Kirsty Duncan, MP

Statement in Climate Change Conference in Bangladesh

     Children playing on Bangladesh streets invite the government “to taste climate change”. It is salty, they explain, because salt water is already inundating water supplies.

Kirsty Duncan on CTV News Channel speaking about C-280

http://www.ctv.ca/CTVNews/Health/20120229/ccsvi-private-members-bill-120229/#.T1TqUj9Hl6M.link

My Letter in Response to the Canadian Medical Association (CMA)’s Correspondence Regarding Bill C-280

Dear President Haggie,

Hello, and thank you for your correspondence of February 27th, 2012.

I appreciate the concern that you have expressed, but am somewhat surprised that you would wait until two days before a vote on Bill C-280 before contacting me via email and fax-perhaps a phone call would have been helpful to have a real discussion, and I would absolutely welcome this–, particularly when the Bill was first read into the House on September 21st, 2011, had its first hour of debate on December 8th, 2011, and its second hour of debate on February 15th, 2012.

I am also surprised by the wording that “ultimately, we remain concerned that”, as this is the very first correspondence I have had from the CMA.

We absolutely agree on the need for evidence-based medicine, and hence, why Dr. Bennett and myself called for clinical trials and a registry for CCSVI in May 2010. Ten and thirteen months later, the government reversed its position and consented to a registry and clinical trials respectively. While the registry was announced in March, 2011, data collection will not actually begin until September, 2012-that is, 33 months after MS patients began travelling overseas for diagnosis and treatment of CCSVI. If the science was undertaken earlier as requested, and data collection begun, answers would be available today regarding how MS patients responded at 1 month, 3 months, 6 months, 12 months, and 24 months after treatment for CCSVI.

We also agree on the importance of arms-length scientific decision making. But what happens when the process fails Canadians, as the process failed MS patients for over a year (during which time, some 400 Canadians would have died of MS, and patients would have worsened, on average, by one EDSS score)? For example, the government failed to invite the leading international experts in CCSVI to a joint meeting of the CIHR and the MS Society of Canada on August 26th, 2010; however, those who had publicly criticized the validity of CCSVI were allowed to participate in the meeting, despite their bias. The government also convened an expert group with no experts in the imaging and treatment of CCSVI; and it failed to attend international scientific conferences, review a large body of research extending back to 1839, and undertake site visits to labs and operating theatres.

As a former health studies professor and research scientist, I strongly believe I have a duty to speak for those who cannot, to listen to those who are awaiting CCSVI treatment, to those who have had treatment, and to learn as much as I can about the science.

I treated the issue as I would any scientific question; I went to the experts, I spent close to a hundred hours reviewing MRIs and watching the procedure, communicated with 1500 Canadians with MS, went to seven of nine international CCSVI conferences, and presented at three.

We do disagree regarding Bill C-280 being duplicative of the efforts currently underway. First, follow-up care remains a problem today, and has not been adequately addressed.  Although I have been asking since the summer of 2010 about follow-up care, patients are still being denied appointments and tests are being cancelled. Drivers’ licences are even being threatened if patients dare ask about pulling-out of drug trials. Second, Phase l/ll trials, like those proposed by the government, will not put Canada at the forefront of international research, as three FDA-approved Phase ll clinical trials are currently being undertaken in the United States.

Third, funding for trials has still not been provided.  And there has been no word whether federal-sponsored clinical trials will recruit an adequate number of patients to demonstrate clinical efficacy at the 0.05 level of significance, or whether or not the number of patients will merely reflect the amount of money being made available by the Government (i.e., a backward calculation)?

Fourth, there is no expert advisory panel in place who have been or are actively engaged in imaging or treating individuals with CCSVI.

Finally, I think it is important to point out eight provinces and territories expressed interest in clinical trials over a year ago in the summer of 2010. Because of a lack of federal action, several provinces have undertaken their own efforts. I would very much like to discuss the contents of this letter with you, so please do not hesitate to contact me.

Yours very truly,

Kirsty Duncan PhD MP

Etobicoke North

Kirsty Duncan Statement on CCSVI

Mr. Speaker, 55,000 to 75,000 Canadians live with devastating MS. Tonight, all members will have the opportunity to vote their conscience, to do the right thing [...]

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Kirsty Duncan’s Response to Health Minister Leona Aglukkaq’s letter on Bill C-280 “An Act to Establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI)”

Dear Colleagues, Hello and warm wishes. I am writing to you in response to the Minister of Health’s letter to you of February 17th, 2012, regarding [...]

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Kirsty Duncan Presentation on CCSVI at International Society for Neuro-Vascular Disease Conference in Orlando, Florida

ADVANCING A CCSVI RESEARCH AGENDA FOCUSSED ON CARE

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REBUTTAL TO `MULTIPLE SCLEROSIS RESEARCH UPDATE`

REBUTTAL TO `MULTIPLE SCLEROSIS RESEARCH UPDATE` (Health Canada) The statements in bold are the statements in the government`s briefing document; you will find my response below [...]

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Kirsty Duncan’s Speech on M-274

Mr. Speaker, I am thankful for the opportunity to speak to M-274, which essentially calls for information. Quite unbelievably, this information will not even begin to [...]

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Kirsty Duncan Closing Speech on 2nd Reading of Bill C-280

Madam Speaker, the government claims it has a moral and ethical obligation to work with the scientific and medical community and proceed only on the basis [...]

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SO31 on Sweater Day

Mr. Speaker, National Sweater Day is back. This popular initiative from the World Wildlife Federation in partnership with Loblaws calls on Canadians to turn down their [...]

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