Subcommittee on Neurological Disease Committee on June 8th, 2010

[Patrick Brown, Conservative, Barrie, ON]

You used the term “commercial reality”. Can you define that?

[Dr. Denise Figlewicz]

Yes. ALS is unfortunately not an attractive candidate to large pharmaceutical companies because the number of individuals with ALS is rather small. Technically speaking, by the international definition, ALS is considered to be a rare disease. So a biotech company looks for a compound that will be marketed to a large group of people, or to a group of people who will live and take the compound for 20 to 40 years. That makes a good market.

ALS is not a good market. We try to convince biotech companies that one benefit is the tremendous publicity they would get for any compound they came up with that was of benefit. That's something you can't buy. We all know the consequences to the biotech companies of negative publicity.

The fact of the matter is it's very hard to attract a biotech company to invest in the development of drugs for some of the neurological disorders.

[Patrick Brown, Conservative, Barrie, ON]

What can the government do to help get around that hurdle of the commercial reality? You'd hate to see hope in research stifled because of the bottom line that a multinational drug company may have. What role can government play to help with a rare disorder issue?

We actually had an interesting discussion about this last week, but I'd be interested to hear your take.

[Dr. Denise Figlewicz]

I can think of two things. One is what Alex was referring to, which exists in the U.S. for the sort of nurturing of compounds from the lab to clinical trials. I've heard someone speak on this. There are actual pathways where you sort of shepherd a compound through. The amount of money involved in that is a million dollars--it's up there. But the same amount of money...

[Dr. Alex Parker]

It's very effective.

[Dr. Denise Figlewicz]

It really is the shepherding of a promising compound straight through all the different steps needed to bring it to a clinical trial.

[Patrick Brown, Conservative, Barrie, ON]

You mentioned a million dollars to help shepherd it. Where does that come from?

[Dr. Denise Figlewicz]

I think it's approximately the amount of money they talk about for the entire process. That's going from a university laboratory up to a biotech company. You need to have a lot of pre-clinical trials, safety, and clearance in the United States with the FDA. It has its own agenda about things that need to be done before a compound can actually be given to a human as part of a clinical study. I could get accurate figures on this, if the committee would like, from the American model.

[Patrick Brown, Conservative, Barrie, ON]

Absolutely. That would be very interesting

[Dr. Denise Figlewicz]

On a second alternative, I heard somebody from England speak a couple of months ago. They have the same concern we have about the gap between what you find from research and moving it along to a treatment that's accessible to patients. What they may be doing in the U.K. is a different approach, where the government is sort of walking in as a matchmaker between the universities and the biotech companies.

I can't give you an answer on dollars for that, but I can give you an idea that the government is prepared to play the role of bringing together the researchers and the drug companies. But I really can't give you a dollar figure for what that involvement would cost.

[Patrick Brown, Conservative, Barrie, ON]

The other thing I just wanted to mention is that I understand there's some interesting research being done by Dr. Jean-Pierre Julien at Laval University and Dr. Chris McGibbon at the University of New Brunswick. If the ALS side is getting information about the work, I know I'd be fascinated and I'm sure the committee would be fascinated. If it could be submitted to the clerk, we'd greatly appreciate it, if you have that information as it develops.

[Dr. Denise Figlewicz]

I think you may be referring to the immunization study.

[Dr. Alex Parker]

Probably.

[Dr. Denise Figlewicz]

That's right. This is Dr. Jean-Pierre Julien's work. In fact, the idea for what he's doing is based on something that was tried for Alzheimer's disease, which was to try to immunize individuals against a protein or a fragment of a protein, which triggers an inflammatory response. Dr. Julien is doing this with the superoxide dismutase protein that's been implicated directly in familial ALS and probably indirectly in the rest of ALS cases. I know they are doing this in animal models right now.

[Dr. Alex Parker]

Yes, that's right.

[Dr. Denise Figlewicz]

I don't know when this is going to be ready to be moved to clinical trial, but they're going step by step, because the problem is that you worry about creating an anti-immune reaction against something that you start with to be helpful. What they're worried about is curing one thing and causing a secondary phenomenon that can be really deleterious to the nervous system.

Progress is good.

[The Chair, Conservative, Joy Smith]

Thank you so much.

Now we'll give Dr. Duncan the last question.

You have just a little under five minutes, Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

I'm going to pick up on Mr. Brown's comments.

If you could write your wish list to the government, what would you like to see regarding ALS research in terms of investment, the number of researchers we currently have, the number we need, and the distance people have to travel for treatment? Write your wish list.

[Dr. Denise Figlewicz]

Our ask in terms of research funding has been to follow the recommendations of the Kirby report and bring the CIHR funding level to be 1% of health spending in Canada. That's the financial wish.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Currently, how many treatment centres are there? I think you said 15 across the country. What is the average distance people are travelling?

I think Felicia mentioned it's not always what people need, and people are travelling to the United States or overseas. What more can we do?

[Melanie York]

I just want to throw something in.

I think within Canada there are many people who don't live within the treatment centre areas. If there's any way we can come up with mobile units with interdisciplinary teams that can travel, I think that would be a brilliant step in the right direction. You have to remember that people are isolated, they have limited funds, and whatever they have, they're using for themselves. If there's that sense of care and connectivity that you can have in mobile units going around, or volunteer doctors... I'm not sure, but there needs to be something to address outlying communities or people who live even 50 kilometres away. It's just too far and too hard for people to travel, so they don't get the care regularly that they need. They do not.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

The last question is this, again picking up from Mr. Brown. What are the potential therapies for ALS that are currently being investigated, and what, if any, new treatments are being given to ALS patients right now here in Canada?

[Dr. Denise Figlewicz]

I think the therapies are those we mentioned. I have to say that if you do not regard the geographic issue, which I'm not playing down—it's a very serious one—our clinicians are actually completely in tune with international groups. I don't think we would be concerned any more that there's something being tried elsewhere that could not be tried in Canada.

The problem is one of limitations of funding for the clinical centres, because if we could be running things in parallel, that would be a wonderful thing. Right now, financially, it's not possible.

I'm sorry, what was the second half?

[Kirsty Duncan, Liberal, Etobicoke North, ON]

What treatments are being offered to people right now?

[Melanie York]

The only approved drug is called Riluzole, or Rilutek. The efficacy for it is an extension of three months of life. Whether or not that is reality, I don't know. I'm taking it, but that is all that is currently offered to me.