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

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Thank you very much.

According to the presentation, the cause of this disease is genetic in 7% of patients; some say that figure may be as high as 10%. Is the cause the same for the remaining 90%? Do we know what causes this illness? Are there different causes? I would like to get the discussion going with these questions.

[François Gros Louis]

It is true that up to 10% of patients have a genetic predisposition to the disease. The majority of patients have what is called sporadic ALS. We do not know what triggers ALS in these patients. Genes have been identified in what we call familial ALS, that is in cases where ALS is inherited. Some of these genes are also present in patients with sporadic ALS. Although rare, the same mutations are found in sporadic cases. The cause is unknown in most sporadic cases. According to my understanding of the illness, there is an interplay of the factors of genetic predisposition, aging and environmental aspects. The interplay of these three factors triggers the illness at a given point in the life of an individual.

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Do I have some time left, Madam Chair?

[The Chair, Conservative, Joy Smith]

Well, Monsieur Malo—

[Luc Malo, Bloc, Verchères—Les Patriotes, QC]

Just as I thought, Madam Chair, my time was up.

[The Chair, Conservative, Joy Smith]

It's still on, but it will be off shortly.

Thank you so much.

We'll now go to Ms. Hughes.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Thank you very much for being here.

I understand this illness is something that can be very stressful on the family, relatives, your friends. I'm just trying to get a little more information here.

My first question is for Mr. Gros-Louis. You mentioned, as did the other witnesses, that funding for research is very important. Could you tell us how much funding you require? Do you think that the current Conservative government has reduced funding? What effect has this had on you?

[François Gros Louis]

I am just at the beginning of my career and, therefore, it is difficult for me to talk about whether it was difficult to obtain research funding in the past. Over the years, there has been a reduction in research budgets, especially for the day-to-day operations of laboratories. However, there have been some greatly needed investments in infrastructure in order to modernize research laboratories. I believe it is time to reinvest in working capital. Operating grants are needed to improve the quality of the research conducted here.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

It is very difficult, at this time, to keep our scientists.

[François Gros Louis]

It is actually very difficult. For example, in Quebec—and this may be the case in the other provinces— young researchers are given a three-year contract. During that time, they must obtain research funds from CIHR or another granting body. If they do not, the contract is not renewed and they must look for employment in a non-academic area.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Are universities frustrated with this process?

[François Gros Louis]

It is difficult to speak for the universities. However, it is definitely very frustrating for the young scientists. The next three years will be a rather stressful period, but I hope to have the opportunity to—

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

You've mentioned the platform from the Liberals, and I certainly appreciate the fact that they've put this platform together. As I'm sure you know, the NDP certainly have been advocating.... Of course Tommy Douglas was the father of medicare, and his vision was to make sure Canadians would never need to dig into their pockets too much to be able to care for themselves. We have been advocating for decades now with respect to national home care and a national drug care program, so I'm wondering if you could comment on the fact that this has to be front and centre in order to ensure that people with neurological diseases such as ALS would be able to live their lives to the fullest and as comfortably as possible.

[Nigel Van Loan]

I certainly would agree, based on my earlier comments, that a national home care program would be highly desirable if it integrated all of the requirements so that someone suffering from this disease wasn't dealing with a multitude of agencies, which are difficult to identify in the first instance, and was able to have it presented as required and when required. So, yes, if that could be done on a national basis in this wonderful land of confederation and provinces, I'd be delighted to see it happen.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

I'm wondering if you could comment as well, because I'm not sure of the impact of the drugs on the national pharmacare or drug care program, how important that would be to the patients, knowing the fact that not everybody has a drug plan.

[David Cameron]

Perhaps I may comment first.

One of the additional unfortunate aspects of ALS is that there is little to no drug intervention therapy. There is one drug, Riluzole, that has efficacy with some patients. It needs to be used early in the diagnosis. It may delay symptoms for a brief period of time. Beyond that particular drug, there are no others. With ALS we encounter the dilemma that the pharmaceutical companies have of whether it's good business to be endeavouring to identify a molecule that will work for what is in the overall scheme of things something of an orphan disease. Consequently, there aren't many people who are going to take it. From a good corporate citizen point of view, it's the right thing to do. From a business perspective, they are challenged.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

The other question I have--and you may have the numbers for this--is with respect to orphan patients and how that impacts. I don't know if you've come across it. I know that in northern Ontario.... And I actually just became an orphan patient, so I'm wondering for someone who does not have a family physician what the impact is on those people who have neurological diseases such as ALS.

[David Cameron]

The challenge outside of the urban centres is very real. Actually, there are a couple of provinces now, supported by ALS Canada, who with the provincial society have identified mobile clinics. British Columbia is one, Alberta another, where they will get a team together, a neurologist, an OT and PT, they'll get in a van and go out into the hinterlands. They'll do that a couple of times a year. That addresses what you're describing in a small fashion, but not the big picture.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Cameron.

With your indulgence, would the committee mind if I asked a question at this point?

[Some hon. members]

Agreed.

[The Chair, Conservative, Joy Smith]

Thank you. The Chair doesn't usually ask questions, but I am curious about something.

Talking about drugs, I would assume the drugs are very expensive. I know some provinces have some sort of program. You know, we can talk about a national drug strategy. It's not quite that easy, because it's shared between federal and provincial governments.

I'll give you an example. My husband takes drugs that cost $1,200 per prescription, but the province has a program whereby you can apply. Nothing has been mentioned about that, and I was wondering if you've done an analysis of which provinces have this in place to assist ALS patients. Is it some provinces that have it, or is it all of them? I don't know that. Does anyone know that?

Mr. Van Loan.

[Nigel Van Loan]

To say I know it would be slightly erroneous, because my knowledge is out of date. At one time when I had checked across the board, so to speak, I think you're precisely correct, some provinces had assistance, some didn't. Ontario, for instance, did not. All through my wife's disease...$643 a month for Rilutek, and that was solely on my dime. It was not on the formulary.

Mind you, for the Ontario formulary, it only applies to seniors, so it wouldn't apply to Sari, for instance, even if it were there. It may be there now and I haven't checked, I'm sorry.

[The Chair, Conservative, Joy Smith]

Mr. Cameron.

[David Cameron]

Just as a follow-up to that, it's been my experience with the company that makes Rilutek that if there is a need, they will address it.