Health Committee on March 1st, 2012

[Kim Elmslie]

Yes. But there are gaps in information, and these are the gaps we're now starting to fill through other types of studies. The neurological health study is not just looking at one source of data. It's looking at data on surveys that are being conducted by Statistics Canada. It's doing new studies that interview patients, in particular. It's reaching out into communities to understand neurological conditions more effectively and comprehensively. What we're doing is creating a whole suite of different types of studies and surveys that allow us to fill in the pieces of the puzzle around these conditions.

Yes, we're concerned about rising rates of neurological conditions in the country. We know that the aging of the population has an impact. We're trying to learn more about autism, which is another new dimension of our work. We're putting in place the ability—again for the first time—to track cases of autism in the country, and not only from the health perspective. As you know, oftentimes it's the education or social service system that's picking up cases of autism before they're ever known in the health system.

These are complex ventures. They take time because you have to standardize the way you are collecting data so everybody is doing it in the same way. Otherwise, we get a mishmash of information about rates and prevalence and we don't know what to do with it because people are collecting it in different ways and it doesn't mean the same thing.

[Jack Harris, NDP, St. John's East, NL]

My time is up, but it seems rather primitive for us to be dealing with these very basic questions in the 21st century. I'm new to this committee, and of course I'm not an expert on health, but as a lay person I find it startling that we're at such a basic place when it comes to these issues.

[The Chair, Conservative, Joy Smith]

Thank you, Mr. Harris.

We're going to suspend now. I want to thank the witnesses so much for being here. I want to thank you for your time today.

We have another round of witnesses coming forward, so we will suspend for two minutes to allow the other witnesses to step forward and then we'll begin immediately.

Thank you.

[The Chair, Conservative, Joy Smith]

We're now going into our second round.

I want to welcome, for our second panel, from the Brain Canada Foundation, Ms. Inez Jabalpurwala—what a beautiful name—and Dr. David Kaplan. Welcome back.

From Neurological Health Charities Canada, we have Ms. Vanessa Foran, director of policy, partnerships and government relations; and Ms. Celina Rayonne-Chavannes, director of research initiatives. Welcome.

We'll begin, first of all, with your presentation for 10 minutes.

Inez, are you splitting your time with Dr. Kaplan? You have 10 minutes between the two of you.

Who is going to begin?

[Inez Jabalpurwala, President and CEO, Brain Canada Foundation]

I'll begin.

Thank you very much, Madam Chair, and thank you to the committee for receiving us today.

The brain is the most vital and complex organ in the human body, and it is the source of all human experience and understanding. There are more than 1,000 brain disorders, including Alzheimer's disease, Parkinson's, multiple sclerosis, brain tumours, chronic pain, depression, stroke, addiction, and spinal cord injuries. It is important to remember that there are more than 1,000 conditions, and so while we hear about certain conditions because they're more prevalent, there are in fact a range of disorders. We also hear about these disorders as separate entities, and it's further important to recognize that brain disorders encompass both neurological and psychiatric conditions.

Some brain diseases respond to treatment, but of course, there are no cures at the present time. People with a brain disorder may live for a long time with their condition. With some conditions, a person may slowly degenerate and lose function before dying.

Brain Canada is a national charitable organization. Our goal is to fund research aimed at unlocking the mystery of the brain and developing diagnostics, treatments, and ultimately, cures for brain disorders. We seek to maximize current investments in research, and to make future investments more efficient and more focused on outcomes that will benefit patients.

On March 15, 2006, Brain Canada's predecessor, NeuroScience Canada, published “The Case for Canada's Increased Investment in Neuroscience Research”. NeuroScience Canada made the case that there are commonalities across brain disorders, and that, therefore, brain disorders should be considered as a group.

We further argued that there has not been a comprehensive study on the burden of this disease grouping, which would take into account both the range of disorders and the disability costs associated with brain disorders. Previous data collected focused on individual diseases, and on mortality and hospitalization rates. It did not include suffering or disability that does not result in death or hospitalization, nor lost productivity and psychosocial costs to patients, families, and their caregivers.

When direct costs and costs linked to disability are combined, the economic and human burden is estimated at $60 billion, or about 38% of the total burden of disease. This is a greater burden than that of cancer and cardiovascular disease combined. NeuroScience Canada argued that we need to better understand the true burden of brain disease. We need to raise awareness about these disorders in order to stimulate private and public investments in brain research, and we need to increase investments in research in a focused, strategic manner, and at a ratio that is proportionate to the burden of disease.

