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.

On the agenda

MPs speaking

Also speaking

  • Derek Walton  Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada
  • Galit Kleiner-Fisman  Neurologist and Movement Disorders Specialist, Baycrest Hospital
  • Deanna Groetzinger  Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada
  • Marie Vaillant  Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada
  • Garth M. Bray  Chair, Scientific Advisory Committee, Neurological Health Charities Canada
  • Ian McDowell  Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

May 1st, 2012 / 10:05 a.m.

Conservative

Colin Carrie Oshawa, ON

Yes, thank you very much, Madam Chair.

First of all, I do want to thank the MS Society for your partnership, but also for your support. As you mentioned, research in Canada on this issue is unprecedented in terms of how quickly it is moving forward. I do appreciate the positive working environment you have with the federal government. As you said earlier, all members of the House would like to see this move forward as quickly as possible. Thank you for supporting the research and for your support for proper ethical consultation before we move forward with any experimental treatments on Canadians.

My question is actually for Dr. Kleiner-Fisman. First, I want to say thank you very much for being here today, and say hello to Dr. Reichman. When he was in committee I thought he was one of the most forward-thinking witnesses we had.

I have an interest in technology and innovation, and I was wondering what role can assistive technological devices play in the treatment and rehabilitation of persons with movement disorders and Parkinson's?

10:05 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

I really appreciate that question and the opportunity to tell you about what it is we're doing in the very unusual and incredibly successful care model that we're practising at Baycrest. It's actually a collaboration with a private health care clinic called the Assistive Technology Clinic on Baycrest grounds. The way we're working is that I'm actually, as you know, a movement disorder physician. Medically, I see the patients in the Baycrest part of the hospital.

The second part of what we do is the support and rehabilitation of our patients, which is being done on the grounds of the Assistive Technology Clinic. The clinic provides mobility devices, assistive communication, and does all sorts of research in trying to advance various different rehabilitation programs, and we're having incredible success.

What's particularly interesting about this place is that even though I'm doing movement disorders there, it actually started as an MS clinic. It has grown into an ALS and MS and stroke clinic. Really, the final common pathway of people with neurologic disability is the same. It doesn't really matter what the original cause is. People have mobility problems, people have--as you had mentioned--problems related to various social issues and financial issues. So we have a social worker. We distribute.... I think it's the largest distributor of wheelchairs in Canada. People come there when they have nowhere else to go and they get what they need at a nominal fee, if none at all. They are supported throughout their disease, regardless of what stage they're in. We're always there to help them.

It really is a remarkable place. There's a lot of focus on research into cures--and obviously that's incredibly important--but your constituents and my patients are living with their problem right now, and the cure isn't tomorrow. While there needs to be sort of parallel thought regarding research and the future, there also have to be helping people today.

There are resources to help people today, but very few people, believe it or not, have access to those resources. Even for physical therapy, you have to have private insurance to actually get physical therapy. So there are so many barriers to actually living today. What my philosophy and that of the people I work with is--and I think it's a growing philosophy in terms of care of patients--what can we do, what are the barriers we can overcome to help you get through your life today, your activities of daily living? How do we optimize quality of life today? It's true for all of us. We do have assistive technologies, and they are beneficial for patients with neurologic disabilities. I think that has to be a focus of a strategy.

10:10 a.m.

NDP

The Vice-Chair Libby Davies

Thank you, Dr. Carrie.

Mr. Strahl, there are about three minutes left.

10:10 a.m.

Conservative

Mark Strahl Chilliwack—Fraser Canyon, BC

Thank you very much.

Thank you to everyone who presented to us today. I'm always impressed at this committee with the level of expertise in Canada, not only the level of education that people have undertaken, but also the personal experience that we have shared. Marie and Derek, I want to thank you especially for opening yourselves up to us and giving us a window into what you face.

One of the things we've heard in different studies, chronic disease as well—Marie, you talked briefly about it—is the issue of mental health as it relates to.... I don't know what it would be called, not a side-effect, but it's a separate issue you deal with. How has the MS Society been able to help with that? Is that a focus of the MS Society, providing the mental health services? Dr. Kleiner-Fisman, you talked about treating the whole person. Is that part of what you do at Baycrest as well?

10:10 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

Absolutely. In fact, I'm very interested in patient input as to what their actual needs are. We recently conducted focus groups and studies and we're about to publish a paper on what patients' perceptions of their needs are, as opposed to what we, as doctors and professionals, perceive as their problems.

I have taken care of people with Parkinson's for many years, and I do my best to be open and sensitive to their issues, yet I was really surprised, as the moderator of these focus groups, what their issues were. Issues one to eight had absolutely nothing to do with their actual medications or their symptoms of Parkinson's. It had to do with their mental health. It had to do with their relationships with their partners and with their families. It had to do with their perception of being an ill person. It had to do with their financial situation and their concerns for the future and planning for the future and for their children.

