Health Committee on May 9th, 2018

[Dr. Lori West]

I would fully agree with what Dr. Kneteman has said. I think this is one piece of a complex puzzle, but each of these should be considered.

Some of the things he spoke about, such as donation specialists, even in countries that have presumed consent —Spain being the highest performing in the world—will tell you that presumed consent has been only one element of it. This has been well shown. Putting forward structural things such as national death audits, mandatory reporting, and donation specialists has really made the transformation possible in their countries.

Of course, in Canada it's a different jurisdiction, but we need to adapt to that for success in our own country.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

[The Chair, Liberal, Bill Casey]

Time is up.

Now we go to Ms. Sidhu for seven minutes.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you, Chair.

Thank you to all the witnesses for being here.

A few weeks ago I met Ms. Blackstock. Mr. Webber and I co-hosted a reception on organ and tissue donation by Canadian Blood Services.

Thank you for sharing your story.

Thank you, Mr. Webber, for that session.

My question is to you, Dr. West. What are the conditions in which someone passes away that enables them to qualify as a deceased donor, such as a cardiac death? When can a patient not donate their organ?

[Dr. Lori West]

I'm not sure I understand your question exactly.

[Sonia Sidhu, Liberal, Brampton South, ON]

What are the conditions in which someone passes away that enable them to qualify as a deceased donor?

[David Hartell]

In looking at deceased donation, we need to realize that this is an incredibly rare opportunity. The conditions under which someone can become a deceased donor are the result of probably only 1% of the deaths that happen per year in Canada. About 270,000 Canadians die per year and to be considered a potential deceased donor, you have to die in a hospital, in an ICU unit, while on a ventilator, and without any chronic complications that would prevent you from being a donor. We realize that it is an incredibly rare opportunity and that's why missing any potential donor, to us, is a public health concern or something that should never happen in a hospital, although we know it happens all the time. For example, Lori mentioned that we had just under 800 deceased donors in total in Canada last year and we think we are potentially missing thousands of donors every year that do not get identified.

Part of the problem is that there are no repercussions for the hospital if it misses a donor. There are no repercussions for the unit if it fails to identify a donor. In our work with Canadian Blood Services, we've been looking at the potential mechanisms we can put in place and trying to understand the system changes we can make to better identify these donors. If we could go from 800 donors to 2,000 donors a year, that would have a transformative impact on our ability to transplant patients.

Working together with Canadian Blood Services, we are able to look at different ways of understanding where the critical barriers are in identifying donors and how to never waste a potential opportunity. Let's start using all of the organs that are offered and presented. Dr. West was talking about these organ-in-a-box devices that allow us to actually take an organ that would have normally been thrown in the garbage and put it on the machine to repair it, do surgery on it, and manipulate it, in order to use it to save lives. We're looking for every opportunity to increase donation and we want to look at the system to see where there are challenges so that we can start identifying more donors.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

Dr. Norman, can you elaborate on the idea of mandatory referral for potential donors?

[Dr. Norman Kneteman]

In some Canadian provinces, we have moved to this system of mandatory referrals for potential donors. Whenever someone suffers from either a severe injury to the brain or a stroke or participates in some activity that basically results in the fact that they will almost certainly die or are already dead, then the law requires that the critical care doctors or the emergency department doctors who are looking after that individual must report that potential donor to the organ donation organization—Trillium in Ontario or BC Transplant in B.C.—so that they can be considered for donation. If the case is such that they can go forward, then they will have a discussion with the family. Unfortunately, that is not in place in all provinces in Canada.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

You also mentioned patient family research partnerships. How can we implement those?

[Dr. Norman Kneteman]

Sorry, can you clarify that question?

[Sonia Sidhu, Liberal, Brampton South, ON]

I'm referring to patient family research partnerships in rural and remote areas. How can we implement that research in more provinces? In Saskatchewan and Manitoba, it's very low.

[Dr. Norman Kneteman]

I didn't want to make the case by pointing fingers at individual provinces, but in reality, we have to recognize that among different provinces across the country, we have very different levels of commitment, funding, and development of the various aspects that we know are effective. Again, this needs a countrywide approach—a federal or national approach—so that we can understand which areas are not moving forward and all of the areas that can help, and so that we can provide them with whatever assistance is necessary to get them to overcome their challenges getting those systems in place. Realistically, right now it's not really anybody's job to look across the country and say, “Okay, this is not happening in these provinces. How do we actually get it to happen?” We need to make that somebody's job and we need to fund them to do it.

[David Hartell]

In terms of addressing the patient-researcher partnership, one of the things we have done, I think successfully in our network, is to look at ways to bring patients and families as co-researchers into our studies—not as participants, not as people we are studying, but as people who are helping us be team members, to help us design our studies, evaluate our studies, and set the research priorities. They participate in our peer review.

We have looked at patients and families as having experience. Lori talked about her experience of going through the donation process. We have a number of family members who have gone through the deceased donation process and are helping to inform our research studies, so that we are asking the right questions, engaging with families in the right way, and designing the research in a way that will have an impact and address concerns of patients and families.

[Sonia Sidhu, Liberal, Brampton South, ON]

Thank you.

I have another question, and anyone can answer.

