Subcommittee on Neurological Disease Committee on Dec. 7th, 2010

[Deborah Benczkowski]

The Alzheimer Society is working quite closely with Canadian Institutes of Health Research, the Institute of Aging in particular, on the ICRSAD, which is the international collaborative research strategy for Alzheimer's disease. I think that's the one you're speaking about.

It is just in its fledgling days, and I know there have not been significant dollars put against it. But there have been wonderful collaborations set up with the countries you've spoken about. The Alzheimer Society of Canada has been supportive of this partnership and is working together with CIHR to promote it further.

Have we seen any evidence? I don't know if I can answer that question specifically. I think Dr. Beaudet, who was here earlier today, would probably be a better person to ask. I think you heard from Dr. Rémi Quirion last week, who was leading that particular collaboration.

With regard to the question that Dr. Diamond answered a few minutes ago, these large international collaborative studies where people are working together across the spectrum of research in many different countries are going to be the answer—they are going to find the cause and cure for Alzheimer's disease. I feel very strongly that we need to support those collaborations.

[Patrick Brown, Conservative, Barrie, ON]

Looking at commitments made by other countries, where does Canada stand in terms of investments--particularly into Alzheimer's--on a per capita level? Do you have any information on what other G-8 countries are doing in terms of investment in research?

[Deborah Benczkowski]

In terms of the other G-8 countries, Canada is behind the pack in terms of having any kind of a strategy to tackle the problems associated with Alzheimer's disease.

We know that the majority of G-8 countries, excluding the U.S. but including countries like South Korea, which has a very robust dementia strategy recently profiled in an amazing article in the The New York Times, if you had an opportunity to read that.... Canada is certainly lagging behind, both in our contribution to research and in the fact that we don't have a concerted government strategy to address the rising tide that's coming at us.

[Patrick Brown, Conservative, Barrie, ON]

I thought I read a statistic somewhere that if you looked at the per capita investments in Germany and the U.K. and France, they were something like $75 or $100 per citizen. In Canada it was more in the $20 to $25 range.

Do you have any information that could be passed on to the committee from the Alzheimer Society on those types of contrasts? I think that would be helpful to look at when we look at the types of investments we want to see in Canada.

[Deborah Benczkowski]

Alzheimer's Disease International, which is the international organizing body for associations and societies around the world, released a world Alzheimer report in September. I believe there is information in that report about that, and I could forward that on to you.

[Patrick Brown, Conservative, Barrie, ON]

Okay. Thank you.

I have a question for Shannon. I realize that your role with the neurological charities is a new initiative. I think it was a year or two ago that it was embarked upon. I have two questions. One, how is the study going in terms of the $15 million investment to have that study of the rates of neurological disorders in Canada? Are there any initial signs that we're seeing about the growing prevalence of neurological disorders in Canada?

Secondly, a few of the witnesses we've heard in previous weeks have talked about some of the fascinating overlaps that we see in neurological disorders, where investments in one disease have resulted in new information being found on a different neurological disorder. Can you maybe expand for the committee why we can learn so much about these different diseases by investments in any of them?

[Shannon MacDonald]

To answer your first question, the study is going well, but it's a large study and there are lots of people involved. We took the time at the onset of the study to engage the community of stakeholders to determine the priority areas of study, and 3,000 Canadians across the country contributed to that understanding. Then we brought together two workshops of scientists--about 60 scientists from across the country--to have the same conversation.

We knew when we framed this study a year ago that we were addressing the right issues. Fifteen million dollars is a lot of money, but it's not enough. So we wanted to be very careful and know that we were spending the money in the most effective way.

We have a study that's framed around understanding more about the prevalence and incidence, the actual state and prevalence, of these conditions in Canada; understanding the impact to individuals, families, and society as a whole; understanding health services and what's available and what's needed; better understanding risk factors for onset and also for progression, because there are secondary prevention issues that don't get dealt with very well either; and really understanding and be able to paint a very robust picture of neurological conditions in Canada so that it will inform our policy and decision-making.

The status of the study is that we have some surveys out in the field. Statistics Canada has survey projects under way as part of the study. We have nine research teams, which are large pan-Canadian teams across Canada that are now funded. Funds are flowing and contribution agreements are signed, I'm happy to report. Their work is getting under way.

We have a progress meeting scheduled for March 1 and 2 where all of those teams will come together and do what Dr. Beaudet was talking about this morning, which was the open sharing of information even though you're still in the middle of your project. The foundation of this study is that people will share throughout.

