Online organ linkups spur debate, alarm

Donald Huttner needs a kidney, and so, like countless others in search of something in this Web-wrapped world, Huttner went on the Internet looking for one.

He found what he wanted within half an hour.

''Hi!" wrote Diane Sylvester. ''I am 34 years old. I have a beautiful 8-year-old daughter and a wonderful man in my life. I want someone else to be able to share in and enjoy life like myself."

As the two shot excited e-mails back and forth between her Texas office and his Denver condominium, Sylvester agreed to give Huttner one of her kidneys, and the two rejoiced that a match had been made.

Their joy didn't last long.

When Huttner took his good news to his transplant team at the University of Colorado -- the team that just two weeks earlier had performed the first transplant for a patient who found a donor organ through a commercial Internet site -- the hospital refused. The landmark procedure, which received worldwide media attention, has not only triggered a backlash among many of the nation's transplant surgeons, but has also generated widespread alarm that the Internet is fast becoming a bizarre marketplace for body parts or, as one ethicist put it, ''a dating service for kidneys."

It is a controversy that not only pits doctors against patients and donors, who say they are being barred from giving their organs to whomever they wish, but has inflamed a long-simmering national debate over the ethics of selling organs for cash. As patients flood the Internet with heart-rending appeals, some complete with laparoscopic images of their failing organs, doctors worry that the national waiting list for transplant organs will be undercut and that the patients themselves are vulnerable to exploitation.

Following the Colorado surgery, the American Society of Transplant Surgeons, which represents virtually all of the nation's transplant doctors, issued a statement urging doctors not to perform transplants involving donors solicited publicly. Some hospitals, like the University of Colorado, are refusing to do transplants using organs obtained via the Internet or any other commercial means. Other institutions say they will proceed with such requests on a case-by-case basis.

Huttner, a 69-year-old retired plastic surgeon who has been on the national waiting list for a kidney for nearly one year and who says he faces a wait of possibly another three years, considered filing a lawsuit against the hospital, but decided that doing so could jeopardize his chance for a transplant later.

Nonetheless, he declares that the doctors' refusal is unethical, if not illegal.

''I have a willing donor. They have the surgical team. But they are not willing to go forward," Huttner said. ''There is nothing illegal about this. They are violating the Hippocratic oath to give a patient the best care possible."

A hospital spokesman declined to comment.

Few dispute the potential of the Internet to add power and reach to efforts to match patients with kidneys, livers, or lungs, the organs for which transplants are most commonly available. But there is no consensus yet among doctors and specialists about how that might be done.

In June, the United Network for Organ Sharing, the nonprofit organization that manages the nation's supply of organs for transplant, issued a statement declaring that it was philosophically opposed to MatchingDonors.com, the Massachusetts-based site that Huttner used to find a kidney. Last month the organization also released a statement opposing efforts to solicit organ donations through such vehicles as classified advertisements and billboards, as some desperate patients have done.

But officials at some hospitals, including Massachusetts General Hospital, say they would consider donors found online under the same criteria that apply to other live donors. Johns Hopkins Hospital has no policy in place for such surgeries, but does not condone matches brokered by for-profit organizations.

Ethical issues Patients have been trying to use the Web to search for organ donors for some time. But the October transplant in Colorado, brokered by MatchingDonors.com, and the case of a young Texas man who received a liver in August after launching a media campaign on billboards and a website have inspired hundreds of others to take matters in their own hands, forcing this simmering issue to center stage.

Wander the Internet, and you will find a parade of people seeking replacement body parts. There's Jonathan Byron Jones, whose website (www.byrons-liver.com) features a host of photographs, including one of his cat and another of the ailing liver he is seeking to replace. He has two billboards on which he makes his appeal to drivers on the interstate in his home state of Alabama.

There's Cynthia Gallardo, 25, a California woman whose website (www.DonationForCynthia.com) has netted several possible kidney donors, two of whom are undergoing testing, according to her aunt, Irma Woodard.

And there's Larry Dalo Jr., a 23-year-old born in Boston and suffering from leukemia, whose profile on MatchingDonors.com seeking a bone marrow donation has been viewed 11,000 times, according to the website's founders.

And those whose illnesses make it hard for them to leave home communicate regularly about their need for organs online. Some have linked their websites as www.linksforlifecampaign.com.

''We consider ourselves a family," said Everet Barrington (www.everetneedsaliver.com), of Von Ormy, Texas, who has hepatitis C. ''We talk and try and find out things about what is going on in the transplant world, about the corruption, about doctors playing God."

MatchingDonors.com received much fanfare following the Colorado surgery, but there are several other websites that link patients to donors, such as www.livingdonorsonline.com. Launched four years ago as an information resource for living donors, the nonprofit site added a forum last year to help those seeking organs to connect with donors, according to Michael Murphy, the site's administrator. Murphy, who donated a kidney to his sister more than a decade ago, says he knows of three transplants that have occurred between patients and donors who met on the site, surgeries that apparently stirred less concern than the University of Colorado's because of the site's nonprofit status.

The message board, which is free of charge, is a high-pitched catalog of supply and demand.

''A+ Willing to Donate," declared one recent entry.

''My grandmother needs O type kidney ASAP!!!!!!"

''Have A+ or AB+ kidneys for swap of O+ kidney."

And then there was this: ''Kidney needs a new home." The 37-year-old O-neg kidney, said the message, ''is drug free, in great shape (if that matters), and willing to move on to the next step now. He isn't very picky."

Patients and donors are incredulous that doctors might refuse them simply because they met on a website. They point out that family members and friends are permitted to donate.

