Thank you very much, Madam Chair.
Thank you so much to the witnesses for being here today. You've provided us with an incredible wealth of information, from research to new advances, to living with Parkinson's, and to new therapies.
Dr. Hu, your information about your music program is quite incredible to hear. It seems so simple, but I know we don't know the complexities that are behind it...and trying to figure it out.
Certainly to Mr. Simmonds, thank you so much for being really frank in sharing very personal information about what it's like to live with Parkinson's. I'm sure it must be a bit daunting to come before a parliamentary committee and open up about your life. We really appreciate that you were so open and frank with us, because it does help us to understand. My father died of Parkinson's, so I have some knowledge of what the disease is like and what it means for families and caregivers. We very much appreciate the information you've provided.
I wanted to make one general comment and then I have a couple of questions.
Ms. Gordon, I think what you identified—in fact a number of you did—is the impact on families and caregivers and how serious this is. We have heard this repeatedly, and it's something that I think many of us have personal experience with as well. It's such an important question and we're not doing nearly enough to support caregivers financially in terms of respite care, whether it's through the taxation system or supports at home. I want you to know that I don't think we're doing nearly enough. We've been doing another study on chronic diseases and of course that issue surfaced there.
The questions I have, though, and you mentioned it very briefly, Ms. Gordon, when you talked about genetic discrimination.... I met with the Coalition for Genetic Fairness iseveral months ago, and it was a subject I was not familiar with. I know it's an issue for the Parkinson Society of Canada too. I wonder if you could speak a little bit more about that, especially as we get into this age of electronic health records and information sharing, databases and all of that. From what I understand, this is a huge issue where people are feeling very vulnerable about information that can be used against them by insurance companies and by workplaces. I hope you could share a little bit more about what we need to do about that. That's one question.
The other question I have is on the cost of drugs, and I would throw that out to the panel for anyone who would like to respond. In our research background we are told that a typical patient may have $1,000 in drug costs a month. We know in the health accords there was a commitment made to have at least catastrophic drug coverage. Nothing has been done. Presumably all of the folks you work with are still facing these horrendous situations of massive costs in drugs. I think it would be helpful for you to provide a little more information about that.
If we have time I'll sneak in one other question. The surgery you had, Mr. Simmonds, how common is that? Is it now widely available? Is it one of these problems where if you're lucky enough to be in the right city and get in at the right time...? I have not heard of the surgery before. I'm curious to know how available or accessible it is in Canada.