Health Committee on May 9th, 2018

[The Chair, Liberal, Bill Casey]

We'll call the meeting to order. I welcome everybody to meeting 105 of the Standing Committee on Health. We're going to continue our study on organ donation.

Before I start, I just want to explain what happened regarding having double meetings, because I know that surprised everybody. I checked with Joel, and he said he had emailed everybody and asked if they wanted to do Monday morning or a second meeting on Wednesday afternoon. Four members, I guess, couldn't come on Monday, so he just put the second meeting on Wednesday. That's why we have two meetings today.

Today, as witnesses we have, from the University of Alberta, Dr. Norman Kneteman, professor and director of the division of transplant surgery. From the Canadian National Transplant Research Program, we have Dr. Lori West, director; and David Hartell, executive director. From the Kidney Foundation of Canada, we have Elizabeth Myles, national executive director; and Laurie Blackstock, a volunteer from the national office.

I welcome you all, and I really appreciate your taking the time to come and share you knowledge with us.

We're going to open with 10-minute statements by each, beginning with Dr. West.

[Dr. Lori West, Director, Canadian National Transplant Research Program]

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.

[The Chair, Liberal, Bill Casey]

Thank you very much. Your passion shows very clearly.

We're going to go now to Dr. Kneteman.

You have 10 minutes.

[Dr. Norman Kneteman, Professor and Director, Division of Transplant Surgery, University of Alberta, As an Individual]

Thank you very much.

I'd like to thank you, Mr. Chair, as well as members of the Standing Committee on Health, for the opportunity to speak to the role of the federal government in improving access to organ donation.

We have dealt with a number of challenges for much of the last 30 years. Canada was stuck at an organ donation rate that was less than 15 per million of our population. This was less than half that for some of the other countries in the developed world. Many activities, both provincially and federally, were carried out to try to impact on this, but they were not very effective. I feel this very significantly, because I was involved in many of them.

One of the patterns that became apparent to me through this was that we had several reports—the Volpe report, DM Report, and the Alberta Framework for Action's report. Virtually none of these, however, came with the funding or organizational structure necessary to actually move things forward. So it was with more enthusiasm that I viewed the 2008 proposal to develop an organization within the Canadian Blood Services that would take on this very important role of organ and tissue donation and transplantation.

I certainly don't have to speak to this group about the challenges of working in an area like health in Canada's federal system where, through the Canada Health Act, we have funds flowing to 10 provinces and three territories, and the administration and delivery of the services is the responsibility of each individual province or territory. That being the case, we end up with 10 different organ donation organizations across the country. One of the challenges with this is the patchwork system we have in how we try to carry out this important job.

One of the real accomplishments over the last decade, however, has been the surveys of other countries around the world that had high-performing donation systems. These include the United States of America, Spain, and some other countries from which we have learned some very important lessons that these high-performing systems have in common.

I've listed 10. They start with a system-wide network of donor coordinators and donation physicians—dedicated professionals who actually take this on as a part of their job. In addition, they incorporate a medical record review allowing these professionals to look at each death that occurs to understand if there was a missing opportunity for donations so that they can avoid missing it next time. On top of that, they have online intent-to-donate registries, which, although the legal authorization to proceed from them has moved forward, remain a challenging and long-term strategy.

Legislated mandatory referral of potential donors to organ donor organizations is another important factor. There is also the implementation of all of these types of leading practices, so we need some organization that can help to implement these across the country. This needs to be backed up by professional education, and then, as Dr. West has noted, we need to have the ability to gather information to see how we are doing in these areas. Are we being successful? Where are we missing opportunities? How can we change to improve?

Backing all of that up, we need to have the capacity to carry out this transplant activity. Of course, we also need funding for the organ donor organizations. One factors that is important in all of those countries that have succeeded is a national coordinating agency.

Within the last decade in Canada, there have been many strategies put forward to try to solve these problems. One of the critical points is the understanding that this is an activity donation that occurs largely in critical care units and sometimes emergency departments, so we need to have the critical care physicians onside and very much involved in leading this activity.

