Baruch Tegegne that thought he had found a life-saving kidney. The 61-year-old Montrealer's health is deteriorating; dialysis four times a week keeps him alive. So friends, led by filmmaker Simcha Jacobovici, turned to a website called MatchingDonors.com, paid $441 (U.S.) for three months and posted his story in hopes of getting an organ.
The post was compelling. Mr. Tegegne is a well-known activist whose efforts to bring Ethiopian Jews to Israel earned him coverage in Mr. Jacobovici's 1983 documentary Falasha: Exile of the Black Jews. He is credited with saving hundreds of lives and has spent decades working with Ethiopians in Africa and Israel.
Mr. Tegegne's plight caught the attention of a 30-year-old Indian man named Shree Dhar. Middle-class and motivated by religious conviction as well as a grandfather's death from kidney disease, Mr. Dhar said he wasn't looking for money or to emigrate. Mr. Tegegne's friends gathered funds to pay his travel expenses and compensation for lost wages -- he makes 9,500 rupees (about $265) a month as an investment consultant.
"I thought I would have another life," Mr. Tegegne said of finding Mr. Dhar.
But the excitement proved premature. Royal Victoria Hospital, a leading transplant centre in Montreal, refused the transplant over suspicions about a quid-pro-quo agreement between Mr. Tegegne and Mr. Dhar, heightened by the Internet transaction and Mr. Dhar's Third World origins. Furthermore, Montreal health officials denied the transplant because Mr. Dhar isn't a relative or a close friend.
So now, rather than Mr. Tegegne having a life-saving operation in Canada, his friends are trying to raise $200,000 to get the surgery elsewhere. "They're treating live donors as guilty until proven innocent and thousands of Canadians are left to die as a result," Mr. Jacobovici said in a statement.
Mr. Tegegne's case has forced the issue of organ solicitation into the spotlight. With increasing organ shortages, desperate patients are taking the initiative and seeking living donors. Until very recently, their attempts were limited to directly contacting friends and family, taking out expensive advertisements or posting to informal Internet message boards. But in 2003, MatchingDonors.com changed everything by providing the organ donation equivalent of on-line dating: People needing an organ post their profile, and people wanting to donate one seek them out.
In Canada, it is thought that 200 people die each year awaiting organs. In Ontario alone last year, more than 1,800 people were waiting for a transplant -- more than double the number 10 years earlier -- and 122 of them died. In the United States, where in April, more than 88,000 people awaited a transplant, statistics suggest that 17 of them die each day.
Douglas Hanto, chair of the ethics committee of the American Society of Transplant Surgeons, puts it bluntly. "There's a disparity between supply and demand," he says. "I see patients increasingly willing to take things into their own hands."
This includes soliciting organs from family members, a relatively established practice. Widespread solicitation of organs from strangers, however, is new. "The trend for going beyond family is more recent," says Frank Markel, president and CEO of Ontario's Trillium Gift of Life Network.
Few people know as much about such on-line solicitation as Michael Murphy.
In 1991, he donated a kidney to his sister. About nine years later, he was approached by a colleague with an ill daughter who asked about living donations, and his experience.
Looking at the Internet, Mr. Murphy found little information. "I thought, 'Here's an opportunity,' " he says. By September, 2000, he had a site running, Livingdonorsonline.org, with the principal purpose of supporting living donation, rather than encouraging it.
A few years later, at the request of members, Mr. Murphy added a "Looking For . . ." message board on which people can arrange organ donations. He says the section was added reluctantly and is kept only because it has helped four or five people get transplants.
"This is the most troubling part of the website for me," he says. "There are a lot of bad actors out there." The board is monitored closely to see if people violate the terms -- such as by asking for organs in exchange for money.
There is no shortage of Canadians making use of the site, as demonstrated by a June 9 posting from Melinda Fischer, who describes herself as "a 45-year-old Canadian woman in need of a kidney" and inlcudes an e-mail address to make contact. "My blood type is O-. My kidney failed in 2003 and I have been on hemodialysis ever since. The waiting list is anywhere from 2 to 5 years."
