Short of dying to save someone else, giving up a kidney or a piece of your lung is the ultimate sacrifice. Yet some people who’ve become organ donors are finding that their good deeds are, in a sense, being punished.
Vicky Young of Arizona is learning this lesson.
In 2004, she donated a kidney to her sick boyfriend. Four years later, she was diagnosed with a chronic disease affecting her remaining kidney. So far, Young has racked up about $25,000 in out-of-pocket expenses for treatment of the chronic disease. None of the out-of-pocket tab has been covered by public or private health insurance. Young continues to pay some of the ongoing costs connected with the kidney complications.
Young says the transplant center (which she declined to name) told her that if any problems cropped up, they would be covered by her boyfriend's health insurance plan -- the federal Medicare program.
"But that hasn’t happened. I just feel like the system is not situated for adverse affects of a surgery like this,” Young says.
Thousands of organ donors
Every year, more than 6,000 people become living organ donors in the United States, according to the U.S. Department of Health and Human Services. Three to 11 percent of these donors report that they've had some kind of trouble getting health insurance after their procedures, says Connie Davis, chairwoman of the Department of Health and Human Services’ Living Donor Committee.
Living donors go through a battery of tests to make sure they're in good health before an operation. And organ donors don’t necessarily live shorter lives following a transplant. A study of 80,000 live kidney donors between 1994 and 2009 found that their death rates were no higher than the rates for similar people who hadn't donated a kidney. The study was published in 2010 in the Journal of the American Medical Association.
“The perception is that people having one kidney might be at a higher risk for something, although there is no proof of that,” says Davis, a professor of medicine in the nephrology division at the University of Washington.
The rate of uninsured living organ donors is lower than the rate of uninsured people in the general population. And because medical records are private, it’s hard to know why organ donors have been turned down for health insurance.
The role of private insurers
Susan Pisano, vice president of America’s Health Insurance Plans, a major trade organization for private health insurers, told insuranceQuotes.com that the group's members don't have rules in place that would deny health insurance if “being an organ donor was their only health issue.”
“The companies we talked to did not indicate that there would be a problem for someone who’d want insurance after being an organ donor,” Pisano adds.
Medical expenses associated with a living organ donation typically are covered by the recipient’s health insurance or by the Organ Acquisition Fund of the transplant center where the organ donation took place.
'The rules are not clear'
Young’s situation is a little different. With a kidney operating at 41 percent, she was diagnosed with chronic kidney disease four years after her kidney donation. She says there's no history of kidney disease in her family; she speculates that her boyfriend was given the stronger of her two kidneys, leaving her with an organ that was more susceptible to disease.
Medicare, which is how her boyfriend paid for the operation, picked up the cost of the organ transplant. But Medicare covers complications for only the first six months after a donation, according to Davis. After that, she says, “the rules are not clear.”
“Again, there is no uniform policy on how the needs of the donor are covered, not at centers, not in payer's policy ... and not at the level of the federal government,” Davis says. “This is an issue that our society should discuss.”
Davis says some transplant centers will pick up the expenses for health complications that happen as a result of kidney removal, sometimes even 20 years after the fact.
Young says she has sent letters to the transplant center in hopes it would help her pick up the costs of treating her kidney disease, along with the depression and the leg nerve damage that she says are a direct result of the transplant. Those letters, she says, have gone unanswered.
“I guess if they paid for my treatments, they’d be admitting fault or that they did something wrong,” Young says.
Young says she was told little before the transplant about what health insurance would and would not cover. Young has health insurance through her employer, a private liberal arts school, but that insurance only goes so far, she says.
Young says her condition has improved since her initial diagnosis. Her kidney function is at about 55 percent, up from 41 percent. She praises the work of her kidney doctor. But she says she still gets exhausted easily, making her job as an educator more difficult.
Worse yet was telling her significant other about her kidney disease.
“When I disclosed it to him, it knocked the wind out of his sail,” Young says. “There was a lot of guilt, a lot of anger at the system.”