The MS Society of Canada and the Canadian Institutes of Health Research (CIHR), aided and abetted by the Federal Health Minister, strike again at Canadians with MS and their families. The CIHR’s non-experts – those individuals with no experience in testing and treating CCSVI – have developed criteria for research and will publish the call for research proposals on November 30 on the CIHR website. The research proposal will focus on a Phase I clinical trial intended to establish the safety of balloon angioplasty.
The MSSC and CIHR expect to announce the winner of the first stage of the CCSVI sweepstakes in March 2012. The winner will then have to obtain Research Ethics Board approval and possibly by September 2012 – or later – the winner may actually be able to consider recruiting contestants for the second stage of the CCSVI sweepstakes. We offer no apology if these words are offensive.
CCSVI Ontario is deeply offended by the fact that when the Phase I trial actually begins another 400 Canadians with MS will have died. At the diagnosis rate of three per day, another 1,095 Canadians and their families will have been told that they have MS.
CCSVI Ontario is deeply offended that an unnecessary Phase I clinical trial is taking place at all. If the safety of balloon angioplasty is in question for Canadians with MS, then the safety of that procedure for all Canadians must be challenged and must be questioned. Safety trials have already been conducted and published in peer reviewed journals (e.g., Mandato et al, Journal of Vascular Interventional Radiology, Vol. 22, Issue 3, Supplement, Page S4, (http://www.jvir.org/article/S1051-0443(11)00005-4/fulltext).
CCSVI Ontario is deeply offended that a Phase II (efficacy) clinical trial is deemed necessary. If anyone – MSSC, CIHR, Health Canada anyone – had been collecting data on Canada’s medical refugees (those who have been treated for CCSVI outside Canada) since January 2010, knowledge about the efficacy of the treatment for CCSVI would be well advanced.
CCSVI Ontario is deeply offended by the waste of time and money on unnecessary safety and efficacy trials.
CCSVI Ontario is deeply offended by the refusal of the MSSC and the CIHR to have experts in CCSVI leading the development of the research criteria for clinical trials. CCSVI experts have been deliberately excluded from the process. We have to question the validity of this whole exercise when it is led by non-experts, some of whom have publically denounced CCSVI and many of whom have severe conflicts of interests given their financial relationship with large pharmaceutical companies.
CCSVI Ontario strongly supports Bill C-280, a Private Member’s Bill tabled in the House by Dr. Kirsty Duncan on September 21, 2011. Bill C-280 is a clear framework for establishing a national strategy for CCSVI. Bill C-280 will be debated for Second Reading on November 30. Will the Harper Government do the right thing and support the Bill? Will the Official Opposition do the right thing and support the Bill? Will the Liberal Health Critic learn the issues involved with CCSVI by November 30 and be able to coherently support the Bill?
