Wednesday January 17th 2018

Edmonton group lobbies for faster MS treatment trials

An Edmonton-based group pushing to bring controversial multiple sclerosis liberation therapy to Canada say the federal government isn’t acting quickly enough.

“Time matters with MS,” said Kirsty Duncan, Liberal MP for Etobicoke North. “A one-month delay could mean the difference between walking and not walking.”

Duncan joined Chronic Cerebrospinal Venous Insufficiency Alberta at a seminar in Edmonton Saturday to get the word out about the treatment, not yet offered in Canada.

She said the bureaucratic process for clinical trials is too time-consuming.

“It may be three years before we get answers from the clinical trials,” Duncan said.

The treatment removes blockages in veins with a procedure founded by a former vascular surgeon in Italy. Proponents say it increases blood flow and help relieve MS sufferers from some symptoms. Others say it is unproven and potentially dangerous.

The federal government approved clinical trials of the treatment a little over a month ago but no timeline has been announced. The Alberta government has also announced they will fund research on the treatment.

“I’m not very happy that what I called for last May, took this long,” Duncan said.

In an open letter to parliament last year, Duncan asked the government to consider bringing the treatment to Canada, but her proposal was ignored at the time.

She said speakers at the conference are anecdotal proof that the treatment works.

Tim Donovan, a 60-year-old New Brunswick man who received the liberation therapy about a year ago, says his quality of life has improved dramatically.

Donovan has suffered from MS for 25 years and used to be in a wheelchair. Now, Donovan is walking and even jumping.

“I’ve travelled across Canada and have met so many people who have got better,” he said.

Krysteen Fitzgerald, a 29-year-old police officer from the Edmonton area, said she is almost completely back to normal after receiving the treatment. Fitzgerald was partially paralyzed on the right side of her body and was unable to work full-time.

Fitzgerald says she now no longer walks with a limp.

“I went back to running and working,” she said.

But many physicians are still leery of the treatment saying it is too dangerous and its benefit and long-term affects are still unknown.

Two Canadians have died from the procedure and others have experienced serious complications or no relief at all. Patients must also go outside of Canada for the surgery and the treatment can be quite costly. On average, MS Liberation therapy costs $10,000 to $20,000 with travel expenses.

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