How far is too far in the search for organ donors?

By Carol M. Ostrom
Seattle Times staff reporter

	STEVE DYKES Kidey patient Bob Hickey shows Dr. Adolfo Villar his arm during a visit to a Denver dialysis center earlier this month.
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So when he discovered MatchingDonors.com, a fledgling Internet company that promised to help him find a living organ donor, he was exhilarated. But Hickey, a former health-care executive now living near Vail, Colo., hesitated at the company's $295 monthly fee. Was it right to do something many others in his situation couldn't afford?

"Ten seconds later, I said to myself, 'Wait, you idiot, what are you doing?' " says Hickey, 58, a once-robust runner who now can barely climb a flight of stairs. "I'm dying of this disease. I've got to do what I've got to do to take care of me."

MatchingDonors.com is among the recent responses to a stark fact: Every year, about 6,000 people in critical need of a transplant die waiting for an organ.

Some celebrate such enterprises as creative, entrepreneurial responses to this deadly disparity.

Others see them very differently. Critics say they extend false hope to the most vulnerable. Ethicists call them everything from "naive" to "truly despicable."

Either way, such edgy, controversial ventures intersect with the established organ-donation system at a common goal: the critical need to encourage people to donate their organs, before or after death.

Other proposed solutions in the past few years have ranged from modest — Wisconsin's $10,000 tax deduction for living donors — to deeply controversial — payment for donated organs, now illegal under federal law.

About 84,000 people are waiting for kidneys, livers, pancreas glands, hearts, lungs and intestines on a nationwide list coordinated by the United Network for Organ Sharing (UNOS), a private nonprofit organization. The waiting list has nearly tripled in a decade.

Last year, only about 28,000 organs were available for transplant. Live donors, most giving kidneys, now outnumber deceased donors.

"In some ways, transplantation is a victim of its own success," says Dr. William Marks, medical director for LifeCenter Northwest, the region's organ-procurement agency, and head of transplantation at Swedish Medical Center. "We can offer many things that were just unthinkable in the not-too-distant past — and we can do them safely, and that creates a demand."

Marks is critical of enterprises such as MatchingDonors.com. But he sees the need to create new incentives for donors. "We have to come up with something that's innovative," he says. "My own prejudice is that we may have pushed altruism to the limits."

Innovation takes hold

Massachusetts entrepreneur Paul Dooley, who helped create an Internet company advertising college job applicants, had the brainstorm for MatchingDonors.com.

His elderly father needed a kidney but wouldn't survive for long on the transplant list, Paul Dooley told his own doctor, Jeremiah Lowney. The two came across a poll that said nearly 25 percent of Americans would consider donating a kidney, part of a liver or a lobe of a lung, while they were alive, to a complete stranger.

In January, MatchingDonors.com was born, focusing on finding live donors for patients. "It's an advertising venue," says Dooley, a sort of PR firm that promises to create press releases and contact churches, clubs and other groups that recipients identify as likely meeting places for potential donors.

Hickey is among 38 patients and 57 potential donors who have signed up, Dooley says. While the site builds membership, many of the patients aren't being charged the $295 monthly fee, he says. He hopes advertising will help the site continue some free memberships.

MatchingDonors.com doesn't screen patients or donors, and once they connect, they're on their own. "We're a matching service, a dating service," he says.

The match is permitted under federal rules allowing a live donor to designate a recipient, no matter where the recipient is on the official organ-transplant list.

Another enterprise aimed at bringing in more donors, LifeSharers, is a "club" based on an intuitively appealing principle: Those who pledge to donate organs should be first in line to get them.

Members of this free club pledge to donate after death, and carry a card saying they want their organs to go only to other Life-

Sharers members — unless there is no match — allowing those recipients to skip ahead on the national waiting list.

Founded by Dave Undis, a 49-year-old retired Tennessee insurance executive two years ago, LifeSharers is still more concept than reality. About 2,100 people have signed up.

Once the club reaches a certain size, Undis believes, people will realize they've got to join or run the risk of being pushed down the list if they ever need an organ.

Steve Calandrillo, 30, doesn't need a transplant, but he signed up with LifeSharers because he says it's a "fundamental issue of fairness" that people who agree to donate organs should get priority if they need one. It's an "irony and injustice," he says, that most organs go to people who haven't signed up as donors.

Calandrillo, who teaches law and medicine at the University of Washington, thinks the incentive offered by LifeSharers could be a powerful motivation to donate.

Says Undis: "If it was the law of the land that people who didn't sign organ-donor cards went to the back of the list, you wouldn't have the shortage of organs."

Critics weigh in

	DEAN RUTZ / THE SEATTLE TIMES Marie Reynolds of Seattle spends four hours undergoing kidney dialysis three times a week at Northwest Kidney Centers. She has been waiting for a kidney for nearly five years. Unable to work since 1999, she says she can't afford to advertise for a donor.

The national waiting list, which ranks patients in part by medical urgency and time spent on the list, is "an honest list, run as objectively as we can possibly make it work," says Marks, of the regional organ-procurement agency.

Efforts to circumvent it, he says, could do immeasurable harm.

"The one that's truly despicable is MatchingDonors.com," Marks says. "It exploits the needs and desperation of recipients."

The organization raises "false hope," he says, and possibly worse. "They are setting people up for all sorts of social interactions, the consequences of which they can't even imagine." For example: manipulation of a "naive" donor by an educated recipient could shortcut careful evaluation by a transplant center, harming the donor.

