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Paolo Zamboni in his studio at the University Hospital of Ferrara. (Alessandro Vincenzi For The Globe and Mail/Alessandro Vincenzi For The Globe and Mail)
Paolo Zamboni in his studio at the University Hospital of Ferrara. (Alessandro Vincenzi For The Globe and Mail/Alessandro Vincenzi For The Globe and Mail)

Newfoundland to fund study of controversial MS therapy Add to ...

Newfoundland is joining Saskatchewan in funding studies of a controversial therapy for multiple sclerosis, leaving behind the more cautious federal approach that has so far been mimicked by the other provinces.

Health Minister Jerome Kennedy stepped out of a meeting with his provincial and territorial counterparts on Monday to announce that his government would devote funds to monitor Newfoundland patients who pay to have liberation therapy performed in countries where it is allowed.

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As the ministers met to discuss controlling costs and other high-priority health issues, including sodium intake, drug prices and childhood obesity, Newfoundland's move to fund observational studies came as a surprise.

None of the other health ministers at Monday's meeting were prepared to launch similar studies. Instead, they said they will put together a working group to lay the groundwork so that the trials can be accelerated if research currently under way shows promising results.

Health Minister Leona Aglukkaq, who is in Newfoundland and will meet with the provincial and territorial ministers on Tuesday, said she will wait for that discussion to comment on Newfoundland's move.

It was a conversation with a St. John's lawyer whose own multiple sclerosis symptoms significantly decreased after he underwent liberation therapy that convinced Mr. Kennedy to ask neurologists whether something could be gained by examining people who have had the treatment.

Mike Duffy, an outspoken local advocate for those with the disease, was one of the first multiple sclerosis patients to meet with the Newfoundland minister as the debate about the therapy developed by Italian doctor Paolo Zamboni was intensifying.

Mr. Duffy "indicated to me he had gone away and had the Zamboni procedure, that he couldn't walk 65 feet prior to that procedure, that he was now dancing with his wife, playing with his kids, riding his motorcycle. And he suggested at that time that maybe an observational study is one that could be carried out," Mr. Kennedy said Monday in an interview with The Globe and Mail.

It is a demand that has been made by MS patients in all parts of the country, who are clinging to the hope that the treatment could be the cure for what is a terminal and debilitating illness.

The Canadian Institutes of Health Research said two weeks ago that there is no evidence to suggest Dr. Zamboni's theory that MS is related to a buildup of iron in the brain is sound, or that liberation therapy is effective, or that it is even safe.

The CIHR recommended that the federal government postpone funding of clinical trials until it has the results of seven research projects being funded by the MS Societies of Canada and the United States. That research, which could take two years, is examining various aspects of the Zamboni procedure.

Most of the provinces have accepted that advice.

"I think it's safe to say that we agonize over many issues that we want to address and certainly MS is one of those issues," said Nova Scotia Health Minister Maureen MacDonald, who spoke on behalf of her provincial and territorial counterparts.

"We have agreed as ministers that we want to act as quickly and as ethically for MS patients. ..."

Gene Zwodesky, Alberta's Health Minister, said he is going to ask his own researchers to take a look at what they can do to speed up the research being conducted in his province.

And Manitoba's Health Minister, Theresa Oswald, who asked that the MS treatment be discussed at this week's meeting, said she would have backed a pan-Canadian study like the one to be conducted in Newfoundland. But she questioned the ability of one province to go it alone.

Perhaps that will be a recommendation of the working group created by the health ministers, said Ms. Oswald.

Mr. Kennedy said the neurologists in his province have told him the observational study would be scientifically valid and he would have liked other provinces to have joined the effort.

"It's clear that all the provinces are very concerned about finding an answer to the question of whether or not the Zamboni procedure works," he said. "But, at the end of the day, each province will take steps that look after their own citizens and this is what I am doing here."

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