Health Committee on May 7th, 2018

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you, Mr. Chair.

I want to begin by just giving my heartfelt thanks to the committee for allowing this study to happen. It really means a lot to me, through personal experience. I just thank you sincerely for allowing this study to happen. I can't say any more than that. It really means a lot.

I would also like to thank our witnesses for being here today and for the wonderful work you do. I can't thank you enough either.

One reason we're having this study is that we need to know what we can do as a federal government to improve the system here in Canada. Of course, your presentations today gave us some very good recommendations. Thank you for those.

I have a lot of opportunity to ask questions, so I'm going to start with Ronnie Gavsie who made some comments here. One of her comments was on Spain and how well they're doing there. Even though there is presumed consent there—the opt-out type of system—you gave credit, and they gave credit, mostly to media and public education.

With respect to Canada, our public education, and what the federal government is doing to participate in a national awareness campaign, is there anything right now that is occurring from the feds other than, of course, from Canadian Blood Services? Is there a significant amount of money being put into education and media education? Maybe you could just talk a bit about that, and of course, I'd like to hear from Canadian Blood Services as well.

[Ronnie Gavsie]

Thank you. I will ask my colleagues at Canadian Blood Services to address part of that question.

In Ontario we do invest, as other provinces do, in promoting stories, statistics, successes, and challenges, to the media, but we are unable to utilize regular, ongoing television opportunities, radio spots, regular series, as such, or full-page ads that would catch people's attention.

A few years ago, we sent a group of physicians and Trillium staff to Spain. They described how, when they arrived at the airport, there was a huge sign, right there at the airport, in their faces, promoting organ donation. Every day that they were there, they'd look in the newsstands, and lo and behold, there would be something on organ donation. It was a tremendous source of pride to people in Spain—apparently along with their soccer team—that they were the best. They were known to be the best in organ donation. That pride translates into consent.

[Len Webber, Conservative, Calgary Confederation, AB]

Do you, personally, believe in an opt-out system, Ronnie?

[Ronnie Gavsie]

I believe that if the infrastructure on the ground were in place, if we were all very sophisticated on the ground with our teams, at that point, there may be some added advantage to presumed consent. Until that time, it is not a silver bullet.

[Len Webber, Conservative, Calgary Confederation, AB]

I have a quick question to Canadian Blood Services, Dr. Levy and Ms. Appleby. I've often seen many advertisements throughout travels in Canada, both on billboards and on TV, regarding blood donation. Is there anything being done with regard to media and organ donation?

[Dr. Isra Levy]

Thank you. I'll start. To be specific, Health Canada helps our work at Canadian Blood Services to the tune of $3.58 million a year. It's not insignificant at all. It's a tremendous support to us. That resource supports a number of different activities. A lot of the work that we do with that money is leading practice development, that is, clinical best-practice guideline development, which is an underpinning of the interprovincial work, and it helps clinicians at the bedside.

We also use that work for data collection and national performance reporting, which as I've explained does help move things along. It depends on whether you're looking at the glass half...one way or the other, as to whether what's left is a lot of money or not. We're grateful for what we are able to spend on national clinician, health professional, and public education. Could we do more if there was more? For sure, we could.

Within Canadian Blood Services, do we do enough cross-promotion of our donation opportunities and requests of Canadians? That's something for us to reflect on, and we do on an ongoing basis. We could probably improve those opportunities ourselves, and if there were further resourcing for more opportunity, we would make use of it.

[Len Webber, Conservative, Calgary Confederation, AB]

You would.

[Dr. Isra Levy]

Absolutely.

[Len Webber, Conservative, Calgary Confederation, AB]

A question for our friends in B.C., and also Ms. Gavsie, with regard to a recent media report in Ontario that suggested that about 20%, or one in five, of registered organ donors are having their final wish overturned by their family members at the time of death. Is this accurate in Ontario? I'd like to know what the statistics are in B.C. as well.

[Ronnie Gavsie]

Shall I start? It's not 20%, but it is between 10% and 15%. It occurs typically in situations of donation after cardiac death. This is a situation where an individual is on life support and the medical team and the family together make a decision to withdraw the life support. Where the family is gathered around their loved one's bedside and the decision is made to withdraw life support, in many cases they will say, “We want to do it now. We are all here. We've been through a lot together. We want to say our good-byes and we want to do it now.” When that happens, which is not uncommon in donation after cardiac death, it will happen right away. This does not give us the opportunity to put the process in place for donation.

[Len Webber, Conservative, Calgary Confederation, AB]

In B.C., as well, please, I'd like to know what is happening there with respect to the families saying no.

[Leanne Appleton]

This is very rare in B.C., so we don't know where that figure came from. As Ronnie was just saying, it usually has to do with something related to the family feeling very overwhelmed in a very tragic situation and wanting something to happen very quickly, and we're not able to mobilize.

