Industry committee  Thank you, Mr. Chair. Minister, while in opposition, you were a vocal advocate of a controversial CCSVI treatment. Its founder, Dr. Zamboni, claims that it improves the lives of patients with MS by widening their veins to allow for better blood circulation to the brain. You presented Bill C-280 in support of a national CCSVI strategy and claimed to have attended seven conferences on CCSVI, presented at three, and spent close to 100 hours reviewing MRIs and watching the procedure.

Industry committee  Has your opinion on CCSVI changed?

Amyotrophic Lateral Sclerosis  Furthermore, some of the false hopes that are given to certain communities because of the so-called miracle treatment are despicable. We only have to think of the recent example with those diagnosed with MS and CCSVI treatment. Having said this, I want to applaud the work Jeff Perrault of Adaptive Canuck ALS Foundation has done and his determination to advocate for the rest of his life for what he believes is right.

Petitions  Speaker, today I present 10 petitions on chronic cerebrospinal venous insufficiency. It has been five years since people began travelling overseas for this treatment for CCSVI. Canadians with multiple sclerosis are wondering when there might be an update on the government's clinical trials and MS registry. The petitioners are asking the government to proceed to phase 3 clinical trials.

Petitions  Speaker, I rise today to present two petitions on behalf of my constituents. The first is a petition asking for equal access to CCSVI treatment for Canadians living with multiple sclerosis. These constituents want to encourage the federal government to work with the provinces and territories so that this treatment is swiftly accessible across the country.

Petitions  Speaker, it has been almost five years since Canadians began travelling overseas for treatment for chronic cerebrospinal venous insufficiency, and almost five years since they have gone without follow-up care following treatment for CCSVI. Canadians with MS are wondering when there might be an update on the government's clinical trials and when there might be an update on the government's MS registry. The petitioners call upon the Minister of Health to undertake phase III clinical trials on an urgent basis in multiple centres across Canada and to require follow-up care.

Multiple Sclerosis  My brother, who is 60, is not confident that a cure will be found in his lifetime. He and others are upset with how the investigation into CCSVI, a possible therapy, is going. There are issues of co-operation with other researchers in the United States. One can understand their frustration as this disease progresses. What are the things we can do to help MS victims and their families while a cure is being found?

Questions Passed as Orders for Returns  With regard to the development and operation of the Canadian Multiple Sclerosis Monitoring System (CMSMS) announced in March 2011: (a) what are the government's baseline assumptions for the CMSMS, (i) how many Canadians live with MS according to the government’s source, (ii) what is the government's source; (b) what have been the challenges in developing the system between March 2011 and today, (i) how has each challenge been overcome, (ii) what are the achievements to date, (iii) what milestones has the government planned between December 2013 and December 2015 and by what dates; (c) what is the cost of developing the system, broken down by costs to date; (d) how much money did the Canadian Institutes for Health Research (CIHR) contribute to the development of the CMSMS, (i) were there any other partners involved in the development of the system, (ii) if so, who are they, (iii) what has each contributed; (e) who was involved in the design and development of the CMSMS, (i) from what departments/institutions were they, (ii) were potential conflicts of interest declared and, if so, how; (f) what health information does the CMSMS track, specifically, with regard to (i) chronic cerebrospinal venous insufficiency (CCSVI), (ii) impacts of CCSVI treatment, including but not limited to use of the following scales, Expanded Disability Status Scale, Modified Fatigue Impact Scale, Multiple Sclerosis Impact Scale, and Multiple Sclerosis Quality of Life Inventory, (iii) pharmaceutical treatments for MS, (vi) adverse drug reactions by MS drug; (g) who is/was overseeing pilot testing, (i) who is/was responsible for ensuring that patient information is/was protected, (ii) who is/was responsible for the integrity of the results; (h) were ethical reviews for pilot testing necessary and, if so, on what date did each pilot site pass ethical review; (i) when is pilot testing expected to/did it take place and at which MS clinics will/did testing occur; (j) on what date did recruitment of patients begin for each pilot site and what methods are/were used to recruit patients; (k) how many MS patients are/were recruited for each site and how is/was consistency ensured across sites; (l) what information are/were MS patients given about the pilot testing and how their information will be/was protected and used, (i) is/was participation voluntary, (ii) can/could patients pull out of the testing at any time, (iii) what health information is/was being tracked at each pilot site and at what time intervals, (iv) what health information is being/was tracked about CCSVI and impacts of CCSVI treatment, including but not limited to use of the following scales, Expanded Disability Status Scale, Modified Fatigue Impact Scale, Multiple Sclerosis Impact Scale, and Multiple Sclerosis Quality of Life Inventory, (v) what health information is/was being tracked about pharmaceutical treatments for MS, (vi) what adverse drug reactions are/were being tracked by MS drug; (m) what is the relationship between the clinical trials and the CMSMS, (i) will data be transferred from one to the other and, if so, how will this happen, (ii) when will it begin, (iii) who will be responsible for the oversight; (n) what are the estimated operating costs annually for the CMSMS and at what sites is/will the CMSMS operating/operate; (o) how much money is/will the CIHR contributing/contribute to the operation of the CMSMS, (i) are/will there be any other partners in the operation of the CMSMS and, if so, (ii) who are they, (iii) what will they each contribute; and (p) how will the results of pilot testing be communicated to patients, the medical community and the general public and by what date is reporting expected to occur?

