Wednesday, August 10, 2011

The Need For a National Living Donation Plan

Why aren't there more living donors?

This has been a question my brain has been kicking around for awhile now. Granted, donating a kidney is not medically possible for everyone but why don't more people try? People give blood everyday, they donate money to charity. They take part in 3 day walk-a-thons and bike rides. People are willing to commit hours everywhere to support organizations in their communities.Yet living donation is rarely considered, especially the notion of donating to a stranger. Which is too bad because currently over 3,000 people in Canada are on waiting lists for a kidney transplant, according to the Canadian Organ Replacement Register (CORR). With about 35,000 Canadians suffering from kidney disease that number never goes down and has the potential to go even higher. Kidney disease can't be "fixed"; it can just be managed  with diet, medication, exercise (all depending on what the cause /illness is) until the kidneys get to the point of failure-then its dialysis till transplant or, sadly, death.

Is it just that the concept of living donation, especially in Canada, is relatively unknown? I think that is a big part of it. Living donation  has been happening in Canada for at least 40 years, although the option of donating to a stranger has only really become available in the last 5-7 years. Add to that that there isn't a really strong national program or body to promote living donation and, well, little-to-no awareness ensues. Did you see where I said "lists" above, in reference to the number of people waiting? If you need a kidney, you go on the list for your local transplant program. There also isn't a national list (like UNOS in the States) although Canadian Blood Services has been operating a paired donation registry since 2009. That's a bit different though as it does not incorporate all the people waiting for transplant, just incompatible donor-recipient pairs (where you want to donate to a love one but aren't a match but are still wiling to donate to another person so long as your family member/friend get a kidney) from across Canada. The registry compares the medical information on all the pairs in the database and identifies pairs that might be able to exchange donors. When a non-directed donor like me comes forward, they are sometimes added into the registry in order to create a domino chain.

My point is that I think there needs to be some kind of a national play developed out-a national living donation plan. First off, they need to get the logistics and process of these donation programs nailed down and make them the same across the country. Right now its about a dozen or so programs doing their own thing, with different policies, programs and testing processes in place. Some areas have more developed, robust programs in place while other (for example Saskatchewan) are struggling to keep their program open and running. If operationally things aren't consistent, then they will never get to a place where they can promote Living Donation. Secondly they need to promote awareness on a unified, national level. I kind of see where that is becoming an issue with deceased or cadaver donor campaigns and I'd hate to see that happen with living donation promotion as well. This year, Ontario launched the campaign  to encourage all Ontarians to become registered organ and tissue donors and educate them on the impact of their generous decision to give. While this is a fantastic initiative, how hard would it have been to make this a national program? Even if registrant's information (behind the scenes) were funnelled into different "lists" managed by provincial health agencies based on their address information? It just seems silly not to mention redundant to have each province needing to develop out their own, likely very similar, ways of recruiting donors.

Picture a chain of restaurants, all of course using the same branded name, but each is developing out their own menus, way of operating and marketing strategy. It doesn't take a business degree to know that it isn't cost effective or the most logical way of getting things done and that they'd be far more effective joining together. There can still be slight regional variances but by sharing best practices and creating some standardization, everyone benefits.

I understand that there was a National Task Force on living donation set up a couple of years ago involving, doctors, nurses, program coordinators etc. I am curious to see if a national solution is something they are working towards. If they are, it would also be great to develop a program that allowed for non-medical staff involvement too-donor and recipient support/advocacy roles. Either way, a national strategy is certainly needed. I hope it happens because I think it's the best strategy, that in the end will lead to more people being helped.

And P.S. it's probably cheaper for you, governments!


  1. Lauren....good posting!!!

    I've written a similar piece here's a link to it.

    I see your postings on FB too...thanks for contributing to the conversation.

    FYI, I've helped 10 NDD through the transplant process.

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