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Expert says New Brunswick's MS 'liberation' fund has political motives

Paolo Zamboni in his studio at the University Hospital of Ferrara. Story details: New way of thinking about debilitating disease has yielded stunning new treatments ? but MS societies urge sufferers to be cautious before experimenting. Elena Ravalli was a seemingly healthy 37-year-old when she began to experience strange attacks of vertigo, numbness, temporary vision loss and crushing fatigue. They were classic signs of multiple sclerosis, a potentially debilitating neurological disease. It was 1995 and her husband, Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, set out to help. He was determined to solve the mystery of MS ? an illness that strikes people in the prime of their lives but whose causes are unknown and whose effective treatments are few. What he learned in his medical detective work, scouring dusty old books and using ultra-modern imaging techniques, could well turn what we know about MS on its head: Dr. Zamboni's research suggests that MS is not, as widely believed, an autoimmune condition, but a vascular disease.

Alessandro Vincenzi/Alessandro Vincenzi for the Globe and Mai

A leading authority on multiple sclerosis says a New Brunswick government promise to help patients access so-called "liberation" therapy outside the country is rooted in politics rather than science.

The province's Conservative government says it will set up a $500,000 fund to assist people with MS access the treatment, which has not undergone clinical trials in Canada.

Neurologist Dr. Jock Murray of Dalhousie University in Halifax says the promise is contrary to the caution other provinces and the Multiple Sclerosis Society of Canada are exercising.

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"I think this was a feel-good election promise," Dr. Murray said. "They're now going to have to think seriously about how they're going to make this work."

Saskatchewan and Manitoba have committed funding for clinical trials of the treatment and Newfoundland and Labrador is conducting an observational study of patients who have sought it.

Only New Brunswick has gone so far as to promise funding to help people undergo the treatment abroad.

Provincial Health Minister Madeleine Dube said how the fund would be dispersed is still being worked out, but that the money would have to be matched by contributions from the public.

"We are working very diligently to see how this program will work," she said. "All the parameters are on the table right now and we're working with stakeholders to make sure we have the right program and right access to give them the help they need."

Pioneered by Italian vascular specialist Paolo Zamboni, liberation therapy involves widening constricted neck veins to improve blood flow from the brain.

Dr. Murray said he is concerned that people will use the money to go to clinics in places such as Puerto Rico and Tijuana, Mexico that use stents - expandable tubes that prop veins open.

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"The deaths and complications that have occurred have all been people who have had stents," he said.

"Does it mean that anybody who wants to go just applies and gets some money? Does it matter where they go? Does it matter what the cost is? Does it matter if they elect to go for a procedure that isn't recommended?"

Ms. Dube said such details will be announced early in the new year.

But the MS Society of Canada is advising patients to take a more guarded approach.

"We think anyone who is going to take part in an experimental treatment should consider doing that in the confines of a clinical trial setting because there are safeguards in place for them," said Starr Amey, a spokeswoman for the society's Atlantic division.

"We really don't know about the treatment's safety or effectiveness yet and that's why we're studying it."

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Tim Donovan, a village councillor in Fredericton Junction, N.B., said he doesn't need any more convincing. The 59-year-old underwent the procedure at a clinic in Albany, N.Y., this summer.

"Amazing ... as soon as I got off the table I had my balance back," he said. "I didn't have to flail around with my arms or to hold onto walls and furniture to walk. This doesn't happen to everybody but it happened to me, and I got my energy levels back."

Mr. Donovan, who was diagnosed with MS 24 years ago, said the treatment has turned back the clock for him by 15 years in his ability to function.

"I'm passionate about this because I know it works."

The New Brunswick government made its promise prior to the recent death of an Ontario man who developed complications after having the treatment. But Premier David Alward has steadfastly defended his position.

"Unfortunately, everyday in New Brunswick, everyday in Canada, we see people who die as a result of medical intervention. At the same time, we see the tremendous impact of people who are cured because of medical interventions of all types," he said last month.

Mr. Alward said he has received emails from people urging him to set up such a fund.

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