Province cautious on trials for multiple sclerosis therapy

MANITOBA has no immediate plans to follow Saskatchewan's lead and fund clinical trials of the "liberation treatment" for multiple sclerosis patients.

Health Minister Theresa Oswald said she doesn't want to dash the hopes of local patients, but medical experts remain divided over the efficacy and safety of the procedure.

She also said she's unclear about the details of Saskatchewan's plan.

Earlier this week, Saskatchewan Premier Brad Wall confirmed his government's intention of funding clinical trials of the liberation procedure, saying he feels the province has a responsibility to support the potential treatment for some 3,500 MS patients there.

Wall said he expects to receive research proposals for clinical trials that could begin as early as late 2010 or early 2011. He said the duration and size of the clinical trial -- including whether out-of-province patients will be eligible -- will be determined by the medical experts conducting the research.

"We should be trying to find better treatments and one day a cure for MS, so I believe that's part of the job of the Government of Saskatchewan," Wall said during an interview with the Free Press on Wednesday.

Oswald said she is interested to learn more about Saskatchewan's approach, but Manitoba doesn't want to put all its research "eggs in one basket." She said the province will continue to support nationally co-ordinated efforts to determine whether chronic cerebrospinal venous insufficiency -- a condition in which narrow veins in the neck, chest and spine cause poor blood drainage -- could be a factor in MS.

Last year, Italian vascular surgeon Dr. Paolo Zamboni used a simple surgery to open the narrowed veins of the neck in 65 MS patients, with apparently dramatic results. Since then, an unknown number of Manitoba MS patients have paid to have doctors perform the procedure in countries as far away as Poland and Egypt.

"We know that at Stanford University, they were doing some liberation therapy and that was stopped because somebody died, there was another serious incident where someone was rushed into emergency surgery," Oswald said. "So there's some evidence out there that we need to take a cautious approach."

The province's wait-and-see approach has angered local proponents of the liberation treatment who think Manitoba should take the lead in advancing new MS research. Manitoba is considered an MS hot spot and has one of the highest rates of the disease in the country.

"Every month we wait, more people will be in wheelchairs, more people will go blind, more people will die. It should really be treated as an emergency," said Duncan Thornton, an MS patient who travelled to Poland for the procedure in March.

Thornton said Manitoba should get on board with Saskatchewan's plan and start offering the vein-opening surgery to local patients who are already seeking the procedure elsewhere. He and other local MS patients hope Saskatchewan's announcement will trigger a domino effect, so access to the therapy will soon open up in other provinces.

"I really hope it triggers an event where every province gets on board," said Nicole Benes, who flew to Alexandria, Egypt, for the liberation treatment in May. "I think it's a huge step in the right direction."

Both Thornton and Benes reported dramatic improvements in their quality of life since they had the procedure.

Wall plans to discuss the issue with fellow premiers when they meet in Winnipeg next week to see if there's any interest among his counterparts in broadening the scope of the clinical trial.

"We welcome any partners, but we understand this is a decision to be made in each place," Wall said. "I won't be pushing at all. I'm simply going to say here's what we're doing and others might be interested to broaden the scope of the trial, and the better it might be."

jen.skerritt@freepress.mb.ca

What is multiple sclerosis?

A disease that damages nerve fibres in the brain and spinal cord and can result in everything from muscle spasms and trouble walking to blindness, pain and chronic fatigue. Most cases of MS surface among young adults between the ages of 20 and 40. There are about 3,000 Manitobans living with MS and between five and 10 per cent are living with primary progressive MS.

What is the liberation treatment?

Italian surgeon Dr. Paulo Zamboni suspects the MS is caused by poor blood flow in veins draining from the brain. His experimental surgery to widen the veins using a stent or "balloon" has shown promising results and prompted the Multiple Sclerosis Society of Canada to say it will fund more research into the procedure.

Republished from the Winnipeg Free Press print edition July 29, 2010 A4