Madam Speaker, I want to thank my colleague for her well-thought out speech and her position on this motion.
This is obviously a very contentious and emotional issue for a lot of people. We are here tonight to talk about Motion No. 274. I would encourage MS sufferers and their families to get involved in this debate, to get involved in the gathering of the information, to make sure they are out in the public telling their stories and that they are lobbying governments so their issues are treated very seriously.
My colleague across the way talked about the need for urgency and acceleration. We certainly believe that things need to be done as quickly as possible and at the same time safely in order to deal with these issues.
I am here tonight to speak in support of Motion No. 274.
I want to recognize a young lady in my riding who has been very courageous in this fight that has gone on in the last few years.
Her name is Michelle Walsh. She lives on a ranch in Beechy, Saskatchewan. She was diagnosed with multiple sclerosis in 1991 when she was only 18 years old. She now has secondary progressive multiple sclerosis. She found herself in a situation where she was bedridden before she underwent this therapy in Bulgaria in July 2010 and then in California the following January. She has been a very outspoken supporter and advocate of CCSVI in Canada. She is one of the ladies who has kept my office very informed about the meetings and the new information regarding MS. I just want to recognize her and her persistence and the work and time that she has put into this issue.
I want to thank my colleague from Vegreville—Wainwright for moving this important motion. It is focused on providing information to Canadians living with multiple sclerosis.
MS patients, their families and caregivers must be able to make informed decisions about the management and treatment of this disease.
MS is a devastating disease that impacts many Canadians, yet it is one that we are still trying to understand. Access to timely and accurate information is critical. Getting that information to MS patients, their families and caregivers requires effective collaboration by many different partners.
The provinces and territories are responsible for health care delivery. Scientific experts carry out the research and make new discoveries. Health care professional associations and national voluntary organizations such as the MS Society provide support and resources and so much more. The federal government also plays an important role in funding research and in helping to ensure that Canadians are informed and that all partners are on the same page for the benefit of MS patients nationwide.
I am proud to say that the Government of Canada has already launched important initiatives that support the motion before us. I will expand on these initiatives shortly, but first I will take a few moments to highlight why this is an important issue.
MS is a disabling chronic disease of the central nervous system. The effects of it are significant. It affects vision, hearing, memory, balance, mobility. It remains unknown what exactly causes MS to happen. It is commonly thought that environmental, viral and genetic factors may be involved in triggering MS.
Canada has one of the highest rates of MS in the world. As many as 75,000 Canadians are currently living with this disease. Every year millions of Canadians are affected by MS personally, through a family member, a friend or a neighbour. As my colleague pointed out, MS usually strikes young adults, with women three times more likely to be diagnosed than men.
Anyone close to a person with MS knows how difficult it can be to live with this condition. MS patients and their families show tremendous courage in the face of such an illness.
There is no known cure for MS at this time, but we do know there are treatments that can help slow down the progression of the disease, control symptoms and help maintain quality of life. We know that good information and support are essential for people living with MS.
Advances in science, new studies and new treatments offer hope for patients. Obviously the most public and controversial issue is also referred to in this motion, and that is CCSVI.
As members may know, in 2009, Dr. Paolo Zamboni proposed that vein blockage, a condition he labelled chronic cerebrospinal venous insufficiency, or CCSVI, could be the cause of MS. He suggested that opening up the blocked veins in the necks of MS patients would relieve those symptoms. The liberation treatment, the Zamboni procedure, the CCSVI procedure are all terms used in the media to describe this medical procedure.
His procedure has had mixed results. Experts tell us that more research needs to be done on the safety and effectiveness of the Zamboni procedure, as well as to find out whether blocked veins are linked to MS at all.
This motion tries to bring together the information on this and other treatments and opinions in one place.
For people living with this crippling disease, new emerging information can be both confusing and exciting. Information about the Zamboni procedure is important to Canadians living with MS. This is in part why the motion is timely and significant.
