Wanted: One kidney, good condition
Like everyone else using Craigslist, Fernando Escueta is looking for something. But it's not a job, an apartment or a bike: He's looking for a kidney donor for his wife.
The ad, posted in the "Volunteers" section of the Vancouver classified ad website, is short, polite and to the point:
"My name is Fernando, I live in Richmond, B.C. My wife is currently sick at the moment and is need of [a] kidney donor. She is using dialysis every day and we are looking for a donor with type "A" blood, must be in healthy condition. Your kindness is appreciated. Thank you for your time."
The Escuetas aren't alone. Desperate people on organ waiting lists across Canada are harnessing the power of the internet to reach out, hoping someone — anyone — will be moved to donate.
Average wait times on provincial transplant lists vary widely, but some are several years long. In 2008, 303 Canadians died while waiting for a transplant. They were among 4,380 on a transplant waiting list, according to the Canadian Organ Replacement Registry.
Lois Wilson: Media publicity attracted a potential donor
Lois Wilson's husband needs a new kidney. She made headlines last year when she posted an ad on Craigslist looking for someone willing to do a paired exchange. Craigslist took her ad down, but she says about 40 people contacted her about donating after seeing her on the news. One is taking tests to see if he's a compatible donor.
Chaya Lipschutz: Kidney matchmaker
Lipschutz has devoted her life to matching organ donors and recipients online. Like Wilson, she looks for potential donors by posting ads in the "volunteers" section of Craigslist. She also has a website. Lipschutz, who lives in Brooklyn, says she's noticed a big change in the attitudes of American hospitals when it comes to people finding donors online. "Hospitals have become so much more open to this than they were just a few years ago, even."
Ilishe Mikos: Promotes living organ donation on Twitter
Ilishe Mikos is also looking for someone to participate in a paired exchange because her husband needs a kidney transplant. She uses Twitter to spread the word about paired donation. She says several people have told her they signed up for the American paired exchange registry because of her tweets.
Holly Cocker: Blogs about living donors
Holly Cocker's friend Oli Foggin donated a kidney to her in 2008 when she was 23, saving her life and putting an end to five years of dialysis treatments. Today, she uses her professional skills to raise awareness about living kidney donation. She photographs donor-recipient pairs and writes about them in her blog. She'll be showing her work at an exhibit called Gift of Life in collaboration with fellow photographer Sarah Milne at the Central London Gallery in December 2009.
Sarah Milne: Photography blogger
Four-year-old William Milne is shown just after receiving a blood transfusion in November 2008, three weeks before receiving a small-bowel transplant. His mother Sarah Milne blogs about his journey from seriously ill to active after receiving the transplant. Milne has another photography blog where she takes pictures of people awaiting transplants to raise awareness about organ donation. She is working with Holly Cocker to produce a photography exhibit that will be shown at the Central London Gallery in December 2009.
Joseph Nachman: Bought a lifetime profile on MatchingDonors.com
Joseph Nachman jokes that he's "like a used car" — he has received two organ transplants, a liver and a kidney. He bought a lifetime profile on MatchingDonors.com, which matches patients and donors for a fee. He said buying a $668 profile seemed like a bargain compared to the cost of getting a transplant in the U.S., which can be as high as $100,000. "When it comes to health, nothing seems too much," he said.
Dale Calibaba: Looking for a donor on Facebook
Dale Calibaba and his wife Jewel made a Facebook group called "Help Find Dale a Kidney" in 2008. The group has 891 members. Calibaba has a genetic kidney disease called Alport's syndrome. The kidney transplant he received at the age of 18 has now failed and needs replacement. Calibaba says a few potential donors have contacted him, but none have worked out so far.
The only way to jump the queue is to find someone who is willing to donate an organ while they are still alive. Every new tool for connecting people online is a way to reach out to potential donors. People are signing up for organ matching services, creating Facebook groups, and even using Twitter to drive traffic to websites about their plight.
But Jeff Blackmer, director of ethics at the Canadian Medical Association, warns that people who publicize their desperation are easy targets for exploitation. Many people who have used the internet to look for donors have stories about being approached with offers to sell an organ for a price.
Asking strangers to donate organs isn't illegal, but paying them is. Today, anyone looking to make a quick buck from a spare kidney can find potential buyers with a simple web search.
And then there's the argument that finding donors on the web is like cutting in line. Online pleas for organs featuring cute kids and sad stories might inspire someone to donate, but there could be someone less photogenic and web savvy who needs the organ more.
"Access to organs, which are obviously quite scarce, should be made on specific criteria like medical need, time on the waiting list," Blackmer said. "Not on ability to access the internet or advertise your need."
But people looking for donors on the web say as long as there's a chance they might find someone, they'll keep searching. Canadian health officials haven't made any firm commitment to address the problem of long wait lists for transplants and the scarcity of donors.
Donor search tools change, wait lists stay the same
Online organ donation came into the public eye in 2004, when Rob Smitty donated a kidney to Bob Hickey in the first match arranged through the website MatchingDonors.com. The site is run by Paul Dooley, a Massachusetts entrepreneur who also founded the job hunting website CollegeJobBoard.com.
