Friday, 14 June 2013

Rebranding MS as a Dementia: part 2

"What do you think of this of short animation? It tries to explain the impact of MS on the brain; in the other words the early phases of MS Dementia."



Disclaimer: This animation is part of a series of animations on a MSer website, called "MS and Our Story"; I note the site is sponsored by Novartis. Novartis are a Pharma Company that produce and market a drug called Gilenya (Fingolimod) that is licensed to treat relapsing forms of MS.

"Should we rebrand MS as dementia? Have your say?"

40 comments:

  1. I like it but it is hard to understand with the thick British accent :)

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  2. Slightly patronizing.

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  3. Cute! The message of diagnose and treat early is clear. Pity we can't access Gilenya early.

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  4. This is when the harsh realities of multiple sclerosis hit home: It’s a playground for corrupt pharmaceutical billionaires engaging in the most despicable propaganda imaginable. It is abhorrently shameful that Novartis has commissioned a series of cute animations to inure vulnerable MSers into feeling a terrifying sense of insecurity for not being on one of its toxic products. They literally animate a scenario which demonstrates what will happen if you don’t get on one of its patented drugs: drugs that in no conclusive way prove an ability to effectively treat MS. This vignette is appalling and disgraceful. It exists to scare people, to make them feel fear but it’s done with adorable anthropomorphic characterisations, thus masquerades its true intentions. I would love for Novartis to commission another clip showing the character of Candy actually suffering from fatal consequences as a result of being on emerging DMTs, as has happened to some MSers that were on Gilenya. But they won’t do that, will they?

    MSers on this blog are essentially sheep brainwashed into thinking that there are medicines that will abolish their incurable disease. The propaganda – well funded and all encompassing – has done its trick. I was pleased to read MouseDoctor II: Revenge of the Nerds remind readers that Campath-1H is not a panacea for MS and only tends to work in those with immediate clinical signs of MS. I don’t believe that Campath-1H actually works at all because the data showing treated patients slipping into SPMS speaks for itself, but even if it was efficacious then the evidence suggests that everyone reading this blog will not benefit from the drug because they are already too late. It almost seems that by pressuring current MSers to lobby on behalf of the huge pharmaceutical companies will create a backhanded success story in which such drugs will get licensed but those that campaigned will in no way benefit because their disease will already be beyond salvation. This is a very shrewd tactical manoeuvre by Big Pharma and it’s heartening to witness the academic and neurological professions fully complicit in such activities. All this back scratching will eventually draw blood but one wonders whose it’ll be.

    MS is a terrible disease and a very cruel one, but one cannot help feel that the pharmaceutical trade is exploiting MSers by getting them to do its dirty work for free. They are scaring them into writing to MPs and health commissioning authorities, cajoling them into demanding that their unproven expensive products get a green light and harvest maximum profits for shareholders.

    The above cartoon was paid for by Novartis, the same company that are suing the NHS for using cheaper and more efficacious alternatives than its patented crap. Novartis does not care about the welfare of MSers, it just wants money and doesn’t care how many people it has to screw over to get it. The way in which Novartis has commissioned pointless subliminal advertising for its products through funded short films via Shift.ms and other blogs leaves a bad taste.

    Novartis and it friends should go away. MSers will get by fine without them.

    Love to you all, but not for Big Pharma.

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    1. "I don’t believe that Campath-1H actually works at all because the data showing treated patients slipping into SPMS speaks for itself ..."

      What data are showing that?

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    2. Damn, Dr Dre. That was a heck of a rant, and one that actually got me thinking. After reading your comment I re-watched the cartoon and saw it in a very different light. I'm not sure if that is down to your way with words or the truth of things.

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    3. Quite the opposite of SPMS. I recall reading on this blog that a substantial proportion of MSers actually improve and remain stable for many years. Are there any Campathers out there who can counteract Dr Dre's comments?

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    4. I suspect Dr Dre is dementing.

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    6. There is an arrogant despicableness about Dr. Dre where the valid points he/ she makes gets overshadowed by pompous put-downs.

      That is a shame because Dre's arguments about Novartis is very relevant and important. Novartis has money for commission adverts but they won't lower the price of dugs and bully the NHS every chance it gets.

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    7. If Dr Dre actually had anything new to say, rather than the same old stale rap then I might agree with you. As it is he merely conjures up Dad's Army's Private Fraser " We're all doomed, doomed I tell you (repeat ad nauseam).
      If you consider that a pompous put down, so what.