Petitions  Mr. Speaker, I am pleased to present this petition on CCSVI. It has been four years since Canadians began travelling overseas for treatment for CCSVI. Canadians with MS are wondering how the government is going to judge the radically different CCSVI data from the east and west of Canada, and when there might be an update on the government's MS registry, which was announced in March 2011.

Petitions  Mr. Speaker, I am pleased to present this petition on CCSVI. It will be four years in January since Canadians began travelling overseas for treatment for CCSVI. Canadians with MS are wondering how the government is going to judge the radically different CCSVI data from the east and west of Canada, and when there might be an update on the government's MS registry which was announced in March 2011.

Questions on the Order Paper  With respect to the chronic cerebrospinal venous insufficiency (CCSVI) clinical trial being undertaken by Dr. Traboulse: (a) what milestones are reportable to the government, (i) on what date(s) is reporting expected to occur, (ii) how will this information be communicated to patients, the medical community, and the general public; (b) on what date did each of the trial sites pass ethical review; (c) on what date did recruitment of patients begin for each of the trial sites; (d) how many patients with multiple sclerosis (MS) are being recruited for each site, and how is consistency in diagnosis and treatment being ensured across sites; (e) who is performing the diagnoses for CCSVI for each site, (i) how is the diagnosis being performed, including, but not limited to, ultrasound and venogram, (ii) how many diagnoses has each person undertaking the diagnosis at each site performed prior to the study, and by whom was each person trained; (f) who is performing the procedures for each site, (i) how is the procedure being performed, including, but not limited to, anesthetic, balloon size, (ii) how many procedures has each person undertaking the procedure at each site performed prior to the study, and by whom was each person trained; (g) what are the selection criteria for the trial, including, but not limited to, type of MS, Expanded Disability Status Scale (EDSS) score, venous abnormality/malformed valve/stenosis, mobility, (i) how do these criteria compare with the international literature, (ii) with how many international studies to date will the selection criteria be analytically comparable; (h) if both progressive and relapsing-remitting forms of MS are to be examined in the trial, how will statistical significance be ensured given that 50 of 100 patients will undergo a “sham” procedure, 25 patients will have a progressive form of the disease, and 25 will have a relapsing-remitting form of the disease, and will people with both primary progressive and secondary progressive forms of the disease be included, and if so, how will statistical significance be ensured; (i) given that research has shown numerous venous abnormalities in the head, neck, and chest of MS patients, (i) how will statistical significance be ensured if there are only a limited number of patients, but multiple types of venous or valvular abnormality, (ii) how will a venous stenosis be measured (e.g. diameter, size); (j) what outcomes will be measured, including, but not limited to, EDSS, Modified Fatigue Impact Scale, Multiple Sclerosis Impact Scale, and Multiple Sclerosis Quality of Life Inventory, and at what time scales; (k) will patient-reported quality of life scores be included, and if so, what is the specific methodology; (l) what specific follow-up care will patients undergoing the “sham” procedure and treatment receive, and at what specific time periods; (m) if patients received the “sham” procedure, within what time period will they receive treatment; (n) how will the results of this study be interpreted within the growing international body of research, (i) to how many studies will this study be compared, (ii) to how many studies will this study be directly comparable; (o) what long-term follow-up will those enrolled in the trial receive and for what time period; (p) what is the cost of the trial, and what are each of the partners contributing, including, but not limited to funding, equipment, expertise, pharmaceutical products; (q) what is the cost of each diagnosis, (i) what is the cost of each “sham” procedure, (ii) what is the cost of each procedure; and (r) who is overseeing the trial, (i) the safety of the patients, (ii) the integrity of the results?

Questions on the Order Paper  It is important to note that all of the 100 MS patients participating in the trial will receive the CCSVI procedure at some point. During the first year of the trial, half of the patients will receive the CCSVI procedure, while the other half will undergo a placebo procedure. In the second year, MS patients who received the placebo procedure in the first year will undergo the CCSVI procedure, while those that received the CCSVI procedure in the first year will undergo the placebo procedure.

Petitions  Mr. Speaker, the debate concerning CCSVI should be based on science, evidence, and improving the quality of life for Canadians with MS, who wonder how the government is going to judge the radically different CCSVI data from the east and west of Canada.

Petitions  Mr. Speaker, the debate concerning CCSVI should be based on science, evidence, and improving the quality of life for Canadians with MS, who wonder how the government is going to judge the radically different CCSVI data from the east and west of Canada.

Petitions  Mr. Speaker, I am pleased to present three petitions on CCSVI. Canadians with MS want to know when Conservative MPs and senators learned of their government's position to kill both the House and Senate bills for CCSVI. The decision was taken by February 6, 2012.