Health Committee on March 1st, 2012

[The Chair, Conservative, Joy Smith]

We can begin now. We have a reduced quorum, but people will be coming in. Because of the weather, things are a little iffy with the traffic and everything.

I would like to welcome from the Public Health Agency of Canada, Ms. Elmslie, the director general for chronic disease prevention and control. I'd also like to welcome Dr. Beaudet.

We will be going from 8:45 to 9:45 on the presentations here. Who would like to begin?

Ms. Elmslie.

[Kim Elmslie, Director General, Centre for Chronic Disease Prevention and Control, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada]

Thank you, Madam Chair. It's always a pleasure to appear before this committee.

Madam Chair, honourable members, I am very pleased to be here today to speak to the issue of neurological diseases.

I would like to take a few moments to summarize some of the important considerations related to neurological diseases. As you know, neurological diseases affect the brain or the nervous system.

Multiple sclerosis, Alzheimer's disease, Parkinson's disease, cerebral palsy, and epilepsy are but a few of the myriad of neurological conditions. These conditions are a leading cause of disability in Canada. Very few are curable and most worsen over time. Neurological diseases can be devastating for all those affected by them. They often take away so many of the things we take for granted—the ability to move, to communicate, and to remember.

We estimate that at least one million Canadians are affected by neurological diseases and suffer from the challenges of long-term disability and reduced function as a result of their neurological conditions. Whether the person affected is a grandparent, a parent, a child, or a neighbour, neurological diseases can inhibit Canadians of any age from participating in society. They can be present at birth, or they may develop in young adults, and they are often associated with aging.

This will be particularly important as the baby-boom generation begins to reach their senior years. Neurological diseases such as Alzheimer's disease and Parkinson's will affect more and more older adults. We estimate that these diseases cost the economy about $9 billion a year. There are other important costs for which it is difficult to attach a dollar figure—the human costs of neurological diseases. However, there have been, and continue to be, important developments in research, care, and treatment for these diseases. For the most part, there is no cure.

We do not have a full and accurate picture of the number of people affected by neurological diseases, the causes of the diseases, and their impacts on Canadians, families, and caregivers. Our existing surveys are dated, and are only available for a very limited number of conditions, such as epilepsy, MS, and Parkinson's disease.

Data gaps mean that we don't know which programs and policies will best serve Canadians affected by these conditions. That is why it is so important that we learn as much as we can about how prevalent neurological diseases are across Canada and understand the impact they have on the lives of individuals, their families and caregivers.

We also need to understand much better the implications for health care in our country. We know there are major data gaps for people residing in long-term care facilities who live with neurological conditions. To give you a sense of the extent of neurological diseases in Canada, I offer these facts.

Canada has among the highest rates of MS in the world, striking young adults, with women three times more likely to be diagnosed than men. Nearly 160,000 Canadians are living with epilepsy, a number that grows by almost 15,000 every year. Epilepsy affects both children and adults, with almost 25% of new cases occurring after the age of 60. Today, we estimate that approximately 500,000 Canadians are living with Alzheimer's disease and other dementias. An estimated 100,000 Canadians have Parkinson's disease. Approximately 200,000 are living with an autism spectrum disorder.

Taken together, it's very clear that a significant number of Canadians live every day with a neurological condition. Although there is no cure for many of these conditions, prevention and treatment can slow or delay their progression. By collaborating with provincial and territorial governments, health charities, other stakeholders, and researchers, we begin to address these knowledge gaps.

I don't have to tell you that good information is needed to make informed decisions, which is why investing in research is so vital. We can solve the real-world problems faced by individuals, families, and communities through research now and into the future.

The Government of Canada is advancing the knowledge of neurological diseases by funding the National Population Study on Neurological Conditions—a $15 million investment over four years. Working in partnership with the Government of Canada, Canadian neurological charities have come together under the umbrella of the Neurological Health Charities Canada, or NHCC.

Through this coalition of organizations, such as Alzheimer Society Canada, Parkinson Society Canada, and the Multiple Sclerosis Society of Canada, to name a few, Neurological Health Charities Canada represents people with chronic and often progressive neurological diseases. This coalition of health charities provides leadership on brain health by evaluating and advancing new opportunities for collaboration specific to advocacy, education, and research projects.

The study on neurological diseases that we are undertaking in collaboration with Neurological Health Charities Canada will help to fill knowledge gaps and will forecast the impact of neurological diseases over the next 20 years. It will provide a clearer picture of the state of neurological diseases in Canada, and very importantly, give Canadians living with neurological diseases, as well as their caregivers, a chance to tell their stories.

