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.
10:25 a.m.
As an Individual
I would like to talk for a moment about the other side of their research agenda, which is the quality of life research for people living with Parkinson's and their caregivers. I think we are on the cusp of finding out a great deal about depression in Parkinson's and how a person's life can be made better in the time they have left through the arts, music, dance, and drama. Very interesting studies are showing that a person who is severely disabled with Parkinson's, who is given the chance to make music or paint, loses the tremor and can be engaged in that activity.
These are more program ideas and functions that can take place at a local level, but it's important that we not have a picture of a person with Parkinson's in a wheelchair; the person is functioning, and can use perhaps this way of becoming part of society again.
10:25 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you so much.
We want to take the opportunity to thank all our guests for coming. Your testimony is very meaningful, and this committee is extremely interested in everything that you have to say. You make a difference, you make a very big difference, and I want you to know that.
As chair of this committee, I have to deal with some administrative things. I am going to suspend the committee for two minutes, and I must have this committee out of here by 10:45, so I will see that we do that.
We need to attend to that business right away, but thank you so much.
I'll suspend for two minutes so that you'll have an opportunity to leave.
10:30 a.m.
Conservative
The Chair Conservative Joy Smith
We shall begin again.
We have one thing that we need to attend to, which is a notice of motion submitted by Kirsty Duncan on November 19.
Would you like to read that into the record?
10:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Yes, please. Thank you, Madam Chair.
The motion reads as follows:
That the subcommittee ask Dr. Alain Beaudet to provide, as soon as possible, an update regarding the science of chronic cerebrospinal venous insufficiency; the conclusions of the August 26, 2010, meeting; and the progress of the expert working group to date.
10:30 a.m.
Conservative
The Chair Conservative Joy Smith
Thank you. It is a very good motion.
Do we have some comments on that?
Go ahead, Mr. Brown.
10:30 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
I think that's a no-brainer. Obviously we want to have the CIHR, and I think there's a standing offer. I recall that in the summer they said they'd be willing to come in any time, so let's take them up on it.
I understand they're coming to discuss Alzheimer's already. They're already scheduled, but obviously we want to get their input on the whole matrix that we're studying, so I even wonder if we should add a day and have just a day with the CIHR. If they mean what they said in the summer, they will have no problem with that, because it was their standing offer.
10:30 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
I agree with Mr. Brown. I think it's really important we do this and I'd like to give you my reasons.
We have to look at that decision leading up to the August 26 meeting and at what evidence was weighed, what was included, and what wasn't. I know there was fear of biasing the sample, so they didn't include experts who had actually done the procedure, but we had people who had actively spoken out against it. It was a very limited focus: it was only published papers, and they did not go to the experts. They did not ask for unpublished data. They did not ask how people around the world were doing those procedures, what the safety was, or what the efficacy was.
I think it's important to find out what the doctors doing the follow-up, the neurologists, had to say. There are questions. The MS Society had been asking for $10 million for clinical trials since the spring and have stopped asking for that. There have since been three international conferences on CCSVI at which a lot of science has been presented. I've been to two of those; I chose not to go to the third because it was a week later. The expert panel is meeting for the first time today.
The last point I want to bring up is that we have got to ask questions regarding follow-up care. This is a real issue. We can't have people coming home and not getting treated. I got an e-mail last night from a mother saying they wouldn't look at her son--and then, after going to the college of physicians, being no further ahead.
Those are my reasons.
10:35 a.m.
Conservative
The Chair Conservative Joy Smith
I think we all agree, and those are very good reasons.
Monsieur Malo.
10:35 a.m.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Madam Chair, in fact, when we met with Dr. Beaudet and the other witnesses about this, we were certainly told that we would be able to get the minutes of that meeting.
So it seems to me that if we started a meeting at 8:00 a.m., for example, we would have 45 minutes to talk to Dr. Beaudet about this. We would then move on to all the other items on this subcommittee's schedule.
10:35 a.m.
Conservative
The Chair Conservative Joy Smith
Okay.
These are very good discussions. It's a very good motion, in my opinion.
First of all, are we all in favour of passing the motion...?
Yes, Mr. Brown.
10:35 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
Are we limiting this to only asking questions on MS? I'd like to ask questions of CIHR on the five--
10:35 a.m.
Conservative
The Chair Conservative Joy Smith
Can we deal, first of all, with the motion? We can add those others at the end. This is the motion as it stands.
10:35 a.m.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
I think Mr. Brown is right, maybe we need to do more with CIHR, but I really think we've got to do....
I like Mr. Malo's suggestion of maybe those 45 minutes just on the MS piece, because we've got to follow this.
Is that okay?
10:35 a.m.
Conservative
10:35 a.m.
Conservative
The Chair Conservative Joy Smith
I absolutely agree. I think everyone does agree.
Let's deal with this motion.
All in agreement with the motion?
(Motion agreed to [See Minutes of Proceedings])
Great, it's passed.
Can we do something with the CIHR piece now?
10:35 a.m.
Conservative
Patrick Brown Conservative Barrie, ON
I don't have a motion, but is there consensus that we find some time to have the CIHR here alone?
10:35 a.m.
Some hon. members
Agreed.
10:35 a.m.
Conservative
The Chair Conservative Joy Smith
Okay. Great. We've all agreed on that.
Now we have to look at the scheduling.
This is what we've done, so this is a decision we have to make. We have two presentations from Alzheimer's, then we have two presentations from autism, and then we have the break. We are now scheduled on February 1 to go to MS again. That's what our schedule looks like right now. To do anything else we'd have to bump Alzheimer's and autism.
On December 16 we have nothing, though. If we're still here on December 16, we could plug it in on December 16, which is a Thursday. What would you think of that, at 8:45 in the morning?