Subcommittee on Neurological Disease Committee on Nov. 2nd, 2010

[The Chair, Conservative, Joy Smith]

Okay. Is there any other information that you can give the committee in that regard? Because drugs can break a family, but it's my understanding that there are supports at the provincial level in most provinces.

I would ask maybe at some point in time that we analyze the different provinces and see what they have. Can you find that out?

[Karin Phillips, Committee Researcher]

I actually wrote a publication for the Library of Parliament.

[The Chair, Conservative, Joy Smith]

And can you answer that?

[Karin Phillips]

Most provinces.... I think there's one in the Maritimes--I can't remember which one, offhand; it might be New Brunswick. Anyway, I can provide that for the committee if they want to know.

[The Chair, Conservative, Joy Smith]

If we could get that information, that would be lovely. Thank you.

Now we will go to Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

Thank you, Madam Chair.

Thank you for being with us again.

Certainly when I think of ALS I think of my good friend Derek Walton. I'd be remiss not to mention him. He's certainly sparked a lot of interest from the community I come from in Barrie, where he skydives every year to raise funds for Sunnybrook's research. I'm sure there are volunteers like Derek across the country. That's one of the special things about your association, to see how people facing adversity sacrifice so much for research and to move the yardstick forward, and hopefully our committee can be helpful in that as well.

There were a few things mentioned I took interest in. It was mentioned that you had some previous partnerships with a muscular dystrophy.... What type of work did you do with MD? I know the firefighters across Canada do a lot of research with MD, and I didn't realize there maybe were some overlapping areas. What commonalities are there?

[David Cameron]

This partnership began in 1999 and it was a tripartite relationship among Muscular Dystrophy Canada, ALS Canada, and CIHR central, at that point in time. Each of the three parties agreed to put in $550,000 a year. So there was $1.65 million available in what's called the neurological research partnership, or NRP, for short. It's still in place ten years later.

We use CIHR to do the peer review, and each of the three parties pays the money out directly to whichever researcher is successful. In the early days of the partnership there wasn't enough ALS research out there. There wasn't enough scientifically meritorious research in neurological diseases to spend all the money. That's changed. The NRP became the only game in town for the research community in neurological diseases in the early 2000s. We got to the point where, yes, we were not only spending the money, but there were quite a number of highly ranked research grants that couldn't be funded because we ran out of those dollars.

So probably somewhere between three and four three-to-five-year grants in neurological disease research are granted every year.

I don't know, François, whether you've had an NRP grant, but an awful lot of the ALS researchers in Canada have.

[Patrick Brown, Conservative, Barrie, ON]

Everyone asked the Alzheimer Society where Canada was in a global context. They mentioned that France and the U.K. were obviously doing some very interesting work. Is there anything we're not doing in Canada that we should be in terms of research? Are there any other countries that Canada should look to partnerships with? Are there any interesting research projects being done abroad that are promising? I know with Alzheimer's that Canada actually formed a research partnership with a few European countries to look at areas of commonalities. In terms of ALS, is there anything like that? Are there any countries that are putting a real focus on it that Canada could look towards?

[David Cameron]

One of the things that I find with the ALS research community internationally is a tremendous collaboration, a collaborative spirit. All of the senior researchers know one another; they all go to the same research conferences right around the world, and there is a sharing of information. We have had a number of collaborations between the ALS Society of Canada and our American counterpart. There have been some clinical trial collaborations between the clinical trials network here and the one in the United States. We have some collaborations with our U.K. counterpart as well.

To my knowledge, there is no work that's going on outside of Canada and North America that the ALS researchers in Canada are either not aware of or not involved in. What we find is that the ALS researchers tend to have an area of focus, and they will collaborate with their counterparts who have a similar focus in other countries, and share their information quite gladly.

[Patrick Brown, Conservative, Barrie, ON]

François, you mentioned that one of the things researchers do is they have these crazy ideas, wild ideas, and they like to chase every possibility, and that's exciting.

Can you tell us a little bit—I think it would be educational for us—about what types of research projects you are not able to do because of the more limited scope of research funding in Canada? I realize that if we're ever going to make breakthroughs, it really is looking for that needle in the haystack, and we're going to need a lot of different hands searching for that needle. What type of work are you doing? What type of work do you envision that we should be doing?

