Evidence of meeting #12 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parkinson's.
A recording is available from Parliament.
Conservative
Patrick Brown Conservative Barrie, ON
As someone living with Parkinson's, what guidance can you give our committee? What other things can you think of that you believe are missing or needed in terms of what government can provide that hasn't already been mentioned today?
As an Individual
What's missing or needed? I think I would go back to this drug plan. I look at the cost of some of the medications; thankfully I have my own coverage, but I do know people who don't have coverage. They're not getting the medications and they're living a very hard life.
I think that's one of the big aspects, the medication end of it. We need that. That's critical for us.
Conservative
Patrick Brown Conservative Barrie, ON
Yes.
Joyce, with regard to that $15 million for the neurological charities, is there anything you're learning now from this neurological study that has been embarked upon? Is there anything you could suggest to us as we look at a national strategy on the brain? What types of things do you think we've learned in the last year or year and a half that we should start examining now?
President and Chief Executive Officer, Parkinson Society Canada
Most of the research projects have just started. The first year was really getting together with regard to RFPs and selecting projects and going through the whole process of granting opportunities for people to explore key areas within the study. It's very early to talk about any results or where they are, because they just started in the last month or so.
However, the benefit of this is that we have the cross-disciplinary work of individuals working with all the neurological conditions. It is an opportunity for this group to learn from each other but also to bring forward those common areas we identified in the study, from caregiver support through public awareness and education through the genetic fairness issue, research, prevention, and integrated care and support. Those are the key focus areas of these projects, and we have built the study around them.
As we go, we will be informed, and we will have check-in milestone points where we can share the learning. Also, as we finish this report, we can have recommendations that can help us provide far better integrated services across Canada, and hopefully we can have recommendations for the Government of Canada.
Scientist, Neuroscience, Ottawa Hospital Research Institute
Mr. Brown, perhaps I may add something to Joyce's comments.
One of the really exciting things that's going on right now that Parkinson Society Canada is starting to fund as well is that within pharmaceutical industries, we know that a Tylenol not only treats headache but can also bring down fever. We know that Aspirin not only can prevent heart disease but also can cure our aching bones. That effort of using one drug for multiple purposes is called drug repositioning.
One of the exciting things that began in the ALS and Huntington's disease arena is to come up with strategies of how can we reposition drugs that are already approved by Health Canada and the FDA and European commissions to apply them to Parkinson's disease. That's something that is going on worldwide now and is pursued by a number of foundations.
Just four days ago, in San Diego, I was approached by the head of neuroscience research from Pfizer, who asked me to help them confirm what drugs they have that could work in Parkinson's disease models.
So this whole notion of drug repositioning could cut down ten years of development of a new drug and could cut the cost from $750 million down to $5 million or less to actually bring a drug to market. Drug repositioning is part of a portfolio of many foundations and national institutions, and that's something that I think Canada could contribute to as well.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Thank you very much, Madam Chair.
I have one last question, which follows from my previous ones. I was wondering about something in relation to genetic discrimination. I assume that work has been done in other countries.
Can we draw some conclusions or examples from what's being done abroad?
This is my last question, and you may use whatever time is left to answer it.
Scientist, Neuroscience, Ottawa Hospital Research Institute
If I understood your question correctly, you're asking what lessons we can learn from other countries. To me, when I think about this big problem of Parkinson's disease, Alzheimer's disease, dementia, and immobility in western societies, one of the most wonderful things from an international perspective that I experienced here, being newly arrived in Canada, was the amazing amount of talent, creativity, and willingness to work hard to change the plight of people with illnesses.
One thing that really struck me, in some European countries, such as Finland, where I lived for a few months, is the identity of a nation to embrace a difficult challenge and make change happen. In Finland in the late 1980s, the country lived essentially off fishing and forestry. Then the notion was embraced to start platforms for technological advance, children's education in terms of electronics, and all of a sudden the country developed this amazing knowledge-based industry. Every single Finn is as proud as he can be that he--or she--contributes to changing the economy and the future of the country. Finland now ranks number one in the PISA study of Europe in terms of level of education and knowledge. What I was struck by was how a country can embrace a challenge and bring change and make it happen.
When I came to Canada, I think equally inspirational was what Mr. Terry Fox did in his fight to bring more research dollars to fight cancer and understand cancer better.
Then we have a young woman here in the city of Ottawa who has young-onset Parkinson's disease. She goes from school to school--her name is Shelby Hayter--and she won the national hero award and was recognized by the Prime Minister as well. When I see how she can mobilize young children who are in second, third, fourth, or fifth grade with the message that we have to do something about Parkinson's disease, I feel all of a sudden that there's this opportunity for us as a country to embrace the challenge of Alzheimer's disease and Parkinson's and other disorders as a national fight. We can change that. We can advance Canadian interests, both because of our patients who live here and our economy that stands to benefit from breakthrough findings from the investment that we want to make, and we can set an example for the world of what Canada can do. I know we can do it, because we have the resources, the talent, the endurance, the willingness to collaborate.
The number one thing I'd love to see translated is the spirit of a Mr. Fox--Terry Fox, Michael Fox--and the idea that a whole nation embraces a fight. I commend Mr. Daniel Alfredsson, who takes the flame of psychiatric and mental health. Yesterday the daughter of one of his coaches committed suicide, and they're all coming back to show that mental health needs to be addressed and changed.
