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MS patients rally for new treatment

People with multiple sclerosis and their supporters rallied outside theNova Scotia legislature yesterday, pressing for more funding andresearch for an unproven treatment for the disease.

People with multiple sclerosis and their supporters rallied outside the Nova Scotia legislature yesterday, pressing for more funding and research for an unproven treatment for the disease.

About 30 people — a half dozen of them in wheelchairs — called on the NDP government to approve the procedure and provide funding for those seeking testing and treatment.

Christopher Alkenbrack, a 42-year-old former teacher from Wolfville, said governments should start offering help now, even though the treatment is still in the experimental stage.

“I'm not in a wheelchair yet, but I could be soon if I don’t get this procedure done,” he said, leaning heavily on a pair of crutches. “They need to act immediately.”

Alkenbrack, who was diagnosed when he was 24, said his battle with the disease has become a serious burden. He was forced to quit his job as a principal in Quebec six years ago and his health is in decline. He recently cashed in his RRSPs and is planning to travel to Poland on May 15, where he will receive the treatment.

He said the trip is expected to cost him $15,000.

“There’s all kinds of people in Nova Scotia and all over Canada who don’t have the means to make a trip overseas and get this procedure,” he said.

The activists want researchers to speed up work on an Italian doctor’s theory that narrowed neck veins cause blood-borne iron deposits to build up and damage brain cells, and that unblocking the veins will help people with MS.

But many neurologists say much more study is needed.

Una Nordqvist of Halifax has battled MS for about 20 years. She said she understood that experimental treatments need to be subjected to rigorous testing, but she insisted that the new treatment should be quickly approved because it is a simple procedure that has few side-effects.

“It’s a very non-invasive treatment,” she said.

Nova Scotia Health Minister Maureen MacDonald said the province needs to be sure the risks and the benefits of the treatment are clearly established.

 
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