Health Committee on May 7th, 2018

[The Chair, Liberal, Bill Casey]

We go to Mr. Ayoub.

I suspect this question might be en français.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

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.

[Dr. Isra Levy]

Thank you very much.

I'm sorry, but I'm going to continue in English. Thank you.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

You can answer in English. I don't have lots of time, so—

[Dr. Isra Levy]

Yes, it would take time.

First, thank you very much. I do not believe that we're close to the maximum. I think there is a strong opportunity for improvement. I think the kinds of things that we've heard, particularly from our provincial program colleagues today, give us a very good focus on where some of those opportunities can be. Clearly, we can improve the registration rate. We can improve the clinical work that gets done in terms of best practices and in terms of coordination.

Our priorities at Canadian Blood Services will continue to be on exploring how some of the information technology work and infrastructure that we've built with the provincial and territorial infrastructure for organ sharing can be leveraged by machine learning as we partner with the clinical community and the provincial programs to improve on the cross-jurisdictional sharing. I think we have the elements in place, but we can't become complacent. We do need ongoing attention. The kind of study that's being done here, the kinds of ideas that have been put forward will make a difference, and we should keep that up.

I'll ask my colleague to comment further.

[Amber Appleby]

In terms of some of the very specific things we're doing to improve collaboration and help each other as a system, we have a group that meets regularly and that shares practices from one jurisdiction to another. We do that actively. Every year we get together and come up with our biggest national priorities that we want to work on together to improve performance, recognizing that some provinces may be focused on other things as well. Where they have incomplete adoption of DCD, that may be their primary focus right then, and that's okay. We always share freely.

One of the things that we're most focused on now in terms of a priority is really addressing what you just brought up, which is looking at what our donor potential really is. We need to ensure that we have mandatory death audits across Canada, in every single jurisdiction, that are as real-time as possible so that we can really understand what our potential is and whether we are missing opportunities.

We know that donors can be lost at any point along that clinical pathway, so we need to be auditing that pathway and making sure that where we're losing donors, we are fixing whatever system issues are preventing us from actualizing that donor. We have done a lot of work in that realm together, including donor identification and making sure we have consistent national clinical triggers so that people know when to refer a donor. We've been doing a lot of things like that in terms of leading practices, where we're sharing that knowledge across the country.

[Ramez Ayoub, Liberal, Thérèse-De Blainville, QC]

Thank you.

[The Chair, Liberal, Bill Casey]

Your time is up in English or French.

Ms. Gladu.

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

Thank you, Chair.

Thank you to the witnesses.

I want to follow up on my colleague's question because we ran out of time. His Bill C-316 will give everyone the opportunity to opt in on their income tax form as an organ donor. I'd like to hear from my friends in B.C. Do you think this is a good idea, and is there anything you would add as an improvement?

[Leanne Appleton]

We certainly welcome any time there's an opportunity to have another touchpoint for Canadians to consider organ donation and register their wishes, yes or no, so their families are aware of those wishes. Certainly we would want to ensure this specific bill is done in a very thoughtful manner so there's very explicit education to Canadians across the country that this is going to be a change. We would want anything to enhance this, so we would not want this to detract from how people feel about their tax return. We want to make sure this is done in a very methodical way, with lots of education, and certainly making sure it's an informed consent. Do they know when they're saying yes, and do they know if they're saying no, that it's an informed consent?

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

My friends at Canadian Blood Services, I have the same question.

[Dr. Isra Levy]

Just like our colleagues, we support a transactional touchpoint that will raise awareness, especially if it leads to the conversation. I think the comments my colleague from Ontario made with respect to being sensitive to the provincial systems this will feed into is an important nuance to things. But for sure this is to be welcomed.

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

That's great.

The other thing I want to talk about is the portability of people.

People are working across the country. Maybe they're originally from Newfoundland and they're working at Fort McMurray and they're moving out there. What kind of communication or sharing of information happens across the provinces? If they get into an accident while they're out there, would you know they're an organ donor? How does that work, especially with some of these provinces that, as you mentioned, are on a paper system?

[Amber Appleby]

There are a couple of questions there. One would be, what happens when you move to another province? The way it works right now, yes, you would have to re-register your intent to donate wherever you move to. To try to make that easier we've created a national microsite, where you can go to one spot. That will help direct people who don't know where to go in their own province or what the process is. We do have that in place.

