face ‘Pointless’ Insurance Troubles

“Living donors are some of the healthiest people in the United States. They’re heavily screened before they’re approved for donation and should be easily insurable,” says study leader Dorry Segev, M.D., Ph.D., M.H.S., an associate professor of surgery and epidemiology at The Johns Hopkins University.

Under terms of the Patient Protection and Affordable Care Act (ACA), health insurance companies can no longer refuse to provide health coverage to living kidney donors or charge them a higher rate. But the ACA doesn’t apply to life insurance, which the study shows was more commonly a source of difficulty than health insurance.

Little evidence suggests any extra health risks or a shortened life span after live kidney donation, says Segev, an abdominal transplant surgeon, but he and his colleagues had heard stories from their patients about insurance troubles after donation. Seeking hard data about such anecdotal tales, the researchers surveyed 1,046 people who donated a kidney at The Johns Hopkins Hospital between 1970 and 2011. They asked them whether they had initiated or changed health or life insurance in the years after their donation and whether they had any problems with the process. They also explored possible reasons for their problems.

Reporting online July 16 in the American Journal of Transplantation, Segev’s team says that among 395 donors who tried to initiate or change health insurance after donation, 7 percent (27) said they faced problems. Some 15 were denied health insurance altogether, 12 were charged a higher premium and eight were told that donating a kidney was a “pre-existing condition.”

Among 186 donors who tried to initiate or change life insurance after donation, 25 percent (46) reported problems: 23 were denied life insurance altogether, 27 were charged a higher premium and 17 were told that donating a kidney was a pre-existing condition.

Segev notes that some of the hurdles may have been a result of misinterpretation of kidney function tests needed for securing some health or life insurance policies. Although routine kidney function test results change after kidney donation, results aren’t necessarily a sign of kidney disease, he says. Nevertheless, he adds, donors and their transplant center doctors are often put in the position of having to explain these results to insurance companies and argue for coverage.

“There are about 100,000 people in the U.S. who have altruistically donated a kidney,” Segev says. “Insurance companies should make a strong effort on behalf of people who perform this selfless act to make sure that they’re well taken care of.”

Other Johns Hopkins researchers who participated in this study include Brian J. Boyarsky, Allan B. Massie, Jennifer Alejo, Kyle J. Van Arendonk, Spencer Wildonger, Jacqueline M. Garonzik-Wang, Robert A. Montgomery, Neha A. Deshpande and Abimereki D. Muzaale.

This work was supported by the National Institute of Diabetes and Digestive and Kidney Diseases (R01DK096008).