A treatment for multiple sclerosis that upsets Big Pharma

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby concerned » Mon Jul 19, 2010 5:33 pm

Something certainly needs to be done about the people who's stated goals is to start petty fights with those they disagree with, regardless of what is being discussed.

I know I could just ignore the trolls but it hard when they question my 'concern' for my mother. That's low and I find it highly insulting.
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Postby CCSVIhusband » Mon Jul 19, 2010 5:36 pm

Dude, your mom is suffering while she could benefit from CCSVI treatment ... and instead of focusing your energies on finding treatment for her, you come on here and question everything related to CCSVI.

I've seen CCSVI treatment results with my eyes. They're as real as the day is long ... I wouldn't have believed they'd be this dramatic.

But go ahead and continue to be concerned ...

Nice PM to me by the way ... talk about name calling ... and being mean. At least I haven't stooped to that level.

Oh well ... I'll take the high road and you'll take the low road ...

I am just sick of some people on this board continuing to attack people and offer nothing up to the discussion ... so I'm standing up to it ... making my one stand in this thread, while still offering valuable responses in other threads.

I hope Cheer's not talking about me, because this is the only thread I've EVER "re-attacked" in ... but I just had enough this past week so I'll make a stand so maybe this same crew will stop ruining a few threads every few days.

I can point to examples, and people who these people have attacked in many many threads (if you want).
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Postby cheerleader » Mon Jul 19, 2010 5:42 pm

jimmylegs wrote:if the tone of these posts continue with repetitive pettiness in contravention of Arron's stated rules of the board, posted above for the benefit of readers on this thread, then pending moderator conference, this topic may be locked and/or edited and/or deleted.


Hey Jimmy-it's not just this thread. Most threads devolve the same way. It's more about particular posters who keep going back and forth. Whatever you can do to help, JL, it would be appreciated.
thanks,
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby concerned » Mon Jul 19, 2010 6:09 pm

not going to bite. and this is what you do all the time, deleting posts won't make anyone forget that.

P.S. --- i thought it was good etiquette to respond to private messages privately, I was trying to take the shit talking off the forums and do it privately, but I take the low road????

P.P.S --- where have I gone on threads and just attacked people for no reason? I've questioned things they've said, but I don't think questioning something someone published on the internet is a personal attack.
Last edited by concerned on Tue Jul 20, 2010 10:31 am, edited 1 time in total.
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Postby jimmylegs » Mon Jul 19, 2010 6:24 pm

hi cheer

yes unfortunately that is true. i only occasionally receive complaints and being bound by arron's rules, that means i can do things about the occasional post, but not much about repeat offenders.

i have responded to complaints in the past but as i said they are infrequent and this 'discussion' i just happened to click on randomly.

established members need to let moderators know when the rules of the board are being broken. IMHO the quality of discourse at MS is woefully reduced by the trading of insults rather than thoughtful insight. arron agrees, i am certain.

arron requires 5 separate complaints private messaged to mods by different, established TIMS members, about a particular member or members, in order to take additional steps.

readers can get more detail in the rules sticky (see link above) under general discussion (including the definition of 'established').

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Postby jimmylegs » Mon Jul 19, 2010 9:25 pm

really, people?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
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Postby BooBear » Tue Jul 20, 2010 5:24 am

mrhodes40 wrote:http://bostonreview.net/BR35.3/angell.php

just a bit of food for thought.


Great link!

I love the reference to the greater share of the marketing dollars going to doctor "education". Of course this makes sense from a business perspective; unlike over-the-counter pain relievers, specialty pharma cannot sell directly to consumers. They require the doctor to prescribe the medication. The more they can educate their "front line sales force", the higher the sales become.

Interesting, then, when our disease progresses in spite of these drugs that the "sales force" responds by trying another drug. It is a shame, really, that more neuros aren't looking at their own patient population and wondering why a different or stronger interferon isn't working overall. You would think that the neuros could come to this conclusion faster than any of us as individuals simply by looking at the aggregate of their patient population. Makes you think.
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Postby Lyon » Tue Jul 20, 2010 1:59 pm

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Postby L » Tue Jul 20, 2010 4:22 pm

Lyon wrote:
ikulo wrote:So it's not so far fetched that these MS companies would do the same to protect their interest from a treatment that could potentially have a devastating impact on their share price. In fact, it's probable. If you were a shareholder, would you want them to spend money to fight this now, or when it has too much momentum to be stopped? If it were my money, I'd vote for the former.

