Subcommittee on Neurological Disease Committee on Nov. 16th, 2010

[Patrick Brown, Conservative, Barrie, ON]

I'm glad you pointed to the examples in the U.S., in New York. Are there other countries that Canada should look to that are doing exciting work in Parkinson's research? Are there areas that we can learn from?

[Dr. Michael Schlossmacher]

I liked one example in particular in Germany, and not just because I grew up next door. But with Parkinson's disease, if you live in Canada or the United States, you will never be admitted to a hospital unless you have severe pneumonia or you have a hip fracture and need acute care.

There are a few centres in Germany that actually admit people for one week with Alzheimer's or Parkinson's and give them the entire workout to make sure the diagnosis is as good as it can be, that the support and ancillary services are initiated immediately, and that all the diagnostic elements and treatments, from occupational therapy to drug therapy, are all put in place.

An in-patient stay per 24 hours is of course expensive, but they've done some cost analysis and realized that the more effort they put in at the get-go, the outcome is better and the utilization of health resources can actually be diminished by doing it right at the very beginning.

[The Chair, Conservative, Joy Smith]

Thank you.

If the committee would permit me, I'd like to ask a question right now.

What is the difference between Parkinson's and essential tremors? I've seen people who have very pronounced essential tremors. People assume they have Parkinson's when they don't, they have essential tremors. What is that?

[Dr. Jon Stoessl]

Mostly, essential tremor is a condition that's poorly understood but results in tremor without the other problems that are associated with Parkinson's. The basis for essential tremor is not well understood. There is currently some controversy as to whether it may be associated with pathological changes in the brain, including, to a milder degree, some similar to those seen in Parkinson's. Although it can be a very difficult and embarrassing disorder, I would say it's a more benign disorder.

You're well aware of history, that Prime Minister Diefenbaker had essential tremor, and Katharine Hepburn, but it doesn't produce the slowness, poverty of movement, and the other problems associated with Parkinson's.

[The Chair, Conservative, Joy Smith]

Thank you.

We'll now go to our second round, five minutes.

At 10:30 a.m., we are going to bring to a close this part of our presentation because we do have to discuss Dr. Duncan's report as a committee. I'm going to be a little tighter on the time to get as many questions in as I can.

It's five minutes of Q and A, starting with Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thanks, Madam Chair.

Several of you have mentioned care teams. I'm wondering if you can talk about what an ideal care team would look like, including specialists, including working with the patients' families. Can there be something different the federal government is doing to fund those care teams? Also, can you talk about the wait times for the various specialists, and how that might vary across the country, and what that means to a family?

[Dr. Jon Stoessl]

You've heard from me what I think are the necessary components of a care team, and I think Michael would have expanded that to include other specialists. For me, it is also very important to have psychiatric care incorporated.

In fact, we're trying that at the University of British Columbia. We have a new centre for brain health that's in the planning stages with architects to combine psychiatry, neurology, and rehabilitation, both from a clinical and scientific perspective, because we feel the cross-fertilization is critical.

Waiting lists vary quite a bit. One of the problems is that much of the specialized care comes in urban centres, where people have university appointments and academic appointments, so there's an expectation that they're doing other things besides delivering patient care.

In my case, although theoretically I spend 20% of my time seeing patients, it's of course more than 20% of a 48-hour work week for sure, and my waiting list is well over a year. And that's seeing people in follow-up once a year.

We try to accommodate that by doing a lot of telephone coverage. Our nurses provide advice and I then review that advice. Apart from the fact that this is all unfunded, it doesn't work as well as it should. There are other centres that I'm sure do a better job of it, but we're trying to deal with a problem that's bigger than we can really handle.

[Joyce Gordon]

I would like to suggest that there should be consideration to having neurological centres. There are several centres in ALS, MS, Parkinson's, that aren't connected and may not even be in the same location, that could come together and share the multidisciplinary expertise where there may be some specifics to one condition that might need a different cadre of individuals, but could be housed within an area in which you could have that benefit of synergy and best use of resources for more conditions than, say, Parkinson's. I know that happens in existing communities, but we know of many where they stand in isolation.

I think if those were pulled together, we could see better efficiencies for the person who has the condition but also for the service providers in making best use of resources.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you.

You've briefly touched on the issue of loss of income—going from $50,000 or $60,000 down to $20,000—and what that does to a family, and not being able to pay for much-needed medicine. We've also heard about this with ALS.

Ms. Gordon, I wonder if you can talk about Parkinson's disease and loss of income and poverty.

[Joyce Gordon]

You've heard from Greg the impact on him. I'd like to table with you—I don't want to spend a lot of time on them here—six recommendations. I could tell you quickly a couple of them. Really, we would like to see an advisory committee that would look at income reform. We have a number of suggestions that I can leave for the committee. I don't want to take up the time, because I know you have only five minutes, but I'm very happy to share and further discuss that with you. This is also shared with the MS Society. We're part of the group that's looking at income security together.

