Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow. - Mary Anne Rademacher

Thursday, December 16, 2010

Canadians support liberation treatment trials: survey


A vast majority of Canadians believe the federal government should support clinical trials of the controversial "liberation treatment" for multiple sclerosis, and say it should be available in Canadian hospitals for patients who request it, according to a new survey.
In an online poll of 2,011 Canadian adults conducted Dec. 13 to Dec. 15, polling firm Angus Reid found that three quarters of respondents support government-funded clinical trials, while 82 per cent support making the treatment available to Canadian patients.
The poll found that 37 per cent of respondents had seen, read or heard something about the procedure, while another 13 per cent said they were well-informed about the treatment.
Half of respondents had never heard of the procedure.
The so-called liberation treatment has sparked a great deal of controversy over its founder's claims that MS is not an autoimmune disorder, as most experts believe, but rather a vascular problem that can be treated with balloon angioplasty.
The theory and treatment were developed by Italian vascular surgeon Dr. Paolo Zamboni, whose research suggests that the majority of MS patients have blockages in veins in their necks that prevent blood from draining from the brain. According to Zamboni, these blockages cause toxic levels of iron to build up in the brain, which triggers MS symptoms such as fatigue and paralysis.
Zamboni called the condition cerebrospinal venous insufficiency, or CCSVI, and began treating it with balloon angioplasty to open blocked veins.
Despite Zamboni's research, and successful follow-up studies conducted at the University of Buffalo, experts have remained skeptical of the treatment based on other research that has failed to prove the liberation treatment's benefits.
Earlier this year, the Canadian and U.S. MS Societies announced that they will offer $2.4 million in research grants for studies on Zamboni's theory. But the federal government has said it will abstain from funding clinical trials until further research is completed.
Meanwhile, patients buoyed by Zamboni's findings are travelling to foreign countries to have the liberation treatment, at great personal expense (and at great personal risk). Some patients have reported complications since returning home. One patient died in October after developing a blood clot around a stent that was put in during a procedure in Costa Rica.
The Quebec College of Physicians has warned patients that further research must be done on the treatment to prove its effectiveness and advised them not to seek treatment at overseas clinics.
But many Canadian patients have returned from outside Canada reporting a vast improvement in their symptoms. And the Angus Reid survey found that many Canadians believe the patients over the experts.
When asked which side of the debate over the liberation procedure they agreed with most, 61 per cent said they side with MS sufferers who have had the treatment and claim it has provided relief. Twelve per cent support the doctors who claim the treatment is unproven and risky, while 27 per cent said they weren't sure.
The survey was conducted online between Dec. 13 and Dec. 15 and has a margin of error +/- 2.2 per cent, 19 times out of 20

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