When we talk about medical professional donor teams, is there any special training that we need to do that?

[Dr. Norman Kneteman]

Basically, there are a lot of skills that are important, and I think systems to develop that sort of training are in the process of being developed in the country. They are a long way from perfect, but we do have work going in that direction.

Some of the physicians who are involved in these areas have travelled to other countries to see how the systems work there. Usually, of course, they will pick a country where the system works very effectively, so many have gone to Spain or to the U.S., to particular OPOs in the U.S., where their results are very good to try to learn that.

It's one of those areas in which it is important to have some support for the people who become interested in it. We still have a ways to go to say we are ideal in that regard, as well.

[The Chair, Liberal, Bill Casey]

The time is up. Thanks very much.

Now we go to our five-minute round, and we start with Mr. Aboultaif.

[Ziad Aboultaif, Conservative, Edmonton Manning, AB]

Thank you very much.

Thanks, Chair. It is nice to see so many familiar faces.

Dr. Kneteman, first allow me to personally thank you and your medical team for all you have done for my family. For those who don't know, my son Tyler is a three-time liver recipient. One of them was donated by me, and the rest came from deceased donors. Dr. Kneteman led the surgical team in our case, and I would like to say I'm eternally grateful. Thank you.

In 2016, as you probably know, I introduced Bill C-223, which sought to create a national organ donor registry. Unfortunately, it was defeated by the government at second reading in the House of Commons due to unneeded partisanship. I must mention that the chair supported me on my bill, against the government's will. Thank you.

I'm pleased to see this committee finally deciding to study such an important topic that is close to my heart and mind through personal experience, and which led us as a family to finishing with our pain of almost 20 years. We can only be grateful to the medical teams and the families who donated. We still don't know who they are. They came forward and gave us two additional opportunities to the one that we started ourselves.

We know that about 260 Canadians died in 2016 due to unavailability of organs. We also know that about 4,492 Canadians were on the waiting list. The waiting list can go for four years. I hear some stories about waiting lists for kidneys that go for eight years, maybe ten years, which is ten years with no quality of life. We know how unproductive that is for the patient, the families, and the community in general.

It is safe to say that we need a more coordinated effort among the provinces, and a national awareness effort and program—I call it a registry—at some point.

For my question, I'd like to start with Dr. Kneteman, and all of you can elaborate or answer.

First, are you aware of how many organs from deceased donors we do not get the opportunity to benefit from? Based on that answer, do you feel that we need a national organ donor registry that would link all the provinces and basically, if you don't want to say “obligate”, at least put everyone under one responsibility to act and work together?

Dr. Kneteman, if you would like to start answering those questions, I'd be grateful. Thank you.

[Dr. Norman Kneteman]

The situation, I would say, is that when the family consents to donation, the donation and the transplant system will make every effort to utilize every organ that can possibly be used. There are many situations in which the organ in question may be damaged, either by disease in the recipient ahead of time or by events that happened around the time of death, and it's not felt to be suitable, so not every organ can be recovered from every donor, but we do certainly make an effort. If there's an organ that can't be placed, for example, because the HLA is not a match in the province of Alberta, we would then try to match that into British Columbia or any other province across the country. We do certainly make efforts, and if we can't place it in Canada we will in fact contact the U.S. to see if it can be placed there. We make every effort to minimize the loss.

By far a bigger problem is the up front.... In fact, there are too many cases in which the potential donor is not recognized, or if they are recognized, that fact is not brought forward to the organ procurement organization for a discussion with the family. I think that's the stage at which we lose many more opportunities for transplantation.

[Elizabeth Myles]

I would agree with that as well.

According to the report that was done in 2014, one in six potential donors results in an actual donor. Certainly, there's a discrepancy there and certainly a variety of reasons that can account for that.

As we mentioned before, a family veto can be a stumbling block along the way as well, and there can be variations in that depending on the province. It can be as high as almost 50% in the province of Manitoba.

[The Chair, Liberal, Bill Casey]

Your time is up.

[Ziad Aboultaif, Conservative, Edmonton Manning, AB]

May I allow...?

[The Chair, Liberal, Bill Casey]

Go ahead.

[David Hartell]

If we look at what we can do at the national level, considering the provincial and federal jurisdictions, I think we have the right elements already in place in this country. I think we just need to support and enhance these resources. Canadian Blood Services is the group that can set the national policy and can do the coordination across the country between the different provincial organizations to ensure that everyone is well supported and that we strengthen interprovincial allocation and sharing. It has the resources and the different programs in place. We just need to ensure that these are sustained and well supported and that we have an independent, national research organization that provides the innovation and the new technology to be able to strengthen our organ donation system and improve long-term outcomes for transplant recipients.

The challenge—and I think Dr. Kneteman and Dr. West brought this up as well—is that both of these systems are not sustainable and currently do not have a long-term strategy. I think this is a role that the federal government can play, and this is the leadership that can come from the federal system to ensure that the national research structure that we've created doesn't disappear and that Canadian Blood Services continues to be empowered to provide a leadership role and bring the provinces together.

[The Chair, Liberal, Bill Casey]

Thanks very much.

Now we go to Mr. Scarpaleggia.