Health Committee on May 7th, 2018

[The Chair, Liberal, Bill Casey]

We'll call our meeting to order. Welcome, everybody, to meeting 104 of the Standing Committee on Health. Pursuant to Standing Order 108(2), we're going to study organ donation.

Mr. Webber has brought this to our attention several times. I think we agreed to do it quite a while ago. We're glad to get to it.

Today for witnesses, we have from B.C. Transplant by video conference, Leanne Appleton, provincial executive director; and Edward Ferre, provincial operations director. From Canadian Blood Services, we have Dr. Isra Levy, vice-president, medical affairs and innovation; and Amber Appleby, acting director, donation and transplantation. We also have Trillium Gift of Life Network, Ronnie Gavsie, president and chief executive officer.

Welcome, everyone.

We're going to ask each of you to make a 10-minute opening statement.

We'll start with our friends from B.C. Transplant.

[Leanne Appleton, Provincial Executive Director, BC Transplant]

Thank you very much for this opportunity.

My name is Leanne Appleton. I am the provincial executive director for B.C. Transplant, the organization with a provincial mandate for leadership and governance of organ donation and transplantation here in British Columbia. We are a part of the Provincial Health Services Authority.

Increasing organ donation is one of our key strategic goals, and we continue to build the infrastructure necessary to maximize organ donation potential from both a clinical and a public perspective. We've taken a multipronged and clinical systems approach to achieve this, based on what is globally recognized as best practice for increasing organ donation and aligned with national leading practices led by Canadian Blood Services.

B.C. started over two decades ago by establishing a strong foundation with two key elements. The first is mandatory referral legislation, which mandates all deaths or impending deaths in hospital to be referred to B.C. Transplant for consideration for organ or tissue donation. This type of legislation is viewed broadly as a key factor that contributes to higher donation rates.

The second element is the organ donor registry, now in its 20th year, which was the first in Canada, and the first to offer residents the ability to register completely online. It provides a legal record of a person's organ donation decision—yes or no—and is tied to a person's personal health number. It enables our organ donation team to share the decision with the family of a potential organ donor. This can help ease the burden of making a decision in a tragic moment.

With these foundational pieces in play, over the last few years we've focused on implementing other system components that are recognized nationally and internationally as fundamental and best practice for high donation performance.

My colleague Edward Ferre, B.C. Transplant's provincial operations director, will now speak to this.

[Edward Ferre, Provincial Operations Director, BC Transplant]

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.

[Leanne Appleton]

B.C.'s investment in the implementation of these deceased donation strategies has led to a 150% increase in referrals of potential donors from hospitals between 2013 and 2017. B.C.'s deceased donor rate has increased by 81% from 67 donors in 2013 to 121 donors in 2017. The year 2017 was a record in B.C. for the number of donors, a year in which a record 479 lives were saved through transplants.

Our province is now one of the leaders in Canada for deceased donation. I have to acknowledge that this success is the result of the collaborative efforts of an interdisciplinary team of health professionals. Advancing organ donation is only possible with the team effort, commitment, and skill of many highly trained professional physicians and specialists.

Before I conclude I want to note that, while our focus today has been on deceased donation, we also have a strong clinical infrastructure for living donation, which has made B.C. one of the leaders in Canada. Living-donor kidney transplants represent the greatest potential growth area for better access to transplant for patients on the kidney wait-list. The success of B.C.'s program is due in part to the development of a fast-track assessment process to screen potential donors, participation in the national kidney paired exchange program, and the highly sensitized patient registry managed by Canadian Blood Services.

There's always more progress to be made for both deceased and living donation. We are working to ensure we do not miss British Columbians who would have wished to be donors, by developing a comprehensive and robust medical record review process together with our partner hospitals providing audit and feedback. New technologies also present opportunity for improvement, including ex vivo lung perfusion, which we are exploring in B.C. We also have ongoing initiatives to increase living kidney donation, and particularly pre-emptive living kidney transplant.

Thank you very much for taking the time to listen to our input today.

[The Chair, Liberal, Bill Casey]

Thank you very much. You had six seconds left on your time.

[Leanne Appleton]

It's wonderful timing.

[The Chair, Liberal, Bill Casey]

You did well. Thank you.

Now we move to the Canadian Blood Services, with Dr. Levy for 10 minutes.

[Dr. Isra Levy, Vice-President, Medical Affairs and Innovation, Canadian Blood Services]

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.

[The Chair, Liberal, Bill Casey]

Thank you.

Now we go to Trillium Gift of Life Network.

[Ronnie Gavsie, President and Chief Executive Officer, Trillium Gift of Life Network]

Thank you.

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.

[The Chair, Liberal, Bill Casey]

Thank you very much.

