Subcommittee on Neurological Disease Committee on Dec. 7th, 2010

[Shannon MacDonald, Director, Policy and Partnerships, Neurological Health Charities Canada]

Thank you, Madam Chair.

I'm delighted to be with you today. I was joking earlier that it's nice to be invited up to the big table, because I've had the pleasure and privilege of observing some of your hearings and have been very moved and compelled by much of what you've heard.

I'm honoured to work on behalf of Canadians living with neurological conditions and their families. I know that members of this subcommittee really appreciate the weight of the phrase “and their families”. You've heard compelling testimony to the fact that the population impacted by neurological conditions is far greater than the five million Canadians who are actually diagnosed with a condition. Bob, this morning, has referred to ten to twelve people affected for every one person with dementia. And I don't think I'll ever get Greg McGinnis' story out of my mind. Nor do I want to.

As the NHCC lead, I also have the pleasure of co-chairing the implementation committee for the national population health study of neurological conditions. I work in partnership with the federal health portfolio and my co-chair, who's the director of chronic disease at the Public Health Agency of Canada.

I'm pleased to report to the subcommittee that the study is well under way. It will ultimately consist of survey elements led by the Public Health Agency; up to 13 research projects led by pan-Canadian teams right across the country; community-building and knowledge exchange led by the NHCC; and economic costing and micro-simulation work that will come together in the final phase of the study, which concludes in 2013.

I have provided you with a couple of copies of the newsletter Brain Matters. This is a communication piece we put out specifically about the national population health study. Some of you will have seen it previously, when it was originally circulated.

Given the testimony the subcommittee has heard to date, I thought the most value I might contribute to your study would be to share information about the NHCC's vision of a national brain strategy. I know that the concept has been raised this morning, but it has also come up in some of your other hearings. I thought it would be helpful to talk about what it could entail.

Neurological Health Charities Canada, as you know, is a growing coalition of health charities, each with a particular interest in one or more neurological conditions. We began in 2008 with just 12 members. I believe that Madam Chair was kind enough to share some remarks at the launch of the coalition that took place on Parliament Hill in June 2008.

From 12 members just two and a half years ago, we have grown to 24, with the vast majority of our membership providing service and support directly to individuals and families living with a neurological condition, and many, if not most, organizations funding innovative biomedical, clinical, and population health research.

The coalition came together with two primary objectives. The first was to generate support for a national population study, because we simply do not understand the picture of neurological conditions in Canada. I know that's part of your work and some of what you're working to uncover. We simply haven't been tracking or monitoring data that would tell us the full story.

The second objective was to really sincerely address key issues facing Canadians living with neurological conditions and thereby address some very significant issues facing Canada overall.

Our organizing principle was simple: we focus on needs, not diagnosis. We learned quickly that regardless of the condition or the name of the diagnosis, people with neurological conditions experience remarkably similar situations and needs. I know that you've heard this from other witnesses, and I'm confident that if you had all 24 organizations represented here today you would hear the same message, whether they were talking about people living with Huntington's, dystonia, epilepsy, a brain injury, or any other neurological condition.

From this position of common need, we developed the document you have before you, entitled A Brain Strategy for Canada. This document identifies seven themes that make up the framework the NHCC proposes for a national brain strategy. The issues are ones you've heard all around this table: research, prevention, integrated care and support, caregiver support, income security, genetic privacy, and public education and awareness. These themes are unanimously supported by the NHCC membership.

People are often surprised that we have been able to build such strong consensus, when you consider the number of organizations involved and the number of stakeholders represented. But I can tell you that the NHCC membership unequivocally agrees that these are the areas we must work on together to make a difference to people living with all neurological conditions in Canada.

Let me be clear: we must work together. This work requires the collective commitment of health charities, industry, and governments at all levels.

