Saturday, August 18, 2012

City man with MS awaits spot in N.Y. clinical trial

Andrew Dahlen first noticed something was wrong when he was no longer able to lift his guitar.

"I tried to play a G chord. At the time I had been playing guitar for 12 years and the G chord is one of the easiest chords to play and I couldn't even do that," Dahlen said, sitting in the backyard of his Saskatoon home.

At 22, Dahlen was diagnosed with multiple sclerosis. For the past six years, the disease has progressed, severely reducing mobility on his left side. He walks with a limp, has trouble performing everyday tasks and can no longer play his favourite instrument. But on Thursday he said his guitar - which he fondly named Chuggah - isn't going anywhere.

On Monday, Dahlen will travel to Albany, N.Y., for the final stage of eligibility screening for a clinical trial for chronic cerebro-spinal venous insufficiency (CCSVI). There he will learn if he will become Saskatchewan's first patient to participate in the clinical trial for the controversial multiple sclerosis treatment, also known as liberation therapy.

"It's about 30 per cent terrifying and 70 per cent exciting," said Dahlen, 28.

Saskatchewan's government is spending $2.2 million to help fund the Albany, N.Y.-based clinical trial in which 86 of the province's residents will take part.

The Albany trial is thought to be the largest double-blind study of its kind to date into the treatment. Half the patients will get the treatment and half won't. But Dahlen said regardless of whether he gets the treatment, he is happy to contribute to the research.

"Me having it might help out research for future generations. I know that there is lot more people who are going to get diagnosed," Dahlen said.

Dahlen will spend several days at the Albany Medical Centre, where a final assessment will determine whether he will be accepted.

Saskatchewan Health Minister Dustin Duncan called Dahlen's trip to New York a "groundbreaking day for our province and science" and thanked Dahlen for his willingness to take part in the study.

"Again, there still are some questions and that's why we want to be a part of trying to find answers to some of those questions, whether this is an effective treatment or not," said Duncan at a news conference Thursday.

CCSVI was first hypothesized by Dr. Paolo Zamboni. The Italian doctor has theorized that MS is the result of collapsed veins in the neck and upper chest, not a neurodegenerative disease as has been thought.

His treatment uses balloon angioplasty to open up the veins, in the same way coronary arteries narrowed by plaque are unblocked.

While clinicians in Canada do not perform the unproven procedure, many MS patients have travelled abroad for the treatment.

In June, a study commissioned by the government of Newfoundland and Labrador found patients who underwent the so-called liberation treatment experienced no measurable benefit from the procedure.

Saskatchewan has one of the highest rates of MS in the world, with an estimated 3,500 residents diagnosed with the disease, which impairs or destroys the functioning of nerve cells in the brain and spinal cord.

Duncan says he knows of the Newfoundland study, saying it was a followup with patients who travelled to various locations for liberation treatment.

"I think there are some differences, though. (The Albany trial) is being undertaken in one location under the care of one team of health care providers," Duncan said.

Dahlen, who had previously been fundraising on his own to travel to California for the treatment, is proud of any role he can take in contributing to the research process.

"Even if it only gives me back life for two years, those are two years I never had before. If it doesn't work, it never really hurts to try," he said.

cthamilton@thestarphoenix.com

? Copyright (c) The StarPhoenix

Source: http://www.thestarphoenix.com/health/City+with+awaits+spot+clinical+trial/7103622/story.html

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