Dear Committee Members,
I would first like to thank you for addressing the topic of CCSVI in your deliberations. In this brief I would like to speak to three main issues: the possible impact of CCSVI research on MS, the way that the CCSVI theory has been discounted by vested interests, and the fact that MS sufferers must leave Canada in order to be competently tested and treated. My point of view is that of an MS sufferer with secondary progressive MS, who has spent the last few months researching the topic, and who has recently returned from Poland where I was tested and treated for CCSVI.
The cost of MS in terms of its impact on our health care system and in terms of lost productivity are huge, and investing in research into a condition that is, at the very least, highly correlated to MS is likely to pay very high dividends. The evidence that links CCSVI to MS is very strong and the theory that CCSVI is a causal factor in MS is bolstered by years of independent research that found interesting phenomena in MS patients such as those concerning abnormal blood flows, iron deposition and brain cell degeneration that pre-dates any immune system reaction. The possibility that CCSVI may be a major causal factor in the initiation and progression of MS has given those stricken with the disease the first real hope that the progress of the disease might actually be stopped. Until now, all we have had available to us are very expensive drugs that sometimes slow the progression of the disease. The potential payback of this new area of research in terms of benefit to the quality of the lives of MS sufferers is incalculable.
There are MS experts who have gone so far as to call the CCSVI evidence a hoax, or to demand a level of proof of its authenticity that they do not demand of the drug therapies they administer. I would like to think that these are the reactions of otherwise thoughtful and caring people who have just been confronted by a paradigm shift that throws their entire belief system on its head, that says that much they believed to be the truth throughout their careers might be completely wrong. However, it should be recognized that MS patients who are seeing their abilities and/or faculties degenerate on a daily basis cannot wait for these experts to slowly change their minds and reach a consensus concerning their previous errors. Nor can you expect these same unfortunate MS sufferers to be temperate in their reactions to experts who do not even bother to look at the evidence before denigrating the idea that CCSVI could be the most promising new approach to MS treatment seen in a generation.
While I believe that it is critical that a concerted research effort be undertaken into the nature and treatment of CCSVI as soon as possible, that should not be used as an excuse in delaying the testing and treatment of the condition. Whether or not CCSVI is a major contributor to the initiation and/or progress of MS, it is a real pathological condition that should be treated. It is a disgrace that some of the health community go so far as to say that people should not be tested for the condition, much less treated if it is found in a patient. It is ridiculous that vascular specialists are being dissuaded from treating MSers for this vascular deformity (that almost certainly is not good for the body) just because it has not yet been “proven” to halt the progression of the disease. Based upon my own research into the subject, I believed that there was a strong possibility that I had CCSVI. Given the prevailing attitude of the medical community (or at least that part of it that “owns” MS), I have not been able to find an interventional radiologist or vascular specialist to assess me for the condition. Even if I had found one to do the assessment, there was nobody (to my knowledge, at the time) in Canada to treat the condition if found, in part because these specialists were being “warned off” from doing their jobs on MS patients. I was forced to go to Poland to be assessed and, ultimately, treated for CCSVI. I had the financial resources to do it, but many MSers (who are often on disability) don’t.
I hope that this committee can see why CCSVI research is a good investment for Canada, and why assessment and treatment of CCSVI is the right thing to do.
Thank you for your letter. Ms. Duncan has asked me to forward you her Order Paper question which has been tabled in the House of Commons and must be answered by the government.
Q-2332 — May 3, 2010 — Ms. Duncan (Etobicoke North) — With respect to chronic cerebrospinal venous insufficiency (CCSVI), the “liberation” procedure, and multiple sclerosis (MS): (a) does Health Canada recognize the International uni0n 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?
Have a good day,
Office of Kirsty Duncan, MP, Etobicoke North
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