Evidence of meeting #12 for Subcommittee on Neurological Disease in the 40th Parliament, 3rd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parkinson's.
A recording is available from Parliament.
As an Individual
From my end of it, to have something like that covered would be phenomenal. Right now my drugs are covered through my benefit package, but to have something like that covered would be phenomenal.
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
I can only support that.
I'll just say that I had never met Mr. McGinnis before this morning, and as I watched him walking down the stairs, I thought, “He needs some Botox”. You may have seen the startle on my face when he said that he normally would be getting it but that the funding to support it has run out. I'm absolutely appalled.
I understand there's a balance between expensive new drugs, and that this is not entirely affordable, but it's also not right for people with chronic diseases to not have access to powerful and potentially helpful therapies. We need to be careful, diligent, and responsible in managing those resources. I fully understand that.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
On that note, do you find there's an ignorance on the part of governments about the need for a quality of life and providing those necessities? Is it like a failure to provide the necessities of life?
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
Well, in my view it is, and medication is only one part of that. For me, the other very important part is multidisciplinary care. Physiotherapists, social workers, nurses, occupational therapists, speech language pathologists--these people may provide more useful input to people with Parkinson's than we do, or at least different input, that's extremely valuable, and the funding for that is simply non-existent.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
This is basically what we've been hearing at the HHR study that we've been doing with respect to how to better the health care system in Canada, and I think this basically ties into it.
Conservative
Scientist, Neuroscience, Ottawa Hospital Research Institute
I just wanted to say that this doesn't even stop there, because people with Parkinson's also may have bladder function problems or orthopedic problems or dystonia that may need a tendon release. I can't get a urology appointment for my patients. I get physiotherapy appointments rejected because they're only good for a week and the disease is not going to be cured or the condition is not going to be cured in a week. And to get a hold of an orthopedic appointment is next to impossible as well.
So this is a multidisciplinary problem where we'd love to rally the troops and different resources to maximize what a patient can do at home to be independent, fully independent, and we don't have those resources.
President and Chief Executive Officer, Parkinson Society Canada
I'd just like to say that we'd also like to see a range of therapeutic products available to people with Parkinson's, because there are some decisions made where there's only one in a class, and another product that would come forward, that would be beneficial to individuals who might not respond to that one particular drug, the individuals cannot get.
There needs to be a view to having more therapeutic options available so that clinicians can have an opportunity to look for the best fit in terms of pharmacological intervention that works best for the individual.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
There was a comment made with regard to research funding. I'm just wondering how much was actually cut back and the impact that this has had.
Dr. Stoessl, you're the one who mentioned that.
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
I can't give you the dollar amount, but I think you're aware of the CIHR budget constraints. In an attempt to try to fund more researchers, which was an understandable aim, the individual dollar amounts have been cut back. But perhaps most importantly, from my perspective, the team program has essentially been eliminated.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
How much of a setback is that for...if you were to say timelines?
Professor, Head of Neurology, Director, Pacific Parkinson's Research Centre, Canada Research Chair in Parkinson's Disease, University of British Columbia
For my program, enormous.
Scientist, Neuroscience, Ottawa Hospital Research Institute
There was, for instance, an effort that was initiated through a Parkinson's alliance two years ago, where several researchers, two in Ottawa and then team members elsewhere, tried to put forward an application for a national centre of excellence. This would have actually been a major milestone event to make teams collaborate and share data as soon as it becomes available and not wait for the year two until it's publicized or published in the literature. So this was an opportunity that couldn't be utilized. Essentially the application was denied: (a) there was not enough funding there, and (b), it wasn't felt that PD, Parkinson's disease, was a priority at that time.
What these setbacks mean is that vital communication and vital collaboration cannot move forward. Sometimes it's a small seed program, a small idea. We today do not know what will ultimately cure Parkinson's disease, so we need to support a lot of high-risk and low-risk programs, big collaborative efforts and small graduate student fellowship programs. We have to essentially come up with a multidisciplinary but also multidimensional approach to find the needle in the haystack that will ultimately change the game, as it did with the discovery of how cholesterol was being handled.
November 16th, 2010 / 9:50 a.m.
Conservative
Conservative
Patrick Brown Conservative Barrie, ON
Thank you, Madam Chair.
Thank you to all the witnesses today. We certainly have some excellent guests here today.
Joyce, if may I mention it at the outset, it's great, the lead you've taken on the neurological charities with Shannon. I think having that common voice has been so helpful as we look at neurological disorders.
Greg, you've certainly been an inspiration in Simcoe County for all the advocacy and fundraising you've done. We're so fortunate to have you here today, because I think you put it all into context about how insidious this disease is. Certainly your message is inspiring to certainly motivate anyone who hears your message that there must be a means to do more, that there must be a means to try to grapple with this in some form. So thank you for sharing; I know how difficult that may have been.
A few things that you mentioned that I found interesting, as Carol mentioned, were about the drug plan being capped out. Is that something that you believe is common with Parkinson's patients? And are there other limitations with your drug plan and coverage?
