Letter to the Editor, by Leslye Gower

It is not often I get mad enough to write about the inanity that encompasses our government and a so-called non-profit group called the MS Society. I suffer from a condition known as multiple sclerosis. Let it be known at this point that MS is not classified as a disease; it is merely a description of what is found in the body after an MRI. My physical degeneration is due to chronic cerebral-spinal venous insuffiency (CCSVI).

For sixty years, the MS Society has claimed this condition as their own. They have pumped MSers full of drugs that have not worked on the claim that this is a neurological problem. Last November Dr. Paolo Zamboni presented the notion that MS is caused by blood reflux to the brain due to malformed veins that are supposed to drain blood from the brain. He treated his wife, who was diagnosed with MS, with a simple procedure known as angioplasty. Instantly the MS Society jumped all over that, stressing how dangerous angioplasty was and people that suffer from MS should not pursue this procedure. Shortly after that, the large pharmaceutical companies anticipated a 26% increase in MS drug profitability. It is well-known that the MS Society is made up of self-serving neurologists, who pay themselves huge salaries and also gladly accept payments from these drug companies to flog their products.

Malformed jugular and azygos veins have been linked to chromosome 6p21.32, which says that this is a congenital problem. No drug in the world will fix this.

Ms. Agluqqak met with the MS Society and the CIHR (Canadian Institute for Health Research) last August 28th. No minutes are to be found of this meeting. No vascular experts were to be found at this meeting. Both organizations are joined at the hip with drug companies. The outcome of this charade was the formation of seven studies, all headed by neurologists with not one vascular expert on board. The MS Society contributed 2.4 million dollars to set these studies up, less than what it spends on office supplies for one year. This time and money-wasting exercise is all about getting electricians to understand a plumber’s job, and to what end?

On Feb.8th of this year Dr. Kirsty Duncan, a Liberal MP for Etobicoke North, hosted a breakfast meeting in Ottawa with renowned Dr. Sandy McDonald, Dr. David Hubbard and Dr. Mark Haake. Every federal MP and senator was invited to this meeting. To explain who these brilliant doctors are, Dr. McDonald studied with Dr. Zamboni, Dr. Hubbard is a neurologist who embraces the CCSVI procedure and runs a clinic in San Diego, and Dr. Mark Haake is an imaging specialist. I e-mailed my MP Tony Clement and Ms. Agluqqak to see if they were going to attend this meeting. Agluqqak’s office did not respond at all, and Tony Clement had previous commitments. As it was, 35 people showed up to this meeting. Hundreds of invitations were issued. Dr. Hubbard came out of this meeting saying, and I quote “Half of our patients in Southern California are coming from Canada. That’s just not right. Especially when it’s being prevented by a very small group of angry neurologists in Canada”.

There are 75,000 people in Canada with MS. We are all being denied this life-saving procedure in our own country with no explanation except that “studies” must be completed to establish that MS has a relationship with malformed veins, and that these studies will take 2 years to complete. Many of us will die before these studies are completed.

If I had any other condition than MS, I could get this simple day surgery in a city close by. It would cost $1500.00. But, I have to travel outside of my own country and pay at least $9000.00 out of my pocket to have the surgery. I had the scan on the veins in my neck and 3 out of 5 are not draining properly. Interventional radiologists in the United States are actually looking at this congenital defect as possibly being the cause of Alzheimer’s and Parkinson’s disease. What kind of ground are we losing by Agluqqak sticking her head in the sand? Canada used to be a leader in innovative medicine. Obviously our health system is being hijacked by ignorant politicians.

I have researched this condition for almost a year and a half. By no means am I an expert but I have learned a lot. I am disgusted to know the federal government and most provincial governments are opposed to MS sufferers receiving any relief from their declining health by having a simple inexpensive procedure. I know that the big pharmaceutical companies are turning their focus away from MS drugs to research on drugs that would help prevent restenosis of veins once they are opened up. They know an opportunity when they see it. The MS Society and the Canadian Institute for Health Research are dead in the water when it comes to vascular knowledge and Agluqqak had no right to ask their advice in the first place without also receiving input from the brilliant doctors mentioned above.

As Albert Einstein quoted, “ Great spirits have always encountered violent opposition from mediocre minds.” Need I say more.

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