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Petitions  Speaker, I am pleased to present yet another petition on chronic cerebrospinal venous insufficiency, or CCSVI. Last week I was honoured to be asked to speak at an international scientific conference on CCSVI. We need evidence-based medicine in Canada and new evidence from Jordan, India, Scotland and Slovenia replicate results from Bulgaria, Canada, Italy, Kuwait and the United States.

March 9th, 2011House debate

Kirsty DuncanLiberal

Questions on the Order Paper  With respect to chronic cerebrospinal venous insufficiency (CCSVI), the “liberation” procedure, and multiple sclerosis (MS): (a) does Health Canada recognize the International Union of Phebology (IUP), and is Canada a member; (b) does Health Canada recognize the IUP’s Consensus Document on the diagnosis and treatment of venous malformations; (c) will Health Canada be respecting the IUP’s standards regarding diagnosis and treatment of venous malformations; (d) will the government work with the provinces and territories to establish imaging and treatment guidelines for CCSVI and, if so, over what timeline and, if not, why not, (i) what are the benefits and risks associated with imaging and treatment techniques, (ii) what are the costs for each of the identified methods; (e) will the government, in collaboration with the provinces and territories, commit to imaging MS patients for venous malformations, and treating those patients who require interventions and, if not, why not and, if so, (i) over what timeline, (ii) what barriers would have to be overcome; (f) is CCSVI recognized as an official diagnosis and, if so, by what professional medical organizations and how is it defined; (g) what is the cause of narrow veins in the neck or thorax and what methods could possibly be undertaken to reduce their occurrence either in utero, in childhood, or in adulthood; (h) with what medical conditions is CCSVI associated; (i) what are the potential health impacts of CCSVI in the short-term, medium-term and long-term, both with and without treatment; (j) what percentage of MS patients show one or more blocked veins; (k) what veins, other than the jugular veins, are commonly blocked, damaged, or twisted in the human body, (i) what imaging procedures are used to identify the problems, (ii) what interventions are required to address the problems and why, (iii) what are the possible health impacts if left untreated, (iv) are interventions time sensitive, (v) what are the costs of imaging procedures and treatment; (l) what specific methods are used to investigate CCSVI, what costs are associated with each method, and what are the benefits and risks associated with these techniques; (m) where in Canada are these imaging methods available and, for each location, what procedures are offered and how much do they cost; (n) where in the world are private clinics emerging, what are their efficacy and safety records, and what are the imaging and treatment costs; (o) what percentage of MS patients show a reduction in MS attacks and brain lesions following the liberation procedure; (p) what percentage of MS patients with little or mild blockage show improvement following the liberation procedure; (q) what discussions is the government having regarding CCSVI, its imaging, and the possible link with MS; (r) what studies are government scientists conducting to assess the reliability and validity of imaging techniques, the possible association between CCSVI and MS, and to follow-up on patients who have undergone the liberation procedure; (s) how much money has the government allocated to research related to CCSVI, the liberation procedure and MS; (t) what is the estimated number of MS patients in Canada, and what is (i) the percentage who can no longer work, (ii) the percentage who depend on family caregivers, (iii) the percentage who require around-the-clock care from professional caregivers; (u) what is the estimated national annual economic impact of MS on families and healthcare plans; (v) what is the estimated national annual cost of disease-modifying therapies, including Copaxone and Interfon, for families and healthcare plans; (w) what are the projected imaging costs for CCSVI and treatment costs for MS patients who show a vascular abnormality; (x) what are the projected imaging costs for CCSVI and treatment costs for all MS patients; (y) what recommendations regarding CCSVI and imaging are being provided by the government to MS patients, particularly regarding (i) reputable imaging and treatment clinics, (ii) the pros and cons regarding venoplasty and stents, (iii) the need for continuing treatment regimes following any liberation procedure; (z) what steps is the government taking to educate MS patients about blogger patients and sham imaging and treatment centres; and (aa) what is the estimated number of Canadians who have gone overseas for imaging and treatment, and what tracking is being undertaken of their condition following such trips?

June 17th, 2010House debate

Kirsty DuncanLiberal

Subcommittee on Neurological Disease committee  It is because of the differing data that they and many other clinicians and researchers agree that investigation of neck vein abnormalities needs further assessment. By funding research into MS and CCSVI, the MS Society joins other MS societies and governments around the world to ensure that the answers about CCSVI are found as quickly as possible. If evidence is found that treatment of CCSVI is a valid therapeutic treatment option for MS, the MS Society will advocate vigorously to make testing and treatment widely accessible for people with MS.

June 15th, 2010Committee meeting

Dr. Karen Lee

Multiple Sclerosis  We need to free up our physicians and their patients in these circumstances to try new treatments like CCSVI. Doctors who have criticized CCSVI should be more open-minded about possible new treatments and withhold their judgment until results can be confirmed or duplicated. In fact, I am very disappointed in the comments by some doctors who have basically discarded Dr.

