I am writing to you to express profound concerns regarding the way in which your Office-and the Access to Information and Privacy Coordinator for the Canadian Institutes for Health Research (CIHR)–has handled my requests for information.
On May 3rd, I began asking what the process was for the drug review of Gilenya, an oral multiple sclerosis (MS) drug approved by your government on March 20th, 2011, and now under post-market review since February 27th, 2012. The drug has been linked to 11 deaths internationally yet is still being prescribed to Canadians with MS.
It is my understanding that your Office had to approve my request for information regarding both Gilenya and Tysabri, another MS drug which was fast-tracked by a previous Conservative government, despite the fact that it was known to cause a fatal brain infection, progressive multifocal leukoencephalopathy (PML). As of June, 2012, there are 258 confirmed cases of PML worldwide, and 54, or 21 percent, of those have died.
When information was not forthcoming from your Office, a technical briefing was offered on Gilenya, Tysabri, and off-label use of stents. When a date for the briefing was not forthcoming, I wrote a comprehensive order paper question regarding the two MS drugs.
On July 3rd, when I spoke with your Director of Parliamentary Affairs and Northern Policy, I was asked whether I would retract my order paper question regarding Gilenya and Tysabri in exchange for the earlier promised briefing. Such bullying tactics is unconscionable, in my opinion, and an affront to Canadian democracy.
I was very clear that I wanted answers to my order paper question and the promised briefing. It was then suggested that I needed to meet your Office half-way. I would like to know who meets the 55,000 to 75,000 Canadians who suffer with MS half-way, and who require real information on drugs which may be prescribed to them? They are still being prescribed a drug that has been linked to deaths and is “under review”, a process that your Office/officials are unwilling to define.
Your Office promised to get back to me yesterday, July 4th, 2012, and, needless to say, did not.
I have a further concern regarding transparency of information from your portfolio. Last year, I received three responses to ATIPS regarding chronic cerebrospinal venous insufficiency (CCSVI), one (almost 18 inches high with no page numbers) for which I waited 51 weeks, rather than the customary six to seven weeks. The ATIPs are extremely revealing of your government’s mishandling of CCSVI, as recently shown by Anne Kingston’s “The Silent Treatment” in the July 9th edition of Maclean’s.
I have previously requested information regarding: (1) the consensus workshop on ultrasound imaging used to diagnose blocked veins from September 2011, described in the briefing note of the Canadian Institutes for Health Research on February 13th, 2012; (2) all communication involving your Office regarding CCSVI between November 1st-December 15th, 2011 (i.e., the time concerning the first hour of debate of my PMB C-280); and (3) all communication involving your Office regarding CCSVI between January and February, 2012 (i.e., the time concerning the second hour of debate of my PMB C-280, and its vote).
I was surprised to receive nothing regarding the September 2011 meeting. The latter two responses to requests are equally disturbing; there is no correspondence with officials or the MS Society of Canada, as is the case in previous requests. That is, it appears that the responses are incomplete. In fact, it appears that either there has been a directive to put nothing in writing, or that my ATIP requests are being misinterpreted.
Because of these concerns, I called repeatedly to the Access to Information and Privacy Coordinator, Canadian Institutes of Health Research, and left numerous voicemail messages. After several weeks of calling, I have yet to speak to a person. As a result, I am informing you that I am making a complaint regarding the latter two ATIP requests; unfortunately the time has expired to make a complaint regarding the first request.
Finally, I note that it is one year and five days since you announced clinical trials for CCSVI, which have yet to begin. Time is of the essence here. In the past year, there will have been three new MS diagnoses daily (for a total of almost 1,100 new MS patients in Canada), the 55,000 to 75,000 Canadians with MS will have worsened, on average, by one EDSS score, and more than 400 Canadians with MS will have died.
When will you provide information on the Gilenya review? When will the ethical review for the CCSVI clinical trials announced on April 18th, 2012 be complete, and when will the trial begin? Canadians with MS deserve an answer, and all Canadians need to know that their healthcare system has not been compromised by partisan politics.
I look forward to your response,
Kirsty Duncan, M.P. Etobicoke North