Having said that, I recognize that this subcommittee has a particular interest in what the Government of Canada might contribute to the process. We believe the Government of Canada is in the unique position to lead in four important ways: first and foremost, by acknowledging and recognizing the brain as one of Canada's most important health, economic, and social drivers; second, by investing appropriately in brain research, given the significant population affected, the massive impact that you've heard about, and the NHCC will be coming forward to the government with a proposal for a five-year public-private partnership that builds on the annual investment of donor dollars that the NHCC members currently make in neuroscience research; third, we believe the Government of Canada can demonstrate leadership by raising these issues at the appropriate federal, provincial, and territorial tables, starting with health, human resources and skills development, and finance; and fourth, we believe the government has a role to play in bringing constituents together to work on what's possible, including the health charities' industry and all levels of government.

By recognizing that provinces and territories will play an important role in any brain strategy that has a national scale, the NHCC has been working with the Ontario Ministry of Health and Long-Term Care to develop the foundation for an Ontario brain strategy that might inform a larger national project. Our hope is that this work will demonstrate the role that provinces and territories can play, in alignment with and as part of a national strategy.

In closing, I'd like to suggest that we think about a national brain strategy in a new way. As Debbie has mentioned earlier, the default position seems to be focused on cost containment and the very real need to control expenditures in an incredibly difficult economic environment. But this is more than a cost issue, and I'd like to suggest that we start talking about a brain strategy as an innovation, inclusion, and prosperity strategy. Generating knowledge, maximizing brain power, enabling independence and productivity, educating Canadians to be well, to be inclusive, and to be supportive of one another--that's what I think about when I think about a national brain strategy. It's fresh, it's emergent, it's collaborative, and it holds real potential for transformative change.

The NHCC envisions a comprehensive strategic approach that connects the collective pool of work, builds on existing programs and investments, and calls on elected representatives from all parties to work collaboratively to develop a brain strategy for Canada.

On behalf of the NHCC and all of our members that you haven't been able to hear from, thank you for your interest, for your sincere commitment to making a difference, and for the opportunity to speak with you today. I look forward to your questions.

[The Chair, Conservative, Joy Smith]

Thank you very much.

We'll now go to our seven-minute Q and A round, and we'll start with Dr. Duncan.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Madam Chair.

And thank you to all of you. Thank you for saying we need to focus on the needs, not diagnosis, and hopefully this committee will address those needs. I want to thank all of you for your science, your humanity, your caring, and your recommendations.

I had the privilege of hearing Mr. Mann before, and to hear you again--your comments touch deeply and profoundly.

And Dr. Lester, thank you for making this human.

I'm going to start with research today.

Dr. Diamond, could you comment on whether the current funding environment supports large teams of multidisciplinary research, and if not, what recommendations you would make to address this?

[Dr. Jack Diamond]

This is a recurrent theme as to how much we should support collaborative, large team efforts versus the usual, which we see in our universities and institutions, which is two or three, at most, people collaborating together. The large one, in principle, is an excellent idea. It can take a theme, which can be broader than one person or two people can handle, and it brings in a number of disciplines to attack one problem.

In Canada we have a special problem that makes this a bit more difficult to achieve, and that is that we have relatively few laboratories. It would be very easy, if we were not careful in organizing our large teams, to find that we were putting all the strength into three or four institutions in Canada; the smaller players, so to speak, would lose out. In principle, it's an excellent idea, but it has to be carefully achieved so that we don't lose the impact that the outriders can give. When I mentioned the four things that we now realize we had ignored, that's exactly the sort of thing that has happened as a consequence of the focus. So I'm not against large teams, and obviously they can do things that small teams can't, but I just ask that it be treated with some caution, because if all the money goes into the large ones, the small ones disappear.

And interestingly, so many breakthroughs have happened in small laboratories with two or three players, that are somehow missed, accidentally or whatever, by the large teams, where the focus is very strenuously directed from above.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Could you comment on the need for combined clinical programs in research and on how this could best be achieved?

