The letter below was sent to Dr. Jeff Turnbull of the Canadian Medical Association by the people who signed it - people who have already been treated for CCSVI or about to undergo it. I am in the process of sending it to every newspaper in Ontario (as I write this I have sent to about 50% of the newspapers who offer emails). For those paper readers who were sent here to read the entire letter, (some can only print highlights due to space allowances) welcome. Feel free to check out any pages herein. We hope you do not suffer from MS or CCSVI and just came here for information. If you do suffer from MS or CCSVI, know there is hope for us and please join us in fighting to realize that hope.
To: The Editor
The letter below was sent out to Mr. Turnbull . It is self explanatory. It is also something people with MS in your area should know about and people who do not have MS but may face it one day should know about. If you could find a spot in your newspaper to print it, we would be grateful.
22 March 2011
Dr. Jeff Turnbull
Canadian Medical Association
1867 Alta Vista Drive
Ottawa, Ontario, K1G 5W8
Dear Dr. Turnbull,
We are writing to you about multiple sclerosis (MS). While thirteen names of MS sufferers, or family members of MS suffers, are attached to this letter, each one of us represents hundreds of MS sufferers and families across Canada.
The MS world was turned upside down in November 2009 when the work of Dr. Paolo Zamboni was brought to the attention of the public in Canada and around the world in a W5 documentary. W5 reported that Dr. Zamboni found that blood is refluxing into the brains and spinal columns of MS sufferers due to malformations of the vascular system, primarily the jugular veins, the azygous vein and, in some people, the iliac vein. Dr. Zamboni did not invent the vascular component of MS; that component has been studied and observed by scientists since 1839. The International Union of Phlebology, whose members are venous experts, confirmed in December 2009 that the venous malformations Dr. Zamboni described as Chronic Cerebrospinal Venous Insufficiency or CCSVI are, in their opinion, congenital and preceding MS lesions.
Treatment for CCSVI is balloon angioplasty. It is a well-known, low risk procedure developed by Dr. Andreas R. Guentzig in the 1970s that quickly became a standard of care without any double-blinded, randomized, controlled clinical trials. Treating patients led to knowledge that led to the protocols followed today.
Thousands of MS sufferers in Canada felt a surge of hope. Until November 2009, those MS sufferers with relapsing-remitting MS could take expensive disease modifying drugs that recent studies have shown to be ineffective in slowing progression of the disease or in reducing relapses (see Appendix to this letter). In some cases, MS sufferers were made worse by the drugs; in other cases MS sufferers lost their lives to them and others are still struggling. Tysabri, as of 4 March 2011, has been linked to 21 deaths and permanent brain infection in 102 people. The numbers increase monthly as Biogen reports new cases of PML as required by law. The newest entry in the drug market is Gilenya. It has its own side effects that include, but are not limited to, permanently slowed heart rate, liver damage, macular edema, eczema, increased hypertension, and reduced white blood cell count. But the MS neurologists who are front-line marketers of the new drug assure MS sufferers that the side effects do not manifest immediately. It may be fortunate for MS sufferers with other, more aggressive types of MS that no drug treatment is available for them.
In the past 16 months, Canadian MS sufferers have been subjected to unprecedented levels of discrimination. They are denied access to a simple procedure that is available to any other Canadian requiring venoplasty for other medical conditions and who has not been labeled “MS”. They are forced to fight for their lives and the lives of their families and are forced to leave Canada on a quest for an improved quality of life to seek treatment in countries that, from their point of view, appear far more progressive and inviting than Canada.
Why are Canadian MS sufferers denied treatment in their own country? Dr. Zamboni’s work has been attacked by MS neurologists, especially research neurologists backed by pharmaceutical companies with enormous MS drug markets, who may be suffering from the Semmelweiss Reflex. The Semmelweiss Reflex is a metaphor for the reflex-like rejection of new knowledge because it contradicts entrenched norms, beliefs or paradigms.
MS sufferers are well aware that MS is a multi-billion dollar a year industry and that the only groups that benefit from this industry are MS neurologists and pharmaceutical companies. MS sufferers are also aware that neurologists may be experiencing Gatekeeper Syndrome in addition to Semmelweiss Reflex; Gatekeeper Syndrome is described as a lack of interest in anything, no matter how important to your work, that does not involve you being a gatekeeper. MS sufferers know that MS neurologists are furious that a vascular surgeon has illustrated so well that the unproven autoimmune theory for MS that the MS neurologists have chased for over 60 years is, in fact, wrong and has achieved very little for MS sufferers. Two international conferences held this month, one in Poland and one in Italy, were highlighted by studies that will soon be published that confirm Dr. Zamboni’s work and the improvement in the quality of life for MS sufferers who have been treated for CCSVI (see www.isnvdannualmeeting.org/
However, MS is a lucrative Industry that supports the MS neurologists and the pharmaceutical companies and perhaps that fact is the reason for the fury of the MS neurologists – the money they receive from pharmaceutical companies in research funding, consultancy fees and speaking honoraria is threatened by CCSVI which represents a paradigm shift in the understanding of MS. One prominent MS neurologist has stated that CCSVI will ultimately be proven to be a hoax and has labeled those people who think there is merit to CCSVI “cultists”. However, 60 years and billions of dollars of research and the same MS neurologists have not proven viral or autoimmune theories as the cause of MS. Not one MS Society or pharmaceutical company world-wide can state with absolute certainty that MS is strictly an autoimmune condition nor can they explain what causes MS.
