Evidence of meeting #13 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.
9:50 a.m.
Conservative
The Chair Conservative Joy Smith
--then the clerk will make sure it gets to all of us.
I have to go to Ms. Boosamra now.
9:50 a.m.
Board Member, Parkinson Society Canada
Thank you once again, Madam Chair.
I have three points, and I say these from my view as a caregiver. I think my pipe dream for Parkinson's, if there is one, is that it be identified as a chronic disease, the same as heart disease, diabetes, and those types of things.
I would like to see more funding for care in the home. My biggest regret is that my husband had to pass away in a nursing home. So I echo Mr. Sherwood's view on that: palliative care in the home is what everyone wants.
I would like to see more opportunities for families to take advantage of respite care. By that I mean respite care where the care home or the care facility is very familiar with Parkinson's disease and the importance of getting medication on time. I know that the few times I took advantage of respite care, I could only equate it to putting your dog in a kennel and when you get your dog back it's a mess, because that's what happened every time my husband went to respite care. His medication was so upset that it took weeks to get it regulated again.
So I think respite care is a big issue, but it needs to be quality respite care.
9:55 a.m.
Conservative
The Chair Conservative Joy Smith
Great. Thank you so much.
Dr. Grimes, did you want to make a comment?
9:55 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
I will make just a couple of brief comments.
I think you've been hearing that there's no question that Parkinson's is complicated and requires the expertise of a lot of different people, and the clinics that are trying to provide the care are very patchwork in different places. There are not enough clinics, and the overall care we provide could be a lot better if more support and more expertise were involved.
The other point I'd like to make is about research. We have very strong researchers in Canada, both clinical as well as in basic science, and having a mechanism to help support those.... One of the ideas we were looking at is from a clinical research standpoint. No one clinic can test a new drug. So from a Canadian standpoint, is there a way we could look at integrating that so it's more attractive to develop those drugs in Canada?
9:55 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you.
Ms. Leslie, that was lots of time.
Now we'll go to Mr. Brown.
9:55 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
Thank you, Madam Chair.
Thank you, Mr. Grimes, for treating, as was mentioned, Greg McGinnis last week. He comes from the city of Barrie, which I have the honour of representing, and I know that meant the world to him. So thank you for your support and indulgence of his needs last week.
But I'm sure there are thousands of other individuals like Greg. I know he had his own private drug plan, and Kirsty commented on the extent to which drug plans don't meet the needs of many Parkinson's patients. That's something that we hadn't really heard before last week when it was first brought up to us by Greg.
What sense do you have that this is very common across Canada, and how many people do you think are in the same position as Greg in that their drug plans significantly don't meet their requirements?
9:55 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
I think it is very common.
Again, it's not uncommon that I see people coming into the clinic and I'm looking at, “Okay, can I add that drug on or can't I?” And maybe I can't: they can't afford it.
In Ottawa I think we're lucky that there are so many government agencies and people here, and I think more people in Ottawa have federal government drug plans. I'm sure that in many parts of the country there are a lot of people who have no private coverage for drugs, so it's even worse. I think the patients I see here are some of the better-off population. As I said, I'm sure there are lots of places in Canada where the private coverage is very much lacking. There are a lot of people who are having to make tough decisions about whether they want to start a drug that we think is the best drug or they want to start with choice C because they can afford it.
That really shouldn't be happening in Canada.
9:55 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
One thing you mentioned, Mr. Ireland, which I found interesting, was that last year you were able to fund only 16 of the 30 new research applications. One thing I've asked every time we've had different disease groups before this committee was how many good ideas are being left off the table. I like to try to put it in a fiscal context to give us an idea of what type of investment is required to really put all our hard energy into this.
For Parkinson's, I understand the CIHR last year invested $9 million, with $72 million since the year 2000. So with a $9 million investment, how many applications do you know that we're able to touch, and what percentage of them do you believe we're not able to get to? Of the ones we're not getting to, is it your sense that there are some very interesting concepts that we're not able to examine?
10 a.m.
Chair, Board of Directors, Parkinson Society Canada
From Parkinson Society Canada's peer review process, I would say there were probably 16 different projects that should have been funded, that were rated highly enough by the reviewers. How many of those, in terms of what we left on the table... That's happening every year, so there could be answers in some of those projects. People from across Canada collaborate, and the peer review process is such that we know that those projects, if we had the dollars, would have been funded.
I would say that it's millions of dollars, and I think the proposal of NHCC helps to answer some of those questions. I don't know what the percentage would be overall, but we've listened to the proposals, and it sounds as though--wow--there are some great things here that we could be looking at that we just aren't able to fund.
10 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
I heard one statistic last week, which I found interesting, which was that for many people involved in research, one-half of their time is spent simply on applications. I heard one person mention that 80% of the applications were being turned down because the pot was only so big. I think that's something important for us to get a better handle on.
Is that something you've heard as well, that there's a tremendous amount of time consumed simply by the application process?
10 a.m.
Chair, Board of Directors, Parkinson Society Canada
Absolutely. I had the opportunity of visiting one of our smaller researchers at Laval this past summer. I was overwhelmed by the small amount of space, but then we started to talk about the amount of time she spends on this. I would say that well over 80% of her time is spent trying to get applications in for research.
10 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
It's mind-boggling that the intellectual energy is used on....
10 a.m.
Chair, Board of Directors, Parkinson Society Canada
The demands for the applications are very significant. She was on our board for a while. She would come to our board meeting, and she would be up till two or three in the morning writing a proposal that was due the next day or two days from then.
So I would say the amount of time that our researchers spend doing the applications is very significant, when they could be doing a lot more around research.
10 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
On that note, I've never heard about the process for putting in an application. You mentioned it's very demanding. Could you share with us why the way it's currently set up is so time-intensive?
10 a.m.
Chair, Board of Directors, Parkinson Society Canada
From a Parkinson's perspective, and that's probably the best one I can share with you, the researcher has a time limit in which she or he has to submit the documentation, put it all together, and then our researchers come two at a time to review all these proposals, and they do it on their volunteer time. They review them, then they come together and spend a whole day in Toronto continuing to review them and rating them, and trying to get to where they can at least fund a proportion of them.
Because there are so many applications--and I learned this from the researcher at Laval--they're constantly going after funding because the dollars aren't there unless they get the research funding. The hospitals are taking a large proportion of their dollars in terms of the rent and all those sorts of things, so she spends a lot of time just writing proposals to get the dollars to be able to carry on with her research.
10 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
Is there an example you could share with the committee of the type of research project you weren't able to undertake because of all the details?
10 a.m.
Chair, Board of Directors, Parkinson Society Canada
I honestly can't help you with that. There are so many of them that it would be difficult. We could probably put one together and give you an idea of the kind of thing we didn't fund, but to answer that question, it would be difficult.
10 a.m.
Associate Professor, Ottawa Hospital, University of Ottawa
Yes. We've tried a couple of times to put in....
Parkinson Society Canada is great in terms of trying to fund projects, but the projects they fund are still not considered big projects. You go through $100,000 pretty quickly when you're trying to do things, when one post-doc is costing you $45,000 in your lab and you haven't even paid for reagents for them to do any experiments.
I think the success rate last year was 16% or 17% for the bigger projects we look at through the CIHR. Those are 20-page, 30-page applications. We've had a couple of tries at trying to put a Parkinson's one together. It was a big national collaborative effort, and we have not been successful in trying to bring all the different researchers together and trying to come up with a better national effort for bringing all the researchers together.