Health Committee on March 1st, 2012

[Celina Rayonne-Chavannes, Director, Research Initiatives, Neurological Health Charities Canada]

With respect to the national population health study, there has been some progress made in terms of the work that's being done. The national study is a suite of 17 research projects—three surveys and 13 projects across the country, as well as one micro-simulation.

To speak to ALS specifically, we are starting to find some numbers with respect to incidence and prevalence. This study is actually looking at the epidemiology of neurological conditions, impacts as well as risk factors and health service utilization. In terms of the literature reviews that have been completed and the work that's starting to be done, which includes a lot of Canadian data, there are some numbers with respect to incidence and prevalence of ALS and other neurological conditions. But to say we have any specifics in terms of treatment and others, that's not within the confines of the study.

[Patrick Brown, Conservative, Barrie, ON]

I realize you have until 2013 to complete that study.

[Celina Rayonne-Chavannes]

Yes, we do.

[Patrick Brown, Conservative, Barrie, ON]

Do you get updates on research from your member associations, or is Neurological Health Charities primarily focused on this study, and fundraising and advocacy? Do you have any information you could share with the committee specifically on ALS research, or is that beyond your scope?

[Celina Rayonne-Chavannes]

That would be beyond my scope.

[Patrick Brown, Conservative, Barrie, ON]

In terms of Brain Canada, will you be doing any work with the Alzheimer Society? When I went to our annual walk and skate last month for Alzheimer's month, I was asked about this initiative. There was hope about the $100 million and the potential matching funds.

What type of work do you think we'll be doing in the area of Alzheimer's?

[Inez Jabalpurwala]

We have made an outreach to all organizations to say we would like to partner with them. Having that kind of partnership and input is something that we strongly feel will make a huge difference in the quality of the study.

Our approach is an open model. We can't predetermine how many projects we will receive in the Alzheimer's area. What we can say is that there is strong Alzheimer's research happening across Canada. We have every expectation that when we launch our first open competition there will be a number of quality applications. That will enable us to form partnerships with the Alzheimer Society around research programs, around joint projects that we can fund together, and also around ensuring that there is that dialogue, because having the input of the groups that work with patients, families, and caregivers is an ongoing challenge for us that will continue through the course of this fund.

[Patrick Brown, Conservative, Barrie, ON]

How will the brain research fund complement the work that's being done in other neurological research with the CIHR? Will there be a synergy between efforts?

[Inez Jabalpurwala]

Yes.

Do you want to cover the part about CIHR?

[Dr. David Kaplan]

I have funding from CIHR and I've also had funding from Brain Canada. I do work on Alzheimer's disease, and I've had major findings in the field. Our approach is quite different from CIHR's in that we don't target a particular disease. We have chosen not to target. If we're targeting, we want to target underlying causes of multiple neurological diseases.

For example, in ALS, nerve cells die, and in Alzheimer's, nerve cells die. So what we want to do is encourage teams to come forward with the best ideas to ask how we can keep all nerve cells from dying in multiple conditions. We believe that a drug or therapy that will then address one particular condition will address multiple conditions. This complements both what CIHR is doing and the individual NHCC members are doing in targeting conditions, because our goal really is to bring the research community together—the different disciplines and the different disease groups—to ask what the underlying problem really is and whether we can approach it. It's a complementary approach. Both are needed—CIHR's and NHCC individual member's, as well as ours.

[Patrick Brown, Conservative, Barrie, ON]

I realize there are always more research proposals that have merit than there are dollars to fund them, so I guess it's very important that you have that coordinated effort. The danger would be if you ever had any overlapping research. I'm sure that wouldn't be the case.

I know Canada is also doing some partnerships internationally on Alzheimer's research. With that partnership with the U.K., France, and I think, Germany, will the findings and the work that's being done with the international partnerships be coordinated as well with your efforts?

[Dr. David Kaplan]

Sure. We have another model that will fund Canadian teams to work with international teams, and the member countries will fund their scientists to work with our scientists. This is a model that we're developing and that we think will be very valuable—to not just have a made-in-Canada solution but a worldwide solution to these conditions.

Also, because the team members that we fund are really renowned researchers in their particular fields, we do have cost and input from what's happening in the different fields to make sure that what we're doing is something new, and not just the same projects that are being done internationally.

