Patients flex muscle in 'war' over MS treatment

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The public campaign to bring the controversial new "liberation" treatment for multiple sclerosis to Canada has been declared "a war" - and Anna Delorme is pleased to be serving on the front line.

Last week, just three days after the federal election, the 43-year-old resident of Waterloo, Ont., helped organize a rally in Toronto as part of a national day of "liberation." The goal was to press politicians and the medical establishment to allow the vein-widening surgery, touted by Italian doctor Paolo Zamboni as a near-miraculous antidote to the debilitating symptoms of MS.

Canadian authorities have refused to do so thus far because both the procedure and the theory behind it have yet to be validated by independent researchers. In the past, this lack of evidence would have been enough to persuade most patients to bide their time.

Not so today. MS sufferers and their friends and family from coast to coast say they don't want to wait, and shouldn't have to, because the word of patients who have gone abroad for the treatment is good enough.

Ms. Delorme made the trek and says it changed her life. Last July, she underwent the vein-widening procedure at a clinic in Albany, N.Y., and left four hours later with better balance, more energy and less trouble swallowing.

"They came on like a tsunami," Ms. Delorme recalled, "and they've stuck with me, luckily enough."

Now, determined to see other patients have the same opportunity, she has joined the national campaign to mobilize support and move the political agenda.

Whether they are MS patients, family members or friends, advocates of the Zamboni treatment have harnessed the power of social media to create petitions and letter-writing blitzes, to generate media attention and mount nationwide rallies.

"It's a war," said Wayne Feaver, who runs a Facebook page dedicated to the cause that he said generates a million hits a month.

Mr. Feaver, who has a friend with MS, started the Toronto-based online group out of frustration after medical experts expressed skepticism about Dr. Zamboni's research and the validity of the vein-widening procedure. "I was so pissed off," he said.

He wasn't the only one.

In the less-than two years since MS patients started reporting symptoms seeming to disappear after their neck veins had been widened to improve blood flow, hundreds of Facebook groups, online forums and Twitter accounts have arisen to galvanize support for the surgery, called venoplasty.

Participants don't mince words. A forum promoting a protest in Vancouver demands "equal access to testing and treatment" in Canada and an end to "discrimination."

Strongly worded blogs and postings on Facebook also accuse the medical community of being in league with pharmaceutical companies to squelch Dr. Zamboni's research because, as one put it, "MS is a multibillion-dollar business" the new approach "threatens to destroy."

The social-media campaign helped propel the debate into the political arena.

The Manitoba and Saskatchewan provincial governments, both up for re-election this fall, announced in recent months that they will commit $5-million each to medical trials for the liberation procedure. The Canadian and U.S. national MS societies also have been persuaded to set millions aside for research.

The federal Health Minister convened a panel of experts to determine whether the controversial treatment should be made available, and ultimately decided against it. But the New Democrats' health critic, Megan Leslie, has pressed the government for access, while Michael Ignatieff, while still leader of the opposition, had said the Liberals would underwrite medical trials.

Etobicoke North MP Kirsty Duncan, one of the few Toronto-area Liberals re-elected last week, is an especially vocal proponent. Trained as a medical geographer, she has a cousin with MS, and in March complained "how special interests co-opted science" during a speech in Poland on behalf of the procedure.

Medical community concerned

Ms. Delorme credits the Internet with the movement's growing might. "It gives you a huge pool of information, first-hand, from patients," she explained. "The underlying story is … how much faster we're trying to push this issue."

But concern is mounting in the medical community that the power of the Web has some potentially dangerous consequences.

Last month, Canadian researchers warned in an article in the prestigious journal Nature that "these groups have used the Internet and social media … to attack the credibility of those advocating caution."

But Zamboni advocates argue that because so many patients have experienced relief from the treatment, they have a duty to counter the negative response from the medical community.

The many testimonials posted online "are pretty strong," Ms. Delorme said.

They also can be deceiving, the experts say. They cite such scientific wild cards as the placebo effect - when patients seem to thrive simply because they want to so badly - and the fact that self-reported data can be unreliable. What's more, it's hard to find any testimonials from the patients who saw no change, experienced serious side effects or died.

"The normal communication networks that we're used to dealing with within the scientific and the medical community are sort of breaking down - it's no longer a conversation that's happening among scientists behind the scenes," said Steven Novella, assistant professor of neurology at Yale University and executive editor of the blog Science-Based Medicine.

"Suddenly, you have a public demand for a treatment that hasn't even gone through the basic vetting yet. We haven't even figured out if the phenomenon is real, let alone what it means, let alone how we should treat it. They're sort of jumping three, four steps ahead of the game and demanding treatment and trying to dictate research priorities."

Such controversy doesn't faze Ms. Delorme.

"I'm glad we're driving things, be it research or be it getting stuff done here in Canada," she said.

"This condition is out there. It exists. It's not a hoax."

Next: Conflict of interest - on both sides of the battle.

The Trouble with testimonials

Grateful patients are often eager to spread the word when something seems to have cured what ails them - in some cases doubly so.

Last year, a Canadian with multiple sclerosis identified only as Denise Tomkins testified on a website that she had undergone Paolo Zamboni's "liberation procedure" at a clinic in India.

"This is fantastic," she reported. "As each day progresses after the procedure, I feel better and better."

Four years earlier, however, she appeared in videos for China-based Beike Biotechnology, describing her pain and great difficulty walking until, again, treatment eased her suffering and the need for a cane.

What treatment? This time it was a stem-cell injection that also showed potential in the battle against MS but had yet to be proven safe and effective.

In both cases, Ms. Tomkins seemed to have bet on a sure thing.