The organ matchmaking website added an extra layer of controversy because it charges a fee for posting a profile. A lifetime profile on the site costs $595 US (about $668 Cdn).
When the surgeon who was scheduled to perform the transplant learned about the circumstances under which it was arranged, he refused to do it. Shortly after the transplant was finally performed, Smitty was jailed for missing child support payments, adding to speculation that Hickey paid him for the kidney.
Today, the controversy has died down and MatchingDonors.com hosts 465 patient profiles. Even though MatchingDonors.com has yet to arrange a successful transplant in Canada, there are 14 Canadian profiles on the site.
Hospitals decide whether or not to accept transplants arranged online on a case-by-case basis. In Canada, the two people are supposed to either have a substantial relationship (being family members, for example), or remain completely anonymous. The potential donor has to participate in a psychological assessment.
Dooley says the service is non-profit. Revenue from profile sales pays for overhead costs and helping donors with things like transportation, he said. He also says 30 per cent of the profiles on the site are hosted free for people who can't afford the full fee.
He said his service hasn't been hurt by Craigslist or Facebook. People are much more likely to find a donor on his website than others, he said, describing the probability of finding a donor as "astronomical."
But Dorothy Escueta, Fernando Escueta's wife, said her husband's free Craigslist posting yielded results.
She was a sales clerk at a cookware store for nine years until she had to go on disability. She has to be on dialysis for eight hours every night because of her chronic kidney disease. This is especially hard for her because she suffers from an unusually low pain tolerance, she said, which means dialysis is particularly hard on her physically.
Escueta reminisced about her life before she had to quit her job and go on dialysis. "I loved the job, I loved meeting people," she said. "I was so active."
Escueta said two potential donors have contacted her since her husband posted the ad. The first person asked for financial compensation, which she refused, she said.
She said the second volunteer seems to be genuinely altruistic, so they're going in for tests to see if the donor's kidney is a compatible match.
In less than a month, Escueta has been more successful than another MatchingDonors.com customer was in a year. Joseph Nachman bought a profile on MatchingDonors.com in 2008 after seven years on Ontario's transplant list, but never found a donor that worked out. He eventually got a kidney through the traditional waiting list.
He described the potential donors he got in touch with through the MatchingDonors.com site as "flakey." They would often stop responding to his emails without explanation, he said.
"I didn't get a very good feeling. It didn't appear the persons were very serious," he said.
Even though Escueta couldn't afford a paid profile, she said people should have the right to use any method they can afford to find a donor.
"If people have the money, why not?" She said.
"You're not hurting anybody."
But critics say the practice does hurt people indirectly. Blackmer said that even if there was a guarantee that every online donation was arranged ethically, the practice would still be problematic because it undermines the publicly funded health-care system.
"If the public system is done properly, and if it continues to improve, there's not really a need for a parallel private system," he said.
The problem is that, by many accounts, the public system is not running properly.
Nachman has lived in Europe, Israel and the United States, so he knows a lot about different health-care systems. In his experience, the Canadian system works great - except for its transplant record, he said.
"The system is so broken. I just find it totally unacceptable," he said.
Nachman said Canada should develop a nationally coordinated organ-sharing network. Currently, the transplant lists are run provincially, so a patient in Vancouver wouldn't know if a matching organ became available in Newfoundland.
Canada's donation rate for deceased donors ranks low among developed countries. In 2006, the Canadian Medical Association Journal reported that Canada's rate was 12.8 donors per million deceased, compared to 35.1 per million in Spain and 21.5 per million in the U.S.
The journal warned that it's hard to draw conclusions about these numbers because organ donation numbers are uneven across Canada.
Every few years, politicians suggest reforms to address the unevenness and improve Canada's donation rate.
Back in 1999, a House of Commons committee on organ donation recommended a nationally coordinated system for organ sharing. But no action was taken. Since then, a number of intiatives have been introduced:
- Peter Kormos of the Ontario NDP has introduced bills calling for presumed consent for deceased donors three times. Under the proposed legislation, people would have to arrange to take their names off a list of potential donors if they were to die. It has never passed.
- A few measures have been introduced recently in an attempt to encourage living donations. One is the Canadian Blood Service's living donor paired exchange registry. The pilot project was announced in February 2009, and is available through hospitals in Ontario, Alberta, and British Columbia. The paired exchange registry works by arranging organ swaps. For example, someone who needs a kidney from a donor with O positive blood might know someone willing to donate with A negative blood. There might be someone else who needs a kidney from a person with A negative blood who has a willing donor with O positive blood. If both pairs signed up for the registry, they would be notified and could potentially "trade" kidneys.
- Another innovative program encourages British Columbia residents to donate kidneys anonymously, the first program of its kind in North America. B.C. was also the first province to reimburse donors for expenses related to recovery time, travel and loss of income. On June 5, 2009 Ontario passed a law that would allow workers to go on "organ donor leave" under the Employment Standards Act.
Nevertheless, average wait times for a transplant in Canada remain dauntingly long. Nachman said he's lost faith in the Canadian transplant waiting list system.
The kidney he received in August 2008 is expected to fail in 10 to 12 years. Since the official provincial waiting list is years long, he says he'll keep his profile on MatchingDonors.com as a backup plan.
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