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Evidence of meeting #41 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Derek Walton  Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
Galit Kleiner-Fisman  Neurologist and Movement Disorders Specialist, Baycrest Hospital
Deanna Groetzinger  Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
Marie Vaillant  Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada
Garth M. Bray  Chair, Scientific Advisory Committee, Neurological Health Charities Canada
Ian McDowell  Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

10:35 a.m.

Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

Dr. Ian McDowell

I think as you work backwards from the very end stages of all of these diseases, there are so many similarities, more commonalities as people approach the end of their condition. As has been already said, as you move upstream the disabling effects are broadly similar, so we have to have comparable programs for supporting caregivers, no matter what the diagnosis.

As you then move back upstream toward the clinical type of research, of course the differences become very considerable. When you move even further back upstream within one condition, we suddenly discover the thing we had been calling Alzheimer's disease suddenly starts to get much more complicated and there are many sub-categories. When you start to look at the etiology, as Mr. Walton already commented with a couple of illustrations for ALS, there can be lots of different causes that lead to the very same disease process.

So the further upstream you go in trying to design a strategy ultimately to manage, prevent, treat, and so on, the more diverse the strategy has to be at the upstream end. We have to pay attention to the fertilizers that we do or don't put on our gardens that our children play in and may absorb, and so on. That is of course being done. It's all part of a brain strategy. But that only affects a tiny fraction of the eventual cases that may develop ALS, or Alzheimer's, or whichever disease. So we have to have multiple upstream strategies to protect health. It's very much like a public health type of approach. The more we learn, the more we understand, the more we can point the finger at these various hazards.

Of course there is a tremendous political balance, then, between protecting a tiny fraction of the people who are susceptible to those agents versus the convenience of being able to keep our lawns nice and green and so on and so forth. That's evidently in your domain. I think our domain as researchers is obviously to supply the information that would allow us to model—just to continue with the pesticide example—if we were to ban pesticides, this is the likely number of cases we might be able to prevent and suggest what would be the net cost-benefit of all that sort of a strategy.

It gets very fascinating. I think that ideally a brain strategy should have a clear model of how we think about this entire nationwide process of approaching neurological disorders, that in some ways they're very comparable and in some ways they're hugely different.

The last comment is that when you get right upstream, in fact the same etiological agents are hazards for multiple conditions. Pesticides may well be damaging for ALS; they're sure bad for your Alzheimer's; they're bad for your brain in general.

10:40 a.m.

NDP

The Vice-Chair NDP Libby Davies

You have just about 30 seconds left for a question and response, so make it short.

10:40 a.m.

NDP

Matthew Kellway NDP Beaches—East York, ON

Let me just take those 30 seconds to thank you all for coming, and particularly Marie and Derek for having the courage to bring your personal stories before us.

To you, Derek, I thought you were absolutely courageous to come and talk to us today, even before I found out you leapt from planes every summer, so I appreciate that very much.

Thank you.

10:40 a.m.

NDP

The Vice-Chair NDP Libby Davies

Thank you, Mr. Kellway.

We'll now move to Mr. Strahl.

10:40 a.m.

Conservative

Mark Strahl Conservative Chilliwack—Fraser Canyon, BC

Thank you very much to my colleagues for allowing me to pick up again.

I wanted to go back to the MS Society. Unlike some who expressed concern about the provinces taking a lead, having a different approach in their jurisdictions, I personally think that could be of great benefit to Canadians. I'm wondering if the MS Society is gathering the information that is being collected by the various approaches on CCSVI that the provinces are taking and whether that information is being shared between jurisdictions as it comes out. Or are we really in the preliminary stages and therefore there is nothing really to share yet?

10:40 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

I did mention that a Canadian MS monitoring system has been established. CIHI, the Canadian Institute for Health Information, has the lead on that, with funding from the Public Health Agency of Canada, and the MS Society is part of that monitoring system. Through that system there will be opportunity to pull in information from these other systems, the observational study in Alberta and the B.C. registry. There was actually a very small observational study as well in Newfoundland. So you're right: the provinces have taken different approaches.

The monitoring system is in early days, but I think it is the mechanism by which we'll be able to actually put this information in a usable way, as opposed to just people collecting lists of people. It has to be done appropriately, so you can actually pull data out of it once you put it in.

10:40 a.m.

Conservative

Mark Strahl Conservative Chilliwack—Fraser Canyon, BC

You mentioned that the minister announced phases one and two of clinical trials, and that the MS Society was involved with that. We talked about the funding. Is that the limit of your involvement? Do you only provide funds, or is there another role you're playing in these clinical trials?

10:40 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

At the moment, because we're still in a review period, we're waiting for a successful conclusion. After that, we will be in a position to help obtain the people who want to take part in these clinical trials. We have a big network of members from coast to coast, and we will be able to reach out to them and encourage their participation.

10:45 a.m.

Conservative

Mark Strahl Conservative Chilliwack—Fraser Canyon, BC

Dr. Kleiner-Fisman, the minister recently announced a pilot project on personalized medicine. I'm wondering what your thoughts are on that, given your whole-of-person approach to treating these sorts of neurological diseases. I'm also wondering whether there are any other centres like yours in other parts of Canada, or whether you are the flagship for the country.

10:45 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

On the personalized medicine question, I think it is absolutely critical. I can comment specifically on Parkinson's, and I think it's true of MS and other conditions, that everybody manifests symptoms and reacts to treatment in a different way.

I think the reason our clinic works so well is that we address every person as an individual and target needs according to individual priorities, not my priorities. I think this is really optimizing. There are no cures, but there are some treatments, and we are maximizing what we can do with the treatments that are currently available. It doesn't cost extra money; it's just using what we already know. Even though that sounds intuitive, you'd be amazed how rare it actually is.

Treatments of chronic neurological diseases can't be perceived like infectious diseases: you get an antibiotic, you take it for ten days, and then it's over and done. It's an ongoing entity and it affects every aspect of a person's life. In order to do what we can for people and use the resources that we have, we have to address what their needs really are.

Now, in relation to other clinics in the country—

10:45 a.m.

NDP

The Vice-Chair NDP Libby Davies

Dr. Kleiner-Fisman, could you wrap up, please? We're just about at the end of the meeting.

10:45 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

There aren't any other clinics in the country that are doing it in the way we're doing it. There are other places that are working on a much smaller level, but not with this comprehensive approach.

10:45 a.m.

NDP

The Vice-Chair NDP Libby Davies

Thank you.

We've just come to the end of our time for the committee. I'd like to thank all of the witnesses for coming. You gave us an enormous amount of information. Thank you for your commitment and time today. We'll be continuing this work.

I would like to let the committee members know that the clerk received some information from the Parkinson Society. She has a couple of packages of information, one in English and one in French. If anybody wants to look at this material, please contact the clerk.

The meeting is adjourned.