Evidence of meeting #41 for Health in the 41st Parliament, 1st session. (The original version is on Parliament’s site, as are the minutes.) The winning word was research.
A recording is available from Parliament.
Conservative
Chair, Scientific Advisory Committee, Neurological Health Charities Canada
Thank you.
Madam Chair and honourable members of the committee, thank you for this opportunity to discuss the national population health study of neurological conditions, which will be referred to as “the study“ for the remainder of this presentation. This presentation will be an overview from the perspective of the scientific advisory committee, the nine-member committee created by the implementation committee after the study was launched. Dr. McDowell and I are members of that committee. Dr. McDowell is a professor of epidemiology at the University of Ottawa. I was a clinical neurologist and laboratory researcher at McGill University and the Montreal General before my retirement.
In at least two previous sessions you've heard from other speakers about Neurological Health Charities Canada and quite a bit about the study. For example, on March 1 Vanessa Foran told you about the history of Neurological Health Charities Canada, known as NHCC, and the genesis of the study. At your April 26 discussion on Parkinson's disease, you heard from Dr. Daniel Krewski, who is a principal investigator on one of the projects of this study. You also heard from Joyce Gordon, who is president and CEO of the Parkinson's Society of Canada, but who is also president of the NHCC and is a member of the study's implementation committee, as is Deanna Groetzinger, who has just spoken.
As Vanessa explained in her March 1 presentation, the study is a collaboration involving a group of neurological health charities, the Public Health Agency of Canada, and researchers in academic centres across the country. Thirteen individual projects, three national surveys, and a micro simulation study are the components of this study, whose broad objectives are to determine as precisely as possible the numbers of Canadians who suffer from neurologic conditions, and to enumerate the impact of these neurologic conditions on the daily lives of the affected individuals, their caregivers, and the broader health care system.
Over the next few minutes my aim is to give you an overview of the anticipated collective outcomes of the various components of this large study.
Eight of the projects in the two surveys will contribute current data on the epidemiology of up to 18 conditions that cause neurologic disabilities in the overall Canadian population. In other words, these projects will assess prevalence, incidence, and co-morbidities. In addition, data from some of the projects will relate to specific subgroups of Canadians: first nations peoples, the elderly, and children.
A second group of projects addresses risk factors. Data on risk factors and the factors that influence disease progression are being analyzed in four other projects of the study. The outcomes of these projects will be important for the prevention and amelioration of disabilities due to the targeted neurologic conditions. The impact of neurological conditions on the daily activities, independence, emotional state, and financial situation of affected individuals is being studied in four of the projects and one of the national surveys. Because neurologic disabilities also have an impact on the lives of caregivers, families, friends, and communities, estimates of such broader effects are viewed as an important additional outcome of the study.
Six projects in both surveys will provide measures of health services utilization, including its availability, gaps in care delivery, and the identification of novel ways of providing appropriate care for persons with neurologic conditions.
The study also has three other potential outcomes that have broader implications. First, new sources of epidemiological data are being developed. For example, two projects are testing the feasibility and validity of using the electronic medical records of primary care physicians as sources of data for surveillance and other epidemiological studies.
Two other projects will develop recommendations on the use of registries for ongoing surveillance of neurologic conditions. These projects are evaluating inventories of existing registries and developing guidelines for the creation of new ones.
A final product of the study will be the micro simulation model. It will combine data from the various projects with projections of population growth and age to predict the future demands on health care services due to neurologic conditions and to indicate the most cost-effective way to deliver these services.
In conclusion, we would like to thank the Government of Canada for its commitment to and support of the national population health study of neurological conditions. To ensure the legacy of the study continues, we hope this committee will recognize the importance—as others have suggested—of adding neurologic conditions to the already functioning Canadian chronic disease surveillance system, and we hope that you will make such a recommendation in your report on these hearings.
Dr. McDowell and I look forward to your comments and questions.
Thank you.
Conservative
The Chair Conservative Joy Smith
It has been an extremely great morning, with a lot of very insightful information that's very useful to all of us.
We'll now begin our round of Qs and As. This is our first round, which is for seven minutes.
We'll begin with Ms. Davies, please.
Libby Davies NDP Vancouver East, BC
Thank you very much, Chairperson.