I'm very pleased to be able to say that since “The Case” was published, we have made progress in all three areas. First, NeuroScience Canada provided the impetus and rationale for the founding of Neurological Health Charities Canada. The concept of health charities coming together was aligned with “The Case” document, which said that if we can bring diseases together around commonalities, so too should disease-based organizations seek a common purpose in working together.

“The Case” and the efforts of NHCC led the government, on October 9, 2009, to commit a total of $15 million to a major study on neurological diseases. It is important to recognize that this study focuses on certain conditions and does not address mental health conditions.

The Mental Health Commission of Canada, and the Global Business and Economic Roundtable on Addiction and Mental Health have contributed to our understanding of mental illness, but we still need to consolidate both neurological and mental illness in our understanding of the total impact of brain disorders.

Second, NeuroScience Canada piloted a team grant model called the brain repair program, which demonstrated that funding collaborative research projects involving the best researchers across diverse disciplines can produce breakthrough thinking, which has an immediate application to how we diagnose, treat, and cure brain disorders. The NeuroScience Canada model drew on the “one system” approach to the brain, and focused on commonalities and underlying mechanisms across a range of disorders.

Five teams were funded from 2004 to 2010. Each team received $1.5 million over three years, and each team had a breakthrough discovery every year of their grant.

Finally, in March and June of 2011, the Government of Canada committed to matching up to $100 million raised by Brain Canada from non-governmental sources to establish the Canada brain research fund.

This will be the largest single investment in brain research ever made in Canada. The fund will be started by Brain Canada, and we will support a three-prong research program, which was developed with the Canadian Association for Neuroscience. The fund will compose team grants modelled after the brain repair program, training fellowships, and operating support for national technology platforms. Brain Canada encourages the Government of Canada as it fulfills this commitment.

The fund will maximize the return on investments in infrastructure and salaries already made by government and private donors by increasing operating funding. The fund will focus our research investment on the brain as one complex system and not just a collection of diseases, and invest in commonalities where a single breakthrough has the potential to create therapies for multiple conditions.

The fund will better coordinate existing efforts to spur discovery, and create resources and a toolkit for all neuroscientists to use.

Finally, the fund will excite the public around one unifying vision for the brain, and encourage all the key players to work together—scientists, business and philanthropic leadership, and the voluntary sector. The result will be more efficient, effective use of public funding, and a leverage effect to stimulate private investment in brain research.

Thank you.

[The Chair, Conservative, Joy Smith]

Dr. Kaplan.

[Dr. David Kaplan, Vice-Chair, Science, Brain Canada Foundation]

Thank you, Madam Chair and committee.

I am the chair of research for Brain Canada, but I am also a laboratory researcher working on neurological and psychiatric diseases. As a scientist, I can say the reality is that there are no cures for neurological diseases. My feeling is that Brain Canada has one of the best opportunities to help address that.

So how are we doing that through our research program? As an American who moved to Canada 15 years ago, I'll just describe briefly why I feel Canadians are best poised to create breakthroughs in terms of neurological diseases, cures, and therapies. Also, I'll give you a few brief examples of the successes of our different research teams in our pilot brain research program.

When we set up our brain repair program, our first goal was to try to accelerate research findings into the clinic, but another major goal was to encourage the best Canadian scientists to come up with ideas that would result in breakthroughs and shift the paradigms of the field. If we have no cures for neurological diseases, we need new ideas.

What are Canadians known for? We're known for being innovative, new ideas, but also for working together. We work together and play together much better than Americans—coming from the U.S., I can say so. We also do this with what we call “bang for the buck”. Canadian researchers are funded to study brain diseases at about one-third of the level per capita of our American colleagues. Yet our research is known to be the equal to research in the U.S. We're known for bang for the buck. I've always said, “Imagine what would happen if you funded Canadian brain researchers at the same level as the U.S. What would we then be able to accomplish?”

Our teams are not meant to focus on a particular disease, but to find the underlying causes of multiple neurological diseases and conditions. So when a discovery is made by a team working on Parkinson's models, that will also be applicable, for example, to multiple sclerosis, Alzheimer's, and epilepsy.

We also encourage a team and multidisciplinary approach. We want physicists working with biologists. We want Parkinson's researchers to work with Alzheimer's researchers. We fund those teams at ample levels—a half million a year—which is much more than our CIHR levels. We also want our ideas, when they're proposed to us, to be internationally validated, so Americans, Europeans, and Canadians look at those ideas and say that's the best idea they've ever heard for trying to cure or approach a neurological or psychiatric disease problem.

