Thank you, Leanne, and to the committee for this opportunity.
I'll touch on five comments.
First, we've developed strong partnerships with the in-hospital critical care community's support health care professionals in offering the option of organ donation as a part of quality end-of-life care. In B.C. we have donation committees at the provincial health authority and hospital levels to review compliance to regulations that identify opportunities for quality improvements. A vital element of this is a robust education strategy for staff in emergency rooms, critical care units, and operating rooms. We provide education, tools, and support to hospitals with the goal of ensuring that all families faced with a tragedy have the opportunity to consider organ donation.
Second, we now have a network of system-wide donation specialists and in-hospital donation coordinators, who work collaboratively with critical care donation physicians and regional hospital-based critical care teams to support organ donation at the hospital level. Our 24-7 team of organ donation coordinators receive referrals from across B.C. and provide expertise in supporting families, the consent process, and donor management. Our organ recovery team travels to hospitals throughout the province to recover organs. This is a patient and family-centred model that allows organ recovery to occur at the hospital where the donor is located and allows families of donors to be with their loved ones for as long as possible.
Third, we are also working with hospitals across the province to expand organ donation opportunities by offering donation after cardiocirculatory death in a steadily increasing number of hospitals, including small hospitals outside of B.C.'s major urban centres. This offers another end-of-life option for families facing the sudden death of a loved one in hospital, and it also expands the number of potential organ donors.
A fourth fundamental infrastructure component for high-donation performance is the implementation of national leading practice recommendations led through the Canadian Council for Donation and Transplantation and Canadian Blood Services. These include standardizing guidelines for neurological determination of death, standardized guidelines for donation after cardiocirculatory death, donor management guidelines, donor family support and effective requesting as part of quality end-of-life care, and donation after medical assistance in dying.
The fifth and final component is public awareness, understanding, and support for organ donation, which are all critical to the success of an organ donation system. To that end, we have a strong public awareness, education, and community relations program. Underpinning this program is the provincial organ donor registry. While it serves a clear purpose for our organ donation team working with families' potential donors, the registry serves an additional public engagement purpose as a tool to enable public conversations about organ donation. Registering a decision is the key call to action at the heart of most public awareness campaigns on organ donation in B.C. and across Canada.
Where we've had additional success is through partnerships with the organizations that serve as touchpoints for the citizens of British Columbia. The first is with Service B.C., which has 62 locations across the province where people can access support for programs and services offered by the provincial government. The second is with the Insurance Corporation of British Columbia in their driver licensing offices, where people obtain or renew their driver's licences and service cards. When people visit these offices, they are asked about organ donation, and then they may have a conversation about the subject and register their decision. The majority of registrants in the organ donor registry now come through these two partnerships. In the year of the full ICBC partnership, decisions registered in the registry increased by 15%. More than 1.2 million British Columbians have registered their decision since the registry was established.
We also maintain a robust program of public education and outreach, which involves advertising, media relations, and social media engagement aligned with national initiatives such as National Organ and Tissue Donor Awareness Week, at the end of April. We have a robust network of volunteers, which includes organ donor families, living organ donors, and transplant recipients, whose stories drive awareness and support for organ donation. These volunteers are highly engaged in our community and workplace events and campaigns.
The work around public engagement and awareness helps to normalize conversations about organ donation and transplant in our communities and within families, so it can be seen as an acceptable and normal end-of-life option.
Thank you very much for the introduction.
I'm Isra Levy. I'm the vice-president of medical affairs and innovation at Canadian Blood Services, and there I work with our organ and tissue donation and transplantation team, supporting and coordinating Canada's provincial and territorial donation and transplantation organizations, programs, and clinicians in their critically important and life-saving work at the bedside.
I am pleased to be joined by my colleague Amber Appleby today. Amber is the acting director of donation and transplantation at Canadian Blood Services, and will be available for questions.
It's also a privilege to appear together with some of our partners, not only Trillium Gift of Life and B.C. Transplant, but also later this week, I'm aware that you'll be hearing from another major partner, the Canadian National Transplant Research Program. I think this exemplifies the degree to which we see the collaborative nature of this exercise as being the only way to success on the way forward.