The study results will aid governments and stakeholders in planning programs and providing health services for Canadians with neurological conditions. It will provide us with key information to improve our knowledge about the extent of neurological disease, risk factors, use of health services, economic costs, and the impact of these conditions. It is the most comprehensive study of neurological conditions ever to be conducted in this country.

Better understanding the impact of neurological conditions on individuals in their homes, in their communities, and on their families and caregivers will help improve the quality of care and overall quality of life.

In the final year of the study, a comprehensive report will be published, and very importantly, a consensus conference will be held so policy-makers across Canada can discuss the findings and discuss what they mean for our approach to neurological diseases going forward.

Being able to forecast the impact of neurological diseases over the next few decades is of particular importance in the context of an aging population. Parkinson's, Alzheimer's and other dementias, although not a normal part of aging, are more prevalent in older adults. Having this kind of information can help prepare us for these future needs.

Another federal initiative that addresses neurological diseases, more specifically multiple sclerosis, is the Canadian MS Monitoring System, which was announced in March 2011.

The development and implementation of the MS Monitoring System is being led by the Canadian Institute for Health Information, or CIHI, in close collaboration with the provinces and territories, the Canadian Network of MS Clinics and the MS Society of Canada.

The new monitoring system will help make good information available on the treatment of MS for Canadians who live with this devastating disease. It will compile data from multiple independent data systems across the country. It will provide a standardized way of collecting those data, and will create a national data system on MS, its treatment, and information on the quality of life of those living with this disease. Over the longer term, this system will monitor patient outcomes and help identify the most effective therapies in the treatment of MS.

The information gathered and distributed through the monitoring system will help health professionals identify future needs and plan resources to ensure that those diagnosed with MS have access to the care they need. More research on neurological diseases will provide Canadians with the best possible information for the treatment and management of their condition. We have some knowledge about how neurological diseases affect the body, and some effective treatments, but we also need to know more so that Canadians affected by these conditions can participate fully in society.

This can only be achieved with research on neurological diseases—research done in collaboration with the provinces and territories, health charities and organizations, and importantly with input from patients who live day to day with the challenges of their particular neurological condition.

My colleague Dr. Beaudet, from the Canadian Institutes of Health Research—

[The Chair, Conservative, Joy Smith]

I'm sorry you've gone over your time, Ms. Elmslie.

[Kim Elmslie]

I was just going to hand it over to Dr. Beaudet. Perfect timing.

[The Chair, Conservative, Joy Smith]

I notice we don't have your handout. Do you have a presentation, or a handout that we can take home with us?

[Dr. Alain Beaudet, President, Canadian Institutes of Health Research]

We can send you the presentation.

[The Chair, Conservative, Joy Smith]

Okay. Great. I just wanted to double-check. Thank you.

[Dr. Alain Beaudet]

Thank you, Madam Chair.

I would first like to thank your committee for inviting me to speak to you about research activities dealing with neurological diseases in Canada and to provide you with an update on recent activity related to multiple sclerosis.

Today I would like to highlight some of CIHR's strategic initiatives that will help us better understand, prevent, or provide better treatments for neurological diseases. First, I'd like to give a few examples of how CIHR-funded research has already had a major impact on health outcomes for Canadians living with neurological diseases.

Since its inception in 2000, CIHR has invested $1.1 billion in the field of neuroscience, and this investment has been fruitful. A sizeable proportion of these investments have been in the area of neurodegenerative diseases, notably in studies on the pathophysiology and treatment of Parkinson's disease. As you may know, this chronic and progressive brain disorder can give rise to major motor impairments, which include rigidity and tremors.

Clinical studies carried out by Andres Lozano of the University of Toronto have confirmed a beneficial effect of deep brain stimulation surgery for the treatment of the cardinal motor features of Parkinson's disease. While the likelihood of improvement varied from symptom to symptom and from patient to patient, the surgery was found to be very effective in reducing motor fluctuations and involuntary movements—the primary reasons for patients' intolerance of medical therapy.

As another example, Dr. Bin Hu, a CIHR-funded professor from the University of Calgary, has developed an innovative tool called a “gait reminder” to help people living with Parkinson's disease have better walking movements. This new device computes leg movements and reminds individuals to take large steps to remain stable. Such a device prevents falls and helps prolong the functional mobility of individuals living with Parkinson's disease.