[Inez Jabalpurwala]

We talk about the CIHR, but we should also mention the National Research Council of Canada because it is quite focused on the commercial aspect of research discovery, and it's also looking internationally to find the countries where there's complementarity.

We're not just forming partnerships for the sake of being present in the international scene. We're saying there's real value, because there are some countries that possess the knowledge or expertise that we don't have and vice versa, and we can share.

In addition to that, for Brain Canada, our focus is not the commercial part. It's everything up to that point. So partnering with NRC, for example, would be a very positive synergy.

[Patrick Brown, Conservative, Barrie, ON]

Perfect.

With the neurological charities, I note that previously we had Shannon MacDonald before our subcommittee. Obviously, the contributions that you have made before this committee have been very helpful. I know when we did our study on neurological disorders with Kirsty Duncan and Judy Wasylycia-Leis, who was here before, Shannon was a tremendous help to us. I know that a lot of her work is being incorporated into our final report on neurological disorders.

Given that we have you here today, is there anything additional that you think we should be looking at when we finally do a final report in a few weeks from now?

[Vanessa Foran]

I think what we'd really like to see from the study—

[The Chair, Conservative, Joy Smith]

You just have a minute.

[Vanessa Foran]

Okay. We'd like to see, from the study and from the collective work of the NHCC, the members develop a national brain strategy. In May there's going to be a mental illness strategy launched. NHCC is already in contact with the Mental Health Commission of Canada.

[The Chair, Conservative, Joy Smith]

Thank you, Ms. Foran. I'm sorry. I know Dr. Duncan will probably pick up on that.

You're next, Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

How much time do I have, Madam Chair?

[The Chair, Conservative, Joy Smith]

You have seven minutes.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Okay, great.

Thank you all for coming. Thank you for the work you do each and every day. It's wonderful to hear all the presentations. I think we absolutely need a national brain strategy in this country.

Europe is calling for 2014 to be the year of the brain. I would love to see that happen in Canada. I think it's important to increase the public profile of the importance of optimizing brain health and reducing the burden of brain disease on individuals and their families. I think we have to seize the vital opportunity to maintain brain health, and decrease the stigma associated with neurological and psychiatric conditions through nationwide education.

I think we have to support those with brain disorders by enhancing the pace of scientific discovery, and by the availability of compassionate, coordinated, and effective care. We have to draw political attention to the human and economic costs of brain disease now and in the future.

We need to build these international collaborations in education and science to enhance brain health across the world. We have to leave a lasting legacy in Canada of increased awareness and better understanding of brain health and disease, and improved diagnoses and treatment.

I'm wondering if Ms. Foran and Ms. Jabalpurwala can both comment on whether we need a year of the brain in Canada.

[Vanessa Foran]

Yes, I think that we do need a year of the brain. We need it for awareness.

It's actually interesting that it's going to be 2014, because that is the year we will have all the information from the national population health study. Celina is working very hard on a knowledge transfer piece. That piece will be available in the year 2014 so that it's available for researchers and the public, as well as health charity organizations and government, and in a language that they can understand and can relate to. I think that the culmination of the international year of the brain with the KT piece of the population health study is a perfect fit.

[Inez Jabalpurwala]

As you know, the U.S. had declared the 1990s the decade of the brain. What followed was an explosion of research, which is why 90% of what we know about the brain was discovered in the last 15 to 20 years.

I would overwhelmingly support declaring 2014 the year of the brain. I think that there is a value in raising attention and profile. I think the timing is right. There is a lot of interest about the brain and brain disease now. There is so much more understanding about the impact. This would be a perfect opportunity to see a convergence of all of that, so I would absolutely support that.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

I appreciate that. I'll ask you both, and Dr. Kaplan as well. Should we make a recommendation in the report to be done here that year 2014 should be the year of the brain? I'll ask each of you to respond to that.

[Dr. David Kaplan]

I would absolutely agree. I think it's necessary. You've made a very astute observation and comment. There are a thousand neurological and psychiatric conditions, but there's one healthy brain. You mentioned the healthy brain a lot. What we have to be concerned about, and I think what we can appeal to the public for, is to find out ways to keep the brain healthy. That's as important as treating neurological and psychiatric conditions, but the public will understand that. I think that the observation and statement you made is right on.