I don't know if I have enough time. I wanted to briefly tell you the outcomes of some of our teams. We have funded five teams thus far, out of about 30 or 40 ideas that were proposed to our international review committee. I'll just give you brief examples.

One is a chronic pain team where researchers at the Université Laval in Quebec City and at SickKids hospital in Toronto found one of the causes of chronic pain, and what they think is a major cause. Right now, over half the elderly and many people with diabetes, viral infections, cancer, and neurological problems have chronic pain, and only very strong narcotics will even begin to approach it. What they've found is that a cell in the immune system that normally fights infections is sending signals to our nerve cells to make those nerve cells hypersensitive so that acute signals, such a pinprick, become chronic signals. They now have generated a company as a result of those results to try to bring that to patients.

[The Chair, Conservative, Joy Smith]

Thank you.

[Dr. David Kaplan]

Thank you.

[The Chair, Conservative, Joy Smith]

Now, we'll go to Ms. Foran, please.

[Vanessa Foran, Director, Policy, Partnerships and Government Relations, Neurological Health Charities Canada]

Thank you, Madam Chair and committee members.

On behalf of Neurological Health Charities Canada, I'd like to thank you for the opportunity to appear before you today.

Neurological Health Charities Canada, as you've heard, is a coalition of 25 health organizations established in 2008 to represent people with chronic, and often progressive, brain diseases, disorders, and injuries. Its role is to provide leadership by evaluating and advancing new opportunities for collaboration specific to advocacy, education, and research projects related to brain health. It is a conduit for federal, provincial, and territorial governments to reach 25 organizations through one NGO.

Collectively, our members represent and advocate on behalf of more than five and a half million Canadians living with neurological conditions and their families, and invest approximately $50 million per year to fund basic clinical and psychosocial research.

[The Chair, Conservative, Joy Smith]

Ms. Foran, you're covering a lot of territory in a real hurry and the poor translators are—

[Vanessa Foran]

Am I reading too quickly?

[The Chair, Conservative, Joy Smith]

Yes, you are. If you could slow down, we might have it in both languages, and that would be a good thing.

Thank you.

[Vanessa Foran]

Thank you, Madam Chair.

I would like to begin today by expressing NHCC's gratitude to Parliament for its $15 million contribution to brain health through the establishment of the national population health study on neurological conditions, which is addressing the gaps in knowledge about the prevalence and incidence of brain diseases in Canada.

As many of you know, the study is the first of its kind in Canada, managed by both NHCC and the Public Health Agency of Canada. It is expected to provide information about the current impact of neurological diseases now and over the next 20 years.

With 127 Canadian researchers at more than 30 institutions across the country, this study will ensure that systematic approaches are used to define brain conditions, help decision-makers identify the resources needed to meet the requirements of this expanding population, illuminate the economic impact of neurological conditions on the health care system, and provide much-needed data related to Canadian incidence, prevalence, risk, and health service utilization.

NHCC asks that the results of this study be used by this government to develop a national brain strategy to address the needs of the growing numbers of Canadians living with brain conditions. To support this strategy, we ask the government to take a leadership role in the following areas.

The first area is in education. As with mental health problems, too few Canadians have sufficient understanding of the problems they are experiencing to seek the help they need. Too few Canadians get the kind of diagnostic treatment and support they are seeking because front-line providers have an inadequate understanding of the brain's central nervous system and the conditions to which they are prone. Stigma and misunderstanding create huge barriers to effective treatment for both the people with neurological conditions and their caregivers.

To address this issue, we ask the federal government to provide education to the public and front-line health care professionals to increase their understanding of brain health and improve direct care for all those with neurological conditions.

In the area of caregiver support, the role of caregivers changes throughout the course of most neurological conditions. Initially, when the person with the condition is still living at home, the focus of the informal caregiver may be on helping with transportation, household finances, or personal care. While the individual is receiving care from home care providers, the scope of the caregiving role broadens to include management and supervision to ensure that services are delivered safely and as scheduled. Once an individual is in a nursing home, the needs change again. While support for the activities of daily living is provided by the care facility, the caregiver continues to be engaged as a member of the care team.

We ask the Canadian government to provide meaningful support for caregivers in the form of a comprehensive package of education, respite, and mandated workplace accommodation with regard to the episodic needs of caregivers.

