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Margaret Wente (Curtis Lantinga)
Margaret Wente (Curtis Lantinga)

Margaret Wente

The explosive politics of MS Add to ...

You can't blame Saskatchewan Premier Brad Wall for trying to help desperate MS patients. Saskatchewan has the highest rate of multiple sclerosis in Canada. And now, a radical new breakthrough known as "liberation therapy" is promising relief. Sufferers hope the Premier's pledge to finance clinical trials will turn up the heat on other politicians to do the same.

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"I'm ecstatic," said Lori Lumax, a 44-year-old woman with MS. "This creates hope we can do better."

False hope is more like it. The new treatment - invented by an Italian doctor, Paolo Zamboni - is the latest in a long list of unproven remedies that include oxygen therapy, magnets, cranberries and snake venom. But thanks to a few star-struck media reports, this one has gone viral. Doctors' offices across North America are besieged by people demanding testing and treatment. Provincial politicians are being stormed by patients who want access to the new treatment, proven or not, right now. Some doctors in the U.S. have set up "back alley" shops (because many hospitals forbid experimental treatment outside of studies). Medical-tour companies offer "liberation packages" to India or Eastern Europe, where the treatment is legal.

Social networking has added a new dimension to the uproar. Outraged patients are connecting in online forums and Facebook groups with names such as MS Uprising. They're drafting online petitions and launching campaigns to divert donations away from traditional MS groups, which they think have been too slow to act. They even have a YouTube channel. Meantime, conspiracy theories are running rampant. Many people are convinced that Big Pharma wants to block a therapy that's billed as simple and effective because it stands to lose a bundle. They think doctors who oppose it are beholden to Big Pharma.

Still, you can understand the frustration of people like Ms. Lumax. MS is a miserable disease with no cure, and treatment options are lousy. Its most common victims are Caucasian women in the prime of life. "In three years, I have gone from being normal to now," said one woman who needs a walker to get around. "So where am I going to be in two or three more years? I don't have the time."

Dr. Zamboni theorizes that MS is not a disease of the nervous system but a vascular disorder caused by brain blockages. He claims that a relatively simple procedure that unblocks people's narrowed veins can achieve remarkable improvements. But the only way to tell for sure is to fund long-term clinical trials that compare large groups of treated and untreated patients over many years. Many leading MS experts say Dr. Zamboni's theory is so implausible, and the evidence so scanty, that clinical trials aren't even justified.

"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," said Paul O'Connor, who directs the MS clinic at St. Michael's Hospital in Toronto and is also medical adviser to the MS Society of Canada. (Bowing to intense pressure, the MS societies have agreed to pay for further studies of the Zamboni treatment.)

So what harm is done if desperate patients try a treatment that may not help but can hardly make things worse? Who cares if politicians decide to throw some bucks at a medical procedure that's captured the public imagination?

You should. Medical funding is too important to be driven by popular demand instead of facts. Besides, patients get hurt. Some have stopped their medications in hopes of something better. Some have spent money they don't have on treatment that makes them feel better for a week, but doesn't last. Some have suffered nasty complications. Worst of all, according to Jock Murray, an MS expert who helped write the book on MS treatments, is the false hope. "It's very hurtful to the MS population to have this repeatedly happen," he says.

Maybe other politicians will consider this before they rush to be so kind.

 

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