Neva Tremere and Claire Bungay say procedure they underwent in Europe has improved their heal
© Guardian photo by Brian McInnis
Prior to seeking a controversial treatment for multiple sclerosis in Europe, Claire Bungay of Stratford wasn't able to cross one leg over the other without physically lifting it with her arm. Now she can. Bungay is disappointed in news the federal government and the Multiple Sclerosis Society of Canada have come out against clinical trials of the very treatment Bungay said helped her get better.
Aglukkaq said if there is enough evidence from the studies, they will proceed with pan-Canadian clinical trials.
Tremere said that process could take five years, time MS patients on P.E.I. and across the country do not have.
Bungay said the drug Copaxone, which treats MS, cost her $1,500 per month before she sought treatment in Poland on July 1.
Bungay said before she had the procedure done, she wasn't able to cross one leg over the other when she sat down without lifting it with her arms. Now she can.
She walked with a cane before. Now, she can walk fine without using it all the time. And, the leg cramps she suffered from before have diminished.
"It's quite disappointing to hear that news although I'm not surprised," Bungay said, referring to the MS Society's stand against clinical trials, at least for the time being. "I really do believe it comes down to money.'"
The treatment the Island women sought was conceived by Italian doctor Paolo Zamboni. His research found vein blockages in all the MS patients he examined, and no blockages in healthy people he used as control subjects. So he opens the veins by inserting a small balloon - a procedure called angioplasty - or by inserting a stent.
I think they are in cahoots with the pharmaceutical (companies). Right from the beginning, they said it (the treatment) was a hoax. I don't know, it's frustrating. Neva Tremere, MS sufferer
But, others argue it's not clear if MS causes blocked veins, if blocked veins cause MS or if the two are entirely unrelated.
Tremere doesn't understand why no one is monitoring the progress of people who have gone to Europe to have the procedure done although she freely acknowledges it hasn't worked for all MS sufferers.
"If they would follow those who have gone away, how they are doing, whether it's good or bad. I mean there have been some who haven't had any improvement but maybe it stopped (the progression of the disease). They don't know yet," said Tremere.
Yves Savoie, president of the MS Society of Canada, said a true clinical trial would have to be conducted at more than one institution, in more than one province and require more than 1,000 participants.
Tremere said he wouldn't have a problem finding those people.
Tremere and Bungay said they have no regrets about going overseas for treatment.
"I would do it again," Bungay said.
(With files from The Canadian Press)