Dear Sen Green Raine,
Chronic Cerebrospinal Venous Insufficiency.
I understand that Sen Jane Cordy has just tabled a Bill (S.204) to establish a "National Strategy of the Testing & Treatment of CCSVI". I don't know how much you know about M.S. but in a nutshell it is a progressive, debilitating disease; the cause of MS is unknown, current treatments are what are called Disease Modifying Drugs that only treat some of the symptoms, and are only effective for some people. Once in its Progressive State, there is no treatment at all for the disease.
When it was first diagnosed, MS was considered a vascular (blood flow) problem, however without the ability and the technology to show this, the medical community could not prove or treat the disease. Some 60 years ago, the neurological community put forth the theory that MS was an auto-immune disease. Despite the millions of dollars poured into researching this theory and the technology now available, neurologists are still unable to prove the theory and it remains a disease of unknown etiology. Additionally, the big pharmaceutical companies are raking in billions of dollars in profits annually to treat this "auto-immune" disease, and yet not one MS sufferer has been cured.
In 2009 Dr Paulo Zamboni published his study suggesting that blocked veins draining blood from the Central Nervous System may have an impact on the MS symtoms, he called the hypothesis CCSVI. The treatment for this condition is by way of a simple venous angioplasty to open the blockages and allow the blood flow from the brain to get back to normal. His theory returns the focus back to blood-flow problems and we now have the technology and the expertise to not only show the complications of abnormal blood flow but also how to fix it.
Senator, there is a lot of information on this subject, there is controversy and there is the need for a lot more research. However the anecdotal evidence presently available suggests that the treatment for CCSVI has a positive effect on several significant MS symptoms. CCSVI has been recognized as a venous condition, the treatment is available here in Canada, and yet despite our so-called Canada Health Act, patients who might have abnormal veins, who might benefit from the veno-plasty tyreatment, are being denied the treatment because they have been diagnosed with Multiple Sclerosis.
Canada despite its worldwide reputation of being one of the best countries in the world to live in, despite it being perceived as having universal health care, Canada is regretably letting down its citizens when it comes to this issue. The Minister of Health has allowed a group of "experts" to negate funding testing of this new theory - they want more research before approving expenditure on clinical trials. But what better way to prove or disprove this theory than to allow a clinical trial, the outcome of which will provde a lot of the research they are seeking ?
In my personal opinion, when there is the possibility of giving some relief to MS patients in the progressive state of the disease, then not to do so is unethical. I am therefore writing you to ask that you support this Senate Bill and that you support the rights of Canadians to obtain treatment in Canada for a recognized venous condition.
Thank you, Malcolm Roberts
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note:" Sen Nancy Green Raine is a Conservative Party appointment to the Senate but she is my area rep.
It'll be interesting to see if she responds and more so if she will "bite the hand that feeds her" !!