| Q-12542 — March 21, 2013 — — With regard to access to information requests ATI 2012-005 and 2012-006 submitted by Ms. Kirsty Duncan, M.P., for which a response was sent on February 22, 2013: (a) on what date were the two submissions made and what was the timeframe for completing the response; (b) why were the two requests returned together, some parts featuring page numbers and others not; (c) how many updates have been received from the Canadian Chronic Cerebrospinal Venous Insufficiency (CCSVI) Systematic Review Group to date, (i) how many studies in total have met the criteria for inclusion in the review, (ii) why does the group not identify, for each complication, the number of cases per number of people treated, (iii) why does the government not provide, for each serious complication listed, the number of cases per population treated; (d) on what date was the request for proposals for the CCSVI trials first drafted, (i) how may drafts were undertaken and on what dates, (ii) how many people worked on these drafts, for how many hours, and at what average cost to taxpayers, (iii) on what date did the provincial and territorial Ministers of Health review the draft, (iv) what was the feedback provided; (e) why, on November 22, 2012, was the amount available for the CCSVI trials in the range of $3-5 million, (i) what is the significance of the expression "should we just fudge a number"; (f) how was the decision made to earmark $3 million for the CCSVI trials and on what date was the decision made; (g) on what date and at what time was the Request for Applications (RFA) announcement for clinical trials published on the Canadian Institute for Health Research (CIHR)'s website, (i) on what date and at what time was Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), scheduled to be debated; (h) why was there a change by the President's office at CIHR that the commitment from the CIHR be $2 million with the balance to come from partners, i.e. the Multiple Sclerosis Society of Canada (MSSC) and ''relevant provinces and territories'', and what were the relevant provinces and territories referred to; (i) how many versions of the Multiple Sclerosis (MS) research update deck were produced and on what dates, (i) how many people worked on these drafts, for how many hours, and at what average cost to taxpayers, (ii) when was the final draft presented, and for what purpose; (j) how many government MPs has the Health Minister met with on the issue of CCSVI/MS since May 2010, and how many government MPs have the Minister's officials met with on the issue of CCSVI/MS since May 2010; (k) how many draft speeches were prepared for government MPs for Motion M-274, (i) how many versions of each speech were produced and on what dates, (ii) how many people worked on these drafts, for how many hours, and at what average cost to taxpayers, (iii) how many government MPs read these prepared speeches; (l) regarding the briefing note for Dr. Alain Beaudet`s meeting with Dr. Jeffrey Turnbull, President of the Canadian Medical Association (CMA) on December 21, 2010, why did a recommendation in the briefing note state "The possibility of the CMA producing a position statement regarding patient access to physicians for patients who have received the Zamboni procedure", and "The fact that CIHR would be willing to provide the CMA with any necessary support in order to produce this statement", when the Scientific Expert Working Group (SEWG) stated that, "media reports that have stated that Multiple Sclerosis (MS) patients who experience complications after Chronic Cerebrospinal Venous Insufficiency (CCSVI) treatment are not being seen by Canadian doctors are not justified"; (m) regarding the briefing note for Dr. Alain Beaudet's meeting with Paul Emile Cloutier, CEO of the CMA on January 31, 2012, which shows CMA President Haggie testified before a Senate committee on Dec 2, 2011, and a House committee on October 17, 2011, (i) did President Haggie bring up at either committee meeting CMA's lack of support for either bills C-280 or S-204, (ii) why was President Haggie unaware of the lack of follow-up care for MS patients treated for CCSVI when President Turnbull was made aware, (iii) why was there a hiatus in correspondence with the CMA, (iv) for how long was the hiatus, (v) when did the hiatus end; (n) regarding the MS-Societies' seven funded studies regarding CCSVI, why was there, at the 18-month mark, an inquiry into the training of the teams, (i) which of the teams were trained by Dr. Zamboni and which individual members of each team were trained by Dr. Zamboni, (ii) which of the teams were trained by Dr. Zivadinov and which individual members of each team were trained by Dr. Zivadinov, (iii) which teams were trained by neither or by another team; (o) how many people worked on drafts of prepared speeches for bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), for how many hours, and at what average cost to taxpayers and how many government MPs read these prepared speeches; (p) how many people worked on drafts of prepared speeches for bill S-204, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), for how many hours, and at what average cost to taxpayers, (i) how many government Senators read these prepared speeches; (q) on what dates was the Canadian MS Monitoring System to be ready to receive data and when did the system start collecting data; (r) is the government's position regarding MS patients’ input into the Scientific Expert Working Group (SEWG) in accordance with the statement "CIHR's Scientific Expert Working Group includes researchers with expertise in different disciplines such as neurology, vascular surgery and vascular imaging who are treating MS patients and who will be bringing their patients' concerns to the table" (ATIP); (s) is it still the government's position that "Benoit's motion speaks far more to PHAC's monitoring system than anything we are doing on the trials front" (ATIP); (t) how many draft MS slide decks were prepared for Senatorial Caucus, (i) how many versions of each deck were produced and on what dates, (ii) how many people worked on these drafts, for how many hours, and at what average cost to taxpayers, (iii) who presented the deck to the Senatorial Caucus; (u) is the government's position as per the information sheet provided when Dr. Alain Beaudet wrote to the Colleges of Physicians on February 29, 2012 which says, "MS patients who have received a venous procedure abroad should be reassured that they will be continued to be cared for by their physicians and/or regular MS specialists as any other patients?” or is it that follow-up care is primarily the responsibility of provincial and territorial governments to ensure that no Canadian is denied post-treatment and follow-up care (ATIP) and what role does the federal government have if patients are being denied follow-up care by a province or territory; (v) why did the government ask the Multiple Sclerosis Society of Canada (MSSC) on February 7, 2012 about approved venous angioplasty; (w) is it still the government's position that the MS documentary that aired on the Nature of Things on February 9, 2012, was "balanced and fair"; (x) why does a February 16, 2012 e-mail list MS patients who are also CCSVI advocates; (y) is the government's position regarding imaging for CCSVI in accordance with the International Society for NeuroVascular Disease (ISNVD) venography statement and consensus document and, if not, why not; and (z) does the government know how many Canadians are actually impacted by MS, (i) if so, what is the number, (ii) if not, why not; and (aa) when Dr. Alain Beaudet wrote to the Colleges of Physicians on February 29, 2012, (i) why was the list of 11 recent peer-reviewed publications provided not a comprehensive list, (i) why did the list not specify what were positive and negative studies, and what imaging techniques were used, (ii) for MS patients who are denied follow-up care, what recourse and resources do they have, (iii) what is the position of the Scientific Expert Working Group concerning MS patients who have been denied follow-up care, such as Roxanne Garland? |