We also need the professionalization of our donation services, not the way it was 25 or even 20 years ago when most of this was carried out by physicians who were basically taking extra time, volunteering their time, to try to help out. This is a critical job that has to have professionals who are experts in the area providing this important service.

We need research to inform our health policy and practices as well as to develop national leading practice guidelines and put them in place for each step in the donation process.

Over the last decade, we have made some progress. I think this backs up Dr. West's statement that we can have an impact in this area. In fact, we are seeing some impact already. Over the last 10 years, we've had a 50% increase in donations in the country. That's very impressive, but it's still only part of the way. We still need another 50% increase to catch up to what we might call the standard of care in this area.

The next slide shows how the rates of donation vary tremendously province to province, and even year to year. If we look at this slide, we can see that Ontario has had tremendous growth in the last decade. I think that's been because Ontario has committed significant funding and has built a very effective organization in this area. Unfortunately, that's not the case in all of the provinces across our country, and so we have a bit of a patchwork. We obviously have a tremendous opportunity to improve as a nation in this area.

This next slide looks at some of those factors that contribute to high donor rates, as we've picked up from our evaluation of other countries around the world. It shows what is in place and what is not in place across our country. Now, after 10 years, one would hope that this entire slide would be a series of green dots, showing that we are all doing the things that we already know are effective. As you can see, it's far from that. As a result, when you go down to the bottom, you can see the deceased donor numbers vary tremendously from province to province—as low as nine and as high as 21. We have tremendous variation and still, because of that, we can see a real opportunity to improve across the country.

I bring special attention to three of these areas: the role of professional donation physicians; having systems, by law, that have a mandatory referral of any potential donor; and, implementation of new ideas, like the “donation after cardiac death” that has been put in place over the last decade.

If we look at the top two bars there, we can see that a couple of provinces—B.C. and Manitoba, both with green dots—have put these processes in place. I don't think it's coincidental that if you look at the bottom line, you can see that the number of donors over a five-year period increased 76% in British Columbia and 89% in Manitoba. Unfortunately, not all the provinces have had the same performance over the last five years, which points out a real opportunity for improvement.

As I mentioned, donation after cardiac death is a form of organ donation that was, in fact, the first way it was always done, before the development of the so-called brain death criteria. This has come back as another alternative. As you can see, Ontario again has led the way with the very effective development of such a program. You can see that it's now contributing seven donors per million each year. B.C. is close as well. Many of the other provinces, including all those across the Prairies, are just getting started.

This slide, perhaps better than any of the others, demonstrates the marked variation across the country. In Ontario, as I mentioned, one area in which they really have invested is the implementation of donation physicians across the province. As you can see, there are 66 donation physicians in the province. That's five per one million of population. In contrast, I might point to my own home province of Alberta with two, and Saskatchewan with zero. We have tremendous variations across the country, which is not optimal by a long ways.

To summarize, we can see that we have the ability to impact this area. We have increased our donors by 50% or 60% over the last decade. We have seen some of the major factors that have been important in that. We are now into at least the top 20 in the world, but we can do a lot better. It's clear that local, provincial, and national programs have all contributed to some of this success. Several of the provinces that have invested and built systems and agencies that take this job on and do it well have seen very substantial improvements in the ability to deliver care. This is not just in delivering donations, because, of course, this is what really determines the access that patients in our province have to life-saving treatments like liver or kidney transplantation; this is really the essential part of the formula that allows a surgeon like me to help these people who are in critical need.

While the progress that we're seeing is encouraging, much more work is needed in Canada to bring us closer to the best. Again, provinces that have implemented these features of high-performing donation systems are seeing the greatest results, demonstrating that we can improve across the country.

Where can a national system add to performance? Certainly, there are areas in which the entire Canadian population of donors is needed to address a problem effectively.

In addition, I think we can have a national system that can help support the implementation of strategies that have been proven to help donation, but do it across all the provinces, not just some. We need to be able to build a national database of activity and outcomes for both organ donation and transplantation that can support decision-making and research. We also need stability and long-term funding for a national agency that would support and guide donation and transplantation.