Doctors acknowledge that defining what is meant by friends can be difficult. For example, Dr. Douglas Hanto, chairman of the transplant surgeon society's ethics committee and chief of the division of transplantation at the Beth Israel Deaconess Medical Center, says he would probably perform a transplant on a patient taking an organ donation from a member of his or her church, if they fit other medical criteria for donations. But if the patient approached him with a donor he met on the tennis court a few weeks ago? ''Probably not," Hanto said.

Many donor-patient pairs who meet online say that, however brief their acquaintance, the fact that they face a life-threatening situation together makes them feel like close friends. ''If we had gone in and said we were friends, they would have done the surgery," said Sylvester, who formerly worked as a surgical technician on a transplant team.

Critics have objected that public solicitation of organs is easier for those who have money or who are computer-savvy.

But patients say that the cost of their web campaigns have been negligible. Most say they paid no more than $150 for their website. MatchingDonors.com says it will waive the $295 monthly fees it charges patients to post their profile if they cannot afford it. And in Byron Jones's case, the owner of one of the billboards says he is donating the $4,000 a month space.

Patients also believe that their public solicitations have helped to increase the number of donors overall.

''People who contact us say, if it weren't for Cynthia's story, they wouldn't have considered donation at all," said Irma Woodard, speaking on behalf of her niece, Cynthia Gallardo. ''Everyone assumes we're taking from someone else, but the fact is that a lot of these people wouldn't donate if they didn't feel a personal connection."

But putting a personal face on an organ donation can also bring complications. Beth Muia, a 19-year-old senior at the University of Georgia and a potential donor who is undergoing testing for two people, is deeply moved by the stories she hears. Still, she says, ''When you have four or five people saying, 'I need you, I need you,' it puts you in a tough position."

One question yet to be answered is how effective these personal campaigns are. Although patients have been trolling for organs on their own for some time, only a handful of transplants have apparently resulted. And some doctors question why, if the Internet is such a good matchmaker, more of the 87,000 people currently on the official waiting list for transplant aren't leaping to get online.

Although the attention generated by MatchingDonors.com, which was started in January by a Hyde Park doctor and one of his patients, has triggered a surge of activity on the Internet, the numbers are still relatively small.

Murphy says he has seen visits to his site nearly double, from 300 to 700 a day. The number of organ seekers on MatchingDonors.com has risen from 11 to more than 70. Paul Dooley, the site's cofounder, says that the number of possible donors on the site is now above 1,450. ''It shows there's a better way," he said.

Some doctors wonder about that. They doubt that many of the website hits will result in a medical match. Dooley says that five pairs who met on his site are close to transplant, although he declined to identify them.

But others making their appeals online say that an initial flurry of interest in their posting has netted nothing. Many potential donors turn out not to be a match, while others may drop out after learning that they have to undergo extensive testing or that donating an organ carries surgical risk.

Two months after he set up his website, Everet Barrington has one offer from a foreign man who wants to sell a part of his liver.

Stephen Speier of Pine Bush, N.Y., said his posting on the site MatchingDonors.com in search of a kidney has dwindled from 45 serious responses to nothing.

''I don't know that the majority of these people really understand what is involved," Speier said.

Organs for sale? Just what motivates people to donate a part of their body to a stranger -- a question that ranks high on the list of doctors' concerns -- is complex. Federal law prohibits the buying or selling of organs, although a law signed in April by President Bush allows donors for the first time to be reimbursed for expenses. Nonetheless, money is clearly on the minds of some would-be donors. And also on the minds of some doctors, who believe that payment may be the only way to generate a larger organ supply.

Dr. Arthur J. Matas, a kidney surgeon at the University of Minnesota, has proposed a national system of organ sales, regulated by the government, in which organ vendors would not only be paid but would also receive long-term health care and life insurance.

Although he acknowledges that poor people might be more likely to sell their organs, Matas asks: ''Why is that bad? Poor people are more likely to be coal miners or go fight in Iraq or do many kinds of things for money that are more dangerous than being a kidney donor."

Several patients said they had received offers of organs for prices ranging from $5,000 to $40,000. Murphy, a management consultant in Atlanta, acknowledges that people seeking to sell have to be blocked from his site about once a week.

Some patients say they would not hesitate to pay, even if the law forbids it. A Dedham man, who asked to be identified only as Sam and who has been on the waiting list of the United Network for Organ Sharing for one year, said he would give all his savings for a liver. ''I'd have to," he said. ''It's either that or 6 feet under for me."

While he would not pay someone outright, ''I'd certainly consider a very generous present," said Speier of MatchingDonors.com.

Hanto, the Beth Israel Deaconess surgeon, worries that such transactions undermine public faith in the United Network for Organ Sharing list and could result in a decline in organ donation overall. If people direct their organs to people not on the list, ''then people will no longer have faith that the list is fair," he says. ''Then there will be anarchy. Everyone will be trying to get donors to direct to them specifically."

They already are.

One doctor tells of a case in which a patient in desperate need of a transplant monitored police radios and, upon hearing of a fatal accident, rushed to the hospital to ask the victim's family members for an organ. And one morning not long after she put her profile on MatchingDonors.com, Sylvester discovered a business card from a Dallas transplant center tucked in her apartment door. Sylvester believes it was left by a patient who wants her kidney, and Dallas organ authorities, who reported the incident to local police and federal officials, think she's right.

''I guess they wanted to try to convince me to give my kidney to them," said Sylvester, who intends to move because of the incident. ''It makes me very nervous."