Important progress has also been made to better understand and treat traumatic brain injuries, including concussions and post-traumatic stress disorder, or PTSD. As you know, PTSD occurs after exposure to a terrifying ordeal, such as military combat, and treating this disease has proven a challenge. However, CIHR-funded research programs have shown promising results in the treatment of this disorder. For instance, Dr. Gordon Asmundson from the University of Regina found that exposure therapy, where patients are exposed to prolonged and repeated images of trauma until the images no longer cause anxiety, can be very effective in treating this disorder.

CIHR also supports innovative research aimed at improving the lives of paralyzed people. For example, CIHR has contributed to the work of Dr. Popovic from the University of Toronto on the development of neuroprosthesis to improve grasping function in spinal cord injured and hemiplegic individuals. By being able to grasp and hold objects with this prosthesis, paralyzed individuals can significantly improve their independence in activities of daily living.

As you heard earlier, as a result of population aging, we are facing a worrisome increase in neurodegenerative diseases, especially Alzheimer's and other forms of dementia. That is why the Canadian Institutes of Health Research and their charity partners have launched the International Collaborative Research Strategy for Alzheimer's Disease. Some of the strategy's goals are to prevent and delay the development of the disease, stop or slow down its progression and enable the health care system to face the challenges of long-term care for patients suffering from the disease. It is important to point out that this initiative is based on the development of many international partners, including the United States, France, the United Kingdom, Germany, Belgium, Ireland, Italy and China. We have prioritized an international cooperative approach in other areas of neurological sciences and especially in traumatic brain injury research.

In 2011 in Brussels, Canadian Institutes of Health Research and their European Union counterparts implemented an international initiative of over $50 million to address traumatic brain injury. In addition to that initiative, efforts are being invested nationally to advance research in this area. As part of those efforts, the Ontario Neurotrauma Foundation and the Hotchkiss Brain Institute recently joined CIHR in order to develop a Canadian national initiative on traumatic brain injury.

In addition to those initiatives on specific neurological diseases, some more general initiatives have been implemented by Canadian Institutes of Health Research in order to understand the origin and cause of certain diseases and provide—thanks to the latest technology—more specific and more effective diagnoses and treatments.

For instance, to better understand the interaction between genetic and environmental factors in the development of neurological diseases, CIHR has recently launched a Canadian epigenetics, environment, and health research consortium. We hope this initiative will help us develop better prevention and treatment programs, and rapidly translate epigenetic discoveries into new diagnostic procedures.

In the same vein, to better understand the genetic prevalence and signatures of diseases, and hence to be able to offer more targeted treatments, we have recently launched, in partnership with Genome Canada, a large-scale initiative on personalized medicine. This initiative represents a federal investment of $67.5 million, to be matched one to one by private and provincial partners, for a total investment of $135 million in personalized medicine. We're confident that this major investment will help us offer new diagnostic and therapeutic approaches for a variety of disorders, including neurodegenerative diseases.

I would like to conclude by providing you with an update on the actions undertaken by CIHR in the field of multiple sclerosis. As you know, in 2009, Italian physician Paolo Zamboni proposed that the blockage of veins in the neck and chest, a condition he referred to as chronic cerebrospinal venous insufficiency, or CCSVI, was the cause of MS, and he suggested that opening these veins would relieve the patients' MS symptoms.

It is important to realize that this proposed venous angioplasty procedure is not a routine procedure. As stated by the Alberta Health Services, and I quote:

...there are no situations where venous angioplasty is an accepted and satisfactory treatment....Therefore, the claims that venous angioplasty is a “routinely done procedure” are not true.

Researchers around the world are still questioning the safety and the efficacy of the procedure. Important initiatives have been undertaken around the world to better understand the CCSVI condition and its potential impact on the health of MS patients.

As part of this effort, CIHR has launched a call for proposals for a phase one and two therapeutic clinical trial to determine whether the proposed procedure is safe and efficient. The application deadline for this funding opportunity was yesterday. An international peer review committee has been established to review the applications received and a research team will be selected by the end of the month.

I am pleased to say that CIHR is working in close collaboration with the provinces and territories, and the MS Society on this important initiative, and that our approach to move cautiously has been endorsed by key health organizations, such as the Canadian Medical Association, the Association of Faculties of Medicine of Canada, the Collège des médecins du Québec, and the Canadian Society for Vascular Surgery, as well as other international health research organizations.