It's trite to say, and I know you are already aware of it, but for every patient in Canada who does receive an organ transplant, which is obviously life-saving, there are two more on the waiting list. Every year we know that people die while waiting, in fact, probably more than one every two days. At least 200 Canadians died while waiting for a suitable transplant opportunity last year.
There is a lot to do, but there's real cause for some reflection on progress to date. Canada's deceased donation rate, which is the organ donation numbers by deceased donors, last year was 21.8 donors per million population, which is a really marked improvement when you compare that with the last five and 10-year periods, but it is still less than a half the rate of some of the highest-performing countries around the world.
Our living donation rate, on the other hand, compares quite favourable internationally, but there we are seeing challenges, and we've seen declines year over year in the last few years when you look across the country.
In recognition of some of the deficits in the system, going way back now, some changes have been made by you and by your predecessors. In 2008, Canadian Blood Services was asked by federal, provincial, and territorial ministers of health to help strengthen the system across the country, particularly in helping jurisdictions support each other and increase access to transplant opportunities that may cross jurisdictional boundaries. An equity of access underpinning was very much at the forefront of the work when we got involved in it.
Of course, organ donation and transplantation are unique and highly specialized, interdependent areas of practice, and they're episodic and resource-intensive. The degree of clinical, provincial, interprovincial, and national co-operation that's required to facilitate the successes that I referred to are really quite significant. Certainly at CBS we're proud that we can be facilitatory and instrumental in supporting these activities.
The partnership that we enjoy with provincial and national stakeholders is informed by successful international models, and together with our provincial and clinical partners, we've developed a plan to improve system performance. That plan has been implemented, at least in part. We've been helped by federal, provincial, and territorial funders for support for different components of the plan, and it has underpinned those successes. As I've mentioned, we've shown a sustained improvement in deceased organ donation, which is a significant and important achievement for the country.
Leanne mentioned that we've also had significant successes in living donation in the coordination at the national level, through what we call the kidney paired donation program.
I think it is worth just reflecting that the partnership, which was launched in 2008, has created more than 575 transplant opportunities for patients with incompatible but living donors. When one thinks about it, that's an average of more than one transplant every week for each week in the last 10 years, which has been a result of this co-operative program. Those are transplants that would not have occurred without the program that connects the incompatible pairs from across the country to find suitable donor exchanges.
Of course, another milestone that I know many of you helped us celebrate last week was a milestone of national collaboration. It was the achievement of the 1,000th kidney transplant facilitated by the interprovincial organ-sharing work that we do.
We know that knowledge of performance drivers, leadership, and coordination at all levels of the system have been and will continue to be basic success ingredients for continued improvement of the national system, but of course you're here because you know that much remains to be done. Certainly when I reflected on what we might bring to you that would be helpful, I thought it was important to emphasize the inescapable and regrettable fact that it does matter where one lives in this country in terms of the probability of being able to be either a donor or a recipient.
There's no question that performance varies across jurisdictional and even institutional programming. That is something we can collectively put our minds to, I think. The role and scope of activities across jurisdictions with donation programs working with hospitals facilitating the donation process does vary. We see some programs responsible for deceased donation only. We see others include aspects of living donation, transplant services, etc. Some will include tissue donation. Others don't. Some have no deceased donation program at all. Others have no living donation program.
The challenges of this interjurisdictional inconsistency are many. It's important, of course, because we must remember that only a small percentage—and it's probably less than 2%—of deaths in Canada occur in a way that can actually lead to the individual becoming a donor. So the rarity of the potential donor is such that it really behooves us not to miss the opportunity, when we have the opportunity, to use that donation of an organ or set of organs.
I've mentioned the living donation programs that have also been added to the deceased donation programs in order to increase the frequency, and we've certainly seen that provinces that invest in the infrastructure for deceased donations and that also invest in increasing their living donation rates, see the returns in increased transplants for their patients.
