Health Committee on April 26th, 2012

[Prof. Daniel Krewski]

Not at this scale. Systematic review is the standard now in trying to distill what we know about an issue, but to do 14 times two, because it's onset and progression systematic reviews, is really, I think, a first.

[Colin Carrie, Conservative, Oshawa, ON]

I know Ms. Gordon would like to comment on this, but I was wondering if you could also comment on another aspect, because I have an important question I'd like you to answer.

[The Chair, Conservative, Joy Smith]

Just one minute, Ms. Gordon. We haven't ignored you. It's just that Dr. Carrie wants to add one.

[Colin Carrie, Conservative, Oshawa, ON]

I would add one to your comment, if you don't mind, because in budget 2011 our government invested more than $60 million to support research in the area of personalized medicine. Given that it enables medical practitioners and researchers to determine which medical treatments are safe and effective for particular patients, and we know about different genetic factors that contribute to the development of Parkinson's disease and other neurological diseases, I was wondering if you could comment on what role personalized medicine could play in the treatment of these diseases as well.

I'll let you finish up with those comments, Madam Gordon.

[Joyce Gordon]

I was just going to add comments. Was your question to me?

[Colin Carrie, Conservative, Oshawa, ON]

If you could do that, but then answer the question I just posed.

[Joyce Gordon]

I just wanted to make a comment about the Public Health Agency study. It's a really unique collaboration between Neurological Health Charities Canada and the Public Health Agency of Canada. It's a really unique partnership. It has been an equal, equitable, hard-working project that has 18 studies in it. It actually came out of the fact that none of us had data to make our case for neurological diseases in Canada.

So I just wanted to say that I applaud the work that is being done in this particular project, but the other projects cover the whole range of everything we've talked about today, and we're actually evaluating the work together. The reason I'm making this point is that it is about collaboration and it is about partnership and it is about exploring common ground, to be able to benefit the entire neurological community. As you may be aware, that was a $15-million project for which we will have the results in 2013. So it's a very exciting venture forward around not-for-profits showing together that we can make a difference together. But with government, we can actually have a collaboration that will have meaningful results for the Canadian population.

[Prof. Daniel Krewski]

Could I just apologize in five seconds to Joyce for not acknowledging the critical role of the NHCC in initiating this initiative and coordinating it with the Public Health Agency? Sorry.

[Joyce Gordon]

Well accepted, but you didn't need to say it.

[Colin Carrie, Conservative, Oshawa, ON]

Would you be able to comment on the personalized medicine question that I asked?

[Joyce Gordon]

I don't know a great deal about the details of it. I can tell you that we have been involved and we have been asked to put forward our position as Neurological Health Charities Canada on personalized medicine in terms of how that issue will affect our constituents.

So we have been asked to come to various fora by the Canadian Medical Association, for example, and by other partners. Actually there's a meeting today dealing with this in Toronto, which our staff are attending. We believe in the principles that have been espoused, in general, by the CMA. I would use the words “patient-centred medicine” or “individual-centred medicine”. We actually don't use the word “patient” in our organization. We're about empowerment and about talking about individuals taking control for themselves, but the whole issue of personalized medicine and of individuals being able to manage their own condition in dialogue with primary care and with specialists is absolutely key.

There were points I was making with you about public awareness, public education. I didn't share with you, but Parkinson Society Canada will be publishing clinical guidelines in June.

[The Chair, Conservative, Joy Smith]

Thank you very much, Ms. Gordon.

We'll now go into our second round of five minutes.

Dr. Sellah, would you like to pick up with five minutes of questioning? You'll be first, Dr. Sellah. I don't know if you want to pick up on that--or whatever you have. Go ahead.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Thank you, Madam Chair.

I thank the witnesses for having come here to enlighten us further on Parkinson's disease.

A study was conducted by Health Canada and Parkinson Society Canada on the social and economic impacts of Parkinson's disease. The study showed that more information was needed on the disease in various areas, epidemiological data being one.

There are two types of Parkinson's, i.e. the one that presents with tremors and occurs more frequently among young people, and the type which involves gait difficulties and occurs among persons of 70 or older. Unfortunately the medical information does not allow us to diagnose Parkinson's disease early, because there are no blood tests to do so. So, we proceed by a process of elimination.

I would also like to know more about the burden on individuals and families. Mr. David Simmonds just mentioned that aspect.

Will the quadrennial study of the Public Health Agency of Canada, on Canadians living with neurological diseases, examine these gaps?

Do new studies have to be done in order to increase investment in these sectors?

[The Chair, Conservative, Joy Smith]

Who would like to take that question?

[Joyce Gordon]

Maybe I could answer that.