[Dr. Jack Diamond]

That's a very urgent need. Right now the clinical and the basic research are, and always have been, traditionally, rather separate. For example, we have animal models of Alzheimer's disease. They're not perfect models of Alzheimer's disease, but they do replicate some of the conditions. They're actually mice that have had injected into them the human gene for familial Alzheimer's disease, and they end up with a sort of a mouse Alzheimer's disease. Before we can try any drug clinically, it has to be shown to work on the animal model. So this, in a sense, addresses what you're saying. What has happened is they've produced, on the basis of good solid scientific reasoning, a drug that ought to work, for example, in stopping the production of this suspect protein. It worked on the animals fine, and they took it to the humans and it didn't work. This has happened about four or five times with very exciting prospects. As soon as they went from the animal to the human, they failed.

Here we have a reason for having the basic scientists and the clinical people work together. I'm a basic researcher, although I understand the clinical side of it as well, and it's hard to see why it worked on the animals and it didn't work on the humans. We have some good ideas now, but they're not ideas that have been generated very much as a consequence of collaboration between clinical and basic. We do actually need to foster that. I don't know exactly in what form it can be promoted, but the idea that we must get them together should be very much promoted. In fact it would be nice if there were certain initiatives that would be allowed only if basic and clinical researchers worked together. We don't have that.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you, Dr. Diamond.

Mr. Mann and Dr. Lester, I'd like to hear from you about increasing awareness and education to reduce stigma. What recommendations would you make to this committee around awareness and education to reduce stigma?

[Dr. Robert Lester]

Let me just start, because as I indicated to you, I'm a physician. I totally missed my wife's diagnosis, and it was only caught because I developed a very temporary neurological problem that brought me to the attention of a neurologist; he then recognized, as I was coming out of my problem, that I was going to be okay, but he was worried about my wife.

So I think that's a very important question. I was just thinking about it as I was on the plane, while they were de-icing it. There are the sorts of things that happened when the stroke strategy was introduced, and they had those very visual types of things on television--you know, with the pounding. I think that is really a very visible way that people can understand what is happening. What are the early signs of dementia? What is dementia versus normal aging? How do you tell them apart? I think that's a really important thing.

As part of that, I think there's also this whole education piece and this whole issue of the stigma. People are afraid to talk about it, either people with early dementia--it is an exception--or caregivers who are embarrassed about the fact that their loved one has developed dementia. I think somehow dealing with the stigma is really going to be an important issue.

I think the next thing is the whole issue of the primary care provider and equipping that primary care provider with the tools for the early diagnosis intervention. As far as I know from talking to my colleagues, there is no one single tool that most family doctors can apply in order to begin to even suspect dementia, nor is there any way in the system that family doctors are rewarded for spending the time to diagnose dementia. Somehow I think looking at the whole fee schedule is probably beyond this committee, but I think it's an important issue, because right now doctors, including me when I was practising, are rewarded for volume, not for quality and not for outcomes. I think somehow changing how doctors get rewarded...so that primary care physicians actually spend the appropriate amount of time to diagnose dementia and are rewarded commensurate with that time.

Those would be my early thoughts on that.

[Kirsty Duncan, Liberal, Etobicoke North, ON]

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you so much. It was very interesting.

We'll now go to Ms. Hughes.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

I'm going to be putting my questions to you in French, so I will let you get ready to listen to the interpretation.

Madam Chair, I hope the few minutes it takes to set up will not be deducted from my time.

[The Chair, Conservative, Joy Smith]

I'll just start your time again until they get ready, so you'll have your full time, Ms. Hughes.

Does everyone have their earpieces in?

[Dr. Robert Lester]

I can't figure it out.

[The Chair, Conservative, Joy Smith]

I will have the clerk come and assist you. We do that just to challenge everybody when they come to committee. It took me only a year and a half to figure it out.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Is everyone ready?

[The Chair, Conservative, Joy Smith]

All right, Ms. Hughes, we'll start you over again.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Thank you. I apologize, but sometimes we have to use French to give the interpreters an opportunity to showcase their skills.

First of all, thank you very much for your presentations.

Mr. Diamond, I found your presentation extremely interesting. I think it's one of the best that has ever been made to this committee.

