Alberta’s organ donor program lags far behind other provinces

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Alberta’s organ donor program lags far behind other provinces
WATCH ABOVE: New numbers suggest Alberta's online organ donor registration rates could be better. Su-Ling Goh reports – Mar 10, 2016

Renewing people’s driver’s licences sounds like a routine job, but for Hadika Hakwik it involves starting conversations with total strangers that touch on their deep fears, their sense of ownership of their bodies after their own deaths, and, sometimes, basic anatomy.

Dozens of times a day, Hakwik is required to ask people if they’re willing to donate their organs after they die. A lot of the time, the question catches them off-guard.

“I feel that a lot of people don’t think about it, and they panic, because it reminds them of a time that none of us want to think about,” she explains.

“We’ve had to explain what organs are to clients. You say ‘Your heart, your kidney, your liver,’ and they just freak out.”

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The question can be unsettling, but Dave McNeill, a manager at Accu-Search in Edmonton, says it prods people to declare their intentions more effectively than just handing them a piece of paper which could be easily ignored.

“They’re here for one purpose, which is usually to renew a plate, or renew their licence. They’re not thinking about organ donation at all when they come in. Us asking the question gets it on the table, shockingly or not.”

“It’s just kind of an out-of-the blue question, when they just came in to renew their licence.”

Alberta’s organ donor registry, which turns two next month, is Canada’s newest.

So far, it’s also Canada’s smallest, in proportion to population — a far lower percentage of Albertans have signed on to the new registry than other provinces’ residents have to theirs.

About 220,000 Albertans, or five per cent of the province’s population, have put their names in the new registry since it launched in April, 2014.
In B.C., 20 per cent of the province’s population has signed up to be organ donors. In Ontario, it’s 22 per cent.

And numbers in Atlantic Canada are even higher — 27 per cent in Newfoundland and Labrador, 41 per cent in New Brunswick and 51 per cent in Nova Scotia.

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That seems like a small amount, but we know that about 90 per cent of Albertans support organ and tissue donation, so we have lots of room to grow,” says Sherri Kashuba, managing director of Alberta’s registry.

Kashuba uses a figure of seven per cent, measured in relation to Alberta’s over-18 population; all the percentages above are calculated in relation to total population.

“We have 220,000 Albertans now registered — 110,000 a year. I don’t think that’s low. There’s always room for improvement.”

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Alberta’s registry is ahead of where Manitoba’s registry was at their two-year point, she says, pointing out that some provinces’ registries date back to the 1990s.

The registry grows by about 2,500 people  a week, she says, 80-85 per cent of whom register as part of the driver’s licence process.

(Not allowing for loss of population, 2,500 registrants would see the registry covering three per cent more of the population per year.)

At the five-year mark, Alberta’s whole driving-age population should have been personally talked to about organ donation, at least in theory. At that point, registry officials may start to set signup targets, Kasuba says: “We’ll be in a better position to understand what reasonable targets are.”

Organ donor registration

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On the other hand, Nova Scotia’s registry is ten times as large as Alberta’s, in proportion to population, and covers most of the people in the province.

“We have a community that, generally speaking, has a small-town help-your-neighbour, know-your neighbour view of the world,” explains Stephen Beed, a professor at Dalhousie University’s medical school who is the clinical advisor to Nova Scotia’s donor program.

“I think that over time it will evolve into a great resource, but it’s slow progress,” Beed says of Alberta’s registry. “I didn’t know the numbers were that low — that’s really low.”

Global News obtained data on the registry from Alberta Health under access-to-information laws. The data showed the first three characters of the potential donor’s postal code. It appears to show the province’s highest signup rate just west of Edmonton.

However, postal code information doesn’t exist for 155,100 Albertans in the registry, or about three-quarters of the total.

“When the registry was first launched, we focused on the minimal information that we needed to be able to match the registration wishes,” Kashuba says. Postal codes started to be collected last August.

Interactive: Edmonton registered organ donors by postal code, 2016 »

Interactive: Edmonton registered organ donors by postal code, 2016

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READ MORE: Alberta takes step towards electronic organ, tissue donation system

How people are asked to register to be organ donors seems to matter a great deal. In Britain, officials experimented with different approaches to see how they affected signup rates. Some were negative (“Three people die every day because there are not enough organ donors”) and some positive (“You could save or transform up to 9 lives as an organ donor”). In the end, the best was a simple appeal to fairness. (“If you needed an organ transplant would you have one? If so, please help others.”)

Illinois increased its registration rate to 60 per cent by moving to a ‘mandated choice’ system, in which people renewing driver’s licences are forced to register a decision, the New York Times reports.

Israel gives registered organ donors a higher priority to receive organs themselves if they need them.

One idea that’s sometimes raised is reversing the opt-in assumption behind organ donor registration — moving to a system that assumes everybody has consented to donate organs unless they register a choice to the contrary.

But Beed and Peggy John, a spokesperson for B.C. Transplant, say that would create more problems than it would solve.

“The entire system is predicated on public trust,” Beed explains. “That’s a very valuable but perhaps fragile commodity. Some people — they’re a distinct minority, but boy, they make their voices loud. They bring up the Big Brother-is-taking-over-your-body kind of argument. I think that’s foolish, but it tends to get a lot more play than it should. So if we bring in something that may not improve donation very much, but is a potential risk to the trust we’ve always had in the system, then the net gain is negligible.”

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“We’re not keen on an opt-out,” John says. “It removes that aspect of choice, and this being a gift, and the whole healing power of that for donor families.”

“Canadians generally like to have a choice, and to be required by government to do things sometimes backfires more than it helps.”

Organ donations, 2008-12

Interactive: Calgary registered organ donors by postal code, 2016 »

Interactive: Calgary registered organ donors by postal code, 2016


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