I'd like to clarify as well that if someone did not register their decision, we do ask the family. Likewise, if someone registered and said no, we do ask the family if there were any recent conversations in which the loved one would have had a different decision. We do ask that of the family. We respect their wishes, but we do ask that follow-up question.

[Edward Ferre]

The registry that we have is both a consent registry and a dissent registry, so we have that obligation to speak with the families to ensure that we're capturing the loved one's decision.

[The Chair, Liberal, Bill Casey]

Okay, thanks very much.

Mr. Davies.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you, Mr. Chair.

Thanks to the witnesses for being here.

Ms. Appleton, I'm from Vancouver, so I'm going to direct my first few questions to B.C. Transplant, if I may.

A new program encouraging customers of the Insurance Corporation of British Columbia to register as organ donors has boosted the donor list by more than 15% in a single year. ICBC reports more than 125,000 customers have registered with B.C. Transplant as potential donors since driver licensing employees began asking customers last year to make their wishes known.

Could you elaborate on the success of that program?

[Leanne Appleton]

Yes, we'd be happy to, and thank you for raising it.

This is creating another touchpoint for British Columbians. As they come in to register, get their driver's licence renewed, those customer representatives have been educated through a fulsome program by B.C. Transplant and our community outreach professionals, and they take pride in having those conversations with British Columbians. It is creating another opportunity in a proactive way to have those conversations. Sometimes individuals need more information, and we dispel myths right at the counter. Other times they want to go away and think about it, and they can register online, but we find a lot of British Columbians take action when they come in at that time. We have had tremendous success with this partnership.

[Edward Ferre]

When you look at our registration program, in a five-year cycle you'll have touched every person in the province who is renewing their driver's licence, so it's a very good mechanism to touch as many in the population as we can.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

I also know B.C. Transplant has made a concerted effort in recent years to reach out to certain ethnic communities, including having its volunteers attend various community festivals and translating your outreach materials into Punjabi and Chinese. Can you update the committee on the effectiveness of those outreach efforts?

[Edward Ferre]

We have quite a significant immigrant population in British Columbia, and not only are those individuals eligible to donate, but a number of them are on the wait-list. We work with the individuals, with the volunteers in those groups, in those ethnic groups, to help educate their groups in any way we can, through meetings of their social groups or their religious affiliations, and we're finding that more and more individuals who immigrate to B.C. are registering on our donor registry. That is the one thing that we drive them to, to be able to acknowledge that this is something they would like to do.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

I have one final question for you.

Mr. Levy commented on the issues of regional discrepancies in organ donation. In 2014 at the Vancouver Sun's request, B.C. Transplant provided data on the number of people on its registry in every postal code of the province. TheSun then compared that against population figures from the recent census and the data showed overall about one in five B.C. residents were on the registry but that rates varied greatly depending on where people lived.

In your view, what explains that variation, and what steps, if any, has B.C. Transplant taken to close the regional registration gap?

[Edward Ferre]

One of the things that is increasing the number of registrations, that is equalizing it more, is where the Service B.C. locations are found. A lot of them are in the rural areas. When you look at a sparsely populated area, you'll find that they probably have very high rates of donation because there is a smaller population and all those people can somehow be brought in to register at these Service B.C. stations.

In Vancouver, in the urban centres, it's a little more complex. A lot of them have to do with the ethnic populations, and what we're following and what we've found is within the ICBC drivers, that is increasing those registrations where typically we saw low numbers.

[Don Davies, NDP, Vancouver Kingsway, BC]

Ms. Gavsie, my information, if I'm not mistaken, is that at least 24 European countries have adopted some form of a presumed consent system for organ donation, and you have mentioned the prominent systems in Spain—I think they are also in Austria and Belgium—that yield very high donor rates.

You also mentioned that the number one enemy to organ donation registration was procrastination. Would it not work in reverse? If everybody was presumed to donate, would that then not bring the same level of procrastination to opt out, that they would in reverse.... Wouldn't a presumed consent system be a very strong way that we could get more people registered and count on that age-old human condition of procrastination to carry the day?

[Ronnie Gavsie]

Certainly, intuitively it would seem to us that it's a silver bullet. However, when we research the matter and go to the other jurisdictions, we find out that it's not, because the family is still—in all of those countries—required to consent, and because of presumed consent they would never have had the discussion. There's no trigger or reason for a family to have ever discussed it, so the families will say they don't know that their relative really read the small print and understood that he was defaulting to yes and they don't think he would have wanted it.

We recently had visitors from Singapore who've had presumed consent for a decade, and they came to find out how to increase their donor rate. France—you would have read about this a few months ago in the paper—sounded as though they were putting in presumed consent. They have in fact had presumed consent since 1976. What they are doing is putting in a requirement for the family, if they will not consent, to bring a signed paper from the person who passed away saying that he or she did not agree to be a donor.

Although intuitively it sounds as though it would be the answer, empirically it has not proven to be.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

[The Chair, Liberal, Bill Casey]

Mr. Oliver.