Evidence of meeting #40 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was disease.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

  • Bin Hu  Professor, Department of Clinical Neurosciences, University of Calgary, As an Individual
  • David Simmonds  As an Individual
  • Joyce Gordon  President and Chief Executive Officer, Parkinson Society Canada
  • Edward Fon  Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada
  • Daniel Krewski  Professor and Director, R. Samuel McLaughlin Centre for Population Health Risk Assessment, Institute of Population Health, University of Ottawa

10:10 a.m.

Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada

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.

10:10 a.m.

Conservative

The Chair 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?

10:10 a.m.

Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada

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.

10:10 a.m.

Conservative

The Chair Joy Smith

Yes, so they get caught when they run away.

10:10 a.m.

Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada

Dr. Edward Fon

That's right.

10:10 a.m.

Conservative

The Chair Joy Smith

I see.

Dr. Krewski, does that encompass some of the possible prevention of Parkinson's? As Dr. Fon said, if we knew about this before everything was damaged in the brain, we could do a lot of good things so people wouldn't have to go through what Mr. Simmonds went through. Does your study encompass that?

10:15 a.m.

Professor and Director, R. Samuel McLaughlin Centre for Population Health Risk Assessment, Institute of Population Health, University of Ottawa

Prof. Daniel Krewski

We'll be able to tell you what is known about the causes of Parkinson's, about early symptoms that may not be classical Parkinson's symptoms, about the factors of active aggression. All of those pieces of knowledge are going to be key to designing proper treatments and therapies.

I wonder if I could take ten seconds to make one comment on personalized medicine.

10:15 a.m.

Conservative

The Chair Joy Smith

Yes.

10:15 a.m.

Professor and Director, R. Samuel McLaughlin Centre for Population Health Risk Assessment, Institute of Population Health, University of Ottawa

Prof. Daniel Krewski

One of our big interests in the McLaughlin Centre—and I want to thank R. Samuel McLaughlin for the generous donation that created our centre 12 years ago—is drug safety, efficacy, use, and communication. We're looking at drugs, their effectiveness, adverse health outcomes, and whether people follow the dosing regimes.

Looking at these large population-based databases, I mentioned this cohort of 35 million patients we're working with in the U.S. We can look at what factors affect outcomes that may determine whether a drug is effective for an individual patient. These would include factors like pre-existing health conditions. Renal disease, for example, might affect treatment of certain conditions, so might genetic characteristics or lifestyle factors. So we end up being able to define which patient will respond to which treatment, and which treatment may actually be risky. I was interviewed by a British clinical journal a month ago about our work in this area, and I think this is really going to be a way of the future. We will be looking at large databases where you understand everything about the patient's health profile, lifestyle, polypharmacy, comorbidity, and you work towards using that information to define more effective personalized medicine.

10:15 a.m.

Conservative

The Chair Joy Smith

We're very excited about this study and March 2013 is indelibly printed on my brain. So thank you.

We'll now go to Madame Papillon. Welcome to our committee.

10:15 a.m.

NDP

Annick Papillon Québec, QC

Thank you very much.

How much time do I have?

10:15 a.m.

Conservative

The Chair Joy Smith

You have five minutes.

April 26th, 2012 / 10:15 a.m.

NDP

Annick Papillon Québec, QC

Thank you very much.

Thank you very much to all of you for having come here. Your presentations on various aspects were really very interesting.

I am a member from Quebec, and I met with some Parkinson Society representatives less than two weeks ago, and they explained some of the issues you have been discussing. It will be my pleasure to talk about them again.

There are various things that need to be improved. There will be a conference in two weeks on the topic of being physically active in order to have a better life, and its purpose will be to explain all of the benefits of physical exercise for those who suffer from this disease. There is the story of a Quebec man who has Parkinson's disease; he is a teacher in a CEGEP. When he is having a crisis, he finds a partner and starts to dance, because if he dances for five minutes, this allows him to keep his mobility and stay in shape. That is interesting.

One of the problems the organization said it had is that it only manages to reach some 500 of the 3,000 or so people who are living with the disease. Do you have any recommendations to make to us that might help to dispel the stigma around this disease, allow people who are living with it to access services more easily, and also allow them to talk about it?

10:15 a.m.

Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, Montreal Neurological Institute, McGill University; Parkinson Society Canada

Dr. Edward Fon

In our clinic, when we see patients, we always give them all of the necessary information to communicate with Parkinson Society Canada and the one in Quebec. And so the information exists, but as you say, a lot of people prefer to keep things to themselves. And so there is a gap between what is offered and the way in which people deal with the disease.

For a lot of people, there is the stigmatization aspect you referred to. People feel stigmatized and prefer to isolate themselves. And so we regularly organize events such as the ones you have described, at least twice a year, to which we invite patients and their caregivers. I agree that the caregivers are absolutely crucial for the people suffering from this disease. A large part of the burden is taken on by the family caregiver. And I agree with you entirely—we have to find a way of destigmatizing the disease.

Moreover, one of the strategies we adopt, as do many other centres, is a very multidisciplinary approach. When patients come to see us, they are not only seen by a doctor, but also by a nurse, an occupational therapist and a social worker. This raises awareness and allows people to find out what the milieu offers to patients.

10:20 a.m.

NDP

Annick Papillon Québec, QC

That is interesting.

You also talked about basic research, and you got my attention there, since there is often a debate around basic research and applied research. It is true that both types of research have different objectives, but they both have their raison d'être, in my opinion. I know that at this time basic research is being called into question a great deal. For your part, you stated that an important part of your successes was related to that type of research. I would like you to take the few minutes we have left to tell us why this basic research, with the success it has led to, deserves sustained funding.