Most people would agree that donating an organ to someone in need is a selfless act. Giving up a kidney or part of a liver is a risk people take so that someone else may live a better, longer life. • But living donors can find themselves unable to find affordable — or any — health insurance after the donor surgery when insurers claim that the donation is equivalent to a pre-existing medical condition. • People who are insured through large employers generally aren't affected, but those who try to find coverage on the individual market or who have coverage through a small business may run into this problem.
"It's absurd," says Matthew Cooper, director of kidney transplantation at the University of Maryland Medical Center in Baltimore. Transplant centers put potential donors through a comprehensive battery of medical tests before permitting them to give up an organ. "These patients are handpicked. They're some of the healthiest people around."
Angie Korsun, administrator of the transplant program at Tampa General Hospital, noted that denying coverage could discourage kidney donations, which "is going to increase health care costs because it leaves people on dialysis much longer, which is expensive.''
A study published last year in the Journal of the American Medical Association examined the long-term mortality of more than 80,000 live kidney donors between 1994 and 2009. It found that their death rates over six years were no higher than the rates for similar individuals who hadn't donated a kidney. Experts say the results are in line with other studies that have shown that donating an organ doesn't appear to increase people's risk of illness or death.
"The reality is you can be born with one kidney and live a normal life,'' Korsun said. "I don't understand the clinical reasoning behind'' denying coverage.
When Beth Stary-Bain decided to donate a kidney to her mother nearly four years ago, she was covered under her ex-husband's policy, which, under the federal law known as COBRA, she could keep for 36 months after their divorce.
After the operation, which went off without a hitch, the Wisconsin woman, now 50, tried to buy an individual insurance plan. Once they learned she had had a nephrectomy (surgical kidney removal), two carriers turned her down. A third offered her a plan — for $800 a month.
"I was really surprised," she says. "I didn't realize that because I'd donated a kidney I was considered unhealthy."
Shortly before her COBRA ran out, Stary-Bain found a job with health coverage, working for a health insurer.
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More than 110,000 people in the United States are waiting for an organ transplant. Nearly 90,000 of them are waiting for a kidney, but living donors also can donate a portion of their liver, which will regenerate, a lobe of a lung or part of their pancreas or intestine.
Transplants using living donor organs are often more successful than those using organs from deceased donors. The number of living donors has more than tripled in the past 20 years — there were 6,563 in 2010 — yet the increase isn't nearly enough to meet the demand.
To encourage more people to donate, health policy experts say barriers must be removed, including those involving insurance. Although a living donor's evaluation, surgery and immediate postoperative care are covered by the recipient's insurance, concern about coverage hassles down the road is enough to deter some people from donating, according to a 2007 review of research.
According to Susan Pisano, a spokeswoman for America's Health Insurance Plans, a trade group, donating an organ is not sufficient grounds on its own to lead to a denial of coverage.
But consumers and advocates tell a different story. The same 2007 review found that between 3 and 11 percent of respondents had trouble getting insurance after donating an organ.
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Rebecca Hays, a living-donor social worker at the University of Wisconsin Hospital, said some donors tell her insurers refuse to cover anything related to the donation for a year. "More often I hear from people who have been denied insurance and they don't know what to do."
TGH's Korsun said she occasionally hears of donors being denied insurance.
Under provisions of the health care overhaul law that take effect in 2014, insurers will no longer be able to deny people coverage because of pre-existing conditions, nor charge more.
In the meantime, donors can consider the pre-existing-condition insurance plans created under the new health law, says Dolph Chianchiano of the National Kidney Foundation. But you must be uninsured for six months to qualify.
Times staff writer Irene Maher contributed to this report.