First of all, to the witnesses and to Mr. Walton on video conference, welcome to the committee today. I think you're all aware that the previous committee in the former Parliament did a lot of work on this, so we're catching up. Having you here today and hearing more testimony is actually very helpful to the study we're doing.
I think we've gone from the broad issues that Dr. Bray has just put forward to some very specific issues.
I wanted to say as a general comment, first of all, that for those of you who have talked about the need for greater supports for caregivers for people with MS and other neurological diseases, I do think that's really important. It keeps coming up, just so you know. Whatever issue we look at in terms of chronic diseases and conditions, it keeps coming up. So clearly, there's a lot more work that needs to be done. I hope very much that will be a part of our report: the need for—as I think you put it, Ms. Vaillant—refundable tax credits.
I know the situation is really tough for people who have lost their employment because of their medical situation, so it's a huge issue, which the federal government can directly assist with. That's not going to be my question, but I wanted you to know that we've heard everything you're saying.
The questions I have focus more on where we're at with the CCSVI. We've all been visited by constituents, by MS sufferers. I have, on many occasions, and I have a couple of things on that. It's fascinating to me to see how the system responded when information about this treatment first came out, whether it was the MS Society, the government itself, or the medical community overall. We do know that the clinical trials are going to begin, so I have a couple of questions.
First of all, are you satisfied that the trials are happening quickly enough? There seem to be so many...I don't want to call them delays, but it's taking so much time. I know that there has been a great impetus to have this move more quickly.
I'm a layperson, but I do have the sense that there has been so much happening in the U.S. MP Kirsty Duncan organized a great session a few months ago at which we had some incredible experts from the U.S. It seemed that there was a lot more happening there in terms of the CCSVI treatment.
So I do have a question about why it took so long in terms of the response here, and, looking back, how you feel about that now. How has the MS Society itself dealt with this issue? Because I know it was quite divisive. There were people who went out and formed their own sorts of networks and so on.
So I do think it's worth exploring this, because to me this was very much a patient-led movement, if you will. It almost became a movement—maybe it is a movement—that compelled us to get on it. I don't think we had ever seen that to such an extent before, at least in my experience, but I haven't been on the health committee very long.
I'd really like both of you to respond to that—and the other witnesses as well—in terms of what's happening in the U.S. and whether Canada is now behind that, and whether you're satisfied with what is contemplated now, both for the trials in Canada and for the monitoring system that's being set up.
I hope that's clear enough for you to answer.
Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
I can start, and then we’ll see who would care to comment as well.
First, I'll say that we all want this to happen as quickly as possible. But I do understand, and the MS Society does understand, that a process to get good information must be followed. We've been pushing to get as much information as possible, to get a clinical trial started as soon as possible. It's interesting. I mentioned in my remarks that Dr. Zamboni's paper was published in late 2009. There were then media pick-up of that. But even the week after that, we realized that there was something we immediately needed to look into concerning this possible treatment. So we launched our own request for proposals to look at the relationship between CCSVI and MS. We were the first organization in the world to issue a request for research proposals on CCSVI and MS and that possible relationship.
Research does take time. I understand, from conversations—our research department is working closely with CIHR on this clinical trial process—that for research in Canada, this is lightning speed. The government has responded quickly to pressure from people with MS, and thank goodness for that. Thank you all for listening. I'm sure you've all had people with MS in your offices saying that we need to find out answers about this right now. That things have moved ahead as quickly as possible I think is because of the widespread understanding of parliamentarians that this was an important issue.
NDP
Libby Davies NDP Vancouver East, BC
Can I get more specific? Does the MS Society know how many MS patients have gone to the U.S.? I have the perception that there has been a huge number of people, at some considerable cost, I would imagine, going to the U.S. because this new treatment is available when it hasn't been in Canada. It does leave us with the feeling that we are behind. Do you have any idea on how that's looking?
Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
Initially, I would say most Canadians with MS who were interested in having the procedure were going not to the U.S. but to places in Europe, to the Caribbean, even as far as India. Most recently—and I think it makes a ton of sense—if a procedure is available in New York, and it tends to be the border states, then people are having the procedure in the U.S. It's easier for them to get there. The procedure is more accessible.
But I think we need not confuse treatment and research, because the U.S., being a totally different medical and health care system from Canada--
Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
--it's very different. If I could just say—
Conservative
Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
Okay, sorry.
