Evidence of meeting #3 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 research.
A recording is available from Parliament.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Have you ever talked to employers, to try and understand their concerns about hiring someone with multiple sclerosis, for example?
Representative, Social action and government relations for Quebec Division, Multiple Sclerosis Society of Canada
I have spoken to physicians who deal with headhunter firms or placement agencies. I have been interviewed by potential employers, who told me they would call me back. When they did not call back, I called them to find out what was going on. They said that they had selected another candidate. There is always another candidate.
Is it because the other candidate was better than me? I don't know; I just don't know. For 25 years now, there has always been another candidate.
Bloc
Luc Malo Bloc Verchères—Les Patriotes, QC
Thank you.
Mr. Savoie, when you talk about funding for research, what are you basing yourself on to say that more funding should be devoted to research on multiple sclerosis, when there may be other diseases that also require funding. So, why should money be spent for research on multiple sclerosis, as opposed to another disease?
President and Chief Executive Officer, Multiple Sclerosis Society of Canada
Thank you, Mr. Malo.
That is a very important question. The funding is for research on CCSVI, obviously in relation to multiple sclerosis. The reason why are making this request is because this is urgent. Urgent action is required. The Quebec College of Physicians is one of the organizations that has decided not to make this treatment available, out of a need and concern for more evidence of its effectiveness. But, in order to find that evidence, we need to put our foot on the accelerator. That is why I drew the parallel with nuclear isotopes. We are talking about a crisis, something that is urgently needed, and this is a matter of public interest.
With Dr. Duncan and other witnesses, there has been discussion about discrimination in relation to treatment. We are aware of that inequity, which is a glaring one. People here have talked about it as well, because they have experienced that discrimination. That is why we hope the Minister will provide the additional funding—though not in place of other significant investments in research by CIHR—and earmark it for this public interest crisis.
Conservative
NDP
Megan Leslie NDP Halifax, NS
Thank you, Madam Chair.
And thank you all very much for being here.
I actually only have two fairly quick questions, and then I may pass my time over to one of my colleagues.
I'll start with you, Mr. Savoie. First of all, I know a lot about your work on poverty issues, and the NDP has always supported your calls for a caregiver tax credit and guaranteed income and things like that.
I've been working with the Alzheimer's and dementia folks in Nova Scotia, and they've called on the Minister of Health to actually hold a summit on Alzheimer's and dementia, recognizing that this is the future of our health care system. It could collapse under the burden of the number of patients we have with Alzheimer's and dementia.
You started off by talking about how neurological diseases will be the leading cause of death. Have the different neurological disease organizations been trying to look together at calling for what you were talking about, Ms. Duncan, a brain strategy? What is happening with that?
President and Chief Executive Officer, Multiple Sclerosis Society of Canada
There are two things. One is that the initial call was very favourably responded to by the current government, with an investment of $50 million to the Public Health Agency to do research to better understand the distribution of the population. How many people are affected? What are the economic consequences of the distribution?
We don't know those data in Canada, unlike the situation with cancer or cardiovascular health. It's by coming together as a group of neurological health charities that these studies and the Public Health Agency have now focused attention on neurological diseases.
In addition, we have asked for a $2 million commitment and the partnership of the federal government to develop a national brain strategy. That request has been made. This brain strategy would have many components: genetic equity, research in neurological diseases, issues of income security, and obviously the very important issues of impacts on the family.
The caregiving impact is one of them, but there are broader impacts on family structures; one of the witnesses spoke about the rate of divorce, for instance. Those issues are very important.
NDP
Megan Leslie NDP Halifax, NS
Okay. Thank you very much. I appreciate that update.
Ms. Radley, I didn't make it to the rally on the Hill yesterday. I was tied up, but my colleague Peter Julian was there and reported back to me about what was going on.
