A St. Albert woman says she's glad that a national organization has committed a million dollars to fund trials of a treatment she underwent for multiple sclerosis.
The Multiple Sclerosis Society of Canada said Thursday that it had set aside $1 million to fund a future trial of the so-called liberation treatment for multiple sclerosis (MS). The experimental treatment, which is not yet approved in Canada, uses balloons or stents in veins to try and treat the neurological disease.
The federal government said this month that it would not commit funding toward a national trial of the treatment, as there was not yet enough evidence that it was safe and effective. A report from the federal Canadian Institute of Health Research in August said the government should hold off on a trial until more research is done.
This money is meant to kick-start a clinical trial should it ever happen, said Neil Pierce, president of the MS Society of Alberta. A full trial will likely cost about $11 million.
Connie Beaudette, a St. Albert resident who spent $20,000 to get the treatment in Mexico this year, says this is a great idea, noting that she's already had many calls from residents interested in it. "Alberta should get it and do the procedure here."
Controversial treatment
Dubbed the Zamboni treatment after its inventor, Dr. Paolo Zamboni, the treatment is based on a theory called chronic cerebrospinal venous insufficiency. "It's a plumbing problem," Pierce explains.
Zamboni's research suggests MS may be caused by blocked veins connecting to the brain, and could be relieved by stretching those veins with balloons or stents. Other researchers have yet to reproduce his findings, and Zamboni has called for more research on the subject.
Beaudette says she turned to the treatment this summer after her condition worsened. It was a simple procedure, she says, done by professional staff in Mexico. "He [the doctor] used a local anaesthetic in my groin and he listened to Pink Floyd the whole time."
She says she felt an immediate difference: her hands and feet are warmer, and she no longer needs pills to sleep at night. "I drove last Wednesday for the first time," she says. "I feel like my life has come back."
Alberta Health Minister Gene Zwozdesky says he's met many MS patients who've undergone the treatment, and they say it's given them greater use of their arms and legs.
Researchers across the nation are now studying the treatment, Zwozdesky says, and should be able to make a decision on a clinical trial soon. "We're talking months, not years." He planned to meet with a panel of provincial experts next week to see what else Alberta could do to speed up research. Once we know the treatment is safe and effective, he says, the province would certainly support a pan-Canadian trial.
The Zamboni treatment could put patients at risk of blood clots and stroke, Pierce says. Anyone considering a trip abroad for the treatment should talk with his or her doctor and neurologist first. "Everyone needs to be well informed of the risks."
Even if it's not permanent, Beaudette says, the treatment definitely works. "There are so many people who want to go but can't afford it," she notes, and having it available in Alberta would give them a clean, safe place for treatment.
Right now, she says, all local doctors can do is offer MS patients drugs, many of which have harmful side effects. "People just want their life to go back to normal."