I will wrap up by saying that we know a lot of people are going out of country, mostly to the U.S. right now, and we're really grateful that the various registries and observational studies will capture that information.
Conservative
Conservative
Patrick Brown Conservative Barrie, ON
Thank you, Madam Chair.
Thank you for all the testimony. I know you were here when we had the subcommittee studying neurological disorders, but I think the fact that the entire health committee is studying it shows how seriously the health committee pays attention to neurological disorders.
To Derek Walton from Barrie, I thank you so much for your testimony. You're always eloquent, and the fact that you've been raising awareness and research for eight years is incredibly courageous and commendable.
For those who don't know, Derek jumps out of a plane every summer to raise funds for research for ALS and has gathered a gigantic following to do this. He has convinced everyone, from representatives from the Argonauts to civic leaders across Simcoe County, to jump out of the plane with him as well. He's asked me to jump out of the plane. I haven't taken him up on that, yet but I'm starting to be pressured.
Conservative
The Chair Conservative Joy Smith
Mr. Walton, I'll put money on that if you get Mr. Brown to do that, okay?
Conservative
Patrick Brown Conservative Barrie, ON
He's raised more for Sunnybrook and their ALS research than anyone else, so you truly are a living legend when it comes to what you've done for ALS. Thank you for your contributions.
Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
Thank you, Patrick. It's much appreciated.
Conservative
Patrick Brown Conservative Barrie, ON
I wanted to ask a few questions based on the testimony today, specifically with regard to ALS. I know you worked very closely with Sunnybrook.
You've been doing a lot of fundraising for the research component of ALS. What type of research is being undertaken at Sunnybrook that you think they could use help on? What type of ALS research is occurring in the country that we need to do more of?
We talked about a larger research envelope. What possibilities would exist if there were a larger research envelope for ALS?
Maybe that question could go to Derek and Deanna.
Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
First of all, because of the length of time that I have had ALS, I no longer qualify for research trials. That in itself is a little frustrating for me, personally, because the only known drug at the current time that is known to slow down the progression of ALS is a drug called Rilutek or riluzole, and even that, Patrick, only reduces the timeframe by approximately 15%.
Now, Dr. Lorne Zinman, who heads the ALS clinic at Sunnybrook, in conjunction with all other ALS clinics in Canada is actively in the process of researching. They had tried lithium, and unfortunately it proved to not be conducive to ALS symptoms, but they are currently looking at a variety of trials and with a placebo being used within these groups. Usually it's also in conjunction with other ALS clinics throughout North America.
I always feel that because of the small number of ALS clients—I mentioned in my presentation there are 2,500, as opposed to the 100,000 Parkinson's or MS clients—we ought not to be forgotten in the way of research funds.
I really hope that the committee can see a way of advancing additional funds for research, which is badly needed in the ALS community.
Conservative
Conservative
Patrick Brown Conservative Barrie, ON
I was going to say that the point of interest from Deanna would be that I imagine the concerns with MS are similar. There are so many good research applications. We hear that with applications to CIHR there are obviously so many they can be attended to. Do you get that sense as well with MS, that good projects that should be investigated are being left on the table, or are we starting to get a much higher percentage of them being investigated?
Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
Actually, the MS Society itself is in an interesting sort of dilemma, in that we have been very successful in encouraging through an MS research and training network to encourage young researchers to come into MS research. We are now finding that we aren't able to support as many of the good project grants as we were able to, but I think that's a good problem to have. In terms of, as someone mentioned, perhaps more matching of health charity funds with the federal government, all of the new Canada Brain Research Fund, might be an interesting thing to talk about with all of us who are members of NHCC.
Another interesting development I would see is that there's the potential for neurological research, writ large, not just necessarily MS and ALS. We've been able to fund a large research grant on progressive MS, and there it's not an inflammatory process, but more of a neuro-degenerative process, which perhaps is more similar to Parkinson's, Alzheimer's, etc. So I think we're starting to see some cross-linkages among the neurological conditions that may be more similar at certain stages than we thought before. I think this is an exciting new approach to neurological research.
As I said, I think the Canada Brain Research Fund is an excellent example. It's a model we all might want to look for in terms of encouraging research into ALS, MS, or, writ-large, more neurological research.