You're here as an individual, and there were lots of folks coming together on the Hill. There is certainly a grassroots campaign happening about CCSVI, but is there a coming together as one group? Is there an organization forming that can be a conduit for us in talking about these issues, or is it still mostly individuals coming together in the beginning stages?
As an Individual
I can tell you that around the planet there are actually organizations that have come together. An organization that's across Canada now has been initiated, called MS Liberation. There is a website. Andrew Katz and Rebecca Cooney have formed this organization and in fact called for the rally yesterday. There's an incredibly active patient—
As an Individual
There's an incredibly active group of individuals, and an excellent source of information is a website called ThisIsMS.com.
NDP
NDP
Megan Leslie NDP Halifax, NS
Great. I would like to hand the time over to Ms. Duncan. She has quite a bit of passion and expertise in this area.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Before you do, I want to acknowledge the work of the MS Society and of Mr. Savoie.
While health care is provincial, the federal government has some responsibility involving aboriginal health and the armed forces, and I think the discussion of CCSVI is relevant to the entire country.
I am concerned that the MS Society is not aware of the International Union of Phlebology and its consensus document on the diagnosis and treatment of venous malformations. Data out of Buffalo shows that about 52% of MS patients show CCSVI. The initial data shows treatment relieves brain fuzziness and improves quality of life. Should we not be advocating for anything that improves quality of life? If we look at injections such as Copaxone and interferon, which cost $25,000 a year, do we see the results that we have seen with this initial work?
President and Chief Executive Officer, Multiple Sclerosis Society of Canada
I think I might suggest that the answer to the question about disease-modifying therapies be given to you by someone who uses them. My colleague Joan Ozirny, who is a volunteer, referred to DMTs earlier. The evidence is substantial, but a personal account might be more useful.
Liberal
Kirsty Duncan Liberal Etobicoke North, ON
Is it one-third, is it two-thirds, that it is reducing the attacks by?
Chair, Government and Community Relations Committee, Alberta Division, Multiple Sclerosis Society of Canada
In my history of MS I've been on three different disease-modifying therapies in order to stabilize. Generally you change when your condition is declining, and generally it's when it's declining rapidly that a neurologist would make that decision.
It's difficult to give you a broad answer, because it's different for everyone. MS is a disease that's individual, so clearly a drug or any type of disease-modifying therapy is going to interact. I think the evidence with all disease-modifying therapies shows that the old ones, which initially came to market in 1998, were about 33% effective. The last one, Tysabri, has a lot of controversy around it as well, and I have had 32 infusions of that drug. My neurologist determined that it was time to come off that drug because of the side effects that are a potential with long-term use. That drug is a very effective drug, with a 70% reduction of attacks. Of course, attacks create cumulative disability; that's basically what I'm saying.
Conservative
Conservative
Patrick Brown Conservative Barrie, ON
Thank you, Madam Chair.
I thank all the witnesses for coming today.
I've been very interested in neurological disorders as well. You have an excellent MS chapter in the city of Barrie. Jeanette Elliott =has been doing great work raising awareness about the need for combatting this very difficult disease. We have a doctor in Barrie, Sandy McDonald, who is one of the top vascular surgeons, who has been working directly on the CCSVI possibility. I know he's very excited about the possibilities there as well.
To follow up on a point that Megan Leslie mentioned first, in terms of your statement about the leading cause of death, is that something that we are anticipating we'll find out through the study?
President and Chief Executive Officer, Multiple Sclerosis Society of Canada
These are early data, but there is no question that the work through the neurological study will cement that. There are all these questions of burdens of the numbers of people, and the growth in the prevalence rates as our population ages will obviously add robustness to those data. There's no question about that.
Conservative
Patrick Brown Conservative Barrie, ON
Yes. That's certainly the powerful call to arms that you talked about. I know the “Rising Tide” report from the Alzheimer Society expressed similar concerns with an aging population. This is going to be the challenge for our country.
You also mentioned the competition we've completed...and June 14. What was that with regard to again?
