Madam Speaker, I am very honoured to stand in support of Motion No. 274 to enable multiple sclerosis patients and their families to have access to information to make informed decisions. I want to thank the member for Vegreville—Wainwright for bringing forward this very important issue.
The reason I am in support of the motion and eager to speak to it tonight is that in Burlington, my home is located on a small block with maybe 25 or 30 houses, and three women on the block have MS. It is vitally important that we make sure we have the appropriate information for them on all the treatments, particularly the Zamboni treatment that has been well promoted over the last number of years, so that they can make the right decisions based on the actual science that is available. That is what this motion is talking about and that is what this government is doing.
The motion asks that we ensure that Canadians living with MS, along with their families and caregivers, have access to the information they need to make informed decisions in the management of their condition. I would like to thank the member for bringing this motion forward. MS touches the lives of friends and family of each and every one of us and we need to move on this issue.
MS is a neurological disease that can affect vision, hearing, memory, balance and mobility. Unfortunately, there is no known cure. The current treatment is geared toward managing symptoms and slowing down the progression of the disease.
An estimated 55,000 to 75,000 Canadians currently live with MS. Women are more than three times likely to develop the disease. Canada is faced with one of the highest rates of MS in the world. By understanding more about the disease, its progression and the use of treatments in Canada, we can more effectively plan care and identify best practices for MS treatment.
Many members have heard about the chronic cerebrospinal venous insufficiency, CCSVI, procedure, which is more commonly known as the Zamboni procedure. It is named after the Italian surgeon who proposed that blocked veins in the neck may cause MS. The procedure is a surgical technique to open those blocked veins with the objective of relieving MS symptoms. It is not a cure, but the objective is to relieve the symptoms.
It has raised significant interest from MS patients and patient associations, but it has also raised calls for better understanding of the safety and efficacy through scientific research. Through information sharing and research, our knowledge and understanding of MS, its progression and possible treatments can evolve.
Good information is essential when weighing the benefits and risks of treatment options. Patients, through discussions with their physicians and their families, must have the ability to make informed decisions on the management of their condition. However, information is still missing. There is much we do not know about this procedure and so much we could collectively share and learn by taking advantage of the information that currently is collected in MS clinics and creating a nationwide resource.
Motion No. 274 encourages governments, patient groups and medical associations to address these gaps. The motion before us today supports the need for Canadians living with MS, along with their families and caregivers, to have access to up-to-date information necessary to make informed decisions in the management of their condition.
I am pleased to say that working with our partners, the Government of Canada has announced two key national initiatives that will help Canadians get the information they need about MS and its treatment: the Canadian MS monitoring system and the clinical trial on the CCSVI procedure. Both are addressed in the motion before the House and both will arm MS patients with the information they need about the issues of utmost importance to them: their care and treatment.
Today I would like to take the opportunity to discuss in detail the new initiative, the Canadian MS monitoring system, which is being driven by a strong collaborative effort. The goals of the monitoring system are consistent with Motion No. 274, to obtain better information about MS in Canada, including those who have undergone the CCSVI procedure.
With support from the Government of Canada, the Canadian Institute for Health Information, or CIHI, is developing the system. CIHI is working in close collaboration with the Canadian Network of MS Clinics, the MS Society of Canada and provincial and territorial governments. This unique collaboration is bringing together political and technical experts from across Canada, as well as patient input for the benefit of those coping with this disease.
CIHI is an independent, not for profit corporation that provides essential and relevant information on Canada's health system and the health of Canadians. The Canadian Network of MS Clinics was established about a decade ago by health professionals to advance collaboration and information sharing on MS across the country. We are fortunate in Canada to have such dedicated and highly trained doctors and nurses working together to support people living with MS and to help them achieve the maximum quality of life possible.
The MS Society of Canada is also a key partner in this initiative as it is the only national voluntary organization in Canada that supports both MS research and services for patients and families. The MS Society is focusing on the priorities and interests of patients and the development of the system and will ensure that the information that is collected is shared with patients, families and their caregivers. The provinces and territories are also engaged in working with the federal government in developing the system and participating in its design.
The vision driving this collaboration is of a longitudinal, observational monitoring system for all of Canada. By working in partnership, we are building on the strength of multiple perspectives in developing this comprehensive national information system with the best interests of patients top of mind.
Consistent with Motion No. 274, advisory and technical committees have been established to guide the development of the system. Through these committees, provinces and territories, as well as people living with MS, provide valuable input and advice on the development of the system. This ensures its relevance to the needs of those who are intended to benefit from its use.
Overall, the system will collect clinical, demographic and health status information of patients from participating in MS clinics on a voluntary basis. It will operate according to stringent privacy protection policies.
Why is this important to patients? To begin with, we do not have the adequate pan-Canadian information on MS rates. We do not have any coherent way of sharing how patients cope with their disabilities, what works and what does not work for their quality of life. More important, we are not taking full advantage of what is being learned in MS clinics across the country about the care and treatment for MS.
This system helps fill the gaps. It will also collect information on patients who have undergone the CCSVI procedure abroad.
This information will help us to better understand trends in MS and the use of treatments, support the delivery of care, monitor patient outcomes over the long term and identify future needs and resources. As a national data centre, the monitoring system will offer a broader view of MS in Canada.
This motion is very important in terms of gathering the information and using information that exists but is not attached to anything so that we are able to give proper information to patients, caregivers and families. MS is important, not only on my street but in my community. I have been active with the MS Society of Canada for a number of years. April 22 is the walk for MS in my community which raises a little over $86,000 every year. I am the MC for the day at the event.
I encourage everyone watching today to get involved with the MS Society, help those in need, join in the walk and do whatever they can to improve people's quality of life. The MS Society does great work in this country. The Canadian Institutes for Health Research is doing great work in this area. I want everyone to get behind this cause. I thank the member for moving the motion.