What are some of those areas in which we need the entire population to address a problem? There are several, and first I'll talk about the situation of an individual who is exposed to either a blood transfusion or childbirth. When we're exposed to the antigens, the proteins of another individual, our immune system reacts as it should. It creates antibodies against them, just as it would if we were immunized or if we were exposed to an infection. The challenge is that this then creates a situation in which we are effectively immunized against receiving a transplant.

There are people in our population who may have this antibody level against 99 out of 100 people in the population, making it extremely difficult to have an HLA match that would be successful for them. It's only when we can look at a group of millions of potential donors that we can overcome this problem.

In addition is paired kidney living donor exchange. If, let's say, a husband wishes to donate a kidney to his wife and he is blood group A and she is blood group B, that won't happen; that won't work. However, if we can find another couple who has the opposite, they can swap and that can work well. These two programs that have been active for the last three or four years have allowed 1,000 kidney transplants to be carried out in Canada that would not have been done otherwise.

We also have other areas for which I have illustrated how we can support implementation across the provinces to build a national database so we know what we're doing. Unfortunately, if I want to do research right now on how to do transplantation better, I have to go to the United States to look for that information.

In closing, I think it is important that we take the agency that has been put in place and given this job.... There is the organ donation and transplant section of Canadian Blood Services, but unfortunately at present it still struggles with a very limited budget that is renewed every three years on application. I think we need much more solid and stable sorts of funding for this type of a national agency.

Thank you so much for your attention. I look forward to your questions.

[The Chair, Liberal, Bill Casey]

Okay, thanks very much for that.

I hate to cut you off, but we're anxious to get to questions.

Now we go to the Kidney Foundation of Canada for 10 minutes.

Elizabeth.

[Elizabeth Myles, National Executive Director, The Kidney Foundation of Canada]

Thank you, Mr. Chair, and committee members. On behalf of the Kidney Foundation of Canada, I am very pleased to be here today with Ms. Laurie Blackstock, who has a family member on dialysis due to kidney failure, and her husband and her aunt were both deceased organ donors. I'll speak a little bit first and then she'll speak about her experience after.

I would like to start by thanking you for your invitation to appear as a witness today. In spite of the advances in the number of organ transplants over the last few yeas, Canada is still significantly short on the number of organs available to meet the needs of thousands of Canadians awaiting life-saving transplants. There is an urgent need to improve our organ donor and transplantation system.

About 4,500 Canadians are waiting for an organ transplant, and more than 75% of those on the waiting list are waiting for a kidney. There are far more people waiting for transplants than just those on the wait-list. Of the 22,000 Canadians whose kidneys have failed, who require dialysis to live, only about 16% of them are on the transplant wait-list. Access to a transplant is a matter of life and death for people with kidney failure.

The other treatment option is dialysis, which is a life-sustaining form of therapy. Dialysis saps away patients' time, energy, quality of life, and eventually, life itself. The five-year survival rate for someone on dialysis is less than 45%, which is a worse prognosis than that for many cancers. In contrast, the five-year survival rate for someone with a deceased donor transplant is 82%.

Gwen, a nurse and mother of two, describes dialysis as more like life-support than living. She describes kidney disease as having eroded her life, thereby robbing her of her profession, her energy, and her ability to think clearly, until all that she was left with was “a tired, painful, small, isolated life”. After her kidney transplant, she got her life back and is living a life filled with creativity, laughter, and meaningful work.

In addition to giving a patient survival and quality of life, transplants can save the health care system significant money. The total annual cost of dialysis ranges from $56,000 to $107,000 per patient. The cost of a transplant is about $66,000 in the first year and about $23,000 in subsequent years. Therefore, the health care system can save up to $84,000 per patient transplanted, annually.

In spite of all the benefits of a kidney transplant over dialysis, the number of people waiting for a kidney transplant is roughly double the number of kidneys transplanted. There were 1,731 kidney transplants in 2016. The median wait time for a kidney transplant is four years, ranging from 5.7 years in Manitoba to three years in Nova Scotia. Every year kidney patients on the wait-list die while waiting for a transplant or are removed from the wait-list because they are too sick to undergo a transplant. This is the tragic reality for thousands of Canadians who suffer from kidney disease as well as for their families.