That completes our opening statements. Now we'll go to our seven-minute round of questions, and we're going to start with Ms. Sidhu.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you, Mr. Chair.

Thank you to all our witnesses for being here today.

We heard that only 20% of Canadians sign up as donors, while many more support the idea of organ and tissue donation, but don't sign up. Trillium Gift of Life Network, you said the federal role is supportive. What role could a national public awareness strategy play in promoting organ and tissue donation in Canada? We have an organization in Brampton, Amar Karma, and you have your own organization, but what kind of federal role? You mentioned some, but what are some barriers at the federal level? What more can we do?

[Ronnie Gavsie]

Yes, 90% of Canadians say they believe in organ donation and only 20% have registered. Some of the reasons why this is the case are myths. Some people think they are too old, but age is not a factor. Maybe they believe their religions don't support it, which is untrue. Religions do, in fact, I think it's an obligation to save a life if you can. Some think that preceding illnesses would preclude them from donating, which is not the case. Every one of us would be tested for medical suitability. The biggest barrier is procrastination. They don't want to think about it today, and they procrastinate until they are jolted.

Yes, Ontario does a great deal to raise awareness with Amar Karma, as you said, as does B.C. and Quebec. All of the provinces, in fact, have provincial initiatives for public awareness. Still, there's only 20% registration. What none of us has provincially is the authority or the funding for multimedia, television, print, and radio ads with hard-hitting, sustained, persistent education. That is what Spain, for example, and other top jurisdictions have found works for them. We say that we could do this once, develop and implement once, using national media opportunities supported by the federal government: a hard-hitting, consistent, sustained public education campaign.

[Sonia Sidhu, Liberal, Brampton South, ON]

To Dr. Levy, do you have any idea what the federal role is and how we can do more?

[Amber Appleby, Acting Director, Donation and Transplantation, Canadian Blood Services]

Just to clarify, is that also in regard to the same question?

[Sonia Sidhu, Liberal, Brampton South, ON]

Yes.

[Amber Appleby]

I think Ronnie is correct in that we do really need to look at creating a culture of donation. Really, we don't want donation to be an afterthought. I think all of the opportunities that make it most convenient for people to have many interactions with that opportunity would definitely facilitate an increase in people registering their decisions. I think also, to the point around education and awareness, that we really do want to dispel certain myths. So as part of that campaign, we would want people to understand that it doesn't affect the care that they receive in an ICU or if they're admitted to an emergency department. Those are the types of things that we need the Canadian public to be aware of.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

My questions are to Dr. Levy. How do Canada's live and deceased donor rates compare with those in other countries? How do you sum up their approaches that are different from ours?

[Dr. Isra Levy]

We sort of run the in middle of the pack when you look at national comparatives that are similar to us. We've heard the example of Spain, which for deceased donation is about double our rate. However, we're doing reasonably well, certainly when you look at improvements over time on deceased donation. We compare reasonably favourably with the United Kingdom. We compare reasonably favourably with Australia. It does depend what the comparisons are. International comparisons are useful because they force self-reflection, but they have their limitations. We can look at best practices elsewhere and we can learn from them. But really, in comparing ourselves to the United Kingdom, the geographical dynamic is completely different, and the challenge with access to institutions depending on where you live is obviously different by definition. So there are limitations to what one can gather.

The same applies for living donation. There again, we compare reasonably favourably with some of the comparators. There might be less to learn from international comparisons, but I think actually the real value of those comparisons at this point is to set for ourselves some targets, to say we know it can be done better and ask of ourselves why we can't achieve the improvements.

I think we've heard the recipes themselves, so to speak, very clearly articulated by both British Columbia and Ontario, the kinds of things that are needed at the local level to achieve those kinds of rates.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

Is there any shortage of particular organs?

[Amber Appleby]

There are shortages of organs across the board in every single—

[Sonia Sidhu, Liberal, Brampton South, ON]

Are there any particular organs that we need?

[Amber Appleby]

I wouldn't say it's one more than another. Wait-lists per province differ substantially depending on the type of organ that's needed and also depending upon a number of other factors, including how highly sensitized a patient might be, for example. That's why we have looked at what the opportunities are—when we know we have such a scarce resource—to share that resource across Canada, to look for the best match.

When there's an opportunity and you have someone on the wait-list who's really hard to match, irrespective of the wait-list, they may actually wait longer if they don't have a larger pool from which to receive from a donor. That's why we're doing things like sharing organs across Canada, for example, because that expands the donor pool from which somebody can actually receive a transplant, and that does impact our wait-lists. An individual's wait time on the list will differ based on a number of factors. That's why it's difficult to say.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

[The Chair, Liberal, Bill Casey]

The time is up.

Now we go to Mr. Webber.