MS sufferers are also aware that the MS Society of Canada has behaved badly regarding CCSVI and has failed to live up to its mandate. It operates in a paternalistic manner and as more of a marketing arm for the pharmaceutical industry than as an advocate for MS sufferers. That is not surprising since the MS Society here in Canada is run by the angry, disgruntled MS neurologists.
Unfortunately, and sadly for MS sufferers and their families, government officials listen to the MS Society of Canada and the neurologists who run it. We have seen an alliance between the Canadian Institutes of Health Research and the MS Society which resulted in a secret meeting in August 2010 with a panel of non-experts considering the merits of CCSVI. Many of the panel members have severe conflicts of interests and the panel included some of the angriest neurologists who have been vitriolic in their condemnation of Dr. Zamboni and CCSVI. The outcome of that meeting was never in doubt since the Chairman, Dr. Alain Beaudet, admitted that CCSVI experts such as Dr. Sandy McDonald were deliberately excluded. We have seen the Society launch unnecessary studies geared to obtaining information that we already have. The studies are being conducted by neurologists. The outcome of these studies is not in doubt.
Because of a small group of angry, disgruntled MS neurologists, Canadian MS sufferers, at great expense and hardship, are forced to travel to the United States, Mexico, Poland, Bulgaria, Malta, Egypt, Costa Rica and India to receive a treatment for a vascular condition that is readily available in Canada – except for MS sufferers. The exact number of MS sufferers who have been treated worldwide for CCSVI is not known but estimates range from 12,000 to 15,000. Those who have been treated report results that range from spectacular to moderate to minimal.
Because of a small group of angry, disgruntled MS neurologists, Canadian MS sufferers are denied adequate follow-up care in Canada after treatment. Once again, the well-being of MS sufferers is compromised because they sought treatment for a vascular condition outside Canada when they are supposedly guaranteed the right to the treatment in Canada by the Canada Health Act.
Dr. Ignaz Semmelweiss was hounded from his profession and eventually committed to an asylum; he tried to introduce hand washing to doctors to prevent women dying in childbirth from puerperal fever. In the 1980s Dr. Barry Marshall was vilified by the medical community when he suggested that bacteria cause stomach ulcers; he had to give himself a stomach ulcer to prove his point. He won a Nobel Prize for medicine.
There is nothing unethical, dangerous or controversial about balloon angioplasty. What is dangerous and unethical is prescribing drugs to patients knowing that the drugs are ineffective and unsafe. What is dangerous and unethical is working to deny people a treatment that is available in Canada and that is a right guaranteed to them. What is dangerous and unethical is the wedge that has been driven between thousands of Canadians and the medical community in Canada.
We are aware, Dr. Turnbull, of your interest in re-vamping healthcare in Canada. We would suggest to you that re-vamping the ethics of the doctors who deliver healthcare in this country should be your top priority. The medical community is failing Canadians and it seems, as
Dr. Louis Francescutti (President, Royal College of Physicians and Surgeons of Canada) mused in a recent interview, that too many doctors are more interested in protecting their vested interests than in taking care of their patients. It is a sad state for Canadians. It is a sad state for medicine in Canada.
We would like to know if CMA will publicly support MS sufferers acquiring access to testing and treatment for CCSVI in Canada. We would also like to know if CMA will publicly urge doctors to provide follow-up care in Canada for MS sufferers who are treated for CCSVI outside Canada.
Christopher Alkenbrack, (Nova Scotia), treated 2010 Poland
Francine Deshaies, (Quebec), treated 2010 and 2011 Poland
Judy Filipkowski, (Ontario), treated 2010 Albany, New York
Steve Garvie, (Ontario) treated 2010, Barrie, Ontario,
Chrystal Gomes, (Ontario), not treated
Myles Higgins, (Newfoundland and Labrador), brother-in-law of MS Sufferer
Val Hoenecke, (Saskatchewan), treated 2010 Poland
Linda Hume-Sastre, (Ontario), waiting list, Albany, New York
Watson McGregor, (Saskatchewan), treated twice 2010 Bulgaria
Carol Prest, (Alberta), sister of MS sufferer
Amy Preston, (Ontario), treated 2010 Albany, New York
Laurel Radley, (British Columbia) treated 2010 Australia
Michelle Walsh, (Saskatchewan), treated 2010 Bulgaria, 2011 California
STUDIES ON DISEASE MODIFYING DRUGS
Boggild M, Palace J, Barton P, Ben-Shlomo Y, Bregenzer T, Dobson C, Gray R.,
Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with
historical comparator. BMJ. 2009, 9 pages.
Ebers, G, Traboulsee A, Li D, et al., Analysis of clinical outcomes according to
original treatment groups 16 years after the pivotal IFNB-1b trial. J Neurol Neurosurg Psychiatry, in press, 6 pages.
Veugelers PJ, Fisk JD, Brown MG, Stadnyk K, Sketris IS, Murray TJ, Bhan V.,
Disease progression among multiple sclerosis patients before and during a
disease-modifying drug program: a longitudinal population-based evaluation. Mult Scler. 2009 Nov;15(11):1286-94.
Places to learn more