Organ shortage prompts debate over compensating donors

[Clark]

http://www.sfgate.com/health/article/Organ-shortage-prompts-debate-over-compensating-5670431.php

Organ shortage prompts debate over compensating donors
Greta Kaul

Jessica Kastler will drive from her home in San Luis Obispo to San Francisco's California Pacific Medical Center this month to give a kidney to someone she doesn't know.

Kastler hopes her organ's recipient, whoever he or she is, is open to communicating with her after the transplant. But she's not expecting anything in return - not money or any other kind of compensation.

"I don't think there should be some kind of pay for a kidney," Kastler said. "That's kind of almost like paying for a kid - I don't think that's right."

Some doctors and patient advocates say that convincing more living donors like Kastler to donate is the only way to meet a growing demand for organs, especially for kidneys, in the United States.

More than 120,000 people in the U.S., 20 percent of them in California, are currently waiting for organ donations, according to the California Transplant Donor Network. The average wait time for a kidney is three to five years, and an estimated 18 people die every day waiting.

That long waiting list has some people arguing that living donors should be compensated, with money or some other benefit, to tempt more of them to come forward. Last week at Stanford, three members of the transplant community took up the contentious compensation debate, which was also a topic at last week's World Transplant Congress in San Francisco.

Selling human organs has been illegal in the U.S. since 1984, when Congress passed the National Organ Transplant Act. While it prohibits paying for an organ itself, the act doesn't ban paying for costs surrounding organ transplants, like transporting donors or paying for lost wages.

California has increased its rolls of deceased organ donors in recent years, primarily through policy changes and campaigns to increase public awareness. But only about 1 percent of deaths occur in a way that allows deceased donation. These deaths typically involve strokes, car accidents or homicides that render a person brain dead, said Tom Mone, a Stanford panelist and the chief executive of OneLegacy, a nonprofit based in Los Angeles that's the largest organ recovery organization in the U.S.

Organs and tissue from one deceased donor can save as many as eight other lives, but there simply aren't enough of those donors to make a dent in the waiting lists.

That's where living donors, the vast majority of whom are offering up kidneys, come in.

Huge demand for kidneys
Kidneys make up the bulk of demand for organs, and they're practical to transplant from living donors. Humans only need one of the two kidneys they're born with to be fully functional. Plus, kidneys from living donors typically last longer than kidneys from dead donors.

Dr. Sally Satel, a Washington, D.C., psychiatrist and American Enterprise Institute scholar who sat on the Stanford panel, argued in favor of testing a system of compensation to get more living people to donate.

When Satel learned she needed a kidney in 2004, her first thought was that she wanted to buy one.

"I didn't want to owe such a great moral debt to somebody," Satel said. "The more anonymous, the better."

Several leads fell through until a friend approached Satel and offered her a kidney, which Satel received in 2006. Satel acknowledges that she was lucky. Not everyone knows someone who can give them an organ.

Finding a living donor is the best way to prevent being on the national organ waiting list for many years. The list ranks people based on how badly they need a kidney - there's no preference for the rich or the famous. But wealthy wait-listers have more options. Some of them travel abroad to find black-market organs in countries like India, Pakistan and China.

Organ tourism has raised humanitarian concerns that the poor are coerced or forced to give up organs for cash. A system in Iran, in which the government regulates organ sales and compensates donors with money, draws criticism for taking advantage of the poor.

Satel wants Congress to pass a law, similar to one that failed in 2008, that would allow states to experiment with incentives for organ donors.

"We're not talking about cash; we're talking about some kind of in-kind incentive or reward," Satel said. Living donors could be compensated with retirement fund contributions, for example, or tuition reimbursement or long-term health insurance.

"It (would come) from a third party so that the sick person doesn't have to reach into his or her pocket at all. This means that the opportunity is open to anybody who needs an organ," Satel said. "If voluntariness is not sufficient, we should think about and move to an incentive system, or at least test it. Right now, you do it and your reward is that you have a special place in heaven. Why not be able to reward people who are able to do it?"

Limited support
Officials at the United Network for Organ Sharing, which manages the national organ waiting list, vaguely supported testing financial incentives in a statement a few years ago, said Anne Paschke, a spokeswoman for the organization.

But, Satel said, "no one who's a professional, meaning a member of the transplant community, is putting their foot in that crack and trying to kick it open."

Slippery slope
Dr. David Magnus, a Stanford professor of medicine and biomedical ethics who was on last week's panel, worried that compensation is a slippery slope. If a system of compensation was implemented and unsuccessful in producing more organs, he said, it could lead to more efforts to entice donors, chipping away at the 1984 act and ultimately turning donors into vendors.

That dilemma would only become more compounded over time, he said. More people are expected to need organs over the next several decades as the population ages and rates of Type 2 diabetes, which can lead to kidney failure, increase.

Ethical concerns aside, Magnus said the current system of altruistic donations from living donors and organ retrieval from the deceased works pretty well, and he doesn't think offering more incentives would lure enough donors to have much effect on the waiting list.

Benefits of donation
It's altruism that drove Kastler to donate and compels about 6,000 other living donors a year, according to the National Kidney Registry. Kastler thinks if people were better educated about kidney donation, more would volunteer.

The 34-year-old mother of three decided to donate a kidney in May, after learning a friend of hers had needed one. Her friend, a woman in her 50s, had no family members whose organ matched well enough for a transplant. The woman ultimately got a kidney and is doing much better, but Kastler said after learning more about kidney donation, she was moved to donate.

"I want to do something for somebody," she said. "If I can give somebody the gift of not going through dialysis or even help their life - I would want somebody to do it for me, and that's just the way I look at it. If it was me and my kids and we didn't match, I would hope to God that someone would" donate.

Organ recipient Amy Baghdadi said compensation for donors may already go beyond money. Baghdadi, a San Francisco resident who was diagnosed with a rare liver cancer in 2010, got a liver transplant from her mother's best friend's daughter, a woman whom she'd met as a child but didn't know well.

"We are like sisters now," Baghdadi said. "Our families are incredibly close. It was one of the beautiful things that came out of a pretty awful situation."