Kirsty Duncan PhD MP

YOUR SUCCESSES Awareness in 2010 Support for families Mobilization and formation of CCSVI groups across the country Research and liaising with doctors in Canada and internationally Media outreach Advocacy, advocacy, advocacy Reversal of government’s position on clinical trials and registry

ADVOCATING FOR THOSE LIVING WITH MS CCSVI Conference at McMaster University (February, 2010) Open letter to Minister of Health (May, 2010) Request for emergency debate (May, 2010) Neurological parliamentary sub-committee has four meetings on CCSVI with Drs Zamboni, Simka, and McDonald (May-June, 2010) Four-hour take-note debate in Parliament (June, 2010) Communications with 1500 Canadians living with MS (May, present): written questions to government; petitions; and meetings with patients across the country Breakfasts for all Members of Parliament and Senators with leading North American doctors and patients (2011-present) Bill S-204 (in the Senate) and Bill C-280 (in the House of Commons) and calling for a national strategy for CCSVI (June and September, 2011)

POLITICAL PROCESS FAILED MS PATIENTS FOR A YEAR Canadian Institutes of Health Research and MS Society of Canada meeting (August, 2010) Federal-Provincial Territorial Ministers of Health meeting (September, 2010) Scientific Expert Working Group Government reverses position, and commits to an MS registry (March, 2011) Government reverses position, and commits to clinical trials (June, 2011) Government announces Phase 1/11 trials, and Bill C-280 has first hour of debate (November, 2011) Bill C-280 has second hour of debate (February, 2012)

FEBRUARY-MARCH, 2012 Documentary, “MS Wars: Hope, Science and the Internet” airs (February 9 th, 2012) Minister of Health issues a briefing (February 10 th, 2012) for February 13 th, 2012 (14 hours before my breakfast with Drs Hewett and McGuckin) Bill C-280 has second hour of debate (February 15 th, 2012) M-274 has second hour of debate (February 16 th, 2012) Minister of Health sends letter discrediting Bill C-280 to all MPs (February 17 th, 2012), and a reminder to all MPs of her letter (February 27 th, 2012); I respond to all MPs, and set the record straight President of CMA sends a letter to me February 27 th, 2012 explaining organization is not supportive of Bill; I send my response to him February 28 th, 2012 Minister of Health shares CMA letter with her caucus to dissuade them from voting for Bill C-280 (February 29 th, 2012); I send a letter to all MPs explaining flaws in CMA letter Bill C-280 defeated by six votes, and M-274 passes (February 29 th, 2012) President of CMA meets with Senator Cordy and myself (March 6 th, 2012); I follow-up meeting with a letter (March 12 th, 2012)

CMA MEETING (MARCH, 2012) CMA letter was used behind closed doors to persuade Conservative members from voting for Bill C-280; no polling was done of 76,000 members Recognized discrepancy in how CCSVI and kidney denervation are being considered Unaware of plight of patients returning from treatment Unaware of safety studies

NEW BILL AND MOTIONS Bill C-410, An Act to establish a Pan-Canadian Strategy for Chronic Cerebrospinal Venous Insufficiency (March 26 th, 2012) Motions M (May 2 nd, 2012)

DR. RUBIN’S ARTICLE Dr. Rubin is the fourth author on an article, ‘The “Liberation Procedure” for Multiple Sclerosis: Sacrificing Science at the Altar of Consumer Demand’ “Although some would agree that a randomized, blinded clinical trial is necessary to settle the issues raised in the controversy surrounding this procedure, others would agree that not all controversial procedures require such an expensive approach. Funding trials of a procedure that has minimal basis in rational, empirical knowledge seems questionable. At this point, the procedure rests in the same category of “medical” management as chelation therapy for atherosclerosis (which failed just such a trial), treatment of breast cancer with laser photodynamics, Laetrile for cancer, and other unproven therapeutics found in the retail sphere. When consumerism and patient advocacy groups pressure the scientific and political establishment, reasonable accommodation is warranted. The question is, What is reasonable? It may be that the operators believe in the therapy as much as the understandably desperate patients. The subsidiary question is, When is healing ‘faith healing’?” The first author of the paper, Dr. Michael Brant-Zawadzki, is being credited with prompting the FDA warning Members of the CCSVI community are concerned that a parallel process is being created—one in which the government says it will undertake clinical trials, while a key player appears to work actively to prevent this Dr. Haacke, Dr. McDonald, and Dr. Zamboni were not included in the August 26 th, 2010 joint CIHR-MS Society meeting. The explanation given for their not being included in the meeting was that their work would be discussed, and including them might bias the discussion. Now, we have a member of CIHR’s expert working group publishing and questioning clinical trials. Clearly, his position may bias the discussion.

WE MUST CONTINUE TO FIGHT “I am being buried alive. Don’t forget me. I’m still in here, trapped in a body that can’t move, that can’t talk. But I think and I feel just like you do, and I hurt. I hurt physically and mentally (Canadian living with MS). ”