[François Gros-Louis]

Fundamental research on ALS all across Canada is really a cost-effective type of research. To transition to clinics, I think it costs a lot of money. What you find in fundamental research is that it is very expensive to be able to transpose it to clinics. There's a good initiative by ALS Canada, called the Canadian ALS Clinical Trials and Research Network, which tries to bring together all clinics across Canada, because to have access to a large pool of patients in only one province or only one ALS centre.... Canada is a huge country, so it's difficult to manage all the ALS research together. I think ALS Canada found a way to do it, but it's really costly. We need that type of thing.

[Patrick Brown, Conservative, Barrie, ON]

David.

[David Cameron]

You heard François say that trying to get a grant for a wild idea is not likely to happen. At this point, CIHR is granting about 19% to 20% of the applications, so you've got all that group of around 80% that are simply not being granted.

[Patrick Brown, Conservative, Barrie, ON]

Is that in the ALS field?

[David Cameron]

No, that's right across the board.

[Patrick Brown, Conservative, Barrie, ON]

In general.

And are the ratios similar in ALS?

[David Cameron]

Yes.

That's why we have expanded our program, to the point where we're investing over $2 million a year in research.

[Patrick Brown, Conservative, Barrie, ON]

Do you believe that most of those 80% that aren't currently being funded have merit, or are there some that just don't make sense?

[David Cameron]

The way the system works is that when the review is done they have to be above a certain level. So some of those 80% would fall below, but an awful lot are above the level, and there's simply no money up there.

We put together a program a couple of years ago that we called discovery grants. There's $100,000 for one year for that kind of wild idea that you would never get funded anywhere, particularly if you're a young researcher and you've got a new idea. It's that kind of thing that maybe we're going to hit on one of these. So we're investing about $200,000 a year looking for two of these wild ideas and maybe something will come to fruition.

[Patrick Brown, Conservative, Barrie, ON]

Just to put this in context, you're investing $200,000 a year, and what do you think the monetary value is of 80% of the grants that aren't being funded? How many opportunities are we leaving on the table? Do we have any idea?

[David Cameron]

It's hundreds of millions of dollars. A grant for three to five years is in the $600,000 to $700,000 range, maybe. So extrapolate that out over all of the fields.

One thing I just want to make clear on this subject of CIHR. Nigel was talking about $350 million. We're not asking for ALS, we're asking for CIHR to have the funding, because when the discovery happens, it will assist everybody.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Cameron.

We'll now go to Dr. Duncan. And we're going now into our second round, five minutes each for questions and answers. I've been a little lenient on the time because as I've listened to your testimony I thought we needed that. But that doesn't mean to say I'm going to do it this round.

Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

I'd like to draw to the attention of the committee that the European Brain Council is advocating that 2013 be declared the “year of the brain”. This would line up well with the national population health study of neurological conditions, ending March 2013. Canada will also be hosting the World Parkinson Congress in October 2013. We'll have 4,000 researchers coming. Maybe the committee could recommend that Canada also declare 2013 the “year of the brain”.

I will now pick up on ALS and veterans. This is something I've been doing a lot of thinking about. Perhaps, Mr. Cameron, I can ask you if it would be worth our identifying and contacting veterans with ALS--including those whose claims for ALS were previously denied--through either direct mailings or other outreach programs.

I think we absolutely need a national ALS registry, which I believe you're working on, because we have to identify veterans with the disease regardless of when they served. We need to track their health status. It's probably best to do this through an initial telephone interview, covering their health and military service, and perhaps twice-yearly interviews thereafter, and ensuring research regarding the different types of treatment in order to better support veterans with ALS.

I wonder if you could comment on that, please.

[The Chair, Conservative, Joy Smith]

Mr. Cameron.

[David Cameron]

First of all, let me say that it's my understanding that Veterans Affairs Canada has already taken the initiative to go out to all of those veterans who have been turned down. And actually, just a couple of days ago we received a comment from somebody in B.C. who wrote to the local ALS Society, saying, “Guess what I just got in the mail--a retroactive cheque”. They have no idea how it ultimately happened, but it doesn't matter. It's on the table.

It certainly makes good sense to be proactive in communicating to the veterans community that there has been a change in the policy from almost a universal denial—and then having to go through the appeal process when you have a lot on your plate—to the circumstance now where they're being looked at and being granted.

There is a lack of awareness. It's a big country. Not everybody is following that news. So in some fashion, getting the message out, we are doing what we can, and it's on our website.... The Veterans Affairs documentation will be on our website shortly. But anything that can be done through Veterans Affairs or any other government agency to get the message out there....

A registry, you're right. We are working on an ALS registry, and we expect it's going to start up in the new year. The infrastructure is now in place, subject of course to privacy rules. There is no reason at all that veterans with ALS shouldn't be part and parcel of that.