:
Thank you, Madam Chair. It's always a pleasure to appear before this committee.
[Translation]
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.
[English]
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.
[Translation]
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.
[English]
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.
[Translation]
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.
[English]
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.
[Translation]
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.
[English]
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.
[Translation]
My colleague Dr. Beaudet, from the Canadian Institutes of Health Research—
:
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.
[Translation]
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.
[English]
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.
:
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.
I'll start by saying that, as you know, the monitoring system is for all MS patients, including those who have chosen to have the CCSVI procedure, but not exclusive to those patients.
The reason it's important to have this monitoring system is that right now people with MS are going to a variety of clinics across the country for their care and treatment. Each of those clinics have different ways of collecting information on their patients, on the quality of life of their patients, on the types of treatment, and on their functions.
So we don't have, at this point, a national data system that allows us to understand what is happening to MS patients in this country in terms of improved function, disability, and quality of life. We also don't have a national data system, then, that allows for good information for doctors and for those who are responsible for planning services for these patients.
That's why this monitoring system is so important. It will unify, in a standard way, those data systems so that we have a large data system that we can use for a variety of different purposes—for research purposes, for understanding care, for looking at treatment patterns over time, and for looking at outcomes in these patients.
The CCSVI, of course, is very important to this dimension of the monitoring system, because it is one of the types of interventions that Canadian patients at this point in time are choosing to receive. We want to know more about what's happening to these patients, side effects as well as potential benefits.
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.
:
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.
:
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.