I think one of the things we can collectively do is seek to make the opportunities available for those who want to donate, ensure the system can assess potential living donors as well as promote deceased donation, and allow them to donate in reasonable timelines.
We at CBS, with the partnerships, really understand that the degree to which donation and transplantation services are organized and operated in each province is something that we can ensure gets shared. It is foundational to assessing the impact on access to care and improving performance. Doing that from a national focus, I think, requires that jurisdiction-specific challenges be understood and addressed, and that jurisdictions and institutions and programs be supported to ensure that when donation opportunities arise they are not lost.
In future, then, I think what we would offer is that Canada's performance in donation and transplantation should be measured based on inputs, certainly, such as the ones I've mentioned—maximizing living and deceased donors—but also on outcomes.
We should be starting to turn our attention to facilitating the greatest number of transplants possible for patients who need them, but also to do this as quickly as possible and ensure the best possible clinical outcome from the best possible match to improve the quality of life for the long term.
Therefore, the underpinning research of our partners in CNTRP, the research part of the this partnership, is all the more important. The recipe for system improvement can continually be looked at and improved upon, but we know that when key ingredients are implemented, marked improvement happens.
Based on our experiences as a coordinating body for these donations and transplants in Canada, we would recommend that national priorities focus on strategies to advance interprovincial organ sharing, that we seek to advance living and deceased donations by assisting jurisdictions in their implementation challenges. Together, these elements will enhance system performance. There's a role in national system performance measurement. That measurement will help to drive increased performance and quality and promote an accountable system.
Opportunities for federal support I believe include facilitating referral of potential donors, education and awareness, and promoting optimal and consistent practices across jurisdictions.
Focusing on those measures to improve consistency will ensure all stakeholders are invested, and that donors and organs are not lost to avoidable factors, which results in harm or even death for a transplant candidate who then does not get the successful transplant. A national approach to leading practice development, to public and professional education, to system performance measurement and improvement, and to coordination of advanced interprovincial organ sharing, we think, would be cost-effective, is cost-effective, and will continue to deliver ever-better outcomes for Canadians.
I've probably gone over the 10 minutes. Sorry about that. I'll conclude by saying that in the last 10 years we have seen considerable progress in advancing the performance of the organ and tissue donation and transplantation system in Canada. The national collaborative work, which we've been privileged and proud to facilitate, has helped to increase those rates. It's helped therefore to save and improve lives, and it's led to avoided costs for the health-care system.
We are very encouraged. We know that Health Canada officials have embarked on collaborative efforts with provincial and territorial officials to identify and advance critical next steps, to further define roles and responsibilities, and to examine what additional opportunities applied nationally might have the most significant impact. We're grateful for that. We're grateful for your ongoing interest and support.
Together, we can save lives.
Trillium Gift of Life Network is the Ontario agency which, under provincial legislation, is responsible and accountable for planning, promoting, coordinating, and supporting organ and tissue donation and transplant, and for participating in that process 24-7.
Since our inception, close to 17,000 Ontarians have received life-saving organ transplants. On behalf of Trillium's board of directors, its management, its staff, our partners in the health care community, donor families, and recipients in Ontario, thank you for the opportunity to participate today.
The strategy to increase organ donation very simply put is twofold: first, inspiring and encouraging the public to consent to donation at end of life; and second, organizing and structuring the local health system to ensure all donation opportunities are identified and appropriately followed through. Both elements are key to maximizing access to organ donation, and the federal government does play a role and can further play an important role.
Based on Trillium's experience, I will bring you today three recommendations for the role of the federal government in improving access to organ donation.
Recommendation one is to develop and implement a national, sustained, multimedia public education campaign. Improving access to organ donation must start with increasing the number of organ donors. One of the most proven ways of increasing organ donors is through public awareness, which leads to consent to donate. Families of potential donors who are registered overwhelmingly honour their loved one's wishes, but in absence of registration, that consent rate falls dramatically.