I will gladly provide this committee with future updates on MS as they become available.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you very much, Dr. Beaudet.

We will continue, beginning with our first round of questions and answers. I just want to say that at the end of the meeting we'll have a 10-minute business meeting, so we'll adjourn with 10 minutes to go to have that business meeting about a couple of small things.

Now we'll begin with Madame Quach.

[Anne Minh-Thu Quach, NDP, Beauharnois—Salaberry, QC]

Thank you, Madam Chair.

I want to thank our two witnesses for joining us today. My question is for Mr. Beaudet, but both witnesses may answer.

Both of you conduct a lot of research. Yesterday and the day before, I met with representatives of the Canadian Organization for Rare Disorders. At a conference held yesterday, we learned that Canada was the only developed country without any policies on medication for rare diseases, given our small population. Internationally, a number of countries work together in order to establish a patient pool that is large enough to make information sharing possible, to make available medication that may be more appropriate or at least to suggest medication that may hopefully be used to treat those patients.

Some advancement was apparently made in the area two years ago, but things have stagnated since, and we do not know what Health Canada has done in this regard. What do you think? Why has no progress been made? Why are we not joining forces with other developed countries?

[The Chair, Conservative, Joy Smith]

I'm sorry, but our topic is neurological diseases. This is another topic.

But if you can answer...?

[Anne Minh-Thu Quach, NDP, Beauharnois—Salaberry, QC]

Yes, but some rare diseases are related to neurological diseases.

[The Chair, Conservative, Joy Smith]

Thank you—

[Dr. Alain Beaudet]

Obviously, I cannot comment on the policy aspects of things, that would be for Health Canada.

[The Chair, Conservative, Joy Smith]

Yes.

[Dr. Alain Beaudet]

I'm sure they will be happy to provide you with an answer when they meet with you.

What I can tell you, however, is that we have been very sensitive and sensitized to this very important project for many years. You are absolutely right that the nature of these diseases is such that very often the pharmas are not all that interested in engaging in research because the potential markets are extremely small. It's really for us to support research in this area, which we have done. We've done it at the level of understanding what diseases are, so that we can target proper therapeutics for them. In particular, we've had a very successful collaborative initiative on rare diseases with Genome Canada, which has led, I must say, to the discovery of several new genes for rare disorders. I think there is quite a bit of hope there for patients with these disorders.

We've also been involved with the provinces in a major clinical trial for enzyme replacement therapy in Fabry disease. We are clearly aware of the problem, and we've been ramping up our research efforts in that area. We are not involved in regulating, as I'm sure you understand.

I apologize for answering your question in English. I should have answered in French, but you seem to have understood what I said.

[Anne Minh-Thu Quach, NDP, Beauharnois—Salaberry, QC]

Yes, it's okay. Our interpreters are excellent.

Mr. Beaudet, you also talked about personalized medicine, and about therapies and treatments. Could you give us more details about that and tell us which area is the most developed?

[Dr. Alain Beaudet]

There is no doubt that personalized medicine is a major hope for all countries. Progress has been made in research in the U. S. and in Europe. Asia is also beginning to see some advancement. I think that Canada was lagging a bit behind in this area. That is why a major strategy on personalized medicine was launched a few weeks ago and was announced jointly by ministers Aglukkaq and Goodyear.

Personalized medicine could completely change the way diagnoses are made. I hope we will one day be able to use it to treat patients. Currently, a large number of patients being treated with medication are not responding to it. In many cases, that is due to the fact that the patients simply do not have the genetic elements that encode the targets the medication has an effect on. Therefore, medication is usually given to much more people than would be likely to respond to it.

The advantage of personalized medicine is that it will enable us to stratify patients and thereby focus specifically on the people whose genetic makeup predisposes them to respond to that medication. That will help us target treatments much better. As you know, that method is already being used to treat cancer in cases where it must be determined whether certain types of cancer cells will respond to a specific chemotherapy treatment, for instance. If it is known that, in terms of genetics, cells can respond to a chemotherapy treatment, we can subject patients to chemotherapy—which, as you know, is no trivial matter—and ensure they respond to it. On the other hand, that same treatment will not be administered to patients whose cancer cells do not have the required receptors for the medication and who, consequently, would not respond to it at all. So it is really a matter of specifying who is at risk, what the signature of the disease is and how we can ensure that the therapy is actually in line with a given treatment.

