Friday, September 24, 2010

What's the real reason for resisting help for people with MS?

Paulo Zamboni must have been hanging out with the marketers too long when he coined that cursed phrase “liberation therapy” for a garden-variety angioplasty.
Maybe if the Italian doctor hadn’t made it all sound quite so fancy and amazing, we’d just be doing what we always do for people with blocked veins, giving them angioplasties to open things up.  Instead, we’re acting like it’s some unheard-of procedure and putting up a real fight to stop people with MS from trying it.
You probably know the story by now. Zamboni tried angioplasty on people with MS to test his theory that the devastating illness might be caused by blocked veins that affected blood flow in the brain. Patients responded in near-miraculous ways, and the “liberation therapy” was quickly news all over the world.
But even as people with MS grew hopeful at the news, a massive resistance was building among governments, doctors, MS support groups and virtually anyone else with a professional tie to the issue.
On the one hand, it’s understandable.
Zamboni didn’t do the double-blind, control-group kinds of studies that are required in countries like Canada.  His theory goes against everything we think we know about MS, challenging the common wisdom that it’s an incurable auto-immune disorder best managed through lifelong drug therapy.
On the other, what’s this wave of resistance really about? More than 35,000 angioplasties are performed in Canada every year, 99 per cent of them without incident. Other than touting it as a potential cure for MS, Zamboni isn’t advocating an unusual or dangerous procedure.
 So why are the MS professionals so resistant to even considering that people with MS might have blocked veins? Why are we forcing ill Canadians to travel to other countries on their own dime just to get a scan to confirm whether their veins might indeed be blocked? Why are we making it so hard for desperate people to hold onto hope of reclaiming at least a little mobility?
“Right now, it’s my only hope,” says Sharon Kristiansen, a Victoria woman who has lived with MS for 31 years. “Maybe it would mean that one day I could walk again. But if not that, then at least maybe I could get more feeling back in my fingertips. The slightest things make a difference.”
I’m not a conspiracy theorist, but the power of the pharmaceutical companies can’t be underestimated when trying to understand the resistance.
On average, people with MS use $20,000 to $40,000 worth of prescription drugs every year to control their symptoms. (Kristiansen’s annual drug costs are $25,000.) Onset is typically between ages 20 and 40. MS isn’t noted for shortening your lifespan, so many people live 40 to 60 years with the disease.
Close to three million people around the world have MS, including 55,000 Canadians. Based on my rudimentary math calculations, that means that just the current crop of Canadians with MS will use between $44 billion and $134 billion worth of prescription drugs over their combined lifetimes.
Assuming people in other countries are also paying at least $20,000 a year for drug therapy and living with MS for the same length of time, we’re talking a mind-blowing $2.4 trillion worldwide  just to treat the people who have the disease right now.
That’s a lot of sales at risk. I know that’s an ugly thing to say, but can we honestly feel confident that we’re exploring potential cures for MS when that much money is at stake?
Drug companies are very good at public relations, to the point that everyone from researchers to doctors to advocacy groups and “grassroots” health organizations ends up compromised. Case in point: The Multiple Sclerosis Society of Canada.
Kudos to the society for issuing its first-ever proposal call last fall for further research into Zamboni’s theory. That can’t have been an easy decision given that drug companies donate half a million dollars or more every year to the society.
Six drugs are approved for use in Canada for the treatment of MS. The manufacturers of five of them were listed as major donors in the MS Society’s 2008 and 2009 annual reports.
Just four donors in the country gave at the top level last year, with gifts of $100,000 or more. Two were drug companies.
Is any of that proof of something afoot? No. Zamboni’s theory challenges the status quo in all kinds of ways, and for all I know the resistance is simply about sound medical practise.
But for the first time ever, there’s a glimmer of real hope on the horizon for people with MS. I just find it odd that we’re putting so much effort into raining on their parade.


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