Winning the Waiting Game

Phyllis McGill lives in a garden apartment in Elmwood Park, N.J., where she cares for her 88-year-old mother, reads mysteries, collects decorative cat plates and waits for a stranger to see her plea on the Internet and offer her a kidney.

The 63-year-old woman with the deep, throaty laugh and the upbeat attitude—who once worked full time and loved to throw parties—has been on the national organ transplant list awaiting a kidney since 2001. Her odds there are frightening: 92,000 people—67,000 of them kidney patients—are awaiting organs from deceased donors, but last year only 9,914 got new kidneys.

It was McGill's daughter, who has a genetic kidney disease and cannot be a donor, who learned about a new website where online meetings between patients and strangers willing to donate while still living had led to more than a dozen successful kidney transplants. (Kidneys, like all transplantable organs except hearts, can be given by living donors.)

Elated, McGill went to the site, MatchingDonors.com, and posted her blood type, a brief personal history and a heartfelt plea. "If there is even a tiny chance I can find a Good Samaritan online," says McGill, "I want that chance."

With the need for organs growing at five times the rate of donations, Americans like McGill are going online, renting billboards, passing out leaflets and even joining a nationwide organ donor club to find someone who will keep them alive.

Some medical ethicists and transplant surgeons worry about the fairness of these unorthodox appeals that work outside the United Network for Organ Sharing (UNOS), the agency charged by Congress with fairly and impartially distributing organs from deceased donors to the sickest patients across the country.

Seeking Live Donors

More people need organs because more are developing diabetes, hypertension and obesity, and dialysis and other medical advances can keep them alive longer as they wait for transplants. But the number of UNOS donor organs is increasing only modestly, rising 6 percent in 2005.

People routinely wait three to seven years for an organ from UNOS, and 6,700 of them die each year. Under mounting pressure to expand its network, UNOS is considering a national registry of live donors that could dramatically increase kidney transplants in America. But it will take action by Congress to do so.

The registry would list patients along with their friends and relatives who wanted to donate a kidney but were not a match. Patients across the country could "swap" one of their donors who doesn't match for a donor who does.

"[In the United States,] we could do as many as 2,000 more kidney transplants a year by swapping donors," says Robert Montgomery, M.D., chief of transplantation at the Johns Hopkins Hospital in Baltimore and the lead author of a recent study that reported on the method's success. In the last five years, small programs at Hopkins, the New England Organ Bank and the Ohio Paired Donation Consortium have arranged about 80 such transplants.

Bill Suro, a 70-year-old Denver veterinarian who is awaiting a kidney, recently sent his blood samples and those of a close friend to Hopkins to see if his friend could be matched to another patient, and another donor matched to Suro.

"My relatives were ruled out as donors because of genetic tendencies, but my friend is willing to do this for me," Suro says. "It's pretty wonderful."

A national list of such donors would be "a thrilling proposition," says William Lawrence, director of patient affairs for UNOS. "These live-donor swaps would get people off the current waiting list for the organs, shorten the time for others on the list and keep some from ever going on it."

The law creating UNOS was not intended to prohibit live donations but to bar the buying and selling of organs. The proposed two-sentence amendment would clarify that exchanges between paired donors and patients do not involve money and thus would encourage other transplant centers to create their own paired donation programs. But the bipartisan bill is languishing in a Senate committee, and no one has come forward to sponsor such a bill in the House. While the bill has no opposition, "getting a little measure like this one on the agenda can be a monumental task," Lawrence says. And federal officials will not allow UNOS to begin to develop the registry without the change in the law.

It's that kind of delay that frustrates patients on the UNOS list and sends them searching for donors—through their own websites, in Internet chat rooms and at sites like MatchingDonors.

"I am leading half a life now," says Phyllis McGill, who climbs out of bed three days a week at 4 a.m., dressing in the early-morning darkness to be ready for the van that will take her to her four-hour dialysis treatment.

McGill had no misgivings about signing on with MatchingDonors. Though the site charges $595 for unlimited access, McGill says she didn't have to pay because the site waives the fee for patients who cannot afford it.

