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I definitely agree that a class action suit will add pressure to see this resolved more quickly. However, is it not the MS Society and the MS Clinics that are our main stumbling blocks? If they would use their resources both to lobby the government for treatment and to find and support radiologists to treat us, we would have local options within weeks.

I am a perfect example for such a lawsuit. I am too disabled to travel overseas for treatment, yet I live just 3 blocks from the False Creek Surgical Care Centre, 7 blocks from Vancouver General Hospital and a 20 minute bus ride from the UBC MS Clinic. Relief from fatigue might be enough to allow me to return to work. An end to the progression will practically guarantee that I can continue to live in my own home.

SOMEONE is responsible for denying me these opportunities. I can't wait while they dither about their studies. Financial compensation is hardly a fair substitute for relief from my symptoms but somebody should pay for my pain, heartache and lost opportunities, not to mention the cost to my friends and family. There is also the increased cost to the medical system that will be necessary to pay for the increased care that I will need.

The mere threat of a lawsuit might be what is necessary to get these groups on board. They certainly seem to care more about money than they do about us. I think we should get it filed while still lobbying for local testing and treatment. We can hope to get that treatment more quickly because of the legal action and there is also the prospect of some compensation for any losses we experience while we are denied treatment. I will gladly sign on.

i also think the insurance companies should get involved in some way. think of the billions they will save on not having to purchase those debilitating drugs.

annad wrote: Tysabri has infected some 42 brains and killed 9. This drug is still on the market. Where is the logic???

We all know where the "logic" is. It even has a name: billions.

I wouldn't worry too much though. Not any more. Given the mileage we have covered in only a few months i take it that the train cannot be stopped.
Except if they find another real way to help us, which i strongly doubt.
Vascular surgeons are going forward and even though it s hard to get treated everywhere, it s only a matter of time for CCSVI to be widely accepted.

I for one wont take no for an answer. I have a CCSVI indicative doppler on hand and my only worry is for my problems to be fixable. And i ll go local whatever it takes. Orelse... a lawyer is the least they ll need to avoid the consequenses.

Hi everyone! I am new to this forum but not to MS! I have been following this treatment as well as others but this seems most promising. The one issue that no one really seems to want to address is the monster pharmacueticals currently making billions per year from us. Even if one were very conservative, I am guessing the average prescription bill per MS patient is roughly 24,000 and up per year.
With the possibility of freedom in the form on CCSVI, I truly do not believe that Teva, Beta-Seron, etc will stand idly by and allow their bread and butter (us) to be possibly "cured" or at least much better off.

I hate to be cynical, but frankly, greed is horrid but it is alive and well in the health care industry. I had an "issue" with Teva several years ago. Long boring story, but the bottom line was not one lawyer was willing to take the case as "Goliath has endless funds". I do not believe for one moment that Jon Congelton (was CEO of Teva Canada) will sit back and allow his million dollar salary to be compromised because someone actually cares and offers us a possible alternative.
I am sure many out there will laugh at my theory or even call me crazy. That is fine, I have been called worse!!!

I am optimistic and my mantra is 'I HAVE MS - MS DOES NOT HAVE ME". I am not laying down and awaiting doom - I search, I try alternative therapies in addition to conventional etc.
My bottom line - when someone (drug companies) are threatened financially they will do almost anything to stop that from happening. I see many "roadblocks" being thrown up purely out of greed.

We have to make sure our voices are heard. Write your local MP, do anything positive to get our message out. But keep in mind, we must be united as the money the drug companies stand to lose will be a wall that may be unbreakable.
Thank you all for listening to my rant!!!!

Teecee62

emess2 wrote:I definitely agree that a class action suit will add pressure to see this resolved more quickly. However, is it not the MS Society and the MS Clinics that are our main stumbling blocks? If they would use their resources both to lobby the government for treatment and to find and support radiologists to treat us, we would have local options within weeks.

I am a perfect example for such a lawsuit. I am too disabled to travel overseas for treatment, yet I live just 3 blocks from the False Creek Surgical Care Centre, 7 blocks from Vancouver General Hospital and a 20 minute bus ride from the UBC MS Clinic. Relief from fatigue might be enough to allow me to return to work. An end to the progression will practically guarantee that I can continue to live in my own home.

SOMEONE is responsible for denying me these opportunities. I can't wait while they dither about their studies. Financial compensation is hardly a fair substitute for relief from my symptoms but somebody should pay for my pain, heartache and lost opportunities, not to mention the cost to my friends and family. There is also the increased cost to the medical system that will be necessary to pay for the increased care that I will need.

The mere threat of a lawsuit might be what is necessary to get these groups on board. They certainly seem to care more about money than they do about us. I think we should get it filed while still lobbying for local testing and treatment. We can hope to get that treatment more quickly because of the legal action and there is also the prospect of some compensation for any losses we experience while we are denied treatment. I will gladly sign on.

Here, here! As will I!

Tim Donovan of NB is spearheading a case, for which he already has a lawyer. it will be a CANADA-wide action.

Send me or him a PM if iinterested. His web site is: http://letsgetliberated.myevent.com/

markus77 wrote:i also think the insurance companies should get involved in some way. think of the billions they will save on not having to purchase those debilitating drugs.

ding ding ding we have a winner here. Great idea. My wife says we need an Erin Brokovich also.

teecee62 wrote:Hi everyone! I am new to this forum but not to MS! I have been following this treatment as well as others but this seems most promising. The one issue that no one really seems to want to address is the monster pharmacueticals currently making billions per year from us. Even if one were very conservative, I am guessing the average prescription bill per MS patient is roughly 24,000 and up per year.
With the possibility of freedom in the form on CCSVI, I truly do not believe that Teva, Beta-Seron, etc will stand idly by and allow their bread and butter (us) to be possibly "cured" or at least much better off.

I hate to be cynical, but frankly, greed is horrid but it is alive and well in the health care industry. I had an "issue" with Teva several years ago. Long boring story, but the bottom line was not one lawyer was willing to take the case as "Goliath has endless funds". I do not believe for one moment that Jon Congelton (was CEO of Teva Canada) will sit back and allow his million dollar salary to be compromised because someone actually cares and offers us a possible alternative.
I am sure many out there will laugh at my theory or even call me crazy. That is fine, I have been called worse!!!

I am optimistic and my mantra is 'I HAVE MS - MS DOES NOT HAVE ME". I am not laying down and awaiting doom - I search, I try alternative therapies in addition to conventional etc.
My bottom line - when someone (drug companies) are threatened financially they will do almost anything to stop that from happening. I see many "roadblocks" being thrown up purely out of greed.

We have to make sure our voices are heard. Write your local MP, do anything positive to get our message out. But keep in mind, we must be united as the money the drug companies stand to lose will be a wall that may be unbreakable.
Thank you all for listening to my rant!!!!

Teecee62

welcome teecee62 - well said

Something about the class action. Given that CCSVI is still under study with this name, it would be important to find papers about "venous reflux into the brain" instead, and complain for discrimination not being treated for a proven dangerous condition.

I remember that a pre-CCSVI paper was posted, and it was speaking clearly about "blood reflux". I will try to find that thread.

I think the less the word CCSVI appears in the lawsuit the better, given that is controversial and it adds nothing to the fact that blood reflux is a problem.

Edit: Here is the paper: http://jnm.snmjournals.org/cgi/reprint/18/1/39.pdf