Alberta ponders paying for new MS treatment

The Alberta government is looking at whether to follow Saskatchewan's lead and pay for studies of a controversial experimental treatment for people with multiple sclerosis.

Alberta Health Minister Gene Zwozdesky is pulling together a working group of about a dozen people to examine the issue, he said Thursday.

The group will look into whether the province should pay for clinical studies of the so-called liberation therapy. Thetreatment is based on research by Italian physician Paolo Zamboni that suggests MS, a baffling nerve-wrecking disorder, stems from iron buildup due to constricted blood flow out of the brain.

Earlier this week, Saskatchewan announced it will pay for clinical trials of the surgical procedure, which opens up blockages in the cerebrospinal veins.

Several dozen Canadians have already travelled overseas to Eastern Europe and India for treatment, paying $10,000 to $15,000 each to have balloons inflated inside their neck and chest veins to improve blood flow.

After talking to patients, Zwozdesky said he's convinced it's worth looking at given some of the experiences people have had after receiving treatment.

"It's simple stuff, everyday stuff such as the ability to comb your own hair or put on your own clothing or wiggle your toes, to put the cane aside, even if it's just for a few moments, and feel liberated," the minister said.

"There's some compelling testimonials. The trick now is how do we translate that into the clinical studies that are still necessary."

'I could walk better'

Claire Bungay of Stratford, P.E.I., underwent the procedure in Poland earlier this month.

"I noticed right away I could walk better," Bungay said afterward. "I could lift my right leg over my left leg without having to haul it over with my hand. That was huge."

York, P.E.I., resident Neva Tremere had her procedure in Bulgaria. She used to average a couple of painful leg spasms a day, each lasting hours, she said. Now she sometimes has spasm-free days, and when they happen they don't hurt as much. It's the best she's felt in five or six years, she said.

The treatment is not yet available in Canada.

The Multiple Sclerosis Society of Canada says Zamboni's work which suggests that MS results from iron buildup in the brain as a result of the vein constrictions, and not from an autoimmune condition is worthy of interest and optimism. But the society says therapeutic widening of veins needs much broader investigation than Zamboni's trial, which involved 65 people.

Paul Hbert, an Ottawa physician, medicine professor and editor in chief of the Canadian Medical Association Journal, warned that "the evidence for this procedure is very, very limited to date."

"The idea of this procedure and this particular hypothesis to the cause of MS is really interesting. It's worthy of further study," Hbert said. "But I have to caution anyone ... that this is highly experimental."

Zwozdesky said his working group will hold its first meeting in September, and there will be discussions about the experimental therapy at a national conference in the coming months.

In the meantime, people who go to other countries to get the treatment may not be reimbursed by Alberta medicare, he advised.