Unlike Livingdonorsonline.org, MatchingDonors.com explicitly encourages and facilitates on-line organ donations. For a lifetime fee of $595 (U.S.), people seeking an organ can add their biography and pictures of their choice to the website to create an interest in their need. The idea is to make potential donors more comfortable by allowing them to find a common bond such as hometown, religion and hobbies. The fee is waived for people who can't afford it, and the website is run by a non-profit organization based in Canton, Mass.
Entries are highly sophisticated, and include such things as a donor's required citizenship and "nice-to-have attributes." One entry by a Canadian woman seeking a kidney for her husband emphasizes his dependents, including two girls, and generosity, saying he treats dental patients free if the patients have finance problems.
As of May, MatchingDonors.com had successfully matched seven people who had transplant surgery, Dr. Lowney says, and matched 22 others who are in the presurgery stage. Immediately after the first surgery last October, the site was reporting more than two million visitors per week.
That surgery was a harbinger of things to come.
It happened after former Hamiltonian Bob Hickey of Vail, Colo., got fed up with kidney dialysis. In December. 1997, he was diagnosed with kidney cancer, and about a year later had one kidney removed. The other was then diagnosed with a progressive disease, forcing Mr. Hickey onto dialysis in 1999.
Dialysis made him sick and overweight, he says, and took 4½hours every other day, all in all ruining his quality of life. So in February, 2004, after reading about MatchingDonors.com in the Denver Post, he signed up.
Over the next three months, Mr. Hickey, 58 at the time, received 4,500 contacts. "I had to tell them to take my name off the list because I was getting so many e-mails and needed to screen them," he says. He went through the list, first looking for blood matches, then looking for legitimacy. About 10 per cent of the people wanted money. Mr. Hickey eventually settled on one: then 32-year-old Rob Smitty of Chattanooga, Tenn. The entire process took about two months.
Mr. Hickey met with a transplant team at Denver's Presbyterian/St. Luke's Medical Center last September and says all team members were on board. But when he went for his surgery in October, the head surgeon accosted him, he says, waving a newspaper describing the way in which Mr. Hickey procured his donor organ. The transplant was called off, with the hospital saying it needed to determine if either man stood to gain from the arrangement financially. It was rescheduled, and Mr. Hickey finally got his kidney two days later.
Mr. Hickey's surgery and others that followed have been highly controversial. The United Network for Organ Sharing (UNOS), which is responsible for overseeing the distribution of organs from deceased donors in the United States, has said MatchingDonors.com "exploits vulnerable populations and subverts the equitable allocation of organs for transplantation." Several bioethicists, including leading U.S. bioethicist Arthur Caplan, have also spoken out against the website.
Dr. Hanto has been one of the most critical voices. He points out that UNOS lets physicians determine whether a recipient can benefit from a transplant, and allows monitoring and compliance enforcement, while MatchingDonors .com doesn't provide screening that can ensure donated organs aren't wasted on people who will die from other causes.
Furthermore, Dr. Hanto says, MatchingDonors.com and similar services favour people for such reasons as wealth, attractiveness or ability to write an interesting story, rather than for medical need. "Would you give $1,000 to Bill Gates or to someone who really needs it?" he asks. "If we don't have a fair system, we don't have a system at all."
But not everyone is convinced that MatchingDonors.com and similar websites can't be part of the solution to organ shortages. A key question -- still unanswered -- is whether the sites tap donors who would otherwise provide organs for existing waiting lists or whether they attract people who otherwise wouldn't donate. "I didn't jump ahead of anyone," Mr. Hickey says. "I improved the situation by taking myself off the list."
While advocates and detractors spar, websites such as MatchingDonors.com appear here to stay. Dr. Lowney says that in recent meetings with UNOS, he was encouraged about support for the idea, and even Dr. Hanto says the site has made a contribution. "MatchingDonors.com has obviously raised the profile of living donors," he says. "Some people otherwise wouldn't have known."
Dr. Hanto sees education as key to getting more donors, however, and thinks that in the United States, UNOS's mandate should be expanded to oversee living donors. For his part, Dr. Lowney thinks there should be one Internet site for everyone, possibly run in the United States by the Department of Health and Human Services.
In the meantime, people such as Mr. Tegegne continue to get caught in ethical and political quagmires surrounding living donors and the fear of organ sales.
If his friends are successful, Mr. Tegegne will likely be heading to one of them soon.
Simon Smith is a Toronto-based science and technology journalist.