Global Nephrology: The System of Organ Donation in Canada

Or should I say, “The Lack of a System of Organ Donation in Canada”.

Many people are probably unaware of the disjointed organ-donation system in Canada. I certainly was until I was sent an article in a Toronto newspaper, The Star.

Writes Julian Sher: “If you need a life-saving kidney, the worst place in Canada to be is Ontario and British Columbia where you can wait four to six years for a transplant — more than double the time than a patient living in Nova Scotia or Quebec. That’s because Canadians have to play a sort of postal code lottery, lingering on unequal waiting lists managed by each province".

Sher continues: “Canada — unlike the United States and most European countries — has no centralized, national list for people desperate for a new organ, in effect putting geography ahead of need.  And that long wait can be deadly. In the first half of 2011, 20 of the 36 Canadians who died while waiting for a transplanted kidney were from Ontario — more than all the other provinces combined. In 2010, another 80 Canadians passed away, 34 of them from Ontario.”

Sher points out that Canada also has the lowest organ donor rate in the Western world at 15 donors per million inhabitants, half the rate in the U.S. and many European countries. This is true although Australia comes in at bottom at 11 donors per million inhabitants according to statistics from the International Registry of Organ Donation and Transplantation

The other issue in Canada is that there doesn’t appear to be much consensus on how to solve the problem. In a follow-up article in the Toronto Star, Dr. Jeff Zaltzman, (Director Transplant St. Michael’s Hospital, Associate Professor of Medicine, University of Toronto) writes:

“The solution is obvious: create a national donor list of people willing to donate a kidney, add safeguards around the decision-making, and compensate donors fairly for their generosity, reasonable expenses, and time away from work, perhaps in the range of $50,000.” Most of us would disagree with this approach because several European countries have improved their organ donor rates without going down the “Paying for Kidneys” route.

In fact, a European report titled “Organ Donation and Transplantation and Policy Options at EU level”  suggests that programs learn from those that are most successful, such as Spain and Italy. One of the lessons from these countries, says the report, is that these countries avoid fragmentation of resources. This is a clear problem in Canada where each province has it’s own organ donor system and has developed it’s own infrastructure.

Spain is at the top of the list for organ donor rates and part or all of it’s initiatives have been copied elsewhere and should be seriously looked at by Canadian policy makers.

The core element of the Spanish model is national coordination of all aspects of the organ procurement and transplantation system with dedicated organ donation coordinators and transplant teams within hospitals. Spain also has presumed consent (or “opt-out” consent) legislation in place.

The Organizacion Nacional de Trasplantes (or National Organisation for Transplants-ONT) is the agency in Spain that is responsible for coordination of organ donation and transplantation activities.

The Spanish national health system comprises all facilities and public services devoted to health, with public health care available for almost the entire population. Organ transplantation has a specific budget allocation which pays for: the organ procurement network, the salaries of coordinators and retrieval teams whilst involved in transplantation activities, any tests to determine donor suitability, ICU bed costs, and training and education programs. The reimbursement by national and regional authorities of hospital costs related to the transplantation process is seen as being of key importance in sustaining the involvement of smaller hospitals in the organ donation process

Matthew Thomas and Michael Klapdor in a 2008 review of the Spanish Donor program write in a report commissioned by the Australian Parliament:

They write: “This agency [ONT] maintains waiting lists, registries, compiles statistics and operates training programs for medical professionals.”

Within each major hospital specific organ transplant units operate on-call under the direction of designated organ transplant coordinators. Coordinators—who are preferably physicians—work within an intensive care unit and are responsible for recognising potential donors, providing information and counselling to families, and for the organ retrieval process. Regional coordination centres support activities in smaller hospitals. Coordination teams work apart from the surgeons who are actually involved in the process of transplantation, and are therefore focussed on identifying potential donors and on supporting the families of the deceased.[40]

Transplant law in Spain operates under a presumed consent, or opt-out system. However, families must be approached and sign an authorisation in order for the procedure to take place. Presumed consent was introduced in Spain in 1979 but it was not until 1989 when the ONT was established and a comprehensive government effort made that organ donation rates began to rise. In 1989, the donation rate in Spain was 14.3 dpmp. This rate rose steadily over a ten year period and has remained close to the current rate of 34.3 dpmp since.”

Key contributory factors to the rise in the number of donors in this period were the establishment of national coordinating efforts, a change in donor profiles, with those over the age of 60 coming to represent more than a third of donors, improved identification of potential donors and specific funding for organ donation and transplantation activities in hospitals.”

The bottom line: Canada should take a leaf out of the Australian approach and set up a national taskforce on Organ and Tissue Donation. This taskforce should develop a consensus on the vision and implementation plan for a national coordinating agency. The taskforce would also need to decide on whether to adopt the Spanish opt-out, or presumed consent system (in Australia, the taskforce recommended against it). As well, the taskforce will need to decide whether there should be incentives or payments for organ donation.