It was really sobering and interesting to find out what really is on the forefront of people's minds and what we have to give them. It's not enough to give them medicine, that's not enough. It's not enough to just treat symptoms. There are so many. You can't break down a person into how they move, into how they think, and into how they feel. It's all part of one continuum. Those are the issues that are pressing for people, and we have to think about that in terms of resource allocation as well as--

10:10 a.m.

NDP

The Vice-Chair Libby Davies

We just have a little bit of time, so if we want to hear the MS representatives.... I'm sorry to cut you off.

10:10 a.m.

Vice-Chair, Ontario Division Board of Directors, Multiple Sclerosis Society of Canada

Marie Vaillant

It's a very good question. Thank you very much.

There is a fairly high level of depression among people who live with multiple sclerosis. Numbers say about 50% of people who live with MS will suffer major incidents of depression. I got a little choked up when I talked about leaving work. I suffered a major depressive event during that period.

We with the MS Society are doing a lot about awareness of this. I will be giving a presentation tomorrow night as part of a national education event talking about wellness, and the emotional piece is part of it. It's really about education. I was lucky that between them my neurologist and my GP, when I was walking to the MS clinic and breaking down in tears, which is not what I do, said I needed to be on drugs. I was put on therapy to deal with the depression, and it worked.

Really, it's a question of education, and mirroring what Dr. Kleiner-Fisman is saying, the whole cycle of social needs of people with chronic illnesses is much bigger than just the drugs; it's the emotional element of it.

10:10 a.m.

NDP

The Vice-Chair Libby Davies

Thank you, Mr. Strahl.

We'll now move to our second round of questioning, which is of five minutes. Just keep that in mind: it's a shorter time period to speak and respond.

The first question will be from Dr. Sellah.

10:10 a.m.

NDP

Djaouida Sellah Saint-Bruno—Saint-Hubert, QC

Thank you Madam Chair.

I wish to thank all of our guests here today. A special thanks to you, Mr. Walton. I’d like to say that perhaps your skydiving activities have prolonged your life expectancy beyond the norm. I encourage you to keep on fighting.

I am a doctor by trade and so, as you can well imagine, scientific research is of great importance to me. One of the studies on CCSVI subsidized by the Multiple Sclerosis Society of Canada focuses, in particular, on whether chronic cerebrospinal venous insufficiency is a cause of multiple sclerosis.

The study, conducted by Dr. Brenda Banwell from the Hospital for Sick Children, involves examining children and teenagers with MS to determine whether the venous system is abnormal, as children and youth represent a population where the disease process is at a very early stage and are also unlikely to have age-related changes to their blood vessels.

What are the main conclusions that can be drawn from this study on teenagers and children? What other studies on CCSVI as related to MS are being conducted in Canada and abroad? What results have been attained, if any?

10:15 a.m.

NDP

The Vice-Chair Libby Davies

There's about three minutes left to reply, just so that you know.

10:15 a.m.

Vice-President, Government Relations and Policy, Multiple Sclerosis Society of Canada

Deanna Groetzinger

Dr. Brenda Banwell's study of CCSVI possible in children is still ongoing. It's part of the suite of seven studies that the MS Society of Canada and the National MS Society are funding.

The results are not yet available. We were at the 18-month mark a couple of months ago. This summer, we'll be at the end of the two-year mark. The researchers will then bring those findings together. Until sometime late in the summer, I would imagine, we won't have those results. There are seven studies ongoing that are not a clinical trial but are looking at the relationship and at best ways to diagnose this.

Last week I looked at the list of the clinical trials registry, which is a part of the American National Institutes of Health. and there were eight CCSVI clinical trials registered. Interestingly enough, though, three are taking place in the U.S., two in Poland, two in Italy, and one in the U.K. There's one in the U.S., which is in Albany, and one in Italy, which is just getting under way; only those two are actually phase three randomized, double-blind, gold star sorts of clinical trials. The rest are more observational or open label.

So there's a lot of work being done. And certainly with every scientific gathering about MS or specifically about CCSVI there's much more being known. We'll know so much more when the seven studies are completed this summer as well.

10:15 a.m.

NDP

The Vice-Chair Libby Davies

Thank you, Ms. Groetzinger.

There's about a minute left, Dr. Sellah, if you have another quick question—very quick.

10:15 a.m.

NDP

Djaouida Sellah Saint-Bruno—Saint-Hubert, QC

Thank you, Madam Chair.

My question goes to Dr. Kleiner-Fisman. You stated that ideally, there would be multi-disciplinary teams so as to ensure coordinated care between the different—

10:15 a.m.

NDP

The Vice-Chair Libby Davies

There's no English translation. Could one of the interpreters say something?

Yes, now I can hear you.

10:15 a.m.

NDP

Djaouida Sellah Saint-Bruno—Saint-Hubert, QC

Let me rephrase that. As did most of the doctors and witnesses before this committee, you mentioned multi-disciplinary teams and coordinated care to make sure that patients’ needs are addressed. Apparently, this is not the case as only a handful of centres have adopted this approach.

What do you suggest concerning a pan-Canadian strategy? I would also ask that you submit your presentation to the clerk if you please?