As an Individual
I don't know if it would be common with other Parkinson's patients. I guess each company benefit program is different.
I was lucky with mine. I have an unlimited amount of drug coverage, but my wife, on her plan, only has $3,000. To get the Botox formula this time around would have cost us about $700, and with what we bring in right now, with my funds that come in, I can't justify putting my family in a bit of hardship just because I need the Botox.
Conservative
Conservative
Patrick Brown Conservative Barrie, ON
I can't imagine the straits someone would be in if they didn't have that. That's certainly interesting to know, because when we've looked at this, we haven't really looked at the lack of totality in terms of the drug coverage. That's something very interesting, I think, for the committee to hear.
Joyce, you had a comment there too?
President and Chief Executive Officer, Parkinson Society Canada
Madam Chair, may I?
President and Chief Executive Officer, Parkinson Society Canada
Parkinson Society Canada has been contacted by individuals who have notified their employer that they had Parkinson's only to find a very short time later that they were without a job. They were either laid off or there was a restructuring. They end up without any plan such as Greg's, and they have to rely--specifically in Ontario--on the Trillium program, if they're under 65, and on the drug benefit plan if they're over 65. Therefore they are significantly limited in what they can afford.
We talked earlier about discrimination and some of the things that happen in the workplace. If you're fortunate enough to have the kind of plan you have, there is support. And even those are being cut back in the types.... I talked with Greg about the Botox treatment, and what he's experiencing now is just unacceptable. But somebody who would be on a government plan, the benefit plan in the province, would not even have access to that and would be relegated to an extremely poor quality of life.
Conservative
Patrick Brown Conservative Barrie, ON
Michael, you had mentioned Alzheimer's as well and some of the commonalities. I'm curious about that, because as we look at the national strategy on the brain, obviously the hope at the beginning, I think, was that we could find areas in which to invest in order to help all these neurological disorders.
What type of research do you think is available, and what possibilities exist? It's always interesting to hear what possibilities would be available if the research could be funded in a much larger context. What research studies might cross both areas?
Scientist, Neuroscience, Ottawa Hospital Research Institute
I can give you one very specific example of how research in Alzheimer's disease has completely changed the game for research in Parkinson's. The genetic revolution in Alzheimer's began 10 years before it began in Parkinson's, so they had a leg-up. And the disease is four times as common as is Parkinson's.
A specific example is what happened through an effort initiated by the U.S. Congress in a program called ADNI, the Alzheimer's disease neuroimaging effort, which brought together people from the pharmaceutical industry interested in developing new drugs, imaging people, and people who understand the analysis of biological fluid, such as spinal fluid or blood, to come up with better measures of who has that disease, who is in what stage of the disease, and how we can get X-ray analysis.
What ADNI did, as a consortium of industry and academia, was set new rules. One of the rules, which is wonderful, is that every single data point that's being generated through this effort has to immediately be made publicly available so that people can access it. So that's now being copied for Parkinson's disease through an initiative that's called PPMI, progressive Parkinson's markers initiative, funded through the Michael J. Fox Foundation.
The second thing that happened with that is that the quality assurance and the quality-control elements that went into this Alzheimer's research are now also being adopted in Parkinson's research. So the research that Dr. Stoessl does in Vancouver can be directly compared to what is being done in Ottawa or in Göttingen, Germany, or in Uppsala, Sweden, so that we don't have the reproducibility difficulty or the unified data analysis difficulty. Everything is now done according to very strictly defined principles, and we in Parkinson's disease research have learned how to do it from Alzheimer's disease researchers.
Another thing we learned is more about disease progression and the opportunities we have due to changes in X-rays. For instance, in the imaging of Alzheimer's disease, we are trying to get a picture of the culprit, the amyloid buildup in the brain. Last week we had we had a large meeting in New York and then another one in San Diego, at which people from industry and researchers of Alzheimer's disease and Parkinson's disease sat together and discussed how we could come up with the right X-ray analysis or brain analysis to image the difficulty that Greg has in his brain so that we have better X-rays and we can follow the disease course and make the diagnosis better and see whether that person responds to a new drug, yes or no.
The overlap and the cross-fertilization and the cross-information opportunities are unbelievable. So national strategies that encompass diseases such as ALS, Alzheimer's, and Parkinson's in which there are a lot of similarities--because sticky proteins build up in the brain--are fantastic.
And this is really exciting, because it also changed the game for how academia acts. In the past, and particularly in the United States, to be promoted you had to be the best and beat everybody else to the finish line in making a discovery. Now Canada has taken a lead on this, and they realize that team science is better than individual science, so we have to reward and recognize a team leader, like Dr. Stoessl, who led a fantastic consortium in a number of research arenas. That has to be rewarded as a major significant contribution, and it should help people to advance their career interests.
So a lot of things have changed, and Alzheimer's disease has told us what to do and has often told us what not to do.
