Thank you.
I have multiple sclerosis and so does my sister--and so do, probably, 75,000 Canadians. I'm not here to talk about multiple sclerosis; I'm here to talk about a condition called CCSVI, or chronic cerebrospinal venous insufficiency. I'm here to make sure this committee is aware that there's an emergency going on in this country.
There are a few things you should know about CCSVI in Canada today. Studies have been published indicating that more than half of those living with MS are also living with a serious vascular condition. The math is not difficult. At a conservative estimate, more than 40,000 Canadians are likely living with this vascular condition.
In Canada right now, if you have multiple sclerosis you cannot access testing for this serious vascular condition, despite the fact that the testing is an insured procedure. In Canada, if you have medical documentation that you have this condition, you cannot receive a consultation from a vascular specialist if you also happen to have multiple sclerosis, again, despite the fact that these are insured services. People have been refused in every province. I have personal experience of being refused access to a vascular specialist.
With all due respect to Dr. Freedman and the rest of the neurologists who make up the medical advisory committee for the Multiple Sclerosis Society of Canada, I do not want a neurologist weighing in on my medical treatment of a vascular condition, nor do I want my dermatologist to be weighing in on that. I want the access to a vascular specialist to advise me about my vascular health.
Some quick information about CCSVI. It is a vascular condition caused by malformed and severely narrowed or blocked jugular and azygos veins. This is not a new condition. Chronic venous insufficiency is a well-known medical problem in Canada. There are protocols in place to test for this and there are procedures in place to treat this.
Veins that are narrowed and causing damage to other organs such as the heart, liver, and kidneys, are treated by balloon angioplasty all the time in Canada. The only difference with CCSVI is that the organ that is being damaged by blocked veins is the brain. Procedures to assess and to treat this condition are established and are commonly provided to patients who don't have multiple sclerosis.
Some of the symptoms of CCSVI include increased vascular pressure and compromised circulation to the brain. Symptoms from this vascular condition include headaches, coordination and cognitive difficulties, and fatigue. All of these are symptoms that are experienced by persons with multiple sclerosis.
Diagnosis is done by means of ultrasound, MRV, and angiogram. There's nothing experimental or dangerous about any of these investigative procedures. They're done every day in Canada to screen for various medical problems. Treatment is done by way of a safe, common, outpatient procedure called balloon angioplasty. A small catheter is passed in through veins and a balloon inflated to push the narrowed parts of the veins out. The procedure is done routinely in Canada on veins in various parts of the body, notably veins that drain the kidneys, liver, and heart. Patients who receive dialysis have been benefiting from this procedure for many years.
I feel there's a strong risk associated with not being treated when you have CCSVI. Approximately 750 people have received treatment for this around the globe and there has not been one negative result of having treatment for CCSVI with balloon angioplasty. On the risks associated with not treating CCSVI, well, we all know what the risk is. Those of us with multiple sclerosis have been experiencing progressive and irreversible damage to our brains.
I have some recommendations to make. I have some evidence.... I've been talking to people across Canada who are experiencing an inability to receive screening, treatment, and even an inability to get a consultation with a vascular specialist. My GP referred me to a vascular specialist, but he refused to take my referral and told me I had to go to a second specialist in a non-related field. He said he would not accept me for a referral unless I had a referral from a neurologist.
I'm going to skip quickly to my recommendations. Before deciding on committing $10 million to research, I think the government and Health Canada need to advise the provincial health authorities today that it is a violation of the Canada Health Act to withhold vascular medical services from a group of persons based on the fact that they have MS. We demand to have vascular specialists determine if we are eligible for insured services. Safe protocol is in place for investigational procedures and for balloon angioplasty. Stop denying these vascular services to persons with MS.
Today the government and Health Canada need to tell the Canadian and provincial medical associations that they must immediately direct their members to cease discrimination against persons with MS by denying them access to the services of vascular specialists, to establish screening, and to ensure treatment processes, even if we do have MS.
We want this committee to take immediate action to ensure that those most affected are offered immediate screening and treatment on compassionate grounds while tasking the researchers of this committee to undertake a review of research that has already been done, protocols that are already in place for screening, and protocols for treatment--