Today I sent a letter to 50 weeklies and 25 major dailies. Ms. Aglukkaq had the advantage of a translator.. Should have done more French.
February 25, 2012
Dear Editors: (*)
I would like to comment on an issue which has arisen in Ottawa, that affects many Canadians.
I would like to address those Canadians affected by Multiple Sclerosis, those who have it, their families, friends, and employers.
Canada needs to engage itself now, not later, in the research to combat MS, a disease which affects thousands of Canadians. Canada has one of the highest rates of MS in the world. About 400 Canadians die every year from MS. To put that into perspective, that is a rate of more than one death every single day, in this country alone. That does not consider the suicide rate of people with MS, which is 7% higher than average.
The only drugs available, to treat only roughly half of MS patients, cost between 15,000 and 30,000 dollars per patient every year, for the indefinite future, or until they ‘convert’ to a less treatable form of MS. The drugs do not reverse anything. If all goes well, they can only slow down its inevitable progression, often ending in premature death. MS has no cure, because in the century or so it has been recognized, the medical world has not been able to discover its cause.
As you may have seen on a CTV report in November 2009, or more recently in the CBC television show this month, The Nature Of Things, there has been considerable excitement over a new treatment for MS. It has been called the “Liberation” treatment by some people; the term originally referred to the fact that it would free up blocked blood vessels. It is very much like the common heart procedure, angioplasty. The only difference, between this treatment and the more familiar heart operation, is that instead of arteries, veins are involved, in the neck and back.
Since 2009, more than 12,000 people have had the angioplasty for CCSV worldwide, most at their own expense. Especially for Canadians, it has been far from home. One Canadian died, after being turned away from St. Catherine’s medical care, having to travel back to Costa Rican doctors. Another was denied financial help to have the angioplasty done elsewhere, and died of his MS. These cases only scratch the surface.
The condition, thought to be congenital, was discovered by an Italian doctor, Dr, Paulo Zamboni. He named it Cerebro-Spinal Venous Insufficiency, or CCSVI. Seeing it in them so often, he had angioplasty done on the veins of 65 MS patients, and found that their MS improved. Not all of them equally, and not all permanently. They had been in varying stages of MS. They had improvements that, until then, had been impossible to achieve, even with very expensive drugs.
The treatment of their vein anomalies may make some MS patients improve. It may make some of them feel better, live longer and more ably, or go back to work sooner. We hope it does. It is no more dangerous than the similar cardiac procedure, nearly identical and universally supported. Yes, the majority are done on arteries. It is just as safe on veins. Angioplasty is the single most commonly used
medical procedure on Earth, having been in frequent use since the 1970s.
The procedure for CCSVI is not a cure for MS. At best it treats a syndrome of the vein circulation in the brain and spine. The CCSVI syndrome has symptoms similar to those of MS. CCSVI may (or may not) be found to be the cause of some real MS symptoms.
In contrast to some 50 other countries, including the US, it is not being allowed in Canada, until lengthy Clinical Trials are completed, to prove it is better than current drug therapies, even though many of those performed have had dramatic results, with as many as 66% reported as having improved.
Many patients with more advanced MS have no treatments available, no drugs, no hope of anything except deterioration and early death.
A Private Member’s Bill, introduced by Federal MP Dr. Kirsty Duncan, proposes a national strategy for approving this new procedure, making sure it is properly tested by qualified scientists, with appropriate haste, and that those Canadians who have gone abroad to have it done (to the US, Poland and many other places), are properly cared for when they return.
Many people with MS do not even think Dr. Duncan’s Bill C-280 goes far enough, noting that when other angioplasty procedures are used elsewhere, they are commonly practiced for years, before any clinical trials approve them, and continue while trials are done, if they are done at all. This Bill would not be necessary if not for the actions of biased individuals, none of whom actually have MS. At first even testing (using ultrasound) for CCSVI was prohibited, but opponents of the procedure have since that time abandoned that obviously foolish position.
However, the Bill has been defeated after two readings, in a voice vote in the House of Commons. There will be one more vote, and Members of the House of Commons will go on the written record, rather than merely joining voices with a “Yea”, or “Nay”.
I urge citizens reading this to contact your Member of Parliament, and ask them to support this Bill. Approving it would not defeat the Government, as it is a Private Member’s Bill. All of Canada’s representatives are free to vote their conscience. This is indeed a very grave matter of conscience. A lot of MS patients will be very interested in their elected representatives supporting this Bill in the vote.
Please let them know that you, too, want them to support Bill C-280 in the final recorded vote.
Name address phone email
Secondary Progressive MS sufferer
Treated for heart attack with angioplasty in Ottawa, Canada, near home, 2009.
Treated for CCSVI with angioplasty in Albany, New York USA, 2010
this may be used as an op-ed piece, if preferred, or a letter to the editor.