So it is about CPP benefits, the disability tax credit, how we can better address the caregiver, and so on. It's a package that bridges a number of the things you've heard from all of us today.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Okay.

I'll come back one more time to Dr. Stoessl. If you could give us your top five research asks, what would they be? And could you outline how much money would really be involved?

[Dr. Jon Stoessl]

I think, again, it's collaborative: Mr. Brown asked about other countries, and I just want to emphasize that there are, of course, many other countries doing work. We are always looking at collaborations. I'm going to a meeting next week in Montreal that is trying to bring together German and British medical research council people, looking at imaging neurodegeneration, together with Canadian. We bring in people from many countries for our own studies.

So funding for those collaborative things, for networks across the country, and funding for teams, are the biggest priorities. As to the specifics of what they do, it will be genetic research, genomic-based research, imaging research—a self-serving response—and, I would say, cell death biomarker.

I was very glad that Michael brought up the example of biomarkers, both fluid and imaging function in that role, mechanisms on cell death, pathways. Canada has strengths in all of these, but it's difficult to combine them all in one centre. We could either expand the centres or enhance collaboration between existing centres, with infrastructure to handle the information, because it's almost impossible to do, otherwise.

[The Chair, Conservative, Joy Smith]

Thank you, Dr. Stoessl.

Would you mind, committee, if I asked one more question? Sorry, I don't usually do this.

Is that okay with you? Thank you.

First, have you presented this...? When I listen to what you're saying, I think, “Federal jurisdiction: we could do this. Provincial jurisdiction: can't touch it.” So I don't want you to be under the false impression that you can simply give us your grocery list of everything you want--and we want--because there are limitations between provincial and federal jurisdictions. That's reality.

So have you presented to the health ministers in the provinces as well? And do you know the difference between what is federal jurisdiction and what is provincial jurisdiction? Because that's how you get things done, right?

Ms. Gordon.

[Joyce Gordon]

Absolutely. You have Jon from British Columbia here, who knows the provincial jurisdiction really well, as many of our colleagues do.

We realize that today we've kind of slipped back and forth between them.

[The Chair, Conservative, Joy Smith]

That's okay.

[Joyce Gordon]

We really recognize, though, that the issues we raise also have federal mandate and influence with the provinces and territories through the FTP process. We were hoping that in terms of our working with provinces, that could percolate up, and also that the federal government could give leadership to those that could affect all Canadians in all those jurisdictions. Inasmuch as they slip back and forth, there are pieces--I just look at the disability tax credit--that are both federal and provincial. There are things that overlap.

So thank you for that reminder; we tend to move in that direction, because it's where we live.

[The Chair, Conservative, Joy Smith]

Okay.

Go ahead, Dr. Stoessl.

[Dr. Jon Stoessl]

Thanks.

Just briefly, yes, of course we have gone to provincial governments. Parkinson Society British Columbia is constantly engaged with the provincial government.

There are a couple of things here. One is that I'm responsible for delivery of neurological care, and not just for Parkinson's. So I see my programs in MS and ALS and Alzheimer's disease struggling with the same problems. I think we would all be better served at the provincial level if there were a coalition for neurological disease advocating at the provincial level as well as nationally.

I did have another point that I wanted to make, but....

It's the middle of the night for me.

[Voices]

Oh, oh!

[Dr. Jon Stoessl]

Oh, right: you raised the question about the national drug program. That's an example of where I think federal direction can help. Each province has a drug program, and people are covered to varying degrees, but the specifics vary from one province to another. If there were a federal program that set out expectations, that would be enormously helpful.

[The Chair, Conservative, Joy Smith]

Ms. Gordon.

[Joyce Gordon]

I have one other point. In Ontario, we've worked in a parallel process with the neurological health charities, and there is an Ontario brain strategy that parallels the national brain strategy. That has been extremely effective in terms of Ontario government investment. Yesterday there was an announcement about one of the pillars of the Ontario Brain Institute.

So we're beginning to see results, and other provinces are very interested in moving there.

[The Chair, Conservative, Joy Smith]

Thank you.

We'll go to Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

I have a question for Greg.

I know that you have been doing some volunteer work with the Fox foundation. You were telling me about it a little bit last year. That's what your golf tournament was raising funds toward. Are there any projects they are undertaking in Canada? There was talk that they might be doing something. Has that ever materialized?

[Greg McGinnis]

They just celebrated their first year here in Canada. As far as what they are doing, I couldn't answer that. The contact I have with them is more with Team Fox, and that's on the organization and planning of golf tournaments and getting supplies from them. I talked to them to see if we could get some initiatives going. They don't do that type of awareness. They're more for research, so anything I send to them would go right to research.

In terms of talking to the actual foundation to see what's going on, I haven't done that aspect of it.