The biggest tragedy is that many of these deaths could be avoided if improvements were made to the donation and transplant systems across the country. In an environment where the supply of donor organs is low and demands are high, missed opportunities for donation are a matter of life and death. Only 2% of hospital deaths meet the criteria for deceased organ donation, yet only one in six becomes a deceased donor. Donor organs are rare and precious. Each deceased donor donates four organs, on average, so every missed potential deceased donor means depriving at least four Canadians of a life-saving transplant. People are needlessly dying because of system failures for organ transplants.

The federal government can improve Canada's organ and tissue donation and transplantation system by implementing a national strategy. Oversight is required to ensure that every potential deceased donor is identified and has the opportunity to save lives through organ donation and so that every person awaiting transplant has equitable access to organ transplantation across the country.

This includes the implementation and monitoring of best practices, public and professional education, and the development and coordination of an advanced interprovincial organ-sharing system.

The federal government can also improve the system and save lives by promoting living donation through public awareness and reducing barriers for the donor and recipient. This includes implementing practices to reduce the amount of time it takes for a potential donor to be screened and continuing to support living donors and living donation programs such as the kidney paired donation program.

Finally, the government can support research to improve graft outcomes and the availability of organs for transplant for more people with kidney failure.

Thank you.

[Laurie Blackstock, Volunteer, National Office, The Kidney Foundation of Canada]

I'm here to help personalize the need for a national system. As Elizabeth mentioned, my father lives on dialysis, and last year my husband became a deceased organ donor.

To help support my father, my brother has quit his job as a teacher and moved home to the family farm to be there for him. He's not allowed to live alone. He travels about 30 minutes one way to a hospital, spends four hours at the hospital each time, and then travels back home. As a result, his energy is depleted. He mostly watches TV now and reads books instead of being out on the tractor and mowing the lawn.

My husband's story is harder to tell. Last year I came home from a winter camping workshop and the house was dark. I came in and I could hear banging on the second floor. I went up the stairs and I found my husband in non-stop seizures, unconscious. He was rushed to the local hospital, where he had a heart attack in addition to the seizures. The main thing was that they brought him back to life. He was living. They got him to the Ottawa Hospital, where he was sent to the ICU and put on life support. If he hadn't lived long enough to reach the ICU, he would not have been able to be an organ donor. Of course, I wasn't thinking about that at the time; I wanted him to live.

After about two days, it was clear that although the ICU doctor and nurses did their best to stop the seizures, my 57-year-old seemingly healthy husband probably would not survive. That's when they began to speak to me about organ donation.

The timing was right. He told me that he had checked the donor registry. He knew that Stephen had consented to organ and tissue donation. At that moment, surprisingly Stephen's mom and I were lifted up by this news. We could tell we were going to lose Stephen. There was very little chance that even if he survived he would function, so this opportunity was a gift, and it immediately felt like a gift. It gave us something to cling to.

The doctor explained that there was a Trillium Gift of Life coordinator in the other room ready to speak to us if we had already made our decision or if we had any questions. He said explicitly that he and the coordinator would never be in the same room at this stage so that we didn't feel outnumbered or pressured to come to a positive decision about donation. For me, that was important.

He stepped out, Stephen's mom and I conferred, and then the Trillium Gift of Life coordinator entered at our request when we were ready. She explained that if we agreed to Stephen's wishes, it would mean he would be on life support for an extra day. They'd try to get him off as quickly as possible, but it would take at least a day to bring together the transplant team and the potential recipients to begin the matching.

At that moment, knowing that my father was on dialysis, I wondered if one of Stephen's kidneys could be transplanted to my father, and wouldn't that make a great movie? But life isn't a movie, and my father was not eligible for a transplant. Of course, we were still thrilled to know that in another day probably several families—up to eight—would be utterly joyous, while we continued to grieve. Although we were in despair at our loss, we didn't want to deny other families the possibility that their loved one could be saved and live a much healthier life.