Patients and their caregivers need to have the best information available. They need to understand what is known and what questions still need to be answered through scientific research. They need to know that their governments, MS organizations, researchers and doctors are working together to shed the most amount of light possible on treatment options. They need to be able to take comfort and security in the knowledge that they are not making decisions alone, that they are doing so with the best available evidence and information.
In collaboration with its many partners, the federal government is already helping Canadians living with MS to get that information through two key initiatives. First, the federal government is supporting the development of the Canadian MS monitoring system. Second, it has launched a clinical trial on the safety and efficacy of the CCSVI procedure. Both of these initiatives align with Motion No. 274.
I will speak first about the monitoring system. This system will help make available good information on the treatment of Canadians living with MS.
Canada's premier health information organization, the Canadian Institute for Health Information, is leading the monitoring system development in collaboration with the provinces and the territories, the Canadian Network of MS Clinics and the MS Society of Canada.
Some provinces have already moved on some of these issues. In mid-January the Government of Saskatchewan under Premier Brad Wall announced plans to spend over $2 million to cover costs for patients selected to participate in a two year clinical trial in Albany, New York. British Columbia has set up a B.C. CCSVI registry in the province. It is operated by the MS clinic at UBC Hospital at Vancouver Coastal Health. Alberta has set up what is called the Alberta Multiple Sclerosis Initiative, or TAMSI, in order to gather evidence to improve the understanding of CCSVI. Provinces are already beginning to move, and nationwide we are moving as well.
The goal is to measure and monitor the evolution and treatment of MS in Canada, including patients who have undergone CCSVI. Over the long term, this system will monitor patients' outcomes and help identify the most effective therapies in the treatment of MS. It will give Canadians living with MS, health care professionals, researchers and policy-makers better access to information on disease patterns and the use of treatments across Canada.
Specifically, CIHI is working with partners to put in place a national system that will collect patients' clinical and demographic information from participating MS clinics, including information on the CCSVI procedure. The monitoring system will operate according to CIHI's stringent privacy protection policies. Participation is voluntary. Information from this system will be available to patients through regular reports.
For the first time Canada will have a truly national source of data on MS that will support those living with MS as they work with their doctors to consider management and treatment options.
As the only voluntary organization in Canada that supports both MS research and services for people with MS and their families, the MS Society will play an important role in bringing patients' views to the table.
The other key federal initiative that will provide information on MS is a national clinical trial on the CCSVI procedure. There have been, and I think we all acknowledge this, mixed results from this process. The number of complications reported by Canadian MS patients who have undergone the CCSVI procedure abroad reinforces the importance of further research on this procedure. The procedure is not a simple one. We must ensure that it is safe and that it does and can work.
For this reason the federal government asked the Canadian Institutes of Health Research to put the clinical trial in place. The launch of a national clinical trial was based on scientific evidence and recommendation from CIHR's scientific expert working group on CCSVI, made up of domestic and international MS experts. The clinical trial is looking at the scientific evidence on the safety and efficacy of the CCSVI procedure. To this end, CIHR is putting the necessary measures in place to advance the clinical trial.
A competitive and rigorous peer review process to select the research team will be completed by the end of March 2012. There is a sense of urgency but we want to make sure that we protect Canadians as we move ahead.
Provinces and territories, along with U.S. and Canadian MS societies, have shown interest in conducting this important research.
The results of the clinical trial will provide information concerning the risks and benefits of CCSVI.
It will also provide Canadians, health professionals, caregivers and patients living with MS with new research evidence to better understand the condition, including this treatment option as well as other possible treatments.
Like many diseases, we cannot prevent MS and we do not yet know what causes it. Yet a significant percentage of Canadians must cope with its unpredictable, lifelong impact.
Canadians need to know there is help available for them to make informed decisions. That is the spirit of the motion. Consistent with Motion No. 274, both initiatives I have discussed are helping to fill information gaps related to multiple sclerosis.