Health Committee on May 9th, 2018

[Len Webber, Conservative, Calgary Confederation, AB]

Dr. West, can we not trump the family wishes, then? If it is a legal binding document that a person has signed which says, “I want to give my organs upon death”, why is the family trumping this? Cannot the doctors or the government say that they are sorry, but that they will be doing this?

[Dr. Lori West]

Across the country in every province, there's this split between the legal situation and the health delivery aspect of it. In every province, the way the systems are set up requires requesting and getting permission for this. There's a real disconnect here, and that can be worked on to really streamline that across the country and to overcome—

For example, the conversation could not be, “We're asking your consent”, but rather, “Your loved one”—as we heard here—“indicated that this was important to them and they went to this effort. We are here to help make that happen.”

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you.

I have a quick comment on retransplantation. I have a good friend who's had a double lung transplant. He's coming up to 10 years now. Hopefully he'll last another 10 years, but it's not very common. Is it correct that there is a lifespan for organ transplantation? What research are you doing to improve the longevity of transplanted organs?

[Dr. Lori West]

The longevity and the transplant outcomes vary a lot depending on which organ is transplanted, and that's a very complex equation. Lungs have probably the most difficult pathway.

There are increasing numbers of individuals whose transplanted organs are failing for reasons that we understand a bit about. We understand more and more every year because of the research that goes into understanding that. It's having an impact on how we can address those complex problems and on trying to decrease the need for retransplantation, which of course will then have an impact on the waiting list.

[Len Webber, Conservative, Calgary Confederation, AB]

Thank you.

Quickly, because I have only so much time, Dr. Kneteman, I have a question for you.

I am unable to give blood right now, because I recently had a trip to Africa. For a year I can't give blood. My daughter has had malaria, so she can never give blood again. There are many other instances of Canadians who cannot give blood because of certain situations or lifestyles. What happens now if I get in accident, God forbid. My family will, of course, allow organ donation. Will it happen?

[Dr. Norman Kneteman]

There's a major difference between a blood donation and an organ donation. The big difference is that in the situation of an organ donation, there is nowhere near enough supply to meet the demand, whereas with blood, we're much closer to being able to supply the need. You certainly hear about shortages of blood, and those are important, but they're usually intermittent and temporary and in one location.

We have come a long way in the last decade in understanding how significant the risks are from various different possible infections an individual may have. Even in the situation of an intravenous drug abuser who may have hepatitis C, we now understand what the risk is to the recipient. The medical team has the ability to come up with the decision and make a recommendation to that individual. The individual, of course, will make the final decision, but we know in that situation, for example, that we can transplant that patient and treat them with very effective anti-hepatitis C drugs afterwards.

In many of these situations we have much better information about the risk involved, so your family would be presented with that situation, as would the potential recipient, and they can make a decision to go forward.

[Len Webber, Conservative, Calgary Confederation, AB]

I see. Great. I need to go very quickly here.

From the map you have here showing our implementation of donation physicians in Canada, it doesn't look as though Alberta is doing a very good job here right now. I do want to ask about the hospitals in Alberta. Are all the hospitals in Alberta prepared for any situation that may arise in which there's an opportunity to harvest from an individual, or are we giving up significant opportunities to take advantage of this?

[Dr. Norman Kneteman]

I think if you look at that slide as well as at the other one that shows the rates of donation, you can see that Alberta trails well behind Ontario. There's no reason that it should. But one of the differences—in fact there are several—is the fact that we basically have only two professional donation physicians in the province in a situation where we understand we need many more.

The bill that came forward to develop an agency in Alberta basically has started but has not gone nearly far enough in many different areas to try to address questions just like that one.

[The Chair, Liberal, Bill Casey]

Okay, thank you very much.

Now we go to Mr. Davies.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you, Mr. Chair and witnesses.

Dr. Kneteman and Dr. West, my understanding is that current regulations concerning the exclusionary criteria for individuals who cannot be organ donors include men who have had sex with men in the preceding five years. What, if any, scientific evidence suggests that men in sexual relationships with other men should be excluded from becoming organ and tissue donors, and do you believe that this criteria for exclusion should be changed?

[Dr. Norman Kneteman]

I think it is an important discussion and I think it's important to understand what those criteria actually mean. The criteria basically are things that increase the risk. They don't necessarily prohibit donation. That is an important difference. As I said to Mr. Webber, those pieces of information will say that this individual is in a situation we recognize as having higher risk, and as I say, it could be even something as serious as intravenous drug abuse.

