REPORT OF THE COMMITTEE

The Standing Senate Committee on Social Affairs, Science and Technology has the honour to present its

FIFTEENTH REPORT

Your committee, to which was referred Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI), has, in obedience to the order of reference of Thursday, April 26, 2012, examined the said bill and now reports as follows:

Your Committee shares the concerns of the sponsor and proponents of the bill with regards to the high prevalence rates of multiple sclerosis (MS) in Canada. It is estimated that between 55,000 and 75,000 Canadians are living with MS, an incredibly complex, debilitating and unpredictable condition. More must be done to understand the disease and determine why Canadians, and certain populations of Canadians, are disproportionately affected. To this end, we encourage continued efforts on the part of the Government through the Canadian Institutes of Health Research Scientific Expert Working Group and the Public Health Agency of Canada’s Canadian Multiple Sclerosis Monitoring System.

Your Committee also shares the concern expressed by proponents of the bill that, in the early stages, some patients were refused medical treatment after having experienced complications resulting from venoplasty performed in other countries. However, it should be noted that provincial health authorities and the colleges of medicine took quick action to ensure that no Canadians would be denied medical treatment.

Despite these shared concerns, your Committee recommends that this Bill not be proceeded with further in the Senate for the reasons that follow.

Your Committee has heard that research to date is inconclusive as to whether or not chronic cerebrospinal venous insufficiency (CCSVI) is more common in MS patients than in the general population; that there has been a large discrepancy in the reported benefits and harms of using venoplasty in the treatment of CCSVI; and, that CCSVI may in fact be a condition that leads to symptoms independently of MS.

Your Committee heard from expert witnesses that the only appropriate way to determine whether or not to approve of venoplasty in the treatment of CCSVI in MS patients in Canada is through double-blind clinical trials. On September 28, 2012 the Government of Canada announced that a research team will undertake interventional Phase I/II clinical trials for CCSVI in persons with MS. The experts testifying before your committee indicated that the Canadian trials are amongst the best in the world. These trials render large parts of the bill unnecessary.

Your Committee also heard that a national registry, such as is proposed by Bill S-204, would be costly and provide little benefit in the understanding of CCSVI and patient outcomes resulting from venoplasty. The experts again stressed the need for double-blind clinical trials as are currently being undertaken at multiple sites in Canada and elsewhere around the world.

Finally, your Committee shares an overriding concern with the bill and believes that, in regards to CCSVI, MS, and health matters generally, the best path forward should be determined by science and medicine, not by Parliament.

Respectfully submitted,

KELVIN K. OGILVIE
Chair