Thursday, May 6, 2010

In Canada, protests for access to MS treatment

From the Ottawa Citizen:

OTTAWA, Canada — A fast, easy cure for multiple sclerosis has been found, but Canadian health officials won't let MS victims have it, protesters said Wednesday on Parliament Hill.

About 200 people, many in wheelchairs, called on the federal government to get behind a new treatment they believe can cure the degenerative disease.

"I feel like (health officials) are dangling my life in front of me, and laughing, 'Can't have it! Can't have it!'" said Christin Benoit, her voice trembling as she spoke to the crowd from her wheelchair.

Benoit believes she might be cured by a surgical treatment that approaches the disease as a vascular disorder, not a neurological problem.

Italian vascular surgeon Paolo Zamboni found that 90 per cent of MS patients in his 2008 study had malformed or blocked veins that could not adequately drain blood from the brain. This caused a buildup of iron, which triggered the characteristic neurological problems of vertigo, fatigue, vision impairment and loss of sensation and co-ordination.

A simple angioplasty can open the veins and solve the problem, proponents believe. But Canada doesn't offer this treatment, and research funding has been minimal.

Ottawa resident Evan Thornton had the surgery in Poland, and has been delighted with the restored energy and feeling in his hands. But he had to pay $11,000, none of it covered by insurance.

Andrew Katz, 51, organized the rally in Ottawa, one of about 12 across the country.

"We want the federal government to put pressure on the provincial health ministers to fund testing and treatment of this condition."

Katz was critical of the Multiple Sclerosis Society for its sluggish response to the possible cure. "The MS Society is in the pocket of neurologists — strong words, I know — but they are most to blame . . . for this procedure not going forward."

The society has earmarked $200,000 over two years for research on this procedure. "That's a joke," scoffs Katz.

The crowd booed at the mention of the MS Society, especially when one protester pointed out it collected $28 million in donations last year.

Yves Savoie, president and CEO of the MS Society, said he is appearing before the parliamentary subcommittee on neurology Thursday to ask the government to contribute an additional $10 million to research.

"Our position is that this (possible cure) is very exciting and it opens up a new avenue for potential discovery and treatment," he said, adding that as much as they may long for instant treatment, MS patients should go through the proper trial procedure for their own safety.