We still have the opportunity to go in—we can do it very effectively—and do what's called nucleic acid testing. This can tell us in fact within a period of several days whether someone has been exposed to hepatitis C or HIV or different agents like that. The donation physicians and the transplant physicians can discuss that information with the potential recipient, who basically has an opportunity to go forward.

Only, for example, if someone was actually tested and found to be HIV positive would it mean, in the vast majority of centres, that we would not go forward.

[Don Davies, NDP, Vancouver Kingsway, BC]

It's not an absolute prohibition.

[Dr. Norman Kneteman]

It's not an absolute prohibition. It's basically a reflection of increased risk that we have to understand, and we have to explain that to the potential recipient, because they of course need to be able to give informed consent to go forward with that transplant.

[Dr. Lori West]

Just to add to that, I remember those discussions when that legislation was enacted. Remember that when I speak to a parent of a child who needs a heart transplant, there's a 100% risk of dying. They're facing 100% risk that their child will die without a transplant. Really, as Dr. Kneteman says, this is about weighing risks and it can't be absolute. It has to be relative.

[Don Davies, NDP, Vancouver Kingsway, BC]

I just want to clarify, because we have information from the analysts and from the Library of Parliament. I'll read it to you:

In addition, to general organ and tissue donor exclusion criteria included in Safety of Human Cells, Tissues and Organs for Transplantation Regulations, Annex E to the general standard expands on the category of individuals at risk of infection with HIV and viral hepatitis to include men who have had sex with men (MSM) in the preceding five years.... Consequently, these individuals are required by the regulations to be excluded as organ and tissue donors.

Im just trying to clarify. This information suggests that they're excluded. Your testimony for this committee is that they're not excluded but rather it's discretionary. I'm just trying to clear that up.

Which is it? Are they excluded or can it happen depending on the discretion of the physician?

[Dr. Norman Kneteman]

My experience in practice is that it can and does happen with the understanding that this presents an increased risk that has to be discussed with the potential recipient.

[David Hartell, Executive Director, Canadian National Transplant Research Program]

We've done research, and we've published guidelines over the last couple of years explicitly stating that this is something that can be done and that we want to make sure that these donors are captured.

[Don Davies, NDP, Vancouver Kingsway, BC]

Thank you.

I want to get to funding.

Dr. West, my understanding is this isn't perfect but I understand there's funding that's received for research through the Canadian Institutes of Health—

[Dr. Lori West]

Research.

[Don Davies, NDP, Vancouver Kingsway, BC]

—Research—$14 million in general—but that there's some vulnerability to that funding. There's $3 million that has been allocated for the next three years, but I understand that federal funding for that research is not certain.

Can you elaborate on that and on what you need?

[Dr. Lori West]

Yes. The CIHR and the partners that I named provided, through a mechanism through CIHR, an initial $14 million for a five-year program. We're at the end of that now. That funding, which we leveraged into nearly $40 million through creative partnerships, is coming to an end now. That's what has been responsible for helping us achieve our success.

There was no mechanism for automatic renewal under that particular program. However, based on the success of the program and the many successful outcomes, they have put together a three-year period to sustain limited financial support for the infrastructure of the CNTRP research framework. It's only $3 million over the next three years.

Unless we have a new mechanism of support for this kind of a research framework, then we'll not have funding to go forward after that.

[Don Davies, NDP, Vancouver Kingsway, BC]

Okay.

I want to get your quick opinion on presumed consent. We heard some testimony at the last meeting about the desirability of moving to some form of “presumed consent” model.

Quickly, to each one of you, are you a fan of presumed consent? Should we consider such a system?

[Dr. Norman Kneteman]

Presumed consent has been in effect and has perhaps been very effective in a number of countries, especially in Europe. Many of those countries had histories such that they have a bit of a different past. North America has a legal system based much more on the individual's rights, and that has been a big part of the push to maintain the discussion with each individual. Now, I'm not saying that's the way it has to stay, but I think that's part of how we got to where we are.

In reality, as far as I'm concerned, if the majority of our population is in support of an idea like that, I would basically be perfectly happy to see us move forward.

There is the potential, obviously, to alienate or anger people on the other side of the fence, so that's been part of the concern about moving in that direction. You could actually take some people and because of the feeling of push—

[Don Davies, NDP, Vancouver Kingsway, BC]

Or backlash—

[Dr. Norman Kneteman]

—with presumed consent, you could have a backlash. That's the reason, I think, there hasn't been great enthusiasm to leap forward. But, in reality, the numbers in polls have steadily, over the years, improved in terms of the direction of presumed consent; and it's actually over 50% now in Canada.