Evidence of meeting #11 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 als.
A recording is available from Parliament.
Luc Malo Bloc Verchères—Les Patriotes, QC
I have one last question, Madam Chair. And then I will turn the remaining time over to you.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Thank you very much.
One or more genes that cause this disease have been identified. Have they been identified in children? Mr. Van Loan, you said that one of your fears is that your children or grandchildren may carry such a gene. Are we already starting to see that this is detrimental for children or grandchildren who may be carrying this disease?
Board Member, Amyotrophic Lateral Sclerosis Society of Canada
Thank you.
If my children or my grandchildren carried these genes, there is a blood test that would identify that. However, that is a minefield into which I do not advocate they go at this time. We do not have protection for them against future insurance problems, in that case. There's a host of issues to be dealt with ethically and legally in this area.
Conservative
The Chair Conservative Joy Smith
Thank you, Monsieur Malo. That's an unusually short time for you.
There is the possibility that we will run out of time, Mrs. Hughes. You're sort of down at the end of the list, so Mr. Brown will graciously let you take his place. You can ask some questions now. Then we'll wrap up at 10:30.
Thank you, Mrs. Hughes.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
Thank you. I greatly appreciate your generosity of time here. Never mind that he wants something, I'm sure.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
I have a couple of comments. The first is about when it's genetic, and being able to get insurance. Some insurance coverage must be extremely difficult to get. It puts those people in precarious situations, so I can understand the comment you made with regard to youth.
There was some talk across the table about employment insurance, compassionate care, and palliative care. I sit on the palliative care and compassionate care committee. I know there are some difficulties there as well.
Do you have any suggestions as to what should be brought forward, aside from EI changes? Even with EI changes, I don't think you could get it for a very long period of time. Let's face it: this is an illness that you could need assistance with for three to five years, or maybe longer.
On compassionate care, is there something the federal government could do? I know tax credits are there, but that doesn't usually help someone with their wages for the year. Is there something else that people have in mind?
Amyotrophic Lateral Sclerosis Society of Canada
I think Nigel actually brought out already a few points that I would also highlight.
I think the EI benefits are very important, but also flexibility in that system to allow, for example in my case, my husband to maybe start with a day off work and then increase that time as the need arises.
I also very much agree with Nigel's point on bringing the different operators together. Here I'm talking about the ALS clinic that is doing a great job and the ALS Society that is doing a great job. The community care has limited resources but is an important player, and increasingly important when the disease progresses. And then there is the family doctor who often needs support to be actively involved and to deliver the care that is needed.
In Ottawa, the city does have palliative care teams. We're lucky in that way, and later on our family will have access to that. But again, it's another factor, another team that needs to come in to support us at home.
And then there is the whole emotional aspect. I still feel that we are lucky to have access to service, but many families do not. I do actually acknowledge the work that the ALS Society has done in this regard, because those were exactly the brochures that we showed to our children. There was no way of keeping them in the dark when things were moving on.
So I do think that there's this sort of coming together. We know about the Champlain district work that has been done to bring these bits and pieces together. It's exemplary, but I think that needs to also show in the field and I think that remains a challenge.
NDP
Board Member, Amyotrophic Lateral Sclerosis Society of Canada
May I add to that, Madam Chair?
At the palliative care meeting I attended, I made reference to a feeling that we're finally getting this spread out, this ethos of palliative care, and that's what it is. It's not a technique. It's not something that is different from just the whole ethical way in which you approach patients.
If there's anything that can be done at the national level, federally, it is the encouragement of the national bodies that accredit medical people such as nurses, such as social workers, such as doctors, to ensure that their curricula bring this ethos to bear in their training.
NDP
Carol Hughes NDP Algoma—Manitoulin—Kapuskasing, ON
If I have a little bit of time, I would just sent it back to Mr. Brown.
Conservative
The Chair Conservative Joy Smith
Actually, four seconds, but he gets a lot in four seconds. So do you have a question, Mr. Brown?
Conservative
The Chair Conservative Joy Smith
Okay. I would give you more than that.
Thank you very much. We want to thank you for coming today.
I'll just read out our mandate for our website:
On the 26th of March, 2009, the committee passed a motion establishing the Subcommittee on Neurological Diseases. The subcommittee has agreed to conduct a study that will focus on five diseases, including autism spectrum disorder, ALS, multiple sclerosis, Alzheimer's disease, and Parkinson's disease. Written submissions regarding neurological diseases and disorders will also be considered.
So that is the mandate for our website.
I know that we do have another committee coming in in a few minutes, but I know that some of our people just want to have a private couple of words with you. This will give you an opportunity to do that.
Mr. Van Loan, could you please table your report so we can distribute that to all the committee members?
Board Member, Amyotrophic Lateral Sclerosis Society of Canada
I'm not sure. Do you refer to this? It's unfortunately a draft version. I will make connection with your clerk to deliver both a French and an English copy to her of the final version.
Conservative
The Chair Conservative Joy Smith
Oh, that would be so nice. Yes, thank you. Thank you.
You see how anxious everybody is? They didn't forget the report. We've been listening very attentively because this is a very serious issue and we're so pleased and honoured that you share your stories with us and your knowledge and you're keeping up with absolutely everything.
Mr. Cameron, it was so good to hear some of the acknowledgement you've noticed and we sure wish you well in your research. It's extremely important.
We will dismiss for now, and thank you again.
The meeting is adjourned.