I don't have any findings to report to you, but one of the happy consequences of this study is that what we have seen from that very first meeting of scientists--which we actually convened before the study was announced--is a level of collaboration and collegial information sharing and knowledge exchange that has never existed within the neurosciences in Canada before, particularly among researchers who do clinical and population-based research. We experienced many situations where colleagues were actually down the hall from each other, but because one works on epilepsy and one works on MS, they had never actually met each other.

That has been a tremendous benefit of this study. We now have teams. We have expert advisory groups in each of those areas of the study that I mentioned, all working....

So the vast majority of Canadian researchers working in the neurosciences are in some way connected to this study, perhaps because they are contributing on one specific piece of information about the condition they work with or perhaps because they are a PI or a co-PI on a very large project.

I wish I had more to report to you in terms of findings, but certainly we are seeing very positive offshoots of the study, and we will look forward to March 1 and 2, when we have our first progress meeting.

[Patrick Brown, Conservative, Barrie, ON]

One thing that I've asked before around this—

[The Chair, Conservative, Joy Smith]

Sorry, Mr. Brown, your time is up.

We'll go to our second round of five-minute questions and answers.

Sorry about that, Mr. Brown. I just wanted to hear what you had to say at the end, so we went quite a bit over.

We'll start with Dr. Duncan for five minutes.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

I'm not sure who would like to answer this. Could you let the committee know whether a disease registry exists for Alzheimer's disease and related dementia here in Canada, as well as for other neurological conditions? What is the status and what is required?

[The Chair, Conservative, Joy Smith]

Who would like to take that on? Shannon?

[Shannon MacDonald]

I know a little bit about this because we do have a registry component in the national population health study. In Canada, generally, registries have not been pulled together in a coordinated strategic fashion. Generally, you have a particular clinician or investigator or small group that is particularly interested, so registries pop up regionally. The work is under way now, and some of the work of the study is to both develop an inventory of those registries and also fund some demonstrations around developing best practices for building and expanding neurological registries in Canada, and also demonstrating the expansion of a particular registry from a regional focus to a more national perspective.

There's actually a call out right now, which was just released, for that work in particular. But generally speaking, registries for neurological conditions tend to be built in isolation and generally around more rare conditions. Although Alzheimer's is rare in the neurological community, it is actually one of the most prevalent conditions. Registries tend to be built around more rare conditions, such as cerebral palsy, I would suggest, or some of the neuromuscular disorders.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

This committee passed a motion to make 2030 the year of the brain, and we hope this will go up to the health committee. Could you talk to why that would be...?

Sorry, it's 2013.

[Shannon MacDonald]

I will not be here in 2030.

[Voices]

Oh, oh!

[Kirsty Duncan, Liberal, Etobicoke North, ON]

I'm really tired. You know what I mean--2013.

Why would that be important in terms of galvanizing awareness, education, and research?

[Shannon MacDonald]

It's an exciting target because it gives us all something to move forward to collectively. It's important for the subcommittee to also know that the EU has funded a study very similar to the national population health study that's happening in Canada right now, and it's actually on the same timeline.

So in 2013 that study will also wrap up and the findings will be released. The EU is also moving toward declaring 2013 the year of the brain. That in and of itself is quite interesting in terms of collaboration. But there are also a number of exciting neurological events planned for Canada in 2013, in addition to the conclusion of the national population health study, which will involve quite a large-scale consensus development conference.

We also have the World Parkinson Congress coming to Canada for the very first time. It will be in Montreal in the fall. I actually put out a quick note to try to gather information from all of our members about what's happening, and there's a tremendous wealth of activity that will be happening in Canada. It's a wonderful opportunity to build on, on what's already happening and what's already planned.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Mr. Mann, I'd like to hear from you.

You talk about stigma and how to reduce it. I'd like to hear why this is so important.

[Jim Mann]

I shared the stage a year or two ago with a few people. There was a couple on the stage. One was a person with Alzheimer's and the other was his caregiver wife. They were relatively new to the city where they were living, having moved from back east, and didn't really have a lot of friends. They chose to tell people--friends and neighbours--in the city that he had suffered from TIAs, small strokes, rather than admit he had Alzheimer's. My jaw hit the stage. I was quite distressed. That to me is the stigma you talk about.

