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Thursday, December 1, 2011 6:39 PM | CCSVI in MS Toronto Volg link

With respect to the planning for and the execution of the joint meeting of the Canadian Institutes for Health Research (CIHR) and the Multiple Sclerosis Society of Canada (MSSC), on August 26, 2010:

(a) what were the most recent statistics CIHR had regarding MS as of August 26, 2010, and had CIHR received, internally or externally, any request to update the figures beforehand;

(b) what criteria were used to identify which international experts in chronic cerebrospinal venous insufficiency (CCSVI) should be invited to the August 26, 2010, meeting, and, (i) was Dr. Mark Haacke a candidate for invitation and, if so, why was he not invited, (ii) was Dr. Marion Simka a candidate for invitation and, if so, why was he not invited, (iii) was Dr. Paolo Zamboni a candidate for invitation, and, if so, why was he not invited, (iv) which invitees had expertise or experience administering CCSVI treatment, (v) why did the criteria not exclude from participation individuals who had publicly criticized the validity of CCSVI, (vi) what was the rationale for “[keeping] the international participation in focus” (Answer to Access to Information Request ATI 2010-006);

(c) what CIHR experts were consulted regarding CCSVI/MS prior to the August 26, 2010, meeting, and, if any CIHR experts were consulted, what recommendations did they make, including any recommendations concerning large multi-centre clinical trials;

(d) what briefings did the Minister of Health provide to members of the Conservative caucus regarding CCSVI or MS prior to the August 26, 2010, meeting, (i) what were the dates of any briefings, (ii) what information was provided;

(e) did provincial governments express “mounting pressure” (ATI 2010-006) from the public regarding the need for clinical trials and treatment for CCSVI, and, if so, which provinces expressed any such pressure;

(f) did any of the provinces and territories communicate an interest in partnering with the federal government on a “potential initiative” (ATI 2010-006), and, if so, what were the details of the “potential initiative” (ATI 2010-006);

(g) by what date and by whom was CIHR made aware of the history of the theory of abnormal vasculature in MS dating back more than 100 years; (

h) what was CIHR’s rationale for focusing its literature review on CCSVI and for excluding from consideration literature on the theory of abnormal vasculature in MS and why did CIHR decide to have students work on this literature review;

(i) what criteria did the CIHR use to determine which of the 19 studies identified through PubMed (July 2010) it would include in its review of existing literature and research;

(j) on what date did the President of CIHR first state that he would be pleased to provide for a randomized control trial on CCSVI treatment for review at the next grant competition, and (i) did the President ever speak to the “F/P/T” (ATI 2010-006) regarding the need for randomized clinical trials;

(k) what lobbyists and/or pharmaceutical companies asked for a meeting with the Minister of Health’s office prior to August 26, 2010, to discuss a new oral MS drug and CCSVI treatment, and (i) what lobbyists and/or companies were “well respected” (ATI 2010-006) and had “a solid reputation with the MSSC” (ATI 2010-006);

(l) why did CIHR change its position in March 2011 regarding an MS registry, and how was this change possible, given CIHR’s previous statements to Dr. Carolyn Bennett and Dr. Kirsty Duncan that the creation of such a registry “was outside” their “mandate” (ATI 2010-006);

(m) did CIHR have money available for funding clinical trials related to CCSVI, (i) was CIHR “overcommitted” (ATI 2010-006), (ii) if so, by how much, (iii) could CIHR have found “some money” (ATI 2010-006), (iv) when could money have been available;

(n) prior to the August 26, 2010, meeting, how many provinces and territories “expressed some level of support for a clinical trial” (ATI 2010-006);

(o) concerning the e-mail exchange of August 24, 2011, contained in the response to ATI 2010-006, did the Minister of Health "have authority or [did] she need to go through cabinet" (ATI 2010-006);

(p) were abnormal veins discussed in any of the August 26, 2010, presentations, and, if so, (i) which presenters covered this issue, (ii) what historical papers were referenced;

(q) was iron accumulation in MS brains discussed in any of the August 26, 2010, presentations, and, if so, (i) which presenters covered the issue, (ii) what historical papers were referenced;

(r) did any of the presentations explore a possible relationship between abnormal brain veins and tissue damage in MS, and, if so, (i) which presenters covered the issue, (ii) what historical papers were referenced;

(s) what criteria were used or what process was followed to prepare the Summary Report of the August 26, 2010, meeting and, specifically, why was no reference made in the Summary Report to historical papers discussing abnormal vasculature and iron accumulation; and

(t) does the Summary Report of the August 26, 2010, meeting disclose potential conflicts of interests of the attendees, and, if not, why was this information not included?

Kirsty Duncan