Following the tragedy in Humboldt, and the revelation that one of the victims of that tragedy had registered for donation and went on to save six lives, registration for donation skyrocketed right across the country. When Canadians are reminded of the altruistic nature and the life-saving benefit of donation, they respond. They take action. But they were jolted into it.
The Spanish model is one to look at. Spain boasts the highest organ donation rate in the world. Their authorities, their physicians, will say that this is not attributable to presumed consent—it is not. It is attributable to the structure they have on the ground, and most importantly, to the constant presence of organ and tissue donation in their media. Through this persistent presence in the media, a culture in which organ and tissue donation is seen as being an integral and expected part of end-of-life care has been established. We too can do that.
Recommendation two is to increase opportunities for organ and tissue donation registration using federal channels. Include and promote opportunities for donor registration through Service Canada and all of the high-volume public transactions at the federal level: obtaining and renewing passports, voter registration, filing of tax returns. These channels can drive web-based links to the donor registration mechanisms that are already in place in each province. There is no need to collect or transmit any personal patient information. It avoids duplication. It avoids the creation of any new infrastructure that already exists in the provinces.
Increasing the number of opportunities and portals for Canadians to register in their home province will help increase donor registration, improve consent rates, and build a donation culture in Canada.
Recommendation three is based on the proven fact that teams of qualified and uniquely trained resources, working in fine-tuned harmony on the ground at the local level, are mandatory if Canada is going to increase organ donation. No matter what else is done, without these trained, committed, accountable patient-facing professionals, there will be no increase in the number of donors. These professionals are intensivists and critical care nurses in the hospital ICUs. They include donation physicians and donation coordinators, all accountable to a single designated entity.
This on-the-ground team cannot be put in place and sustained from afar. This is a provincial responsibility. However, we recommend that at the federal level there be a prioritized, nationally supported initiative that promulgates Canada's existing assets, it's best-in-class education programs, practical information resources, and collateral, right across the country.
Every province will have to make its own decision on creating and sustaining these on-the-ground teams, but for those who are prepared to do so, collateral is ready. We have centres of excellence in Canada. We have them in British Columbia, in Quebec, and in Ontario. A national prioritized initiative will facilitate the sharing of Canada's turnkey leading practices. The pace of promulgation and ready-made assets will be faster than creating new materials, or customizing into one set of collateral for all.
It is Trillium's experience that time matters. Canadians are dying on the wait-list every day. The more provinces that have teams waking up each day focused on nothing but organ donation, the faster we can promote these ready-to-use assets and the faster we will save lives.
In summary, we recommend a federal role supporting development and implementation of a hard-hitting, multimedia public education campaign; increased opportunities for organ and tissue donation registration through federal transaction channels; and we recommend that we help the provinces activate their provincially supported teams by making it expeditious and doing so through a nationally supported program that promulgates Canada's existing leading practices.
Thank you, Mr. Chair. After two and half years, you now know that my questions will indeed be in French.
First, I want to thank all of you for being here with us.
This is an extremely interesting topic. Whenever we do research, we learn a lot of things. As you have all mentioned, we can do better.
The research I did about the increase in the number of donors, and the questions I put to several other witnesses from Quebec, British Columbia and Ontario, allowed me to discover that a lot of work is done in isolation. Everyone does the best possible work, since we have considerable expertise, but my impression is that expertise is not always disseminated in an accessible and user-friendly way. In fact, several meetings are held to share information, but certain measures may not be taken, or perhaps there are things that remain to be done.
I'd like to understand a bit better and see if I am mistaken. How do you see things from your side? Have any actions been undertaken? What are your priorities to increase the number of donations and the success rate of these donations?
As we know, not everyone is a compatible donor. I am not going to name anyone, but someone told me that we had almost already reached the annual maximum number of potential donors, and this disturbed me a bit. I told myself that if that is the case, even if we reach the ideal number of donors, 200 to 225, there would still be 4,000 people on the waiting list.
How can we combine all that and reach a result that will allow us to save as many lives as possible? The primary purpose is indeed to save as many lives as possible through organ donations from living or deceased donors.
I've talked enough. I'm going to give Mr. Levy and the others a chance to answer.