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

10:15 a.m.

NDP

The Vice-Chair Libby Davies

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

10:15 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

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.

10:20 a.m.

NDP

The Vice-Chair 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.

10:20 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

I'd be delighted to provide it for you.

10:20 a.m.

NDP

The Vice-Chair Libby Davies

Our next questioner is Ms. Block.

May 1st, 2012 / 10:20 a.m.

Conservative

Kelly Block 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.

10:20 a.m.

Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada

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.

10:20 a.m.

Conservative

Kelly Block 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?

10:25 a.m.

Member of Advocacy Committee, Amyotrophic Lateral Sclerosis (ALS) Society of Canada

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.

10:25 a.m.

NDP

The Vice-Chair Libby Davies

Thank you very much, Mr. Walton.

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

10:25 a.m.

NDP

Dany Morin Chicoutimi—Le Fjord, QC

Good morning.

I’d like to speak to the subject raised earlier by Ms. Vaillant. Although the medical aspect of neurological conditions is quite interesting, this is a matter of provincial jurisdiction. I would like to know what the federal government can do to help those who suffer from a neurological condition or their caregiver families.

Ms. Vaillant mentioned earlier that there is a non-refundable family caregiver tax credit. She believes, as does her organization, that this credit should be refundable.

I’d like to ask other committee members if they agree, particularly in view of the fact that, as she mentioned in her brief presentation, 80% of individuals living with multiple sclerosis are unable to work and thus suffer a loss of revenue. Obviously, if the spouse is the caregiver, he or she must take time off from work to do so.

The NDP is aware that low-income families and even middle-class families cannot benefit from the tax credit. I would therefore ask other members if they agree that the family caregiver tax credit should be non-refundable.

10:25 a.m.

NDP

The Vice-Chair Libby Davies

Maybe what we could do is go down the panel. If each of you would like to respond quickly, we have about three minutes for a response.

Dr. McDowell and Dr. Bray haven't had a response yet, so if you would like to comment in terms of support for families and tax credits, feel free to add your voice, and then we'll hear from the others.

10:25 a.m.

Dr. Ian McDowell Vice-Chair, Scientific Advisory Committee, Neurological Health Charities Canada

It seems to make a whole lot of sense to me. When I was working on Alzheimer's disease, we did an intensive study on the costs to caregivers and collected national data on that. We were able to model it.

One of the advantages of the study that Dr. Bray described is that not only does it collect facts and figures about how many cases, but it also feeds those into the simulation modelling that allows us to model the impact of varying policy approaches to things such as caregiver support on an economic basis. That is an additional connection between the more basic science and clinical research and policy formation.

10:30 a.m.

NDP

The Vice-Chair Libby Davies

Thank you.

Dr. Kleiner-Fisman, did you want to add anything?

10:30 a.m.

Neurologist and Movement Disorders Specialist, Baycrest Hospital

Dr. Galit Kleiner-Fisman

Absolutely. In fact, the figure that I had quoted in terms of $750 million, those were the direct costs. Nobody talks at all about the indirect costs, and that's one of the largest areas where there's a huge impact in terms of families.

Parkinson's is not just a disease of the elderly. In fact, it starts in some people in their thirties and forties, in the prime of their lives. There have been studies that have actually shown the near millions of dollars of lost income to the person living with Parkinson's, not to mention the fact that the caregiver has to take time off work. It's a natural assumption that the spouse would take care of the person. One of the major issues related to it, and it all ties in together in terms of depression and relationships between people, is the loss of income and the fact that people lose their sense of self, both the patient as well as the caregiver, who has to now stop his or her career also.

Absolutely, the support of caregivers is key. In the Rising Tide report, that was one of the priorities with regard to Alzheimer's disease.