I say in my presentations that you address the stigma by addressing the stereotype. As long as the man on the street--I hate the phrase--thinks of Alzheimer's as being in the very elderly and in the final stages, society in general will not rally behind it, if you will. There's that sense of finality, whereas if you have a younger person out there saying, “I have the disease and there is life after diagnosis”, and that whole story, the stereotype changes. The feeling in society changes. The stigma is reduced, in my mind.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Mann.

We'll go to Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

There's one question I have asked before, and was just getting to before we had to change the order of the questioning: what's being left off the table when we look at research funding? I've asked this of all the different groups that have been before us.

One complaint we've heard in general is that we only really get to 20% of the excellent research, and there just isn't investment available for 80% of the research we'd like to do as a country. Is that something you find specifically in Alzheimer's research as well? We've certainly heard that with MS, Parkinson's, and ALS. Are there any examples of exciting research that we haven't been able to undertake in an interesting field related to Alzheimer's because there just wasn't available room within the CIHR, despite it being an excellent research project?

[Dr. Jack Diamond]

You're absolutely right that 20% is the usual figure we cite of the amount we can actually fund, and the 80% we want to fund goes unfunded.

Contributing to this, if I may interject this point, we talk about curing disease. If you cured Alzheimer's disease--if you had a magic potion and went to a patient and cured the disease--you wouldn't see any difference in the patient. What is lost is lost. You would stop the disease from going any further. You would stop the disease in the brain, but the dementia, lack of cognitive abilities, or ability to look after activities of daily life would remain where they were. So one whole area of research we're now realizing has really been neglected is how to reverse the process.

Now, this isn't a pipe dream. Alzheimer's happens because all the connections start to disappear in the brain. We know how to restore connections in the brain. It's a whole exciting new area of research. I'm not sure, but we may have one lab in Canada that's actually pursuing this. Yet it's necessary, if we're going to cure the patient as well as the disease, that we recover lost functions. There's hardly any track record of people in this area in Canada, because we haven't funded that kind of research. That's the sort of thing we're missing out on.

[Deborah Benczkowski]

If I could just comment, at the Alzheimer Society of Canada we fund two streams of research. Of our research, 50% of our funding goes toward biomedical, so that's cause and cure, but 50% of our research funds also go to quality of life research. So how do we help people who are living with the disease—and their caregivers? How do we help them to maintain their quality of life? It's on the social and psychological side of research, and that's extremely important.

We run a research competition every fall, and we just closed off our competition. We had almost 50% more applications for research funding than we had last year. I really believe that has to do with a lot of the recent visibility that we've had in terms of the disease, the Rising Tide report that has come forward, and a lot of the education and awareness that has gone on. But we have only 10% more funding to apply towards our program this year.

So as good news as it is, there are so many researchers out there who want to do research in this area. They have great ideas, most of them will be peer reviewed—and Jack is the one who leads that program for us—and they will be within the fundable range. But the problem is now we will just wind up disappointing more researchers because we don't have the funds to fund them.

[Patrick Brown, Conservative, Barrie, ON]

One stat I found especially alarming was when we asked how much time among researchers is spent on the actual application. One response I heard one week was 50%; another week I heard a person say 80% of the time was spent simply filling out applications. I found that alarming. Why would we want to have intellectual talent like that spending time in the red tape process, in the process of showing what they want to do, and not actually investing that in the lab?

Is that something you find in Alzheimer's research too? Is there a disproportionate amount of time spent on simply filling out applications?

[Dr. Jack Diamond]

I'll address this.

We took a chance here in the Alzheimer Society. CIHR, which is obviously the main funding body in the country, has a certain format and style of how you have to apply and how it's discussed and all the rest of it. Now, driven by necessity, when I was looking to get people on to our panels, most of the people I wanted were already on CIHR panels, so I had to make our process more attractive and make it easier for them to do.

We have actually--our society alone--hugely cut down some of this process. I would say we've cut it down to a quarter or a fifth of what CIHR, which is a traditional national body in most countries, demands, and we get away with it. There are no CIHR people here right now, but I feel like saying to them, why do you give your reviewers such a tough time—the reviewers I'm talking about now—and the applicants when it isn't necessary? I personally don't believe it's necessary, and our program runs efficiently and well without having this lengthy, tedious need that CIHR imposes.

We had three people successively who were on our panels from the States, and they all said how marvellous they thought our Alzheimer Society program was in this regard. So it can be done. We do it, but I think CIHR does not.