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    8. It’s funny that my musings are dismissed by bovine followers of this blog as a repetitive ‘stale rap’, yet the tiresome loop of ‘early aggressive treatment’ is revered as gospel even though those in charge (our government) rightfully label it as unconvincing. No wonder the MS community comprises of lemmings drifting from either dangerous freefalls of CCSVI or life-threatening DMTs like alemtuzumab and fingolimod. Merely willing a treatment to work will not make it so. Anyhow, I really can’t care about offended egos on this blog when I consider how reluctant our NHS is at embracing new DMTs, citing insufficient data and cost evidence as its prime reason for not licensing the toxic drugs on offer.

      Campath-1H is ruse and any professional neurologist will tell you of RRMS patients that despite being on the drug still became progressive. And MDK2 may accuse me of scaremongering defeatism, but I will hit back by reminding him of how the things he swore as being scientifically kosher (CUPID trials) turned out to be expensive bluffs. Why should we mindlessly agree with everything he says when he, too, often gets it wrong?

      In all honesty, MSers ought to put their money where their mouth is and buy Campath-1H from private establishments because I don’t see why my taxes should fill a corrupt institute like Novartis’ coffers, although I admit that they are not manufacturers of alemtuzumab and peddle some other corrosive pill called Gilenya.

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    9. He swore as being scientifically kosher (CUPID trials) turned out to be expensive bluffs......Well not necessarily the case....We never designed the study and would not have done it that way.

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  5. "Damn, Dr Dre. That was a heck of a rant"
    Indeed, merely a variation of the same old same old. "All drugs are bad and even if they aren't, it's too late for you, so you might as well give up"
    Now let's move on, nothing to see here.

    Anonymous 1.37
    Quite correct. A substantial proportion of Msers treated with Campath have shown sustained improvement over some time. There have been comments from Msers posted on this blog that confirm this. The data counteracts Dr Dre's erroneous assertions!

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    1. I understood that Dr Coles in Cambridge was going to present some long term follow up of Campath patients at some stage - do we know if anything has surfaced?.

      Worry is that it removes the relapsing component and leaves nearly the same secondary progressive disease (which will look essentially like PPMS). Other problem may be that those treated some time ago likely had very aggressive RRMS and established disability that could leave them with secondary progressive anyway.

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    2. Here's the most up to date follow up data I can find.
      http://www.ncbi.nlm.nih.gov/pubmed/22442431

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    3. My worry is that even this report states alemtuzumab's positive effects "in early, active relapsing-remitting multiple sclerosis (RRMS)."

      This means that the drug is useless if not given immediately when MS begins. We won't benefit. This is such a losing battle. How soon is now?

      We're destined for SPMS!

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    4. It looks like you have a 30% chance of a thyroid condition. In the Phase II trial, 1 patient died from immune thrombocytopenia (ITP). I guess they adjusted dosing for the extension trial.

      I guess if your goal is just to supress your immune system, this could be a choice but what are the real longterm effects? I think it is too early to say.

      I would definetely not take this if I was progressing as there are safter options out there in Phase III trials.

      http://neurology.jwatch.org/cgi/content/full/2012/410/3

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    5. Yes, I agree. The side effects look too risky for my liking. I think it is this risk profile that will scupper alemtuzumab's chances of getting on to NHS books. It is a very powerful drug and not always in good ways, though I think personal choice should play a role. If people want it immediately then surely there are approved clinics in America they can fly to rather than waiting for the NHS to get it together. The NHS is too complacent.

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    6. What would you rather, Graves disease that is easily treatable and your MS might go into permanent remission, or do nothing and wait for something that might be totally safe but in the meantime your Ms grubles on and the nerves you are losing cannot be replaced?
      Certainly safer than Tysabri.

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    7. Again, if you think supressing your immune system is a solution to stop the autoimmune attack in MS I think Campath, Tsybari or drugs like it are the way to go.

      But this would be equivalent to saying that stuffing cotton into your nostrills is a cure for a runny nose. In the short term your nose is not going to run but does this really fix the problem?

      If you are interested in getting to the root of the issue you have to re-establish self tolerance. This is not a new idea and is in Phase III trials as we speak:

      http://pegasus.fmrp.usp.br/projeto/artigos/artigo113.pdf

      I would suggest getting feedback from people who decided on this approach to halting their disease:

      https://www.facebook.com/groups/burthsct/?bookmark_t=group

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  6. ".....drugs that in no conclusive way prove an ability to effectively treat MS." Not true. The end point of reducing number of flares and lesions on MRI is proven in the studies. It is debatable as to the effect on neurodegeneration. RRMS and SPMS are two different animals so to speak.