MatchingDonors.com offers patients a discounted yearly membership for less than $9 a day. But most transplant patients, Marks says, are "chronically ill individuals; they're out of work, paying for their medications — they don't have $9 a day."

Consider Marie Reynolds.

Reynolds, 60, of Seattle's Madison Park, has been waiting for a kidney for nearly five years. On disability, she pays for medications, doctor visits, insurance and helps out two grown daughters and a grandson, who live with her.

At Northwest Kidney Centers, where she undergoes dialysis for four hours three days a week, she's saddened when familiar faces vanish before a chance for a transplant.

Twice recently, she was called by the transplant team at Virginia Mason Medical Center, but the kidneys went to someone else.

Unable to work since 1999, with any spare money going to help her children, she can't afford to advertise for a donor, Reynolds says. "I would if I could," she adds.

Dr. Mark Fox, chairman of UNOS' ethics committee, notes that organs are accepted from "all walks of life." Given that, he said, "I'm not sure we want to build a system that's reserved for the well-to-do."

Although LifeSharers is free to members, critics say it, too, encourages a two-tier system.

LifeSharers creates a "restricted class" of patients for special consideration, Fox says, bypassing the existing allocation system. Its members, he says, would go onto the national list if they ever needed a transplant and would accept organs from anyone, but want to give only to other group members.

While the current UNOS system allows donors to designate an individual recipient, it doesn't allow designations to a particular group, faith or race, Fox says.

The regional organ-procurement agency won't honor requests that organs go to unnamed members of a group or club, Marks says, because "that would be the equivalent of someone coming in and saying 'I only want to donate to someone who's black, or in this church, or lives in this county.' "

Thomas Murray, president of the Hastings Center, a bioethics-research institute, says an enterprise such as LifeSharers attracts certain people whether it intends to or not: for example, those who are more likely to be computer-literate, readers, and those more trusting of the medical system.

LifeSharers' Undis counters: "This is an organization where anyone can join. ... It doesn't cost anything to join. We are anything but 'exclusive.' "

MatchingDonors.com's Lowney says he doesn't understand objections to donors wanting to give to someone in their "club," whether it's LifeSharers or another group.

"What if I just wanted to pick someone from my religion? Is that bad? Why is it bad to say I want to give to a fellow firefighter?"

Lowney acknowledges that such directed donations could bypass would-be recipients on the waiting list who are sicker.

"It would be nice to help everybody," he says. "But when you eliminate someone from that list by giving them an organ, you are helping everybody ... because everybody moves up."

Other alternatives

	Robert Samuel Smitty, with his wife, Ryan, and son Anikin.

For years, organ-transplant experts have struggled to bring more donors into the system without opening the door to ethical abuses.

Several states are pursuing organ-donor tax deductions similar to Wisconsin's law, says its co-sponsor, Rep. Steve Wieckert.

In Maryland, Johns Hopkins Medicine runs a kidney-exchange program: If a patient needing a transplant brings in a living donor who doesn't match, the program will try to "swap" with another pair in similar circumstances.

Other centers, including Swedish, run similar programs.

At the University of Pennsylvania, researchers are studying how changing the nature of conversations with families — who can now veto a deceased person's pledge to donate — could encourage more organ donation, says Art Caplan, director of the university's Center for Bioethics.

Others have proposed changing the current system, which assumes people don't want to donate unless they've indicated otherwise, to one in which everyone is presumed to be a donor.

Perhaps most controversial is the notion of cash for organs.

The American Society of Transplant Surgeons, as well as a committee of the American Medical Association, has advocated pilot projects to study paying for organs.

Among the calls Bob Hickey received were two from people overseas who clearly wanted to sell him a kidney. But not only is it illegal, he says, he would worry about the organ's health, and about possible coercion of the donor.

Caplan, the University of Pennsylvania bioethicist, ticks off the problems with payments for organs: The lure of cash might result in potential donors being less than honest about being in risk groups, or being forced by cash-strapped relatives to "donate."

And it might result in fewer donations. Would-be organ donors or families giving consent could be turned off by offers of money for what now is a purely altruistic act.

"Significant numbers of people see this as ethically repugnant," says the Hastings Center's Murray.

Tracking down a kidney

So far, 27 people have called Hickey to talk about giving him their kidney. Most weren't good matches. But one, Robert Samuel Smitty, a 32-year-old photographer from Chattanooga, Tenn., thinks he may well give a kidney to Hickey, a man he's never met.

Smitty was on his computer, signing up to be an organ donor, when he saw Hickey's plea. "I was just in that frame of mind when I read about his situation," he says. Smitty says he had already decided to give a kidney to someone but didn't want it to go to just anyone.

"I'm very family oriented; I was hoping to find somebody who is also family oriented," says Smitty, the father of two. He also wanted a promise, which Hickey has made, that whoever got his kidney would reimburse him for lost wages, which is allowed under the law.

So far, all he knows is that he's the right blood type, and is big enough to give an organ to Hickey, who is 6-foot-5. He hasn't gone through any screening yet, but he plans to talk with Hickey's transplant coordinator soon.

"I'm just imagining how good it'll make me feel," he says. "It makes me feel good, just trying."

Hickey is hopeful the match will be a go and says he's made peace with his ethics. When he gets well again, he pledges, he'll help MatchingDonors.com raise money to sponsor patients who can't pay.

"I don't have any shame about saying it's advertising. I need to do something to help myself get an organ donation as fast as I can," Hickey says. "If we go on a list managed by the transplant center and the government, we don't have anything we can do ... we just sit there waiting for someone to die."

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com

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