June 14th, 2010House debate

Larry MillerConservative

Health committee  Beaudet, I'm going to ask about the Multiple Sclerosis Society of Canada, which called on the government to provide $10 million for research into CCSVI and MS. Mr. Savoie, president of the MS Society of Canada, said: The safety and health of people living with MS is our primary concern. The Government...can play a leadership role in addressing the needs of Canadians living with MS by funding research, including clinical trials in CCSVI and MS.

November 25th, 2010Committee meeting

Kirsty DuncanLiberal

House debate  Madam Speaker, Canadians living with multiple sclerosis are fighting their disease and fighting for clinical trials for the new liberation procedure for chronic cerebrospinal venous insufficiency, or CCSVI. We had a parliamentary subcommittee on neurological disease that heard four hours of testimony from the leading researchers in the world on CCSVI, including Dr. Zamboni, who pioneered the liberation procedure, and Dr.

September 22nd, 2010House debate

Kirsty DuncanLiberal

Subcommittee on Neurological Disease committee  I acquired training that was required to adequately detect these abnormalities and I am now sticking to a very rigid protocol, designed by Dr. Zamboni, to diagnose CCSVI. BVI is now finding abnormalities sufficient to diagnose CCSVI in upwards of 90% of patients with MS referred to us by neurologists. It is too early to say whether CCSVI is actually causing MS.

May 11th, 2010Committee meeting

Dr. Sandy McDonald

Subcommittee on Neurological Disease committee  Because we collect all data regarding patients' history, clinical status, and the characteristics of the venous lesions that have been diagnosed, the analysis of this data set has enabled us to draw some conclusions regarding links between CCSVI and multiple sclerosis and also regarding the safety of the treatment. First, CCSVI has been found to highly correlate with multiple sclerosis. Only 3% of the multiple sclerosis patients we have seen were not diagnosed with CCSVI, using colour Doppler sonography, magnetic resonance venography, and standard venography.

June 15th, 2010Committee meeting

Dr. Marian Simka

House debate  There is only one thing worse than having devastating MS, and that is knowing the liberation procedure might improve quality of life and being denied access to trials. The parliamentary Subcommittee on Neurological Disease had four meetings with the world CCSVI experts, including Dr. Zamboni, who said the diagnosis and treatment of CCSVI were safe, had resulted in significant improvements in the qualify of life of many MS patients and that clinical trials were needed.

October 19th, 2010House debate

Kirsty DuncanLiberal

Subcommittee on Neurological Disease committee  The MS Society has asked for $10 million. Since their competition does not cover researching the treatment of CCSVI and only covers the testing, I have serious concerns that I will leave unsaid. What I will stress is that immediately the Government of Canada can, one, declare CCSVI diagnosis and treatment to be insured services under the Canada Health Act, two, require that all CCSVI data be documented in a nation-wide clinical trial, and, three, ensure that treatment of CCSVI and clinical studies are done in parallel, not in sequence.

May 11th, 2010Committee meeting

Rebecca Cooney

Subcommittee on Neurological Disease committee  Clearly, drugs such as these pose a much greater risk than in an angioplasty-type procedure. One neurologist in particular has expressed fear of losing the research dollars to CCSVI studies and has even suggested that CCSVI and its relationship to MS may be a hoax. It may be like the chicken and the egg: it doesn't really matter at the moment if CCSVI causes MS or if MS causes CCSVI.

May 11th, 2010Committee meeting

Janet Salloum

Multiple Sclerosis  It is highly desirable on the part of the 55,000 to 75,000 Canadians who suffer from MS and who would love to be able to see if indeed, through a diagnostic, the CCSVI treatment, the angioplasty, could help alleviate their symptoms. I think we owe them that. We owe them the benefit of exploring whether or not we should be doing that, and quickly. There seems to be a consensus tonight that there is a parallel track here between the research and the scientific affirmation of what is CCSVI vis-à-vis MS.

June 14th, 2010House debate

Mauril BélangerLiberal

Multiple Sclerosis  In 2008-09, $120 million was invested for neurological disorders and $5.3 million was invested for MS. As the minister mentioned, the CIHR is eager to see applications on this CCSVI treatment. Speaking specifically about MS, I am fascinated by the possibilities with the CCSVI treatment. I come from the beautiful city of Barrie, which is home to one of Canada's leading doctors, and a good friend of mine, Dr.

June 14th, 2010House debate

Patrick BrownConservative

CCSVI Procedure  I ask the government to continue the clinical trials and collect the required evidence that will allow Canadians to receive the CCSVI procedure here in Canada instead of having to travel all over the world to have it done. Having the procedure done here is very important to the patients and their families.

September 30th, 2010House debate

Lawrence MacAulayLiberal

Subcommittee on Neurological Disease committee  Patients who receive dialysis have been benefiting from this procedure for many years. I feel there's a strong risk associated with not being treated when you have CCSVI. Approximately 750 people have received treatment for this around the globe and there has not been one negative result of having treatment for CCSVI with balloon angioplasty. On the risks associated with not treating CCSVI, well, we all know what the risk is.

May 6th, 2010Committee meeting

Laurel Radley