The Transplant List Grows Longer

From the WebMD Archives

March 27, 2001 (Washington) -- Earlier this month, Americans passed a medical milestone in which no one takes pride.

According to the United Network of Organ Sharing (UNOS), which works with the U.S. Department of Health and Human Services, more than 75,000 patients are waiting for a transplant. Everyday, some 15 of them will die because an organ isn't available.

"The magnitude of the organ shortage is sobering. Of those 75,000 people, probably less than a third will get the transplant they need this year. And each year, that gap widens," says UNOS president Patricia Adams, MD.

Yet seemingly, this is an avoidable tragedy. People die everyday. Why can't their organs be harvested to treat those who have no other alternative?

The answers are complex, and, experts say, have as much to do with superstition as science. For instance, organ donation doesn't disfigure the body and won't interfere with your funeral, although many fear that.

In addition, organs aren't as abundant as one might think. Most people are either too sick or old when they die to be viable donors. The "ideal" candidate is a young person who is brain dead, in other words, the victim of a traumatic injury. But there are fewer of those thanks to seat belts or motorcycle helmet laws.

"The solution is clearly to try to increase the number of people who donate since we already know on the donation side ... only about half the people who are in a position to donate choose to do so when asked," Jon Nelson, director of the Office of Special Programs at the U.S. Health Resources and Services Administration, tells WebMD. Nelson's agency oversees the federal transplant program, which consists of dozens of local procurement organizations.

Part of the problem, Nelson says, is that getting people to commit to donation is a delicate matter. Ultimately, the donor, if he or she is deceased, may not have a thing to say about it. That means the person trying to procure the organ generally must work with the grieving family, a situation requiring great tact and patience.

"It's very much an artful thing. It's a sensitivity that an individual might have that predisposes them to be successful [in convincing the family]," Nelson says. Ironically, medical science has itself become a problem in that doctors are increasingly efficient at making transplants work and coming up with new uses for them, but the pool of donors really hasn't changed much in the last decade. According to UNOS, the number on the waiting list in 1990 was around 20,000, but it grew to 73,000 by the year 2000.

One relatively new way around the shortage is state registries, which contain information about a donor's wishes and would, in theory, reduce the need to depend on the family or a driver's license, which might get separated from the body. Some 16 states have these programs, including Louisiana and Illinois.

Still, even though up to 90% think organ donation is a good thing, only about half consent.

In Europe, Nelson says, the law favors presumed consent within limits. In the U.S., the family's wishes almost always prevail.

Until more donors step forward, the U.S. is stuck with a controversial allocation system developed by the former Clinton administration and put into place last year. It favors the sickest patients in the region, instead of providing an available organ to the nearest transplant center. That angered many who had worked hard to support their local programs.

"So the fear was the all the good work that you were doing yields nothing to your local community," Nelson says.

Meanwhile, new Health and Human Services Secretary Tommy Thompson says the new emphasis has to be on organ donation. "It's remarkable, and it's absolutely a passion of his," Nelson says.

"American generosity is unparalleled," Thompson says. "Let's use that generosity to increase organ donation and make miracles happen through transplantation."

Plenty of miracles are needed. According to UNOS, there's a shortage of nearly 50,000 kidneys alone. About 17,000 livers are needed.

While it's against the law to buy or sell organs, some efforts are being made to help live organ donors defray some of their expenses. Earlier this month, a bill passed the House that would cover travel and subsistence costs. The legislation, now in the Senate, would provide $5 million annually to states and organ banks who need to bring in donors.

Is this an ethical problem? "I'm not for buying organs. I'm not for payment, but I am for handling reasonable costs and making it convenient when you have to do this," says Arthur Caplan, PhD, director of the Center for Bioethics at the University of Pennsylvania in Philadelphia. "I think everybody understands that there's no incentive to make your kidney available [just] because someone's going to give you a free ride to the hospital," Caplan tells WebMD.

Various schemes have been proposed to increase organ supply, including covering funeral expenses for donors, or setting up an insurance fund for the family, or perhaps even some kind of a scholarship.

"Everybody's tried in many ways to game the situation and come up with something that's palatable and ethical and legal, but thus far, it's always come back to the fact that buying and selling of organs is illegal," Edward Nelson, MD, a transplant surgeon at the University of Utah in Salt Lake City, tells WebMD.

What about the possibility of getting a prisoner to donate an organ in return for an earlier parole?

"The main reason that's a terrible idea ... is prisoners have the highest rates of infectious disease of anybody," Caplan says.

There are new technologies to "grow" organs for transplant -- literally -- from the ground up by using primitive "stem cells" as building blocks. So-called "xenotransplants" would genetically modify organs from pigs and adapt them to humans.

"These high-tech ... solutions to the organ shortage, I would love to see one make a significant impact, but I don't think it's practical for us to depend on that," says Nelson, who's also chairman of the UNOS ethics committee.