A week after deciding that I'd be an advocate and an educator, I received the best thank you card ever. This is from the young man who received a double lung transplant and is now breathing through my husband's lungs. He said he was able to spend Christmas at home with his family for the first time in three years. He's building skills that he couldn't have otherwise, after many more years in the hospital. What touched me most was that he said he thinks of his donor family every time he breathes. His last line was that the word grateful couldn't begin to describe how he felt. He thanked us and said that we had saved his life.

I'm here to emphasize that organ and tissue donation doesn't just help the recipients and their families. It doesn't just reduce the tremendous cost of long-term kidney treatment. It can also be an incredible gift to bereaved families like mine, because when presented gently and ethically, at the right time, when there's little or no hope of a loved one's survival, it is a gift. Knowing that five people's lives probably improved dramatically with Stephen's lungs, kidneys, and corneas doesn't change his death and the intensity of our grief, but it gives us moments of relief.

Stephen lives on through those five people.

[The Chair, Liberal, Bill Casey]

Thank you very much for sharing that with us. There's no other way we could ever appreciate or hear or understand that, other than hearing it from you. It's quite a story. It means a lot.

We're going to go to our seven-minute round of questions, starting with Mr. Oliver.

[John Oliver, Liberal, Oakville, ON]

Thank you, Chair.

Thank you very much, Laurie, for your testimony and for sharing that very personal story, how it has impacted your life, and how it has impacted others around you. I notice you've been very busy with the Cancer Society, Gift of 8, and different campaigns. You've been a real champion for different causes, so thank you for all you've been doing. It's great to meet a Canadian like you, for sure.

We've been listening to testimony from other groups as well. As a committee, we ask what we can do at the national level? We can write a recommendation to the minister and to Parliament, around strategies. Here's what I have picked up so far.

Number one, develop and implement a sustained national multimedia campaign to promote donation.

Two, increase the opportunities for donors to identify themselves as donors. At the federal level, we heard we could be using tax forms. Besides ServiceOntario, we could use Service Canada and various forms like that.

Three, promote enhanced interprovincial sharing of organs, particularly for people with more difficult and special circumstances.

Number four came out of what I heard today as much as from before. It sounds as though we have a national coordinating agency, but it may need to be more robust. It should be doing best practice identification, and maybe even implementation strategies. I am astonished, to be honest with you, at the variation across Canada by province. That tells me that provincial leadership is essential. When I look at the differences between Ontario and Nova Scotia versus Alberta, Saskatchewan, Manitoba, and Newfoundland and Labrador, there is a huge variation. That's where those best practices and strategies could be brought to bear, for sure. There's also a need for a national database for research, which I'm assuming could be operated by a national coordinating agency.

The last one—Laurie, you hit the nail on the head again—was what we heard from the Trillium Gift of Life witness at our last meeting. I used to run a hospital, and I know that in just the last two or three years, in around 2013-2014, the Gift of Life model changed. It stopped being left to a doctor or a nurse in the ICU or the emergency department to talk to the family. Those people are not geared to organ donation conversations; they're geared to life-saving strategies, so making that switch was almost impossible.

There's now a requirement in Ontario that you must report certain brain deaths to Trillium Gift of Life and pass the information on. Trillium Gift of Life then handles the conversation, and if it's acceptable to the family, an on-the-ground organ retrieval team comes out and works with the family and extracts the donated tissues.

When I look at the numbers in Ontario, that is the real boost that has happened—that really proactive approach by Trillium Gift of Life. I really want to push that need for support at the hospital in emergency and in the ICU by the provincial equivalents to Trillium across Canada, and the on-the-ground team that's ready to come out to the hospitals and assist the local caregivers.

That's my list.

Is there anything else you'd want to add to that, in terms of our coming up with recommendations?

[Dr. Lori West]

I think the case should be made regarding the importance of a continued national research framework that can drive some of them. I think you're correct that it's not just a matter of having a national database that can be housed and that has been created by CBS and is very helpful; the many levels of multidisciplinary research that really impact all of these aspects are, I think, really crucial.

