Good afternoon, everyone.
Thank you for inviting me today.
Thank you, Mr. Chair and committee members, for dedicating your time to addressing the many challenges of organ donation and transplantation in Canada.
Like Dr. Kneteman, I am part of medical teams. I am a pediatric heart transplant physician and a scientist in transplant immunology, so I can bring that expertise to our conversation today.
We really applaud your efforts in convening this study on what we can do across the country, as a country, for the tens of thousands of Canadians whose lives can be saved or improved with a cell or organ transplant.
We also thank you for inviting the Canadian National Transplant Research Program to be part of this discussion. We appreciate the importance of the opportunity to inform you about our program and our successes and to provide suggestions for what the federal government might do to increase donations, increase access to transplantation, and improve transplant outcomes.
I think all of us here today understand the life-saving and economic benefits of transplantation. We all recognize the importance of Canadians registering their intent to one day become an organ donor, should the occasion arise. Last month's tragedy in Humboldt certainly was evidence of that, inspiring more than 100,000 Canadians across the country to register online to become organ donors.
However, even with increasing numbers of Canadians being aware of the importance of organ donation, last year in Canada we had fewer than 800 deceased donors and only about 500 living donors. There are 4,500 Canadians officially on the wait-list, and I think it's really important to recognize—and this isn't necessarily generally recognized—that thousands more Canadians could be added to the wait-list. The wait-list numbers really don't reflect the true impact of this problem. This is not a niche area. Tens of thousands of Canadians could benefit from transplantation if there were any hope of finding a donor, so many Canadians who are in need never make it onto wait-lists. I think we need to bear in mind that this is a much bigger problem than what is reflected in those numbers alone.
Our system is falling short of its potential to transform lives in Canada despite the gains that have been made in recent years to return patients suffering from many types of chronic diseases, malignancies, and organ failure back to good health. Furthermore, once a person receives a transplant, we need to optimize the long-term transplant outcomes so that retransplantation isn't needed, which of course further accentuates the difficulties of finding sufficient organ donors so that transplantation can become truly a cure for these diseases.
I think it's important to recognize—and certainly we believe also—that this is solvable. This challenge is not impossible. Canada has the technologies, the people, the resources, the researchers, and the assets to solve this problem. It's not like a problem about which we would say “if only we knew this” or “we didn't know that”. This is a solvable problem. We can take much information from places in which there have been successes around the world, and I know we do, and that has been part of the discussion.
Increasing donation and increasing access to transplantation require a strong national partnership at many levels. It starts with having strong and well-funded provincial organ donation agencies, as you heard about on Monday from a number of individuals from different provinces. It requires clear linkages with health charities and with patient groups, creative partnerships with Canadian biotechnology and the pharma industry, and a well-funded national health delivery policy and coordinating agency through Canadian Blood Services, as will be noted by Dr. Kneteman and as was discussed by Isra Levy on Monday. Also critical is a strong and independent national research network that can provide the evidence, the evaluation of evidence and strategy, new knowledge, and new discoveries that will have rapid impact.
To this point, in 2013 the Canadian government, through the Canadian Institutes of Health Research, funded the Canadian National Transplant Research Program, the CNTRP, the goals of which were to put together a framework of research to unite donation and transplantation researchers across the country and across the many disciplines that make up this very complex landscape. Only in that way can we really have high and realistic hopes of moving forward.
This initiative was a result of strong partnerships among several CIHR institutes, including Infection and Immunity; Cancer Research; Nutrition, Metabolism and Diabetes; and Gender and Health; as well as our ethics office and many of our partners who you are hearing from or will have heard from, such as the Kidney Foundation of Canada, the Canadian Liver Foundation, Canadian Blood Services, les Fonds de recherche du Québec - Santé, Genome BC, Cystic Fibrosis Canada, Astellas Pharma, and several others.
What we've created in Canada now is a national research structure that is unique in the world. It unites bone marrow transplant researchers, donation researchers, and solid organ transplant researchers. There is actually no other program like it globally, and it has really become the envy of our international collaborators and partners.
I'll give you a few examples of our major accomplishments over the last five years, because I think they may help inform some of the ideas and proposals that you're thinking about in your discussions in this committee.
The CNTRP has linked researchers at 31 academic institutions and universities across Canada with central leadership provided by the University of Alberta and the Université de Montréal. We've brought together more than 150 investigators, more than 200 trainees, and more than 200 collaborators focused solely on these issues. We're supporting more than 75 tightly interlinked national-based studies that link donation, solid organ transplantation, and bone marrow transplantation together, importantly bringing the science and the clinical research together with health economics, health law experts, ethics researchers, and policy experts. On the hard sciences side, we are linking these with relevant areas in chemistry and engineering. On the humanities side, we are linking them with social scientists, policy scientists, and with machine-learning and artificial intelligence experts. All of these have an important role to play in moving this kind of work forward to have real impact on what we are considering.
We've brought patients and families into our structure as key research partners. Having the public as part of these research efforts ensures not only that we are addressing their priorities but also that we, within a research framework, are accountable to the financers of research. This helps us to evaluate the impacts and propose new projects that are directly influenced by the patient priorities.
We've launched and are supporting the world's largest clinical study in deceased donation with our ODO partners. The study is ongoing and it is transforming donation research in Canada and around the world, with many important international partners.
We've launched national trials using these new—you may have heard about them—“organ in a box” ex vivo perfusion devices. These take organs, and instead of putting them in a bucket of ice and moving them from place to place, keep them alive, functioning, and in much better condition for transplantation. This means that, with the geographical realities of Canada, we can deal with these things and move things around. These are all very creative approaches that are needed in order to really impact these questions.
We're also proposing international strategies to address transplant tourism and organ trafficking, and looking at factors that impair both access to transplantation and outcomes across the full age span, as well as integrating sex- and gender-focused research and, importantly, equity across various diverse groups.
We're addressing issues that impact access and outcomes for Canada's rural, remote, and indigenous populations and other vulnerable groups that are often overlooked.
After five years, the CNTRP has demonstrated the power of creative collaboration, and this has been emulated by several new health research networks both in Canada, such as for antimicrobial resistance and Lyme disease, and importantly, around the world including the British Transplantation Society, the Transplantation Society of Australia and New Zealand, the organization in Germany, and so on, which are asking how they too can build national networks that can have this kind of power on outcomes.
The CIHR and its partners have recently provided support for a three-year extension of our basic infrastructure, but the challenge is to find sustained funding to support this important research and to grow this network.
To this end, we're proposing ideas that were impossible five years ago. We're proposing a larger vision to fulfill every transplant donation, every donation opportunity in Canada, to not miss any, to basically get rid of the waiting list, and to turn transplantation into a cure. We call this our "one transplant for life” challenge, which we've included in the materials for you.
We believe that the CNTRP can help integrate, execute, and evaluate strategies and ideas being discussed by your committee, and we're eager to work with you.
We'd provide abundant multidisciplinary expertise, and we can bring relevant partners to the table to continue to work with you on these issues. We know we could help with some of the examples that were proposed by Ronnie Gavsie on Monday and that will be proposed today, such as a public education campaign, working with CBS to evaluate a national death audit program, and so on.
Of major importance, as I conclude, is support for Bill C-316, which is a real example of the creative nature that's needed to look at why we cannot afford to be stymied by the makeup of our country. We can turn it to our benefit and really use those sorts of strategies to get where we want to go.
In conclusion, we think this is a perfect opportunity to move forward. We're very excited about this committee's attention to these issues, and we thank you again for allowing us to present today.