Madam Speaker, I am pleased to stand on behalf of the New Democratic Party of Canada. All my colleagues in our caucus and I offer our support to this important bill.
Canada's New Democrats believe that we must make every possible effort to ensure that every Canadian who needs an organ or tissue transplant receives it. We know that one donor could save up to eight lives and benefit more than 75 people, yet at 18 donors per million people, Canada's current donation rate puts us in the lower third of developed countries. Therefore, I particularly welcome this bill as an attempt to try to remedy that unfortunate state of events, because allowing Canadians to register as an organ donor through their tax returns will no doubt help increase registration rates, improve consent rates and help build a donation culture in Canada.
By way of background, Canadians are currently dying on wait-lists because our organ donation rate is so unacceptably and unnecessarily low. At present, only 20% of Canadians have joined their province's organ and tissue registry. Provinces like Ontario are taking steps to make it easier by asking about organ donations on health card and driver's licence renewals, which has increased registration. However, even with everything in place, some 20% of families refuse to transplant a registered donor's organs.
In its recent study on organ donation, the House of Commons Standing Committee on Health learned that of the 4,492 Canadians currently on the wait-list, 260 died waiting for an organ in 2016. In order to better meet that demand, improved coordination across provinces and territories is absolutely required.
Bill C-316, the bill before the House, allows the federal government to coordinate with provinces and territories to allow Canadians to register as organ donors through their federal tax filing. In this case, individuals would be required to consent to the sharing of their information before the agency would share that information with the provincial and territorial levels of government for the purpose of receiving information that hopefully would result in their being added to an organ donor registry.
I pause here to say that, in my view, it would be better if there was a box on everybody's tax return that taxpayers could check off to directly indicate they want to be a donor and the information would go straight to an actual organ donor registry. That is not what this bill does; however, in my opinion, it is worthy of support, because I think it will improve the situation, but I think that a more direct portal and a national registry is ultimately a better way to go.
Of course, this bill aligns with the long-standing advocacy and legislative work of New Democrat members of Parliament around organ donation. This bill is essentially a version of a previous proposal to create what I just referred to, a pan-Canadian organ donor registry, that would coordinate and promote organ donation throughout Canada. That bill had previously been introduced seven times both by Liberals and New Democrats. Judy Wasylycia-Leis, a New Democrat member of Parliament from Winnipeg, introduced a bill in 2002, 2003 and 2008. Malcolm Allen, who was a New Democratic Party member of Parliament from Welland, introduced a bill in 2009 and 2013. Unfortunately, of those five times that New Democrats have introduced bills to set up a pan-Canadian organ donation registry, neither the Conservative nor Liberal governments have ever taken up that excellent idea that would save lives.
I want to share some facts with members and any of the Canadian public who might be watching this debate.
While 90% of Canadians support organ donation in concept, less than 20% have made plans to donate. Unlike the United States, Canada does not have a centralized list of people waiting for an organ. The current Liberal government voted against a bill in 2016 that would have supported the creation of a national registry to align with the United States to help identify those wishing to donate an organ and those who need them.
That leaves us with a patchwork of provincial and territorial systems, the efficiency of which varies greatly from province to province. In the case where someone dies outside of the province where the individual is registered for organ donation, it is unlikely that the hospital would be able to identify the individual as a donor. This is one of the reasons that a centralized national registry is so much better.
Online registration is available in only five provinces: my province of British Columbia, Ontario, Alberta, Manitoba and Quebec. Even if someone is registered as a donor, the family always has the final say. In Ontario, about one in five registered organ donors have their wishes overridden by family members, according to a 2016 report in the Canadian Medical Association Journal.
To put this into perspective, for every patient in Canada who does receive an organ transplant, there are two more on the wait-list. In 2016, over 4,500 people were waiting for organ transplants, 2,800 organs were transplanted and, again, 260 people died waiting for a transplant that never came.
In the past 10 years, the number of deceased organ donors has gone up, but the number of people needing a transplant has also gone up. In fact, over 1,600 Canadians are added to organ wait-lists yearly. While most Canadians consent to donate after death, it is also possible to donate organs while one is still alive. Living donors who are the age of majority and in good health can donate a kidney, part of their liver or even a lobe of their lung. About 1% of Canadians who die in hospital donate an organ, but 99% do not, which works out to about 18 per million, about half the rate in countries such as Spain, which is 34 per million, and the United States at 26 per million.
I want to talk about the presumed consent system, because that is why countries like Spain and other European countries have organ donation and transplant rates that are twice as high as Canada's. It is because they have moved to a presumed consent system, which means that every citizen is presumed to consent to be an organ donor unless they choose otherwise. Individual choice, of course, is respected, but it vastly increases the pool of people who are available for organ donation.
The truth is, as I said earlier, over 90% of Canadians agree with the concept of organ donation, but it is difficult or confusing for them to know how to do that, and so most of those wishes go unexpressed. However, if we changed our system to a presumed consent system, we would have the best of all worlds. We would still respect individual choice for those who, for a variety of reasons, do not want to donate, but we would vastly increase the number of organs and tissue available for donation and hence save the lives of so many more Canadians who are waiting for an organ transplant.
It is funny that Canada is the only developed country without national organ donation legislation such as the 1984 U.S. National Organ Transplant Act. The comments that I am making were borne out repeatedly when we studied this bill at committee, and I will read some of the comments we received from people with respect to a national database.
Dr. Norman Kneteman, professor and director, Division of Transplant Surgery at the University of Alberta said that:
...the Canadian Transplant Registry that CBS has built is in place; the computer system exists. The challenge is how we get the information into it. In Canada, all the reporting and transplant and donation in our history has been voluntary, and because of that, it's full of defects; it's not reliable. We have to get beyond that, and we need to be thinking about how we are going to fund the activity of getting the information into the database so the professionals, the researchers...have something to work with.
The Kidney Foundation of Canada backed that up. It said:
Currently, there is a lack of data concerning missed donor opportunities in Canada, which stems from inconsistency in the frequency, methods, and scope of data collection between jurisdictions. Furthermore, this data is not centrally accessible to patients on the waitlist, researchers, clinicians, administrators, or policy makers. Current Canadian approaches to measurement and reporting of potential donor identification and referral are fragmented and lack consistency, timeliness and accessibility of information.
It is rare that one can identify a policy response to a problem that is so obvious and achievable. We need a national organ donor registry in this country. We need a presumed consent system in this country. Why? It is because those two policy initiatives have been identified by all the stakeholders and all the experts. We know that it will increase organ and tissue donation in Canada and save lives. The New Democrats will continue to work towards those ends.