Educational activities

I have a question!

Like hundreds of thousands, maybe millions, tonight I saw the W5 documentary “The Liberation Wars”

It certainly got me thinking about which MS treatments are allowed in Canada, and which are not.

I got to thinking about some of the dollars involved in the treatments.

I shot Teva products into my arm every day for ten years, so I know a a bit about the kind of money that company pulls down. Their Copaxone injections cost my workplace drug plan $18,000 a year, which goes a long way to explain how the makers of the world’s top-selling MS drug did gross sales of $11 billion in 2008.And then there is Biogen Idec,  the makers of Tysabri, the MS treatment that costs 17,000 US a month, I’ve been told. Fine firms both, I am sure, that have  poured millions into research along the way. We likely know a lot more about immune reactions thanks to their studies.

But still,  I wonder about medical consultants or advisors to firms of such unimaginable wealth. Such advisors could do so out of the kindness of their hearts. Or they could be paid handsomely for their association with such corporations. I might have my own thoughts and so might you, but the next time the news media interviews such an individual in relation to the whole debate about which MS treatments Canadians are allowed to receive, they might do  a huge service to the discourse by simply asking: “how much money have you personally received from companies that manufacture and market drugs used to treat MS” — with the camera rolling.

Don’t you think?

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10 Comments

Filed under Post op, Research

10 responses to “Educational activities

  1. Bev Bentley

    Ditto Ditto and Ditto again!! And, Pfizer is a sponsor of the Canadian MSS. All just to interesting. Thank you for the up date. I will continue to look at all the positive news of CCSVI, here and around the world, to keep me looking forward to the future for my son and all who suffer from MS. Knowing the negative parts keep me focused on what I can do, and keeps me educated on what to stay away from, i.e. MSS. Thanks again for posting this.

  2. Ha! Brilliant as usual sir.

  3. Penny White

    I hope I misinterpreted, but did I not hear Dr. Zamboni last night on W5 come out on the SIDE of ‘Be patient, things are moving fast, but more research is needed’. I believe he was subtly advising AGAINST the treks to Poland. Is he trying to sit mainstream? