Donating a kidney is a selfless act and it is going to save a life.

But even before the Affordable Care Act, it had pitfalls if you wanted to add or change health insurance. In the future, the only option could be state Medicare programs, which many doctors are refusing to accept now.   Under the Patient Protection and Affordable Care Act, insurance companies can no longer refuse health insurance to live kidney donors or charge them a higher insurance rate. But, as with 'If you like your doctor, you can keep your doctor', the rules may change at any time, making donors stuck with nothing but government programs and the inability to get an appointment.

And insurance companies clearly penalize donors and have done so for decades.

Yet there is no evidence that donors have increased health risks, it is simply the precautionary principle. In the future, when health insurers cannot remove people and there are caps on cost, that principle is going to be even more evident - insurance companies will need to profit from high costs for healthy people in order to offset existing patients, they aren't going to want to add new ones.

Regardless, it could negatively impact the likelihood of live kidney donation.

Dorry Segev, MD, PhD, of the Johns Hopkins University School of Public Health, and colleagues surveyed 1046 individuals who donated a kidney at their center between 1970 and 2011. Participants were asked whether they changed or initiated health or life insurance after donation, and if they had any difficulty doing so.

Among 395 donors who changed or initiated health insurance after donation, 27 (7 percent) reported difficulty. Among those who reported difficulty, 15 were denied altogether, 12 were charged a higher premium, and eight were told they had a preexisting condition because they were kidney donors.

Among 186 donors who changed or initiated life insurance after donation, 46 (25 percent) reported difficulty. Among those who reported difficulty, 23 were denied altogether, 27 were charged a higher premium, and 17 were told they had a preexisting condition because they were kidney donors.

The results suggest that a high proportion of kidney donors may have difficulty changing or initiating insurance, particularly life insurance. The findings portend serious problems for the future. 

“Kidney donors are among the healthiest individuals in the population. It's such a shame that some insurance companies are giving donors a hard time, often because of a misinterpretation that the normal biological changes that occur after donation are an indication of kidney disease,” said Dr. Segev. “This is a reminder that we need to remain strong advocates for our donors, and they need to remain strong advocates for themselves, educating insurance companies when these situations arise.”

Citation: “Difficulty Obtaining Insurance After Live Kidney Donation.” Brian J. Boyarsky, Allan B. Massie PhD, Jennifer Alejo, Kyle J. Van Arendonk, Spencer Wildonger, Jacqueline M. Garonzik- Wang, Robert A. Montgomery, Neha A. Deshpande, Abimereki D. Muzaale, and Dorry L. Segev. American Journal of Transplantation;July 16, 2014 DOI: 10.1111/ajt.12819.