LifeSharers offers one way to increase organ donations

The network effect is an interesting concept, experts say. But some are uneasy about it, and even those who like the idea doubt it's workable.

By Susan J. Landers, amednews staff. July 14, 2003.

Washington -- David J. Undis, executive director of LifeSharers, had an idea he thought would increase the number of organ donors.

Many think his brainstorm is a good one, but most agree it won't work. It has triggered both controversy and curiosity.

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Undis, who has no need of a donated organ for himself or for anyone he knows, was reading about the organ shortage when he decided an answer might lie in a computer concept called the "network effect."

"A good example of the network effect is Microsoft Windows," he explains. "The more people who use Windows, the more valuable it is to learn. People say the standard 'qwerty' keyboard is another example."

Undis came up with LifeSharers about a year ago. Here's how it works: When people join LifeSharers, which is free, they agree to donate their organs at death. These organs will be offered first to other LifeSharers members. If there are no suitable recipients among the group, the organs go to someone else.

Membership in LifeSharers is free.

LifeSharers is not the first to pursue a quasi-club membership approach to organ donation, Undis points out. But until the Internet came along there was no practical way to make the system work.

"About 80% of the organs transplanted in America go to people who haven't agreed to donate their own organs," said Undis. "That's just not fair. It's also one of the big reasons there is such a large shortage of organs. If you couldn't get a transplant unless you'd already agreed to donate your own organs, everybody would sign a donor card and we wouldn't have over 6,000 Americans dying every year waiting for transplants."

Reality check

LifeSharers has nearly 800 members. In contrast, the United Network for Organ Sharing, the federally contracted organization that manages the nation's transplant system, has a list of nearly 82,000 people who need organs. From January through March of this year only 6,273 people received donated organs.

In order for LifeSharers to work, it would have to enroll hundreds of thousands of people. A large pool is needed since only about 2% of people who die in hospitals are suitable donors.

Only 2% of people who die in hospitals are suitable organ donors.

Undis has approached UNOS. "We asked if they could modify their database to add a column to their waiting list that indicates a person is a member of LifeSharers. So far they have declined to do this, but eventually, I think they will," he said.

UNOS, however, has several concerns about LifeSharers and doesn't plan to embrace its concept.

"While UNOS recognizes the right of individuals to direct their organ donations to particular recipients, hospitals or physicians, it has historically opposed the idea of directing donations either toward or away from classes of individuals," said Mark D. Fox, MD, chair of the UNOS ethics committee.

Dr. Fox questions whether the fact that LifeSharers is open to all comers makes a big difference.

"The Catholic Church is also open to anyone, so could we say, 'I just want my organs to go to Catholics'?" said Dr. Fox. "When you tease it out, I still think there is a problem in saying that becoming a member of this class is a reason we ought to give it priority."

A good idea, but ...

Meanwhile UNOS has asked Dept. of Health and Human Services attorneys to determine if the class of individuals proposed by LifeSharers is acceptable under the federal Uniform Anatomical Gift Act that governs organ donation, said Dr. Fox.

UNOS has also worked for years to develop a fair system of organ distribution with the most needy recipients at the top of the list. "There is merit to our existing allocation system that in general shouldn't be overridden unless there is a compelling moral reason to do that," said Dr. Fox.

But the LifeSharers concept appeals to many people. "I think a program like LifeSharers is a good idea," said Robert Sade, MD, a cardiothoracic surgeon at the Medical University of South Carolina. "I just wish a large national organization was doing it rather than a single person who has a good heart and wants to do something positive to change the situation."

Undis said he has funded LifeSharers himself with the exception of $200 or $300 in donations.

"Those who agree to donate have stepped up to the plate and made a statement," said Thomas Peters, MD, a transplant surgeon and director of the Jacksonville (Fla.) Transplant Center. "While I think that organ donors deserve tangible recognition, I don't think this is the way to go about it."

Harold Kyriazi, PhD, a research associate at the University of Pittsburgh Medical School, said he thought the concept of LifeSharers was "brilliant" but allowed, "I don't know whether any transplant surgeon or hospital administrator would give preference to a LifeSharers member who is not in critical condition over someone who is in critical condition."

UNOS does take some steps toward a LifeSharers' approach. In addition to directed donations, its policy gives preferred status to an individual who has been a living kidney donor and later needs a kidney transplant.

Dr. Fox recommends exploring similar ways to provide special considerations for donors. But he asks, "Isn't there a way to do this without bastardizing the allocation system?"

Undis admits he didn't know what he was getting into when he started LifeSharers. "What surprises me the most is how political this is. I had no idea that anyone could possibly be against this idea."