Personalized medicine is also very useful in the drug industry. Once randomized treatment trials are carried out, we will be able to ensure that we target specifically those groups of people that can respond to the treatments being tested. We hope that this will enable us to conduct randomized treatment trials on fewer patients and that we will not have to submit patients to treatments they are unlikely to respond to. In the case of neurological diseases, it is often not a matter of specific diseases, but syndromes that, presumably, cover various genetic identities. Therefore, we would be able to administer treatments that are more appropriate for stratified patients we refer to as responders.

[The Chair, Conservative, Joy Smith]

Thank you so much.

Thank you, Ms. Quach.

We'll now go to Dr. Carrie.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you very much, Madame Chair.

I want to thank the witnesses for being here again to update us on this very important study.

I did want to touch base with you, Dr. Beaudet. Could you give the committee a rundown of the progress made in the last year on CCSVI? I know you mentioned that it was just a couple of years ago, in 2009, that Dr. Zamboni hypothesized that this was a cause for MS.

I know there are many organizations around the world, including the Canadian Medical Association, that still consider it a recently proposed condition. Are there any definitive tests out there that doctors could use to diagnose CCSVI?

[Dr. Alain Beaudet]

That's an excellent question, Dr. Carrie. As you know, one of the numerous difficulties, to start with, has been in establishing protocols of research to even demonstrate whether or not there was a higher prevalence of an association of CCSVI with patients with MS than with patients without MS. As you know, when you look at the literature on the subject, there's a huge variation and it is widely believed that the reason for that is the difficulty of diagnosing the CCSVI condition.

It is an ultrasound diagnosis, to start with, and several of the seven studies that the MS Society is currently supporting are actually comparing various diagnostic methods. What's interesting is that they all compare the various methods—for instance, intravenous angiography or NMR spectroscopy—with the Zamboni standard, which is ultrasound. So the idea is whether or not we see the same thing as with an ultrasound, and in some cases, an ultrasound performed using exactly the same machine as Zamboni used. There are some groups in Canada that actually went to the trouble of purchasing the same machine as Zamboni's and sending their technicians in the trial to Zamboni's lab, so that they would really learn to do it exactly as he did, and then they compared this with a variety of other approaches of looking at venous pathology, which are the current imaging approaches to look at venous pathology.

As you will see if you go on our website and look at the protocol for the therapeutic trial that we launched several months ago now, we've been extraordinarily specific—actually, I would say more specific than CIHR usually is in its call for proposals—in how to establish a proper diagnostic procedure, and preferably several diagnostic procedures, to make sure that we wouldn't start putting balloons in the veins of patients where the existence of CCSVI could be questionable. But if you read the recent review articles on this topic, you will see that this question of the difficulty of diagnosis is a recurrent one.

[Colin Carrie, Conservative, Oshawa, ON]

I do see it as a difficult diagnosis, and that's why I was wondering. I want to thank you for that update because it seems to me there's been some questioning around whether it exists and whether people without MS can have CCSVI, and I'm glad that you were able to—

[Dr. Alain Beaudet]

It has been one of the problems, actually, because some of the people who really don't believe in the association of CCSVI have put forth exactly this observation: Why is it that so many patients have the same abnormalities in their vein system and don't show the MS symptoms?

We could discuss at length the various reasons for that. Let's just say that right now there's enough evidence, as you know, for the possibility of an association, or an increased prevalence, for the working group to recommend to us that we go with a trial. And if we're moving on a trial, it's because we believe there are scientific reasons for it. Otherwise we'd know there would be no chance for the ethics review boards to approve such a trial. So if we launched it, it's because we feel at this point there are enough question marks of importance to really further investigate this.

[Colin Carrie, Conservative, Oshawa, ON]

I do want to commend CIHR for helping to coordinate this research, because so many people are counting on it.

You brought up trials. We recently heard that the Italian MS society's scientific community was mandated to review Dr. Zamboni's clinical trial, but did not approve his large-scale clinical trial. Why was that decision made, do you know?

[Dr. Alain Beaudet]

Very simply, they recommended to Zamboni that he should do things the way they're normally done—that is, go first to a phase one and two trial before moving to a large number of patients, as we always do with clinical trials. It's the normal prudent process. You first demonstrate that it is safe, you demonstrate therapeutic efficacy on a small number of patients, and then if there are no problems and if things are positive, you ramp it up to a large number of patients.

Basically, what the committee of the Italian MS society told Dr. Zamboni is, well, to do as Canada does. They didn't really say that, but they recommended that he take an approach that is exactly the same as the one we've chosen to take.