A new resource, but with a double edge
Anyone who has been on an organ-donation waiting list, or had a friend or family member on one, knows how terrible the wait can be. In a report released in February, the Canadian Institute for Health Information noted that both living and deceased donor rates have stagnated since 2006. In 2010, the last year for which data are available, there were 1,022 organ donors, an increase of just five from 2006. There were 2,103 transplant procedures, a mere 29 more than four years earlier.
“Whenever we have people who are dying who would otherwise benefit from a transplant, there’s obviously a very strong need to do more,” says Tom Blydt-Hansen, president of the Canadian Society of Transplantation. “If we had a sufficient supply of organs, these people need not die.”
On some level, we all know that. But there are still far more people on waiting lists than there are available donors. In 2010, there were 551 people on wait lists to receive a liver transplant; 74 of them died waiting. The realities are just as stark for people waiting to receive other organs.
Which helps to explain why patients and their loved ones are turning to social media. After she was diagnosed with advanced idiopathic pulmonary fibrosis last October, Hélène Campbell, a 21-year-old from Ottawa, became the unofficial face of organ transplants in Canada through her website and blog chronicling her experience.
Her online advocacy drew the attention of figures such as Justin Bieber and Ellen DeGeneres.
Ms. Campbell underwent double-lung transplant surgery in April. But she found her donor through the usual waiting list, not online, where she simply raised funds and awareness. What Michael Andrade did is a little different. Dr. Blydt-Hansen says there is some ethical uneasiness about people using blogs, Facebook or Twitter to find donors for themselves or their loved ones. It could change the landscape in ways that are hard to anticipate.
Generally, the main restriction on patients seeking donors is that they may not offer financial compensation. But there are other ways to gain a competitive advantage – with a compelling story, for instance, or a photo gallery that would break your heart.
Not everyone in need has the online access and know-how to go that route. As well, the organ-transplant waiting list does not play favourites by appearance, gender, ethnicity or economic status, but would-be altruists reading a web page might.
“We know that there are a lot of biases that then go into who offers an organ to which person,” Dr. Blydt-Hansen says. “We try to avoid all of those biases and at least try and make the system as fair as possible.”
But he is quick to add: “I’m the last person to tell somebody, ‘Don’t go find a donor for your loved one.’”
A digital prayer is answered
No one was able to help Graeme McNaughton’s loved one. Five years ago, Mr. McNaughton lost his cousin, Angela Cooper, to ovarian cancer. She was just 16. “We always got along really well,” he says, though they had mostly hung out only at family gatherings, as he lived in Belwood, Ont. and Ms. Cooper in London, Ont.
“I remember at the time they were looking for organ donors for her and nothing came through, and there was nothing I could do,” says Mr. McNaughton, who is now 23 and entering his third year in journalism at Toronto's Humber College. “After that I just sort of told myself, if an opportunity came up and I felt I was ready and I was in a position in my life to do something [to help someone else] then I think I would want to do something.”
One night last fall, Mr. McNaughton was on Reddit, a popular news-and-links tracking site, and spotted a link to Michael Andrade’s Tumblr page. He was touched by the story and e-mailed to say he would be willing to be tested. It turned out he was a match.
“That’s when I really sat down and examined everything,” he says. “I was absolutely terrified. But sometimes the pros do outweigh the cons. Lucy’s life was at stake, and that whole family would be affected by it as well.”
His own parents were “nervous and scared of what I was doing, but knew the reasons why I was doing it,” he says. On the day of the surgery, the doctor spoke with his mother to explain the procedure and the risks involved. “He told her there was a 0.3 per cent chance that I wouldn’t make it through the surgery. She misheard him and thought he said 30 per cent. I didn’t hear the end of that for a while.”