Next is the area of income security. Whether the condition is diagnosed in childhood, such as with cerebral palsy, Tourette Syndrome, or epilepsy; in early adulthood, such as with multiple sclerosis; or later, as with Parkinson's or Alzheimer's disease, where most people are diagnosed after the age of 50; as the disease progresses, it takes a toll on a person's productivity. This includes no longer being able to work—perhaps because of the disease, but all too often because of a lack of accommodation in the workplace—or a family member having to work part time or to stop work for long periods to care for a loved one.

People affected by neurological conditions need a new plan. The NHCC would appreciate the opportunity to work with the Canadian government to develop an approach to income security for people affected by neurological conditions. Development of this strategy would involve provincial governments, people with neurological conditions, and the organizations that represent them.

However, we also suggest that there are some relatively easy actions that could be taken right now. This includes making employment insurance benefits more flexible to allow people who have episodic conditions to work part time and receive partial benefits. We also ask the Canadian government to apply EI benefits to caregivers for caregiver leave in provinces where this kind of leave is available through provincial legislation.

In the area of integrated care, there is a considerable body of literature on the subject of integrated models of care. Anyone who has experienced a neurological condition in their family knows that it entails many visits to many different settings. One of the most significant concerns voiced by people who are frequent users of the health services, as patients and as caregivers, is that their care is uncoordinated. It's very hard to tell who's running the show. In short, the system is very difficult to navigate.

NHCC recommends that the Canadian government take a leadership role to provide integrated care and support both for individuals with chronic disabling conditions and those with acute illnesses. This would include case management; team-based care with defined roles for primary care physicians, nurses, medical specialists, and other care team members; and care delivery system redesign, integrating mechanisms among primary care, institutional care, and community providers.

In the area of prevention, access to treatment to prevent the progression of brain diseases and associated disabilities is the most pressing need of those who live with neurological conditions. To address this issue we ask the Canadian government for accelerated and targeted investment in neuroscience, as it is essential to find both causes and cures for brain diseases, and best practices to prevent and manage these chronic conditions.

For conditions such as stroke and acquired brain injuries where primary prevention is achievable, we ask the federal government to establish public education programs to help integrate brain health into the broader context of healthy living and prevention awareness.

Finally, in the area of genetic fairness, you may already know that many neurological conditions have a genetic basis, but did you know that Canada is the only G-8 country that does not have a genetic fairness policy in place, whether through legislation or a voluntary moratorium by the insurance industry? It is a well-established principle that individuals not be discriminated against based on disability, yet outdated laws allow insurance companies to discriminate based on perceived or potential disabilities.

Insurance laws permit insurers to require health information and use it without transparency to determine eligibility, set premiums, and manage the risks. Insurers ask applicants to divulge personal health information, including genetic data and family histories, and consent to have this information verified. This unfairly puts Canadians under duress, because they're denied needed coverage if they fail to do so. Canadians must also agree to have their personal health information, including genetic data, shared with other insurers through a medical information bureau, effectively closing off an individual's insurance options and threatening privacy rights.

As you know—and mentioned earlier today—this government recently announced that it is investing $67.5 million into a personalized medicine health care strategy that will factor in a patient's genetics and the specific characteristics of their illness before customizing a treatment plan. NHCC applauds both Genome Canada and CIHR for their leadership in supporting research in this area, which will lead to predictive, preventive, and precision care. However, if we do not protect Canadian citizens against discrimination with regard to their DNA, who will step forward to participate in this research? We will not get maximum benefit from our investment into personalized medicine if we do not remove the barrier of genetic discrimination. Canada has an opportunity to make this right, like all other G-8 countries have. It is time for Canada to act now to establish measures to protect all citizens from discrimination.

To conclude, NHCC recommends that the Canadian government develop a national brain strategy, based on the results of the national population health study on neurological conditions, to address caregiver support, neuroscience research, integrated care, prevention, genetic discrimination, income security, and public education and awareness. With an established network of stakeholders, a demonstrated track record of effectively engaging the neurological community, and an excellent working relationship across the federal health portfolio, NHCC is best positioned to undertake this work in collaboration with the Canadian government.

We thank you for your consideration.

[The Chair, Conservative, Joy Smith]

Thank you so very much.

We'll now go into our seven-minute rounds of Q and A's.

We'll begin with Dr. Morin.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Ms. Foran, I would like to begin by thanking you for the work you are doing. I also want to thank you for describing the lives of the people who care for those living with this type of disease.

My grandfather had Alzheimer's. So I was able to see just how much impact the management of that disease can have on a family. Fortunately, my grandfather had many children and all of them provided him with support until his death. Obviously, since families are having fewer and fewer children, caring for ailing parents is becoming a burden.

