This is personal. As a past president of the Multiple Sclerosis Society of Canada and former head of public education for the International Federation of MS Societies, I have some knowledge of multiple sclerosis. Even more important, I have lived with someone with MS for the past 48 years. That tends to make you better aware of the disease, its ramifications and what is being done about it.
Despite the ties to the “officialdom” of the Canadian MS society, I am hardly immune to the desperation often shown by MS patients and those who care for them. As I explained to a House of Commons committee in Ottawa more than 30 years ago, those of us who support health agencies in their quest for cures are not necessarily doing it from a charitable viewpoint. We can also have deep personal concerns.
The current controversy over the treatment of MS, proposed by Italian vascular surgeon Paolo Zamboni, is a case that cuts both ways. Some patient advocates claim that MS society officials are suppressing the theory. This is absolutely ludicrous. At the same time, the suggestion by any supposed expert that Zamboni’s work is ‘junk science’ would be ignorant. The truth is that nobody knows whether Zamboni is right or wrong.
But if you are as desperate for a cure as those living with multiple sclerosis, you grasp hungrily at those straws. There is no blame for that. How could you care and not want that sudden, all-revealing, miracle cure. Zamboni’s ‘cure’ appears to be so simple, so low in risk, so oddly logical and so quick a solution that you cannot resist it. The only problem is that people are building a business out of Zamboni’s solution in jurisdictions where there are not the controls on medicine such as we have in this country.
If we did not have the controls such as we enjoy in Canada, there would currently be as many as 12 so-called cures for MS being actively promoted and sold. Whether Medicare could support those ‘cures’ is doubtful. The reason is that MS can have its own patterns of exacerbation and welcomed remission in each individual. Doctors have endlessly demonstrated that there are some patients who can be temporarily cured with sugar pills. The simple facts are that if a person wants desperately to be cured and believes strongly in the proposed cure, the cure can work—for a while.
That is why MS societies in many parts of the world are working furiously to test and evaluate Dr. Zamboni’s proposals. The encouraging anecdotal results, we are told about, are interesting but reports of a lasting and provable cure are yet to be validated.
When CTV news first broadcast, rather breathlessly, last November, the claims for Zamboni’s cure, my wife and I were keenly interested. At the same time, there was that nagging thought: “Oh damn, here we go again.”
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