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—