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Canada’s donor drought: why some are looking to social media for a new kidney

Ken Wilkie posted an ad on Kijiji last month seeking a kidney donor.

PAUL DARROW/The Globe and Mail

Ken Wilkie is desperate and feels like he is running out of options. Last month, he placed an ad on Kijiji, begging for a new kidney.

"Boost Your Karma," he wrote. "I am a hard-working father of two. I don't drink, smoke or do drugs so I promise I will look after your kidney."

The 47-year-old correctional officer from Leitches Creek, N.S., is not the only one to turn online for help: a B.C. man recently found a kidney donor through Facebook, and two years ago, Garry Keller, chief of staff to Foreign Affairs Minister John Baird, set up a Facebook page and then organized a blood donor clinic on Parliament Hill that located a new kidney.

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That some Canadians are turning to social media in search of donors indicates the dire state of organ donation in Canada. The deceased donation rate in Canada is half that of the countries with the best rates, including Spain, Australia and the United States, according to experts. For example, Spain and the United States have 30 to 32 donors for every million people, compared to 16 for every million people in Canada. Australia has nearly 25 donors for every million people.

While everyone acknowledges the problem, the explanation is complex and incomplete: There is no national transplant authority (the provinces run their own registries and programs, and cannot always see who is registered where); some people sign organ donation cards or put their names in a registry but fail to communicate their wishes to family members, who refuse to approve the donations at the crucial moment; and emergency rooms don't have enough staff trained in dealing with potential donors, and a much lower donation rate in general hospitals than facilities with transplant programs.

This week, as Mr. Wilkie began dialysis for the first time (hooked up to a machine for three to five hours, three times a week), Federal Health Minister Rona Ambrose and Laureen Harper, the Prime Minister's wife, launched a Twitter and social media campaign to raise awareness about organ donation (#GiftOfLife).

"Each province has a registry and people sign up. But many people don't tell their family," Ms. Harper told The Globe and Mail. "My push is going to be to discuss it with your family, so when a tragedy occurs, there is no delay that can make organs unusable."

Although no money is behind the initiative, officials in the organ donation field are excited.

"It gives it a bit of a celebrity cachet," said Graham Sher, chief executive officer of Canadian Blood Services (CBS). "I think it's a very important message from the federal government, putting out the message to all Canadians to support the concept of organ donation …"

But, he said, it will not "dramatically drive performance improvement up."

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In 2011, the CBS released a blueprint for a national strategy that includes recommendations for so-called donation specialists in emergency rooms or in intensive care to help identify potential organ donors. Countries that have invested in this have seen improvement, Dr. Sher said.

Timothy Caulfield, the Canada Research Chair in Health Law and Policy at the University of Alberta, is asking whether incentives should be offered to those who donate their organs. He believes a carefully regulated system could work.

"I think we could be inventive about how it could be implemented," he said. Canadians could consider giving tax breaks to living donors, and paying the funeral expenses of deceased donors.

"It's such a sensitive topic. Every time you raise it, people assume you are talking about paying people, giving them cash for their kidneys, when in fact that is not what people are proposing," he said, adding that there is not a lot of evidence to support beliefs marginalized people would be exploited.

While all of these schemes have ethical challenges, Mr. Caulfield wants to look at them all and see "what's a good fit for Canada."

No matter how you approach it, it's an uncomfortable topic – but a crucial one.

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About 4,500 Canadians are waiting for organ transplants. In 2011, 2,124 transplants were performed and 265 Canadians died waiting, according to the CBS. Waits average seven months to three years, depending on where the patient lives or what organ is required.

"It sounds crazy, but it's almost like a wasted resource," said Anne Dipchand, a pediatric cardiologist and head of the heart transplant program at Toronto's Hospital for Sick Children. "The challenge is at that moment of that crisis, how do you make sure your loved ones know that, how do you indicate to the medical profession that you are willing [to donate] … ?"

Ms. Ambrose points to a "disconnect" between Canada's donation rate and the fact 93 per cent of Canadians indicate they want to be an organ donor or support the cause.

"Over Christmas … if you're around the table, tell your family members … you have to tell your family what your wishes are. So that's the big push," she said in an interview.

Even Mr. Wilkie, who is on a "cadaver list," is uncomfortable with the process. "I don't feel comfortable waiting for someone to die so I can live."

The response to his ad was almost instant – he received about 40 offers. Two people are being tested as possible matches.

Although Dr. Sher has "real personal concerns" about advertising for organs, Mr. Keller says "kudos" to Mr. Wilkie.

Mr. Keller found a donor from the blood clinic he organized – in the face of criticism from a senior physician in Ottawa who suggested he had an advantage because of his position and was challenging the universality of the medical system. He had his transplant in June, 2012.

"The one thing I've learned is that through all this process, is you have to be – and this is my number one message to people waiting – you have to, have to, have to be your own best advocate," he said. "No one else is going to do it for you, and there will be people within the medical profession openly and actively trying to dissuade you and stop you."

(Editor's note: An earlier version of this story incorrectly referred to Mr. Sher as the executive director of Canadian Blood Services. He is, in fact, the chief executive officer.)

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About the Author
Ontario politics reporter

Jane Taber is a reporter at Queen’s Park. After spending three years reporting from the Atlantic, she has returned to Ontario and back to writing about her passion, politics. She spent 25 years covering Parliament Hill for the Ottawa Citizen, the National Post and the Globe and Mail. More

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