No MS 'breakthrough' study here

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Gordon Cuthbert says he would gladly sign up for experimental program, even if it only delayed the increasing toll his mutiple sclerosis is taking. (DAVID LIPNOWSKI / WINNIPEG FREE PRESS ) Photo Store

The research out of Italy, announced last year, could be the road to a cure for multiple sclerosis. Or it could be a crushing disappointment.

Now, some Manitobans affected by MS just wish they'd have a chance to find out.

On Dec. 14, before an overflow crowd of people with MS and their families at a special information session at Health Sciences Centre, provincial MS experts explained why Manitoba would not be conducting studies on the treatment regimen that has set the MS world abuzz.

"When they said they wouldn't do anything here, it wasn't very happy at all," recalled Gordon Cuthbert, 63, who has MS.

The "what ifs" over the research echo across a province with one of the highest rates of MS in the world. What if the so-called "Zamboni breakthrough" really works? What if it doesn't? What if it's too expensive, too new or just too good to be true?

That the answers won't come from Manitoba, for some, is infuriating. "Why isn't Manitoba diving in there?" said Ken Miller, a Winnipeg resident whose wife lives with the disease. "We're just doing nothing. Are we a have-not province? Are we too poor? Are we not energetic enough to get into the (research) grants available?"

The research was unveiled last year by Italian vascular surgeon Paolo Zamboni, whose wife was diagnosed with MS in 1995. Zamboni's "liberation procedure" -- a comparatively simple surgery to open the narrowed veins of the neck found in many MS patients -- produced dramatic results in many of 65 Italian patients. "I don't remember what it's like to have MS," said one Zamboni test subject.

In the face of a disease that can slowly steal the body, those words were a dream. "It's the only thing I've ever heard that sounds promising," said Cuthbert. "It looks like, OK, we got the problem."

Even as it cautioned against high hopes, the scientific community mobilized to try and replicate Zamboni's findings. In a move it called "unprecedented in (its) 60-year history," the MS Society of Canada put out a call for grant applications specifically to build on the Zamboni research, drawing from an open-ended funding pool.

In Buffalo, N.Y., research is underway on 1,600 volunteers. In British Columbia, specialized MRI machines were sought to carry out a study on vein narrowing in people affected by MS.

For now, Manitoba will wait and watch. "We don't want to jump into this haphazardly," the provincial MS Clinic said on its website in February. "As hard as it is to hear right now, the best approach is to wait to see how things progress."

The Manitoba Division of the MS Society agrees, citing an "ethical and moral duty" to its members. Health minister Theresa Oswald -- who will meet to discuss the Zamboni protocol with the MS Society on March 16 -- also said the decision to stay out of the research is more caution than cash.

"This is an untested theory that is being explored. It may turn out to be a very important one, and it may not," said Oswald, who called it "critically important" that Manitoba stay at the forefront of MS treatment. "There are always more ideas to explore than there are funds... In this case, the advice of medical professionals is to very closely follow emerging information, positive and negative."

For some living with MS, that's the right tone. "I feel like I can be extremely patient with (the research)," said Heather Slaney, 25, who was diagnosed two years ago. "Sure, I'd love to have the research done right now. But... we're really privileged to be in Winnipeg. We have amazing, amazing doctors here. It's just a matter of waiting."

Others feel they have waited enough, and watched enough. "Not to wish bad things on people," said one relative of a person with MS, "but if (health-care funders) had family members with MS, things might be different."

If the research into vein narrowing, and eventually the "liberation procedure," were available here, Miller's wife would sign up in a heartbeat. So would Cuthbert, even if the results only last a couple of years, as some have theorized. That grace period "would be worth it," Cuthbert said.

It would be better than the alternative. When he was diagnosed with MS in 1996, Cuthbert was a healthy life-support systems specialist for the Canadian air force; now, despite a cocktail of expensive medications, he struggles to walk, relying on his walker or his granddaughters' hands for support.

Worst of all, bad MS attacks sometimes leave him unable to speak. "Sooner or later I won't be able to walk," Cuthbert said in the condo that he and his wife bought and renovated to accommodate his declining physical abilities. "But if it doesn't get any worse... that would be OK. I can live like this. As long as I know I'm not going to get worse."

That's a promise the Zamboni research can't give -- not yet. But for families fighting to claim back life, Manitoba researchers' decision keeping them from gambling on hope is anathema.

"Let's just get this cured," Miller said. "What's the worst that could happen? If it doesn't work, it doesn't work. Let's not make it a 10-year study. In 10 years, my wife might be in a wheelchair.

"Give us a choice."

melissa.martin@freepress.mb.ca

MS and hope: facts at a glance

110

Number of new cases of multiple sclerosis diagnosed each year in the province

CCSVI

Chronic cerebrospinal venous insufficiency, a condition in which narrow veins in the neck, chest and spine cause poor blood drainage. Dr. Paolo Zamboni hypothesized that damage caused by that bad drainage could be a factor in MS, and that vein-opening surgery could improve it

56.4 per cent

Rate of CCSVI a follow-up study at the University of Buffalo found in MS patients, compared to 22.4 per cent of healthy control subjects. The results were announced last month

Republished from the Winnipeg Free Press print edition March 3, 2010 A4