Remember - Noah built the ark before the flood, not after. :)

#1. I'm not convinced that the people who run pharmas would refrain from doing illegal or immoral things if they thought their income was obviously threatened. Not to be intentionally offensive to people who already are convinced in the efficacy of "liberation" but scientifically NOTHING has been proven in regards to the CCSVI theory regarding either safety or efficacy and that and not anecdotal "evidence" is what pharmas will use to gauge the situation.

While I believe that pharmas take the prospect of losing income VERY seriously, a good number of neuros probably still haven't heard of CCSVI. Other neuros familiar with the hubbub surrounding CCSVI remain unfamiliar with the actual principals of CCSVI. From the looks of things the majority of neuros who do have some familiarity with the theory of CCSVI scoff at it. As someone mentioned earlier, the neuros are the eyes and ears of the pharmas which produce the crabs and from the input they must be getting, it seems to defy logic that they would consider CCSVI a threat worthy of money or effort at this point.

#2. As someone pointed out earlier, even Zamboni's wife is still on one of the crabs and Zamboni publicly states that "liberated" people should stay on the crabs to be safe until more is definite. It doesn't seem likely but even if the pharmas were aware of CCSVI in it's current unproven state, people with MS are being told from all corners to stay on medications until more is certain. When would more be certain at the very earliest? Many years down the road even if "liberation" universally creates a situation in which MS is stopped in it's tracks and it doesn't seem obvious that "liberation" is universally stopping MS in it's tracks.

In worst case the pharmas couldn't justify considering "liberation" an immediate threat now or in the near future and it "seems" that at this point it would be in their best interest by far to stand aside to see if CCSVI fizzles out and thereby eliminate the chance of getting caught trying to quash a theory that so many people are currently so enamored with.



For fear of repeating myself, I'd bet that they are taking it pretty seriously. A large number of news stories (I'd say the majority of stories that touch on MS in the daily press) concern CCSVI. There is an awareness of CCSVI among patients unlike any awareness of 'alternative' treatments that have come before it (bee stings, diet, antibiotic treatment.) The anecdotal evidence is, no one can deny, astonishing, I've been searching MS news stories for almost ten years and this is ground breaking. They would be taking it less seriously if papers hadn't been published. Three so far, yes? Zamboni, Simka and the negative paper from Bochum. And the premise of CCSVI must be at the back of their minds. True, Zamboni recommends an uninterrupted drugs regime for mature MS sufferers but, in the future, when a clinically isolated episode of MS prompts CCSVI investigation and treatment, the need to prescribe conventional drugs may never even need be discussed. This is our hope anyway and it seems to me that thisd is the way that things will develop.

I'd imagine that they were taking it seriously enough to lobby for the MS society to only fund investigative trials, not treatment trials. That is only libellous conjecture but if I had a hat I'd bet it on Biogen and Teva as having held at least one meeting involving directors about this very subject. Then I'd have two hats. I don't even like hats.
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Postby Lyon » Tue Jul 20, 2010 6:16 pm

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Postby L » Tue Jul 20, 2010 6:26 pm

Lyon wrote:...CCSVI is the most patient popular thing in the history of MS


I'd say 'the most patient popular thing in the history of medicine,' not just MS.
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Postby Lyon » Tue Jul 20, 2010 8:38 pm

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Postby BooBear » Fri Jul 23, 2010 11:49 am

To be fair, I wanted to include Teva's info from their latest annual report, form 20-F, from this past February. I think you will find the bolded info very interesting.

Sales of our innovative products, especially Copaxone®, could be adversely affected by competition.