My first question is for the Brain Canada Foundation representative.

In the 2011 budget, the Government of Canada announced that $100 million would be injected into the fund. I would like to know how that money will be distributed and what resources it will go towards.

[Inez Jabalpurwala]

The $100 million is a match-funding program, so it is a public-private partnership with one component being to stimulate private investment in brain research. So a potential envelope of $200 million over the next five years will be allocated to the three research programs I described: the team grants, the training fellowships, and the operational support to national technology platforms. We will do this through an open-competition model, and then national and international peer review, which, as Dr. Kaplan described, was our practice with the brain repair program.

For us, what is most critical is that we are supporting excellent and innovative research that is benchmarked against international standards. We work with the CIHR to ensure that the peer review process matches the gold standard, and we work with other organizations that match that standard.

I think there are two features that set us apart. One is that we have a little bit more latitude to fund riskier research. We don't have to fund just incremental research, because as Dr. Kaplan described, we're looking for the best ideas, no matter where they come from. If it means bringing a chemist together with a physicist and an engineer to do spinal cord repair, we're willing to look at it, if it's peer reviewed. It's a very important feature.

The second feature is that we work closely with the Canadian Association for Neuroscience, and we work with and invite as partners all voluntary health organizations, provincial agencies, institutions, and research centres, so that there's an exchange of understanding about key priorities and the key areas of promise. It is not a top-down approach. We have predetermined certain strategic priorities. It is very much a living, bottom-up approach where there's flexibility to pursue the best research as it emerges.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

You talked about priorities. Does the Brain Canada Foundation prioritize certain disease or certain problems?

[Inez Jabalpurwala]

No, this is partly because of the commonalities approach. I can't emphasize this enough. I've been involved in this field for over 10 years, and my sense is that some conditions will receive more attention, in many cases because of the number of people affected. But there are many conditions that don't necessarily have a group to speak on their behalf, and I think that when we're setting research priorities solely based on diseases that have a strong voice, we may neglect conditions that equally merit attention. In addition, with a commonalities approach, when you're looking at multiple impact, we may be looking at something like repair in the white matter of the brain that has impact not just on major diseases, but also on other conditions.

There are really only three things that are the big problems with brain disease: one, cells die in a particular region; two, they don't connect well; and three, there are chemical and molecular imbalances. So looking at some of these underlying causes gives us clues to a much broader range of conditions. I think that is the right way to set strategy.

[Dany Morin, NDP, Chicoutimi—Le Fjord, QC]

Thank you very much.

Madam Chair, I will let Ms. Mathyssen have my remaining few minutes.

[Irene Mathyssen, NDP, London—Fanshawe, ON]

Thank you very much, Mr. Morin.

Thank you very much for being here.

Madam Foran, I was quite taken by your concern with regard to the use of personalized medicine and genetic research. I have to confess that I was concerned by it when I heard it reported on the news. One of the things that really bothers me is that there has been no planning made for the 9.8 million seniors who will be here in Canada by 2036. Part of that planning, obviously, has to be what you were addressing.

You talked about legislative changes at the federal level. Should they also occur at the provincial level? Could you provide the committee with examples of genetic discrimination that's currently being experienced with regard to neurological diseases.

[Vanessa Foran]

Yes, indeed, there should be legislation, both at the provincial and at the federal levels. They should mirror each other to protect Canadian citizens.

In the 1990s, there was an insurance claim where the individual passed away and the family was not able to get their claim because of the genetic mutation found in this individual, which had nothing to do with his death. More anecdotally, for Huntington's disease, where there's a direct genetic link, I've heard of cases where a grandfather is diagnosed with Huntington's, and because there's such a strong genetic component to that particular disease, the children and the grandchildren couldn't get insurance for their house. That is very limiting to Canadians, and very unjust.

[The Chair, Conservative, Joy Smith]

Thank you.

And thank you for the question, Ms. Mathyssen.

We'll now go to Mr. Brown.

[Patrick Brown, Conservative, Barrie, ON]

Thank you, Madam Chair.

I remember in June 2009, I went down to the MaRS centre with a constituent of mine, Derek Walton, who had been suffering with ALS for seven years. He spoke at the announcement for the population study with Neurological Health Charities Canada. I thought that was a great initiative.

I was hoping to ask CIHR today for an update on ALS research, but I didn't have a chance. I thought maybe you could provide some information on where we are and if there are any new initiatives we could be hopeful about.