On December 16, Alberta committed $1 million to fund observational studies on Canadian MS sufferers who have travelled out of country to receive the much debated “liberation treatment”.
Drumheller resident Frank Laslo is one of hundreds of Canadian citizens who have travelled abroad to receive the treatment which has yet to be approved in Canada. It involves opening up the major veins in the neck with a balloon to increase blood flow and the movement of iron deposits from the brain. The relation of these deposits and outward blood flow to MS has yet to be proven.
But just over three months later, positive results are showing in the 71 year old man who travelled to India on October 17 to receive the $13,000 procedure.
“We know it’s not a cure,” says Frank, who was diagnosed in 1991, “but it has increased my quality of life. Any little bit that can help means a lot to a person with MS.”
There were immediate changes for Frank after the one day procedure and hospital stay, says his wife Blanche: colour returned to his face, cold feet which many MS patients suffer has faded, he has more energy, better balance, and his restless leg syndrome is gone.
“He looks like his old self,” says Blanche.
“It was exciting– like a kid learning to walk,” she said, adding that five other Canadian couples travelled to the Indian hospital through a package deal with a company called Liberation Gateway, based out of Toronto.
“Of all the people we knew there, all had improvement in their quality of life,” says Blanche. One patient with them during their hospital visit suffered from a persistent 10 year headache which faded after the CCSVI (Chronic cerebro-spinal venous insufficiency) procedure.
Frank’s $13,000 procedure (not including air fare) was the result of months of research and being fed up with the 1,780 betaseron injections since 1998, which is said to reduce relapse rates in MS patients.
Frank had a 75 per cent blockage in his left jugular vein before the procedure.
“After you take it (betaseron) so long, it doesn’t seem to do anything. I have no idea how much it helped,” says Frank. “(The procedure) was expensive, but you can’t put a dollar figure on your health.”
“We’re not sorry we went, at all,” says Frank.
The Laslos are happy the Alberta government has committed $1 million dollars to conduct an “observational study”, which will track the results of Canadian patients who’ve travelled outside the country to undergo the liberation treatment.
“They should’ve been on that bandwagon to study when it first came out,” says Frank. “At his age, we couldn’t wait for 5 or 10 years,” his wife adds.
Drumheller MS Society Chapter President Deb Wynia is also happy to see Alberta start to fund research, following in the steps of Saskatchewan, Newfoundland and Labrador, and New Brunswick.
Wynia personally wishes they’d skip the observational study and go straight to clinical testing, but understands there is no concrete evidence as to the credibility of the procedure.
“Some people don’t have two or three years, but I do realize that this is probably the best way to go,” said Wynia.
“We are ahead of where we were two years ago. I’m just glad they (Alberta) are listening to us.”
Frank had no doubts when heading into a foreign country to receive the procedure, and encourages others with MS to research and take in consideration travelling for the procedure.
“In my discussions with MS patients and advocates, researchers, neurologists and other medical experts, we agreed that an observational study would be very helpful,” the National Post quoted Alberta Health Minister Gene Zwozdesky saying. “Our government is committed to help build the body of evidence that will provide a clear indication, one way or the other, about the safety and effectiveness of this new treatment,” Mr. Zwozdesky said.
Canada has one of the highest rates of multiple sclerosis in the world, with about 75,000 people affected by the disease.
Alberta’s observational study, which will be conducted at the University of Alberta and the University of Calgary, as well as by other experts, will look at the safety and the side effects of venous procedures, including the Zamboni treatment.
The Saskatchewan government in October announced a $5-million commitment toward funding clinical trials for the treatment, making it the first province to initiate such research. Newfoundland has undertaken its own observational study of the treatment.