The site now lists some 3,000 potential donors and about 130 patients looking for a donor. A spokesman says MatchingDonors has been responsible for 23 transplants since 2004, and "at least 20 more are now pending."

Sandy Miller, 48, a teacher from Bowling Green, Ohio, last year donated a kidney to Angie Carranza, a young Denver doctor she met on MatchingDonors. Miller and Carranza are now fast friends.

A devout Catholic, Miller says, "I liked the idea of donating to Angie because she was a doctor, and I wanted to help someone who would help others." Donating a kidney, she says, "was incredible. I wish I could do it 10 more times."

A Question of Ethics

Some experts say patients who receive organs from people they meet through Internet or media appeals are cheating. "People should not jump ahead of others on the organ list just because someone likes their picture or is moved by their story," says Douglas Hanto, M.D., chief of transplant surgery at Boston's Beth Israel Deaconess Medical Center. Hanto, who formerly headed the ethics committee of the American Society of Transplant Surgeons, is one of a number of transplant surgeons who will not operate on patients who have met a donor online.

But Dan Brock, director of Harvard Medical School's division of medical ethics, says if the donors had not planned to give an organ until they were moved by a heart-tugging story or a dramatic public appeal, "it's hard to see what the complaint is. You didn't take away an organ that would have gone to UNOS."

He adds, "I think the issue is we just don't know yet whether this practice increases the organ supply."

Brock, like Hanto, fears that Internet organ donations, if left unregulated, could lead to the buying and selling of organs.

Suro, the Colorado vet hoping for a donor from the Hopkins program, is also listed on MatchingDonors. While the site attracts altruistic donors, he has heard from unscrupulous people as well.

"One of the calls I got was from an organ broker who said she could arrange a transplant for me in two weeks, if I would pay," he says. "I told her I didn't want what could be my last act on earth to be an illegal one." Suro also has been contacted "by people from India and Nigeria offering me organs, but I am very skeptical of those offers."

The ideal—and safest—"offer" is from family members or friends. Carlton English of Leesburg, Va., was 28 when he donated a kidney to his father, Carl, in 1992. Scores of relatives and friends offered to be donors for the information technology executive, but it was a gift Carlton wanted to give.

"My dad was my idol," says English, a Web consultant. "I didn't think twice."

His father died less than a year after the operation from an unrelated medical condition. But one of English's best memories is of the night before the transplant. "We were laughing, the mood was very lighthearted," he says. "I could feel this unspoken gratitude."

English says being a donor "makes you look at things differently. You feel more for other people. The donor gets so much more out of the transplant than the person receiving it. You wouldn't think so, but it is true."

Kidney patients are driving the growing need for transplant organs. Nonetheless, 17,200 people are awaiting a liver, 3,900 a heart and 3,300 a lung, making the need for more organs from deceased donors as critical as donations from living donors.

Special Treatment

Four years ago David Undis of Nashville, Tenn., founded LifeSharers (lifesharers.com). His idea: Give people who commit to being organ donors preferred access to organs if they need one. Membership in LifeSharers is free and open to anyone of any age, regardless of health, who agrees to donate organs to fellow members. If no member can use the organs, they go to UNOS.

"It's like a little insurance policy," says Jacqueline Marcell, 55, a writer and radio host in Irvine, Calif., one of 4,370 people who have joined the group. "What I like is that it's fair. And if you need an organ, you're going to have a better chance of getting one."

"Imagine if this were the law," adds Undis, a retired insurance broker. "Imagine if UNOS said starting next year we're not making any organs available to people who have not previously agreed to give up their own when they die. We could save thousands of lives every year."

UNOS, however, maintains that organs must go to patients with the greatest need, whether or not they are donors. Experts say until tens of thousands of people join LifeSharers, the odds are stacked against a donor match among members.

Sixteen years ago Daniel Nieboer of Annandale, Va., had about six months to live when he received the liver of a deceased donor. Since then, the 66-year-old father of four has been robust and active, just returning from a five-week trip to India and Kenya.

"An awful lot of people could be donors if they were willing," he says. "Everyone in our family is."

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