Likewise, I know that if we were to embrace as a nation, with federal and provincial support, we can show that Canada can make a difference and contribute to change that affects Alzheimer's and dementia and Parkinson's patients.
That's the number one thing I'd love to communicate to you: we can do it. The challenge is big, and we need additional resources, but we have all the talent. We can lead the world in terms of how we fight this disease.
Conservative
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
Perhaps I can respond briefly specifically on the issue of genetic discrimination.
While I don't want to downplay the advances made in other countries, I should emphasize that Canada has played a leadership role in this and should continue to play a leadership role. Probably many of the lessons came from Huntington's disease, where all kinds of issues were opened up by having this genetic information and the potential for discrimination. We should definitely take a page from that book.
What this does is it opens up complex ethical issues, and Canada also has a leadership role in neuroethics. We want to promote that. We want neuroethics to be a part of every collaborative team that unfolds, because what we're seeing, actually, is that other countries haven't thought through these questions as well as they should have. If you can mail off a saliva sample to get a DNA analysis, and nobody actually knows how to handle the results, we have a problem, both scientifically and ethically.
So we should be the leaders, not the followers.
Conservative
The Chair Conservative Joy Smith
Thank you so very much.
I must thank Mr. Brown, who has so generously, Ms. Hughes, given you his time. I noticed on my list here that you would not have a chance to ask a question, and he was happy to do that.
If you would like to ask some questions, go ahead now.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
Well, thank you again, Mr. Brown. I'll have to buy you a glass of wine at some point at one of our receptions.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
One for Mrs. Smith as well.
There were a couple of comments made, one of them by Joyce and I believe by Dr. Stoessl as well, with respect to geological differences. I call them geographically challenged ridings; I come from one of those. Rural areas is what Ms. Gordon mentioned. I have something like the third-largest riding in Canada; it takes me two days to get through it.
You also talked about the mental health aspect. I'm trying to get some sense whether you have any recommendations as to what the federal government should be directing itself towards, or about how to better service these regions. For mental health problems in my area, people are put on waiting lists even though they might be suicidal.
Do you have comments on that?
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
Sad to say, it's true in my area, which is Vancouver; the same thing happens.
I'm not sure I can give you specific recommendations, but here is an area in which we can possibly learn from what happens in other countries. There are many possible approaches. Telemedicine is one; it's not without problems. The other approach in Holland is to have networks—I think it's referred to as a “cluster delivery model”—whereby you have networks set up in which people in the smaller centres are trained by people in the big centre. Patients only come into the big centre once, or maybe once every four years, and for the rest of the time the delivery of care is provided at smaller centres.
These are all models worth exploring, but it's a lot to expect that people who are already overstretched will try to learn about those models and take them on. I think this is a huge challenge.
I can't comment on the role of the federal government in this, as opposed to that of the provincial governments. We all recognize that it's a problem.
President and Chief Executive Officer, Parkinson Society Canada
In the area of innovation, there has been some work with Dr. Ivar Mendez on robotics, which has a wonderful application internationally whereby a specialist can coach other specialists from afar about techniques. It shows how you can transfer clinical practice into having the expertise of somebody in a remote location available to you. That has received significant foundation funding, but government funding as well.
The other one I would mention is a model in the U.K. in which nurse specialists—in this case, in Parkinson's disease—move out into the community and are available to individuals in an outreach capacity that has been very successful. They're just evaluating that study. These nurses are able to prescribe and to follow up on prescriptions in consultation with specialists.
So there are models that we can learn from.
We also have, as Dr. Stoessl mentioned, examples of telemedicine in northern communities. Dr. Mark Guttman does a telemedicine piece with Sudbury and northern communities, and Dr. Mandar Jog moves into Thunder Bay and brings a team twice a year.
So there are ways that these things can happen. They're not perfect, and it would be great if we had the specialization in the community, though it really may not be realistic. But we should be using innovation and technology to maximize interactions with individuals.
November 16th, 2010 / 10:25 a.m.
Conservative
The Chair Conservative Joy Smith
Okay, Mr. Brown, Ms. Hughes is all finished her questions, and you have this rare opportunity to ask one just before we finish.
Conservative
Patrick Brown Conservative Barrie, ON
Oh, perfect. Thank you, Joy.
There was one question that I asked when we had some representatives from the ALS Society. When we look at the limited scope of the CHR funding, it's interesting to know how much is left off the table. I realize that there could be many projects that merit investment.
I understand that since 2000, there has been $70 million invested—I guess last year it was $9 million—in Parkinson's research. But how much has been applied for? And in your opinions, what amount of research that should be examined isn't being examined? Are we leaving a lot on the table?
Scientist, Neuroscience, Ottawa Hospital Research Institute
I can tell you from a personal perspective that just since July 1, I have applied for $2.5 million in research that covers different arenas, just in my laboratory of eight people. That was internationally, not just within Canada. I hope I will get 50% of this, or if not, even 25%; then I'll reapply next year. One of the things we do is reapply and reapply, or try to reposition ourselves with other sources.
I think it has never been done before, actually, to tally how much time we spend and how much money we apply for on an individual basis and then on a group basis per year. But I can tell you that probably 50% of my time is spent on writing grant applications to raise money, from which, if I have a 50% return rate, I feel like a king; if I have a 25% rate, I can still survive and move on.
Scientist, Neuroscience, Ottawa Hospital Research Institute