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Living-donor Web sites connect those needing a transplant with strangers willing to help

The Baltimore Sun

Richard Cohen figured you could find just about anything you wanted these days, no matter how elusive or obscure, in the quick zip of an Internet search. So, with his health declining and all other options failing him, he typed into Google: I need a kidney.

It was a shot in the dark, Cohen knew. But what else did he have?

Several years after doctors diagnosed him with incurable kidney disease, his appetite, energy and hope were on a steady dwindle. The busy Connecticut attorney declined the traditional dialysis treatments, worrying that the physically draining sessions would impede his already eroding lifestyle. He opted for a kidney transplant that might give him a second chance. But the procedure wouldn't come easily.

With no compatible kidney donors among his family and friends, Cohen, now 55, would have to put his name on the backlogged national waiting list for organs from deceased donors. On a register that recently neared 73,000 waiting kidney recipients, that could easily have meant four years before Cohen's name was called. And if he wanted to move up that list, it would also mean Cohen would have to undergo the dialysis he didn't want, required by the organization until the patient-kidney match is made.

"The clock was ticking," says Cohen. "My feeling was there had to be people out there who are altruists, who are willing to donate a kidney."

And so Cohen typed those search terms at his computer, and his hunch led him to an online living-donor service called MatchingDonors.com. A cynic by his legal trade, he wasn't sure about it. "My wife really thought I was being taken to the cleaners on this one," he says.

But sure enough, it eventually led him to Margie Stevens-Beville, an emergency room nurse from New Hampshire. And on June 20, doctors successfully transplanted her kidney into Cohen's ailing body. The surgery went smoothly, and both donor and recipient are recovering well. It was the 46th transplant facilitated by a Matching Donors search.

"What she did was just so breathtaking and awesome, and so unselfish," Cohen says. "It's the ultimate gift."

But it's also controversial.

When a Massachusetts doctor launched the site in 2004, Match ingDonors.com ignited an intense debate over the ethics of seeking live organ donors via the Internet. With its members paying $595 for a lifetime subscription -- or $295 per month -- to scroll through donor-recipient profiles, critics argued that the site reduced the serious issue of organ donation to the medical equivalent of an online dating service. (Donors are not permitted by law to be compensated, though their medical bills and lost wages can be reimbursed by recipients.)

Opponents contended that it gave unfair advantage to the wealthy and sophisticated. They worried it would leave the poorer, perhaps sicker patients -- or those whose member profiles weren't written with as much heartbreaking savvy -- to wait under a national shortage of organ donors. And they contended that it would fuel illicit trade in human organs.

But none of it has come to pass, says Matching Donors medical director Jeremiah Lowney.

"Anytime you can take someone off that [waiting] list, you're allowing someone else to move up that list," says Lowney. "Instead of passively waiting, this is allowing patients to take their health care into their own hands."

In less than three years, the nonprofit site -- still the only one of its kind -- has bridged more than 50 recipient-donors for transplant surgery. It counts more than 4,000 potential donors as members. The successful pairings, Lowney says, include members of all socioeconomic backgrounds.

They do get reports of some users trolling the site, illegally offering their organs for thousands of dollars. But both Lowney and Cohen say that element is in the minority. The service is awaiting clearance from Medicare to reimburse patients the registration fee, but in the meantime it reduces or waives fees for patients who can't afford it.

Skepticism remains. But much of it has yielded to cautious acceptance. Doctors at transplant centers around the country are increasingly familiar with the services. And the United Network for Organ Sharing, the private nonprofit group that contracts with the U.S. government to oversee the national organ procurement waiting list, has also eased its stance.

An organization spokesman says it does not weigh in on how recipients and donors meet. It's more concerned that both parties receive the comprehensive physical and psychological screening from their transplant centers to make sure they are viable candidates; and that patients are educated about the benefits and risks of being living donors. For kidney donors, the risks are considered minimal. A person with one functioning kidney has the same life expectancy as one with both.

"Any reasonable person would question the motives: 'Why would someone want to donate their kidney to a complete stranger?'" says Lowney, who practices internal medicine in Boston. "But there are these beautiful people out there who are willing to donate ... because there is someone in great need."

Indeed, nearly 97,000 patients await organ transplants in the U.S. The majority of living donors are patients' relatives or friends, though UNOS reports the number of so-called good Samaritan donors who offer their organs to strangers is increasing.

As the population ages and causes of kidney failure like diabetes increase, the need for donors will increase, says Matthew Brown, Cohen's transplant surgeon at Hartford Hospital. In 1998, 150 people per million population suffered kidney failure, he says. By 2004, that number was 350.

"This Web site sounds like a useful tool to get more people the lifesaving transplants they require," says Brown, who learned of Matching Donors through Cohen.

"But I don't think that Match ingDonors.com is going to close the gap between the number of organ donors and the number of people waiting," he says. "I think this is still always going to be a minority of our total patients."

Patients wouldn't need such services, Brown says, if the masses could be persuaded to donate their organs upon death. Doing so has the potential to save seven or eight lives: The heart, lungs, kidneys, liver, pancreas and small intestine can be transplanted.

Margie Stevens-Beville never needed convincing. She had signed up for organ donation while getting her first driver's license. Last Christmas, Stevens-Beville, now 39, saw a news program featuring Matching Donors.com. She was taken with the notion that she could see the benefit of her donation in life. She signed up and connected with Cohen within days.

After the initial shock wore off, she says, her family supported her. Her husband had a particular understanding, since a childhood accident left him with just one kidney.

Still, the gift of a living organ is an enormous one to give to a stranger. There was something else tugging at Stevens-Beville when she decided to donate. Her first husband died of a brain tumor. He was 32. "I would have given anything to have more time with him," says Stevens-Beville. "I thought, even more for Rich's wife than for Rich, if I could save her the pain that I went through. If I could just give her more time with her husband."

How do you thank a donor for giving you a second chance at life? Cohen hasn't figured it out yet. He suspects he can't. But this he does know: Stevens-Beville is forever part of the family.

He figures maybe the best way to pay it forward is by getting the word out to potential donors.

"I realize that a lot of people don't have the time or the lifestyle that would allow them to do what Margie did," he says. "If you can't do that, at least become a donor upon death."

Tell your family members your wishes, he says. Put it on your driver's license.

"You're not going to need your organs where you're going. And you will be saving someone's life. What could be better than that?"

Joann Klimkiewicz writes for the Hartford Courant.

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