Health Committee on April 26th, 2012

[Dr. Edward Fon]

I will be asking Dr. Hu to buy a copy of my new CD now.

[Dr. Bin Hu]

We're a committee on health, not on music.

[Dr. Edward Fon]

I'd like to underscore what Dr. Hu said. I think that in Canada we're very good at discovery research. We do a lot of basic outstanding research. But the next step is to turn research discoveries into innovation. Innovation involves a lot more than just finding things; it involves transforming things into what will help patients.

I think we have to shift a little bit and try to support that kind of thing. Dr. Hu's example is a good one, but there are many others.

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

Okay. That's a great segue into the next question I have for you.

What other innovations are occurring in the treatment of Parkinson's disease that relate to therapeutic brain stimulation?

[Dr. Bin Hu]

We do a fair bit of basic research on deep brain stimulation.

One of the remarkable advances in research related to this issue is using light to stimulate the brain. You have an electric pacemaker. Now you can transform the cells by introducing a particular gene that builds ion channels, and you shed light on those cells. You can selectively stimulate only one type of cell and not the other. It's very selective. It has been used in animal models to replace deep brain stimulation. So there's hope to do it.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Hu.

We'll now go to Dr. Morin.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

I want to thank you very much for all of the research you do in order to improve conditions for Canadians living with Parkinson's disease, as well as the lives of their family.

My question is for Ms. Gordon.

Ms. Gordon, you said in your presentation that by 2030, the number of Canadians with Parkinson's will double, and will be close to 200,000 people. That figure tells me that there will be a lot of pressure on caregivers, on families. My question is about that, especially since you mentioned that when the disease progresses, these families become increasingly impoverished. In your presentation, you even talked about tax credits for caregivers, and other tax measures which the government offers these families to help them.

Are the federal tax measures sufficiently generous for low-income or middle-income families? In your opinion, are the eligibility criteria flexible enough for those families?

[Joyce Gordon]

In answer to your question, I don't think the support is adequate, and I can give you a couple of current examples if that would be helpful.

With the population doubling, as you pointed out, that's going to be a challenge to manage. We have a number of individuals who contintue to tell me how difficult it is, from a federal perspective, to get CPP, disability, or access and to be able to apply the means to justify staying on the CPP. As we mentioned, Parkinson's is a chronic, progressive, debilitating condition. When you have it sometimes you can appear to be well, and other times it's going to progress and get worse.

I think it has to be made easier for people to gain access to it and stay on it. There is obviously the question of incremental value so people can maybe look at other supports through caregiver respite or EI opportunities. I think there's a need for families to be able to have some relief from care, because it is very stressful for individuals who are doing it around the clock and who don't have the means. They may not even have enough food.

I know some of these are provincial issues, but I think at the federal level it is about the basic income that individuals can receive monthly to help them live at a certain standard of living, to pay their rent, to pay for those basic things that will provide....

The other part—and I know this is also a provincial issue—is around the balance of medications across the country. It becomes federal, in relation to caregivers, when you consider whether people across this country can get access to the best medications through the common drug review process to ensure that they can have the best quality of living while they have Parkinson's. Managing their Parkinson's well can actually allay and offset some of the caregiver issues.

That is also related to what therapeutics are available federally and provincially. I think there has to be a balance between good therapy and good primary care support. As well, caregivers need to get basic income not only to pay basic needs but also to have a quality of life that will allow them to on one hand get support and on the other to live life fully each day.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Thank you for your answer.

I might like to obtain more information on the current tax credit for caregivers. A lot of families whose income is very low cannot benefit from that tax credit. Would you agree that this should instead be a benefit paid to caregivers?

[Joyce Gordon]

I would agree with that, and I think we need to do more work on that.

We work with the MS Society looking at income security for people with neurological conditions, so we'll come forward. In our last presentation we actually recommended six financial considerations. I can forward those to you if that would be helpful.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Can you send them to the clerk?