[John Oliver, Liberal, Oakville, ON]

Can you be more specific? What areas would you see the national research being needed in?

[Dr. Lori West]

Taking the framework that has already been well established and has been successful and funding it in a sustainable way—

[John Oliver, Liberal, Oakville, ON]

Yes, sorry, I had funding down here.

[Dr. Lori West]

The most logical way to do that is to continue to do it through CIHR , because that has allowed this to develop that way. This is not part of CBS, but it works very closely in successful partnership with CBS, and that works really well. I think having a sustainable future for this kind of research makes perfect sense and could be done. This is where Canada leads the way already.

[John Oliver, Liberal, Oakville, ON]

Okay, it needs sustained funding.

Norman, do you have anything?

[Dr. Norman Kneteman]

I'd make two points. One, as I pointed out, is that mandatory referral of potential donors is going well in Ontario. These areas that we talked about, which are so important—and you pointed them out—do not happen across the country. Two, having donation professionals involved in the discussions and the questioning is also critical. The challenge, of course, is that no provincial organization, no matter how well meaning or well funded, is going to be able to take the lead to do this across all the other provinces, so we need some national organization that is empowered and required and funded to do this.

With regard to the national database, 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 Lori's talking about, have something to work with.

I think those two things as a start would be very important and could have a real impact.

[John Oliver, Liberal, Oakville, ON]

It's hard to get your mind from that high-level research data compilation material to what really happens in the emergency room at three in the morning when somebody comes in with a traumatic head injury, and how you have that conversation in that space and time. It's the on-the-ground part and it's also the broader registries.

[Dr. Norman Kneteman]

Certainly, I don't think it's for a group like ours to try to get down to that level of exactly what steps need to be done day by day, but having the system in place that can do these things, I think, is the critical factor.

[Dr. Lori West]

Mandatory reporting is a key element that works in every jurisdiction.

[John Oliver, Liberal, Oakville, ON]

Is there mandatory reporting across Canada now?

[Dr. Lori West]

Do you mean the need for mandatory reporting?

[Dr. Norman Kneteman]

It's all voluntary.

[The Chair, Liberal, Bill Casey]

Okay, we have to go to Mr. Webber.

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you, Mr. Chair.

I again want to thank the committee for allowing this study to happen here today.

I also would like to thank our witnesses here today, our presenters, for coming all this way, in particular, Dr. Lori West for mentioning in her presentation Bill C-316, which, if passed, would allow Canadians to indicate their desire to be organ donors through their annual tax filing.

Also, thank you, Laurie Blackstock, for your story and your volunteerism and your advocacy, and thanks to your husband as well for his great gift of life.

Mr. Oliver did a very good job of summarizing what we have been hearing the last couple of days with regard to what we can do as the federal government to help support the organ and tissue donation system here in Canada. The additional comments you made here today are very helpful.

I do have some specific questions really quickly here.

One is to you, Dr. Lori West, regarding your presentation and the document you provided. First, thank you for your great work in research as well. You mentioned here that you have a solid track record of success, which you do. One thing in particular, I noticed here, is that you uncovered the legal, social, institutional, and professional challenges that contribute to the family veto of previously registered intent to donate. I would like you to elaborate on that. Are we seeing many situations in which families are vetoing the wishes of the potential donor?

[Dr. Lori West]

I think everyone realizes what a complex landscape this is. There are many factors, both large and small, that contribute to our ongoing issues with organ donation. This is one example of how something that we originally thought and were told was not a very important obstacle to increasing donation has, in fact, turned out to be very important, quite numerous, and quite frequent.

This is work done through combined efforts and led by Tim Caulfield at the University of Alberta. Despite the fact that in examining the legal landscape in every province across the country about the requirement for permission for what happens when you sign up to be an organ donor, and despite your entering into a legal event by signing an organ donor registry, your family can override your own wishes. They could never decide that you can't donate your fortune to a cat when you die, but they can easily say they don't support organ donation by an individual who had a legal entity saying that they wanted to.

This is actually much bigger and more common than we had previously known. Again, it's one factor in many. However, these are the things we can potentially address by looking at each one of these obstacles to donation.