The challenge would be if you pass away in a different province, and you have the opportunity to be a donor. Usually the next of kin would be approached to understand what your wishes would have been. I believe the next of kin could ask their provincial registry with regard to that information.

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

All right. You talked about how it's provincial jurisdiction for the registry of those who want to donate, as well as for the registry of those who need an organ. For the provinces that don't have anything in place, could the federal government be of help by promoting funds or something so they could get the kinds of databases that the very successful B.C. and Ontario examples have shown?

[Amber Appleby]

In terms of IT infrastructure, so that I'm being really clear, within each provincial jurisdiction, you're right, some do have IT systems for intent-to-donate registries. Those are strictly provincial systems that are intent-to-donate only. They're not the same as listing a patient for a transplant. The opportunities lie within each jurisdiction.

For example, some provinces don't have local listing and allocation IT systems. That could be put in place to support those activities provincially, and have that linked to the national system. We do have a national IT system for allocation of organs, and we also have a national system for wait-listing the urgent patients. Again, there is variability in what exists in every province, and there is probably an opportunity to look at what could be done there to assist those local systems that don't have that in place.

[Marilyn Gladu, Conservative, Sarnia—Lambton, ON]

Is there anything else the federal government should be doing to remove the barriers that exist to people becoming organ donors?

[Amber Appleby]

I think what's been said a couple of times is just in knowing and understanding the complexity of the system. Public education and awareness is really important, but equally if not more important is professional education and awareness. I think this is one of the learnings as well from Spain, and how they have professionals at every level within their health care system who truly know and understand the intricacies of what's required to facilitate donation. It's a focus on all those things because you have to have highly trained professional people at the ready to respond to the donation opportunity. I would think that would be another key area of focus.

[The Chair, Liberal, Bill Casey]

Your time's up.

Dr. Eyolfson, you have five minutes.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Thank you, Mr. Chair.

I'd like to thank Mr. Webber for bringing his bill forward and also for wanting to do this study. I agree it's quite worthwhile.

This is near and dear to my heart for different reasons. I practised emergency medicine for 20 years. Unfortunately, I had to have this conversation with families a number of times. I worked in a trauma centre. We saw lots of gunshot wounds and motor vehicle accidents, hence many potential donors. I agree that there are barriers we need to overcome to facilitate this.

I guess the best way to say this is, maybe, to change gears on this. One of the things we like to look at, as well, is prevention. We do know that you can take a burden off any system from both ends, from the supply but also the demand side.

I'll go through each group in turn. First of all, to our friends in B.C., can you pinpoint any diseases or processes that you would say really stand out as causes of people needing organs—for example, diabetes causing kidney failure, alcohol causing liver failure, or anything like that? Are there any disease processes that stand out that, if addressed better, would decrease the need for organs?

[Edward Ferre]

Yes, especially with renal failure. We have an aging population. All of the diseases, such as diabetes and hypertension, which are very prevalent in our society, contribute to this so that we're seeing increased numbers of people on the list.

On the donation and transplant end of things, we really encourage living donation. We're looking at a process now, which we call pre-emptive donation. If a patient is seen by a nephrologist and may be moving toward the trajectory of dialysis, we can intervene at that point in time, and they can find a living donor and get transplanted before they need to go onto dialysis, saving the health care dollars in that sense, but also there's a lot less wear and tear on the patient.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Thank you.

What about our friends from Canadian Blood Services?

[Dr. Isra Levy]

Thank you. In a former life I spent a lot of time thinking about prevention at the end of the spectrum that you're referring to. I'm grateful for the question.

The classical remediable, preventable causes of chronic disease come to mind right away. We know them to be alcohol, tobacco, and obesity issues. Do those drive donation need? I don't have the epidemiology to back that up, but I would say instinctively that, just as you said diabetes, clearly I think another one to think about is misuse of prescription and non-prescription medication. Certainly I'd be questioning whether acetaminophen is a part of the underpinning of some of the organ failures where we see the need. I think it's a very good way to go to think about some of the interventions that can switch off some of the demand side.

We tend not to do the epidemiological analyses of the registries through that angle, through primary remediable cause. Certainly, we know what causes chronic illness.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Ms. Gavsie, do you have anything to add to that?

[Ronnie Gavsie]

Two-thirds of the Ontario wait-list are people waiting for kidneys, and it has been that way for many years. If you were to ask us, based on our experience, where your support is needed, I would say it's prevention of diabetes.