I sympathize with your plights, Mr. Mann and Mr. Lester. My sister is 57 years old and she was diagnosed at 50 years of age. We knew that she was having some problems before then, but the diagnosis was not confirmed until she was 50 years old. We do not know how much time she has left. The fact of the matter is that it is extremely difficult for those who receive this diagnosis to get some support. Clearly, this is a problem, just as it is a problem understanding what a person with Alzheimer's is going through.

You talked about many things, Mr. Lester. Some are saying that the problem lies with the provincial government, that the provinces are responsible, but I believe that everyone, provincial and federal members of Parliament alike, have a role to play in ensuring that these people get the support they need and that they are treated well when they are institutionalized.

Most people feel frustrated. You are correct when you say that many people perhaps feel ashamed to be suffering from Alzheimer's. They try to hide it from everyone around them.

It's even harder for the caregivers. You pinpointed the problem. While the federal government claims to offer support to those who care for family members or a friend, the only type of support available to them is employment insurance compassionate care benefits. Unless I'm mistaken, caregivers are entitled to receive such benefits only for six weeks. Six weeks isn't much when you're dealing with an illness like this.

A tax credit is also available, but it isn't enough, in my opinion. Tax credits are not really useful because they involve small amounts. Family members who are unable to care for a brother, sister or parent at home face a major problem.

What steps should be taken to help caregivers of Alzheimer sufferers? Anyone?

[Deborah Benczkowski]

One of the things that's important is some kind of income security. As you said, many people who are caring for their loved one with dementia are out of the workforce. They may have already retired and tax credits don't really help them. EI benefits don't help them either, and they're short term anyway.

With the Health Charities Coalition of Canada, one of the things we talked to parliamentarians about last fall was the need for a guaranteed income security payment that could be available to families providing that kind of care. We have to remember that those families are keeping that person out of more expensive long-term care options, or nursing care options, usually until the end of life. So there is a savings to the system. We have information about that in our Rising Tide document, which describes some of the strategies we could employ to help people keep their loved ones at home.

Aging in place, maintaining people in their own homes for a longer period of time, is also effective. People's ability to maintain their activities of daily living is usually strengthened by being in their home environment, being where they're comfortable. A move to any kind of a facility can often precipitate a swift decline in someone's functioning.

[The Chair, Conservative, Joy Smith]

Dr. Diamond, I think you wanted to say a few words.

[Dr. Jack Diamond]

I just wanted to add that I think it was last year a paper came out in which they investigated the effect on the health of caregivers of a one-day respite each week. There was a significant amelioration of the physical and mental conditions, many of them medical, as a consequence of having this one-day break.

[Deborah Benczkowski]

A well-known researcher, Dr. Mary Mittelman, out of New York, has done a study on caregivers and providing support to them. Her study found that even with a moderate, six-week caregiver intervention support program, where caregivers learn about how to better provide care and deal with their own stress, transfers to a care facility could be delayed by nearly two years. That's an enormous cost savings if someone can be maintained at home. It was an additional 536 days or something like that.

[Carol Hughes, NDP, Algoma—Manitoulin—Kapuskasing, ON]

Ms. MacDonald.

[Shannon MacDonald]

Although I know we're talking primarily about Alzheimer's disease, I'd like to mention that the issues and the examples illustrated through the Alzheimer's lens are relevant across the spectrum of neurological conditions. This relates particularly to caregiving. There are mothers caring for children with severe neurological and physical disabilities as a result of their neuro-developmental condition. So the issues we raise in one discussion have direct applicability across the spectrum of neurological conditions.

[The Chair, Conservative, Joy Smith]

Ms. MacDonald, we're out of time. I'm sorry.

Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

Thank you, Madam Chair, and my thanks to all of you for the comments here today. Shannon, welcome back. I know you've been our most avid participant at the back of the room during these hearings.

I have a few questions. With respect to Alzheimer's research, Canada is engaged in partnerships with the U.K., Germany, and France, and we are looking at potential partnerships in China and the U.S. What evidence of that are you seeing...? Is there any reason for optimism with these types of partnerships? Do you see any practical benefits for these collective working arrangements with other countries?