Health Committee on May 1st, 2012

[Colin Carrie, Conservative, 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?

[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.

[The Vice-Chair, NDP, Libby Davies]

Thank you, Dr. Carrie.

Mr. Strahl, there are about three minutes left.

[Mark Strahl, Conservative, 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?

[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--

[The Vice-Chair, NDP, 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.

[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.

[The Vice-Chair, NDP, 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.

[Djaouida Sellah, NDP, 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?

[The Vice-Chair, NDP, Libby Davies]

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

[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.

[The Vice-Chair, NDP, Libby Davies]

Thank you, Ms. Groetzinger.

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

[Djaouida Sellah, NDP, 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—

[The Vice-Chair, NDP, Libby Davies]

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

Yes, now I can hear you.

[Djaouida Sellah, NDP, 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?

[The Vice-Chair, NDP, Libby Davies]

Just give a very fast response. If you have further information, you are most welcome to submit it to the committee.

[Dr. Galit Kleiner-Fisman]

Okay, I'd be happy to.

In fact it's an easy question to answer. I've been thinking about it a lot, in the sense that we've established this kind of centre where I'm currently working. It's extremely efficient. Patients have mobility issues; they have issues related to understanding how their medications work; medications interact with other medications. These interactions cause a whole bunch of secondary, other problems. People have problems related to what they eat and how that interacts with medication.

We try to educate them and their families and provide them with resources and with professionals to provide them the information they need so that they can successfully manage their condition. The idea is empowerment for them and empowerment for their doctors. We ensure that nothing gets lost.

[The Vice-Chair, NDP, Libby Davies]

Thank you very much. Anything that is presented today is on the record, so we can get it from Hansard, but if you have additional information, you could send it along.

[Dr. Galit Kleiner-Fisman]

I'd be delighted to provide it for you.

[The Vice-Chair, NDP, Libby Davies]

Our next questioner is Ms. Block.

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

Thank you very much, Madam Chair.

I would join my colleagues in thanking you for joining us today. Your testimony has really helped me in understanding some of the issues with neurological diseases and the need for research.

Mr. Walton, I want to thank you so much for sharing your personal experience with us. I want to confirm that I understand you have been living with the symptoms of ALS for approximately 14 years and then with a confirmed diagnosis of 10 years, so I can imagine that you have become a very strong advocate for raising awareness of ALS as well as for fundraising.

You also noted a concern regarding the fact that with a smaller number of individuals living with ALS as compared perhaps with those living with Parkinson's or MS, the funding dollars aren't as readily available for ALS as they might be for other studies.

I'm wondering whether, in the time you've been advocating for ALS, you're finding that the awareness has been raised and that more people are contributing to the funding for ALS.

[Derek Walton]

Thank you for your question, because it is very important.

When I was putting my presentation together I asked ALS Society of Canada how they got their research funds. Every dollar comes from donors. That is so frustrating, because they in turn fund Dr. Zinman at Sunnybrook. So donor dollars that are going to ALS Canada quite often finish up at Sunnybrook for their research.

It's been my experience, since I became actively involved in raising awareness, that the message is getting out there. Sadly, there appear to be more cases of ALS appearing on a regular basis. Unfortunately, due to the short lifespan these clients seem to become very isolated, and a lot of times friends will disappear. I'm glad that the other presenters mentioned the depression aspect, because there becomes a sense of unworthiness when you're not able to do normal tasks. That's why I cannot emphasize enough that dollars are required. As much as the national brain study is looking at the overall brain per se, for ALS it needs to identify that naughty gene that is breaking down the motor neurons and give us ALS clients some sense of hope that we are moving towards finding a cure.

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

Thank you very much.

I'm not sure, Mr. Walton, if you can answer this question for me, but certainly we know with some of the other research that's happened that there are often concentrations of individuals living with a certain disease in certain areas of the country. Is that true of persons living with ALS? Are there some areas of our country that have more persons living with ALS than other areas have?

[Derek Walton]

They say, Ms. Block, that it's related more to the size of population than to any specific.... I would say obviously Ontario has one of the highest number of ALS patients because of the overall population.

Interestingly enough, there is a study going on in Italie right now that is looking at professional soccer players, and they seem to think that there may be a tie-in with the pesticides and the fertilizers used on the grass. The U.S. is looking at football with regard to head contact, etc. So there could be these little pockets that have an unusually large number of patients.

There are three kinds of ALS. Familial ALS is inherited within the family, and that represents approximately 5%. There's the worst one of all, which is bulbar, which affects the muscles in the throat. Death comes very quickly in that situation. Then there's the one I have, which has no rhyme or reason. I just try to think positively, but I know that I'm the lone voice. I'm in a 5% bracket now, so please don't look at me as being the normal ALS client. I'm absolutely one of the very lucky ones, if you want to say that, because I do feel lucky. I have a wonderful wife and a wonderful caregiver and a strong support system.

[The Vice-Chair, NDP, Libby Davies]

Thank you very much, Mr. Walton.

We'll move to our next questioner, Dr. Morin.