Our innovative products face or may face intense competition from competitors’ products, which may adversely affect our sales and profitability. Copaxone® is our leading innovative product, from which we derive approximately 18% of our net sales and which contributes disproportionately to our profits. To date, we and our marketing partners have been successful in our efforts to establish Copaxone® as the leading therapy for multiple sclerosis and have increased our global market share among the currently available major therapies for multiple sclerosis. However, Copaxone® faces intense competition from existing products, such as Avonex®, Betaseron®, Rebif®, Extavia® and Tysabri®. We may not be able to introduce price increases at the same rate as in recent years or to offset any decrease in the rate of growth of sales. We may also face competition from additional products in development, including orally administered formulations of Gilenia®, which has recently been granted priority review status by the FDA, cladribine which is the subject of a submitted NDA and fingolimod, which have completed their Phase III trials. In addition, if our patents on Copaxone® are successfully challenged, we may also face generic competition prior to 2014, when the U.S. orange book patents covering Copaxone® would otherwise expire. In July 2008, Sandoz Inc., the U.S. generic drug division of Novartis AG, in conjunction with Momenta Pharmaceuticals, Inc., filed an Abbreviated New Drug Application (“ANDA”) with the FDA for a generic version of Copaxone® seeking approval prior to the expiration of our patents. In August 2008, we filed a complaint against Sandoz/Momenta, which triggered a stay of any FDA approval of the ANDA until the earlier of January 2011 or a district court decision (if any) in favor of the ANDA filer. On October 16, 2009, Mylan Laboratories also filed an ANDA for a generic version of Copaxone®. Any substantial decrease in the profits derived from our innovative products would have an adverse effect on our results of operations.


Remember- Copaxone represents 18% of their sales, but much more than that in their profits.

Sales:

Copaxone® reinforced its position, both in the U.S. and globally, as the leading multiple sclerosis drug, with global sales growing by 25% over 2008, reaching total global in-market sales of $2,826 million


That's a whole lot of money, folks. In fact, it is $2.8B for this single product.
Continued growth in sales of Copaxone®, which increased in-market sales by $534 million in 2009. We benefited from record in-market sales of Copaxone® in the U.S. due to price increases and, to a lesser extent, volume growth


For those keeping track with a calculator handy, that is one heck of an increase in sales- though most of it came from price increases, to be fair.

The companies overall profit margin was 53% of net sales. In other words, 53 cents out of every dollar in sales went to the pocketbooks. Remember, Teva does much more than Copaxone; however, Copaxone contributes heavily to the profit margin (as they state above).

So with that in mind, it is hard to not associate Copaxone with the following statement:

In addition, our increasing focus on innovative and specialty pharmaceuticals requires much greater use of a direct sales force than does our core generic business. Our ability to realize significant revenues from direct marketing and sales activities depends on our ability to attract and retain qualified sales personnel. Competition for qualified sales personnel is intense. We may also need to enter into co-promotion, contract sales force or other such arrangements with third parties, for example, where our own direct sales force is not large enough or sufficiently well-aligned to achieve maximum penetration in the market.


As mentioned in the Biogen post I did earlier, Copaxone is not an OTC drug. So what "third parties" and "co-promotion" could Teva be referring to?

I will stress that anyone can look up these statements. These are direct quotes from the companies themselves. Back in February, CCSVI did not have the momentum that it does now in our community. I can't wait to see their updated 20-F next year. :)

[/b]
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Just found this interesting site.

Postby MsJae » Sun Aug 08, 2010 7:32 pm

I was just doing some research on MS and candida and I found this gem of a site. If for any reason people have doubts as to who stands to lose the most when CCSVI is proven to work (my opinion, thanks), this should cement that fact. Take with a grain of salt, though.

http://www.hendess.net/ms_e.htm

BTW, this is my first post.

I was on Avonex for 8 1/2 years and then went for 3 sessions of Novantrone, and have been on Copaxone for 1 1/2 years.

The long term risks of Avonex, well they don't know. I guess I will eventually find out. The long terms risks of Novantrone, death from heart failure, o.k., I signed up for that, it did not work. The long term risks from Copaxone, see long term risks of Avonex.

I take responsibility for what I take and why, so I am in no way a "victim".
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Postby BooBear » Mon Aug 09, 2010 5:36 am

Welcome, MsJae!

I agree with you. At the end of the day, we will know the long-term effect of these biopharmaceuticals first hand. What I do know, in my case anyway, is that the short-term effects of these drugs did nothing to alleviate progression of my disease.

What I find amusing is the viewpoint that pharma companies aren't worried about CCSVI. That's like saying the oil companies wouldn't be worried if someone invented a gasoline substitute that worked better, was available in plenty supply and was a LOT less expensive. They would be worried all right. :)
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