MS Society stand against funding trials for new treatment frustrates Islanders

Dave Stewart
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Neva Tremere and Claire Bungay say procedure they underwent in Europe has improved their heal

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 governm

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)

Organizations: MS Society of Canada, Multiple Sclerosis Society of Canada

Geographic location: Europe, Saskatchewan, York P.E.I. Poland Iceland

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Recent comments

  • Allen
    October 04, 2010 - 18:57

    It is becoming obvious that the MS Society is loosing the respect of doners. Don't show up at my door looking for any more donations. I would like my money go directly to MS suffers with no money taken off for operational considerations. Surely there are enought retirees to run the organization on a volunteer basis.

  • Yvonne
    October 04, 2010 - 14:57

    I had the angioplasty procedure 13 weeks ago. For the past 5 years I have been going downhill with MS and especially in the year previous to angioplasty. I have been on 5 different pain medications in the past 5 years to help alleviate the pins and needles pain that I had in my torso area. All the of drugs come with warnings of side effects and NONE of them took the pain away. I have been on medication for fatigue. Same thing, they all come with warning of side effects and NONE of them took the fatigue away. I am an optimistic person and believed the doctor each time he switched my medication when he told me that this one would work. He lied to me. For five years I listened to everything my neuro told me to do. For five years I continued to decline. 13 weeks ago I did what I wanted to do! 13 weeks ago I had angioplasty to open 4 blockages in my jugular veins and my azygos vein. 13 weeks ago I walked out of recovery with my balance back! I was able to walk backwards on my toes! The numbness in my face, my foot and my hand went away. The tightness in my torso which made it hard to take a deep breath is gone! The pins and needles are tolerable with only Tylenol. No more prescription pain meds. I feel like I am in my own world now instead of swirling around with dizziness. I feel grounded. I can ride my bike again, something I haven't done in 5 years because of balance problems. How can anyone not see that this is helping? How can the government who is refusing us this procedure sleep at night knowing that people are worsening with this condition and people are dying? Yes, people die from MS!!!! Where is the compassion?

  • David
    October 04, 2010 - 14:04

    I will start off by stating there is something to be said for research and studies performed by the scientists, charities, and health Canada to ensure no enduring or long term effects result from the procedure. No question. Not being able to put myself in the shoes of an MS sufferer it is hard for me to say but seeing the disabling effect that it has on people around me i can't help but think how many of these people would give anything to see a regression or delay in the symptoms of the disease. It is for this reason that i see no point in delaying clinical trials, i'm sure there are many people that will sign up for the testing with no strings attached. Even if the results are only temporary for the procedure, it makes you wonder how much a person would appreciate a week, a month, or more of an improvement. Let's put the decision in the hands of the patient for once instead of a large agency.

  • J.M.
    October 04, 2010 - 10:54

    I think I am confused about your headline and story. The MS Society announced in Sept a $1 million commitment to funding clinical trials. (link can be found on their web site and it was also in national press) As far as I know, because as an MSer, I've been watching this carefully, they're the first people who have attached a dollar amount to making this happen in Canada. No one else has government or otherwise. I am disappointed once again that people are trying to make villains out of the wrong people,.

  • ABrennan
    October 04, 2010 - 09:23

    I too have MS and am getting frustrated at hearing about the government not paying for clinical trials to put an end to this. Does it work or doesn't it work? Is it a short term fix or a long term fix? I have my doubts. Zamboni only used approx. 60 people for his study. Others who have started doing trials can't duplicate his results. Increasing blood flow to the brain would help in anything. It doesn’t mean your MS is getting better or becoming dormant. Most who has had this procedure says they feel as good as they did 5 years ago but none of these people have said their MRIs are showing the same result. Have their plaques disappeared or are they still there? That is the real determinant if this procedure is working and that their MS is regressing instead of progressing. I’m glad the ones who did go to have this procedure are getting back some quality of life back but I’m on the side of the MS Society and the others. Full 5 year studies need to be done to determine if this is actually a viable solution versus the meds or to continue on the other studies that may have a true viable solution to this disease.

  • big mouth
    October 04, 2010 - 08:47

    You can be sure that the pharmaceutical companies that sell the MS drugs do not want to change anything,,we are talking big money here..they also donate to the MS Society and I wonder if they have they threanted to cut that off ? People who make the decision not to go for the trials, are ,indirectly, being paid by the big drug companies,,,dah!!! Does anybody really care about the MS patients ?including the MS Society of Canada,,,,,

  • Tom Ogden
    October 04, 2010 - 08:38

    Looking good, Aunt Claire! Disappointing to see news like this coming from the MS Society and the feds when I've seen first-hand the benefits that the Liberation Treatment has made in your everyday life, and after hearing the success stories of several other MS patients who've been treated outside Canada. Here's hoping they change their minds!