Madam Speaker, it is with pleasure that I rise today to speak to private member's Motion No. 274, put forward by our colleague, the hon. member for Vegreville—Wainwright.
As I speak, I cannot help but think of my friends, my neighbours and my patients back in Oshawa who are living with this devastating disease. I would like to dedicate my remarks to my friend, Clark Caskey, who recently passed away, and his wonderful wife, Linda.
The motion calls upon the Government of Canada to ensure patients with multiple sclerosis, their families and caregivers have access to the information they need in order to make informed decisions in the management of their condition.
For my part today, I would like to talk about what we know, provide some of the context surrounding these issues in Canada, and discuss two recent major initiatives that complement this motion. I would first like to tell members what we know about multiple sclerosis, or MS.
MS is often a disabling disease of the central nervous system which may affect vision, hearing, memory, balance, and mobility. Canada has among the highest rates of MS in the world. MS often strikes young adults, with women three times more likely to be diagnosed with MS than men. The effects of MS are not only felt by those living with the disease, it also impacts their family and friends and the community at large, both emotionally and financially, often for a lifetime.
In 2009, Dr. Paolo Zamboni, an Italian surgeon, suggested that vein blockage is a main cause of MS, a condition he labelled as chronic cerebrospinal venous insufficiency, or CCSVI. He suggested that opening up blocked veins in the necks of multiple sclerosis patients would relieve the patients' symptoms, a treatment commonly called the Zamboni or CCSVI procedure. Experts tell us that more research is needed on the safety and efficacy of the CCSVI procedure before it can be offered in Canada.
Motion No. 274 asks the government to support people with MS so they can make informed decisions about their condition. This includes information on the potential link between CCSVI and MS. The motion seeks to ensure that the recently announced Canadian MS monitoring system contains specific and useful information on the risks and benefits relative to undergoing surgical treatment for CCSVI. What is important here is that this information on risks and benefits be accessible to MS patients.
We know that people with MS need good information to make best choices about their health. Accurate information is critical in weighing the benefits and the risks of treatment options. Over the past year, we have developed two major new initiatives, in collaboration with key stakeholders, which align with the spirit of Motion No. 274. First, we announced the development of the Canadian multiple sclerosis monitoring system. Second, we recently announced the establishment of a phase I and phase II clinical trial to study the safety and efficacy of the CCSVI procedure. Today, I would like to speak to both initiatives in the context of the motion before us today.
On March 23, 2011, the Government of Canada announced the funding and development of a new national multiple sclerosis monitoring system devoted to monitoring the health of those diagnosed with multiple sclerosis. Through the new monitoring system, we aim to improve our understanding of the disease and its treatments. We will assemble a national information system so that persons with multiple sclerosis and their caregivers can learn from the national experience with multiple sclerosis. Information on treatments, side effects, quality of life, progression of the disease, health status and much more will come from the monitoring system. It will be a relevant, important, coherent and collaborative national resource. The system will help fill gaps of information so that patients and doctors have the information they need to better understand this disease in order to make informed health choices. The monitoring system is being developed by the Canadian Institute for Health Information, in close collaboration with provinces and territories, the Canadian Network of Multiple Sclerosis Clinics and the Multiple Sclerosis Society of Canada.
This system will collect information on a voluntary basis from all MS patients attending participating MS clinics, including those who have had the CCSVI procedure. Through all we do, the perspectives of Canadians living with MS is crucial to informing our activities, policies and our research. For this reason, the monitoring system is being built with the input and advice of multiple sclerosis patients and their doctors, which will help ensure its relevance for those living with this devastating disease.
Information from the MS monitoring system will be available to patients through regular reports on a variety of topics. This is particularly important for MS patients and their health care providers. For the first time from a national perspective, they will be able to use this information to consider potential treatment options.
Working closely with the Multiple Sclerosis Society of Canada in the development of the monitoring system is essential, as it is the only national voluntary organization in Canada that supports both multiple sclerosis research and services for people with multiple sclerosis and their families. The MS Society of Canada represents patient priorities and interests. Its collaboration will ensure that information from the MS monitoring system is relevant to the needs of patients, families and caregivers. The MS Society also plays a key role in outreach to patients to provide them with this information and seek their feedback.
All of these efforts will help to ensure that the MS monitoring system remains relevant by providing the information MS patients and their doctors need for making decisions about treatment options.
In the spirit of the motion, the second initiative is the recent announcement to establish a pan-Canadian phase I and phase II clinical trial to study the safety and efficacy of the CCSVI procedure.
The Canadian Institutes of Health Research, CIHR, is leading this federal initiative and will implement a rigorous and international peer reviewed competition to select the team of researchers that will conduct this important research.
Through phase I, we will be able to evaluate the safety of the CCSVI procedure. In phase II, we will assess the efficacy of the CCSVI procedure in the treatment of multiple sclerosis.
Through this clinical trial, new and timely information will be available and shared with patients and their doctors through health professional organizations, such as the College of Family Physicians of Canada, the Canadian Medical Association and the Royal College of Physicians and Surgeons.
Aligning with this motion, Canadians living with multiple sclerosis, medical researchers and the MS Society of Canada are well represented on the advisory boards of both initiatives. Our government recognizes that MS patients are at the centre of this issue and established both advisory boards with this in mind.
The Canadian multiple sclerosis monitoring system advisory board will ensure that MS patients' perspectives are reflected in the development of this very important system.
The advisory board for the development of the phase I and phase II clinical trial of the CCSVI procedure includes researchers who are treating people with multiple sclerosis and who can bring patients' concerns to the table.
As I have emphasized today, collaboration is key to working on such a complex disease as multiple sclerosis. No one organization is alone in this fight. That is why we are working closely with the provincial and territorial governments, medical associations and the MS Society of Canada. This collective effort will help to ensure that people living with MS and their caregivers get the support and advice that they need.
Many of us have family members and friends who have MS. We see the strength and determination that they possess, and we are inspired by their spirit. As a chiropractor working in Oshawa over the years, I have had the privilege to treat patients with this debilitating disease and I have seen first-hand how it affects their families.
Our government recognizes the challenges faced by the thousands of Canadians who have MS and the toll it takes on them, their families and friends. It is vital that multiple sclerosis patients, their families, doctors and caregivers have access to information to make informed decisions in the management of multiple sclerosis.
I have appreciated the opportunity to speak to this important issue. I thank the member for Vegreville—Wainwright for introducing this important motion. I thank all members in the House this evening for their worthwhile participation in the debate. We look forward to moving this very important motion forward.
Colin Carrie Parliamentary Secretary to the Minister of Health
November 24 2011