[Joyce Gordon]

I'll forward them to the chair.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Good.

Lastly, you talked about the national brain strategy. What would be the next steps to implementing that in Canada?

[Joyce Gordon]

First we need the results of the study Dr. Krewski talked about. That information will provide the pathway to what we need for funding. The next step would be to take that report and to be able to look at what's required across this country to support the key findings. I'm hoping that will be the case in 2013-14.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Thank you very much.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Morin.

Thank you, Mr. Strahl, for allowing me to ask a couple of questions. I really appreciate it, and I will time myself very carefully.

That being said, this has been a most insightful morning.

I'm really looking forward to that study in March 2013, Dr. Krewski. I do hope the findings will be readily available.

Also, very practically speaking, I'm going to pick up on what Ms. Block was talking about. We learn a great deal from the experience of someone who has gone through the disease. You were talking about that brain surgery, and I was astounded to hear you say that it's relatively run-of-the-mill surgery, because a lot of people are afraid of it. Could you comment on that, Mr. Simmonds?

[David Simmonds]

Without meaning to be melodramatic, it's a six-hour-long surgery while you're fully conscious. I think the notion of the brain being drilled and sawed into is kind of a frightening one, especially when you have a steel frame attached to your head, and there are holes drilled into your skull to keep your head in place.

That being said, the surgery has been done at many institutions for over ten years now, and I don't think the surgeons who do the surgery would say that it's particularly high risk. I think it's more a question of the patient's willingness to swallow the image.

The follow-up to the surgery is almost as important as or more important than the surgery. The surgery really just gives you the key to the door. The setting of the equipment to give the right mixture of electrical impulses in the right direction in the body is very sensitive. It took me six to twelve months before I felt the surgery had actually benefited me directly because of the fineness of the adjustment of the machinery, the electrodes that go into your....

[The Chair, Conservative, Joy Smith]

You speak and move extremely well and you're a bright person, so what you say is very credible. Thank you for sharing that.

The other question I have is for Dr. Fon. You said that sleep patterns change drastically and that if this were examined scientifically there might be some red flags, causing you to test whether that person has potential to have Parkinson's. What do you mean by sleep patterns? How are they different? What happens?

[Dr. Edward Fon]

I was alluding to a specific kind of sleep disorder. Normally, when we're sleeping there's a part of our sleep where we have these vivid dreams; it's called REM sleep. We've all had these dreams where we're running away from people, or falling—

[The Chair, Conservative, Joy Smith]

I have them frequently, Dr. Fon; they're called nightmares.

[Dr. Edward Fon]

The body has a way to protect you when you have dreams; it paralyzes you. Otherwise, what happens in these patients is that the system fails. So when they're dreaming they're running away, they're moving around, thrashing around. Sometimes they injure themselves and fall out of bed, sometimes they injure their partners. This is called REM sleep behaviour disorder. It's not that common, but what's amazing about this discovery is that half the people who have this disorder turn out to develop Parkinson's disease in the next ten years or so. That's an enormous percentage. This is something we've learned only in the last few years.

What this tells you is two important things. First, it's not only the part of the brain we thought that's affected in Parkinson's disease—it's probably much more widespread. There are other centres in the brain that are affected, and they are affected earlier than the movement centres. Second, it gives you the potential to identify these people early. They could be candidates, if there are new treatments that come along, to get at the disease before 70% or 80% of the neurons have degenerated.

[The Chair, Conservative, Joy Smith]

That is profound. I was talking to a Parkinson's patient who said that early on she had dreams that felt like she was right there, like it wasn't a dream. Is that what you're talking about?

[Dr. Edward Fon]

That could be part of it, but it's mostly the failure to be paralyzed during these vivid dreams. It's like living out your dreams literally.

[The Chair, Conservative, Joy Smith]

Yes, so they get caught when they run away.

[Dr. Edward Fon]

That's right.