Canadian medical professionals are acting in contradiction to the Canada Health Act, in particular the principle of "universality", and also willfully ignoring the ethical principles established by the World Medical Association Declaration of Helsinki regarding research involving human subjects, by denying venous angioplasty for the treatment of chronic cerebrospinal venous insufficiency (CCSVI) for people diagnosed with Multiple Sclerosis.
I recently sent an "open" letter to the Canadian Medical Association, the BC and Canadian (Royal) College of Physicians and Surgeons, along with the BC and federal Ministries of Health, with some specific questions that I would like answered.
WireService.ca Media Release - 07/21/2013
To the Canadian Medical Association, the BC and Canadian (Royal) College of Physicians and Surgeons, along with the BC and federal Ministries of Health.
Please consider this to be an "open letter" that is intended to be posted on the internet for exposure to as many people as possible.
I am writing to express my extreme disappointment/disgust with the reaction to chronic cerebrospinal venous insufficiency (CCSVI) by the medical profession, especially neurologists who specialize in Multiple Sclerosis, in Canada. I believe they are acting in contradiction to the Canada Health Act principle of "universality" and willfully ignoring the ethical principles established by the WMA Declaration of Helsinki regarding research involving human subjects.
On Nov. 21, 2009, the Canadian news show "W5" aired a story about promising research by an Italian vascular specialist, Dr. Paolo Zamboni and CCSVI and venous angioplasty treatment having the potential of improving some symptoms attributed to MS http://www.ctvnews.ca/the-liberation-tr ... s-1.456617. Instead of excitement and hope, along with scientific curiosity, in Canada, this discovery was met with disbelief and derision, with a well-known MS neurologist, an adviser to the MS Society of Canada, even calling it a "hoax".
Chronic venous insufficiency has been a recognized medical condition for many years, with venous angioplasty being an accepted form of treatment. It was only when the cerebrospinal veins were specified, threatening the status quo of MS care, that, suddenly, this procedure has been deemed "experimental". It cannot be stated strongly enough that venous angioplasty is used to treat venous insufficiency, and is NOT SPECIFICALLY A TREATMENT FOR MULTIPLE SCLEROSIS!
Refusing a common treatment to a group of people, who happen to have been diagnosed with MS, seems discriminatory according to the "Universality" principle of the Canada Health Act which states: "The provincial and territorial plans must entitle all insured persons to health insurance coverage on uniform terms and conditions". http://www.parl.gc.ca/content/sen/commi ... art7-e.htm It may not be a "typical" treatment for MS, but that doesn't mean it should not be available to people with MS who have symptoms of a vascular nature.
Also, Canada is a member of The World Medical Association and should be obligated to follow its ethical practices! http://www.wma.net/en/30publications/10policies/b3/ In their Declaration of Helsinki, section 35 states: "In the treatment of a patient, where proven interventions do not exist or have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorized representative, may use an unproven intervention if in the physician's judgement it offers hope of saving life, re-establishing health or alleviating suffering. Where possible, this intervention should be made the object of research, designed to evaluate its safety and efficacy. In all cases, new information should be recorded and, where appropriate, made publicly available."
I, along with many others, was refused this treatment when I requested it. I have been secondary/progressive since before any of the so-called disease modifying drugs came on the market, and, therefore, did not qualify for any treatment. If I had known about this Declaration I would have BEGGED for the chance to try this procedure, happily being a subject of research-I had participated in an experimental drug clinical trial in the past-but, oddly, there was no scientific curiosity displayed for this non-pharmaceutical treatment of venous angioplasty.
I did my own risk/benefit analysis and went out of the country for this treatment. I had amazing results, with my neurologist having to admit I was "significantly better" (with neurological tests to prove it), even though he had advised me previously that I would NEVER improve.
The hypocrisy and disdain is blatantly apparent, yet baffling, when the options for any treatment in MS are considered.
On one hand, there is an eagerness to prescribe so-called MS disease-modifying pharmaceuticals, with no long-term track record, with results on par with placebo, based on the UNPROVEN autoimmune theory, that have sickening, and DEADLY side-effects, with no symptom-relief, only the POSSIBILITY that they MIGHT decrease the number of attacks, many of which have been shown to be completely ineffective in delaying disability progression.
On the other hand, there is the staunch refusal, with inaccurate/misleading claims of "danger", to allow people diagnosed with MS to obtain, in Canada, the minimally-invasive procedure of venous angioplasty, to improve blood and CSF flow from the brain, used safely for almost 4 decades for many conditions, which has demonstrated actual improvement in many symptoms attributed to MS, leading to a better quality of life for many people with this wretched and mystifying condition.
Please answer these questions:
1. Given the "universality" principle of the Canada Health Act, why is venous angioplasty an accepted treatment for many vascular conditions, but not allowed for people with similar vascular symptoms because they happen to have been diagnosed with Multiple Sclerosis?
2. Why are the ethical principles established by the Declaration of Helsinki not being followed by Canada, allowing people with MS, who have no other form of treatment, to try venous angioplasty for CCSVI if they want to?
3. Since MS is a "differential diagnosis", shouldn't CCSVI, and venous malformations be documented as excluded for everybody with an MS diagnosis? (please see enclosed ) The differential diagnosis of multiple sclerosis
I will anticipate your reply with answers to my questions.
I have posted many before/after videos on youtube, including:
Walk a mile in my shoes
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