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    1. You have almost shot yourself in the foot there by saying these drugs only reduce relapses and lessen lesions, but probably have no effect on neurodegeneration. Why then tinker with a drug so powerful and dangerous when there isn't a convincing enough argument that it will prevent me becoming disabled?

      Neurodegeneration seems to be something beyond medication.

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    2. Neurodegeneration is not the endpoint. Reduction of lesions is the goal. That seems to be the disconnect. Unfortunately, the most effective DMDs have more safety issues.

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    3. I would tinker with a powerful and dangerous drug if it meant I never had another relapse. Anonymous 6:19, have you ever had a relapse? I've only had two, but I'm always a little bit dizzy, buzzing in my ears, and eyes that tire out quickly--all the result of one relapse that I mostly recovered from. It sucks, and I would take a few risks not to find out what my next relapse has in store for me.

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  7. The experience of one Campath recipient.

    Quite aggressive MS - disabling relapses. On Rebif for 9 months, but still relapsing. Campath infusions at end of 2006 and 2007. Recovery of some deficits. No relapses since first infusion. MRI (last at end of 2012) show no activity. EDSS same as 5 years ago. Working full time. Got Graves Disease so on thyroxin for rest of life - one small tablet a day.

    Know several others with same outcome. Hope it becomes available so patients get a choice.

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    1. Thanks for this. Glad Campath seems to have been very successful for you and counter to the doom-laden defeatism of Dr Dre. My Dad had Graves for most of his life. No biggie!
      I too hope that Campath will be available to as many that could benefit from it.

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  8. In Dre's defence you always need to be sceptical about any initiative of Big Pharma, in this case Novartis, pushing a message that will ultimately support sales of their drug. Is this any different from Coca Cola pushing happiness to sell fizzy flavoured sugar water? I like Coca Cola. What if Novartis is correct? Do we simply dismiss this as a cynical ploy to sell product or do we ask the deeper question what if Novartis is right? What if early diagnosis and early effective treatment is the correct strategy? Should we not adopt a message or strategy simply because the message is coming from Pharma? At least Pharma are being transparent.

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    1. Strategy to develop effective therapies should be derived from disease pathology. I would think this is best suited to academia. Let academia determine what pathways or proteins to target and leave it up to pharma to do what they do best - structure and synthesize compounds and perform efficacy studies. Unfortunately this requires collaboration. $$$ changes the landscape.

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    2. Prof G, I don't think that Dre needs any defending. He is arrogant and obnoxious to the max, and constantly looks for fights. He's a bully that is set on undermining everyone because he/ she thinks they're smarter than the rest of us. Dre may be able to spin out elegantly constructed sentences, but his/ her arguments are paper thin.

      Big Pharma may be a necessary evil but I'm not sure I like the comparison to Coca-Cola. Cola won't kill you but from what I've read about these new DMTs they may end up doing some gravely atrocious damage to an MSer. We need to find safer and more effective drugs that work across the spectrum of MS. We are certainly nowhere near that yet. Novartis should be more responsible than to reduce the selling of their dangerous compounds to cutesy cartoon clips because that is the kind of marketing tactics Camel cigarettes deployed when trying to convince younger generations that smoking was a less menacing concept in the 1990s.

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    3. Yes, MS is a bad disease but these new DMTs seem pretty bad, too.

      I wish there was a better option.

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  9. I work in Marketing. This is piece is so tame it is hardly connected to their product at all. If anything they could be supporting DMTs in general. Well done Novartis, keep it up and ignore the naysayers; who would cut their noses off to spite their faces.

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  10. "At least Pharma are being transparent."

    Using cute animation to pass the unproven motto "early aggressive" is the definition of brainwashing: Sentiment as trojan horse to logic.

    Dr Dre is surgically accurate is infallibly coherent in all his statements. It's his standpoint outside the Matrix and the deeply understood existential futility that makes his views elusive or at least controversial, though naturally clear.

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    1. What you said VV is far from clear. It's like you swallowed a dictionary and regurgitated a thesaurus.

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    2. Ditto Boy-Wonder. In Britain we would say "bollocks"; not the dog's bollocks, but BOLLOCKS!

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    3. I get it. You prefer binary dilemmas like "blue pill or red pill"

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    4. Boy-Wonder You musn't be too hard on VV, he's a bit sore that his ground-breaking pet theory on the cause of MS has crashed and burned.

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    5. It's perfectly clear now that what prevents productive MS research is the prisonization of both physicians and patients in obsolete MS models.

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  11. Diagnosed in 1990 so never "qualified" for any of the DMT's. I know MS varies greatly from person to person but I know many people with MS and I'm doing much better than those I know on the drugs! Treatment for CCSVI was a much more natural approach--and no side effects!

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