There are a number of studies that are looking at the everyday lived experience of Parkinson's. For example, the LINC study out of Dalhousie, which is a cross-collaborative study, will be looking at what happens day to day with care partners, with family members, with individuals. When you look at the whole study, it's around all the things you named—incidence, prevalence, risk factors, health systems. There should be suggestions or key findings coming forward that will be helpful to determine how best to move forward. We tried to make the study as broad as possible, to touch major areas around the impact of neurological diseases on the Canadian population and on the Canadian economy.

David Simmonds was part of a micro-simulation study, which, I have to say, was very powerful and very moving. He and his wife came and talked about that experience over the lifespan, and it was going to be used to project out what happens over the life course of various diseases.

So I think the answer is yes, it's broad enough to cover many of the topics you've asked about.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Do I have any time left, Madam Chair?

[The Chair, Conservative, Joy Smith]

You have two minutes left.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

You referred to the deep brain stimulation Mr. Davidson benefited from, and I am curious to know at what stage of the disease it can be determined that a patient should receive that treatment. As we know, Parkinson's disease has many stages, and it evolves. This evolution may last 10 or even 20 years.

[Dr. Edward Fon]

Indeed, the disease has several stages. Generally, the patients who are good candidates for that procedure are those whose disease is relatively advanced, but not too much so. Good candidates are those in whom we observe a lot of fluctuations. As you know, most patients are treated with medications and experience fluctuations. When they take the medication, they feel well, but the effect does not last long enough.

The stimulation allows us to reduce the doses and to even out the symptoms. But you cannot wait too long. The problem is that the number of patients who could benefit from this treatment is disproportionate compared to the availability of the treatment. At the Neurological Institute, we treat approximately 100 patients a year, but there are 400 or 500 patients who would be good candidates. Unfortunately, access to that treatment is insufficient.

[The Chair, Conservative, Joy Smith]

You have about 15 seconds.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Why can a larger number of patients not benefit from this treatment?

[Dr. Edward Fon]

There is no doubt that lack of funding is a large part of the problem. I can talk about our own experience. We were forced to create a special budget for the stimulators, which can cost up to $25,000 each. They are expensive, but Mr. Simmonds said that medication costs $25,000. Which is to say that over the long term, this equipment may not be a bad investment.

[The Chair, Conservative, Joy Smith]

Thank you so much, Dr. Fon. We always get very good questions. Dr. Sellah is actually a medical doctor, and she asks extremely good questions.

Mrs. Block.

[Kelly Block, Conservative, Saskatoon—Rosetown—Biggar, SK]

Thank you very much, Madam Chair.

Thank you as well to all of our witnesses today.

I think my colleague Ms. Davies framed it very well when she said we received this very broad picture across the spectrum of the issues surrounding neurological diseases and their different stages.

I want to comment, Mr. Simmonds, on the sharing of your personal story. That always is a profound way for us to get a better understanding of what individuals are living with. When we're doing this study and we're talking about research, often we don't make that connection. So I really do appreciate your coming in.

You made a statement in your remarks that these diseases are robbing our country of intellectual capital. I think that if we can get that understanding, it will compel us to continue in our efforts towards some prevention and potentially a cure for something like Parkinson's or many other neurological diseases.

I just want to focus on another statement you made. You said timeliness and diagnosis are the issue and that diagnosis often comes too late, so then we find ourselves in that pressure of focusing on prevention but also having to ensure that individuals living with Parkinson's have the quality of life they deserve.

Actually, some of my questions are for Mr. Hu around the therapy he described for us today. You may have mentioned this in your opening remarks, but I just want to go back and ask, what provoked you to do this study in the first place?

[Dr. Bin Hu]

It was curiosity. I didn't set out to cure Parkinson's at all.

Dr. Fon mentioned that curiosity-driven research is the start of any innovation and discovery. So my research field deals with how the brain processes auditory information that matters to you. We hear a lot of sounds in the environment, and we ignore them by focusing on speech. There's a particular brain network devoted to that part of auditory processing.

If you think about a pianist, one outstanding performer, they play music not by reading individual notes but by processing large chunks of music and transforming them almost immediately, automatically, into movement. That is the part of the brain mechanism I'm interested in.

So I studied the basic mechanism—molecular, cellular, neurophysiology—but it wasn't enough. My personal opinion is that we have done a tremendous amount of research, but if people are caught up in these mountains of knowledge they have to step aside to see how much they can apply. I took that initiative.

Because this intervention is non-invasive, I can do it. That's how it has evolved. We couldn't do it until a couple of years ago because of technology. Now there's the technology. With fourth-generation iPods we can link the music very precisely with the step size, almost in real time.