In centre of 'liberation' storm

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John Gardiner and his sister Gail Pilek were among the gathered supporters rallying at the Legislature on Wednesday afternoon to call on the province to fund research and open access to the vein-opening treatment for people with MS. (MIKE.DEAL@FREEPRESS.MB.CA)

At the height of last summer's national debate over the multiple sclerosis "liberation therapy," Manitoba Health Minister Theresa Oswald was being briefed weekly, suggesting the controversial treatment was top-of-mind for the minister.

But the province won't reveal details of the internal debate that prompted Oswald to hold off on clinical trials in Manitoba.

More than half the information in the briefing notes is censored -- in some instances, up to 90 per cent on each page. Still shrouded in secrecy is the government's internal analysis of the issue, including recommendations and cautions from Manitoba's senior health experts.

In an interview, Oswald said she heard from vascular surgeons, doctors from the MS Clinic in Winnipeg, researchers and her own staff, many of whom cautioned her against launching isolated clinical trials too early.

"There's no question I began my journey by saying 'Let's just start clinical trials right now,' " said Oswald. "But it became really clear if what I wanted to do is cross the finish line with an answer, one of the worst things we could do as a nation is go off in different directions doing a patchwork of trials."

Oswald said she got opinions on both sides of the debate, including from MS sufferers and advocacy groups, but she wouldn't name names. She said doctors and health staff must be free to give her frank advice knowing their submissions will remain confidential. She said the issue is so emotionally charged, some doctors have even been threatened in other jurisdictions.

In September, a freedom of information request revealed that from late 2009 to mid-2010, Oswald was given 14 briefing notes on the vein treatment widely known as liberation therapy. Six were delivered to her between June 15 and July 23, shortly after the first MS Liberation Day rally was held at the Manitoba legislature and a week before Oswald announced on July 29 the province would not perform its own clinical trials of liberation therapy.

Saskatchewan has offered to fund clinical trials within its province, and Newfoundland and Labrador is launching its own "observational studies."

Manitoba has called for co-ordinated, pan-Canadian trials and is willing to chip in $500,000, but Ottawa has said it will not fund trials of a therapy many doctors call unproven and dangerous.

Oswald said she was "like a dog with a bone" at a recent meeting of health ministers who agreed, some reluctantly, to co-operate on clinical trials, if and when they get the scientific go-ahead. They are awaiting the results -- expected in a matter of months -- of seven diagnostic studies that are expected to help their decision on whether to proceed.

Still, many of the 3,500 Manitobans living with MS are left wondering why Manitoba won't launch its own clinical trials.

"A treatment like this is definitely not a cure, but it's been proven so successful it really makes you wonder what's steering them away from it," said Bob McCutcheon, a 44-year-old Strathclair farmer diagnosed in the fall of 2008.

McCutcheon, who has a wife and 13-year-old son, says he is lucky his MS has not progressed very far, but he struggles daily with a common and frustrating side-effect of the disease -- fatigue.

"I do my best -- I'm not the type of guy who likes anyone feeling sorry for me," McCutcheon said. "So while a lot of days I don't feel like doing anything, I try to put it aside and usually once I'm out the door, I'm fine. But it's a real motivation-killer when you're feeling tired all the time."

In November, McCutcheon travelled to Fargo to be screened for chronic cerebro-spinal venous insufficiency (CCSVI). The results were positive, meaning his veins are compromised, and he's now deciding what to do about the surgery.

Canada has the one of the highest rates of MS but liberation therapy is not available. If patients travel to Poland, India, Costa Rica, Mexico, Belgium or a handful of other countries, they can be "liberated."

But that comes with significant risk. In October, an Ontario man with multiple sclerosis died of complications after undergoing liberation therapy in Costa Rica. Mahir Mostic's death touched off new debate over the effectiveness and risks associated with the treatment.

kimlawson_8@hotmail.com tkaratchuk@gmail.com

Republished from the Winnipeg Free Press print edition December 27, 2010 A6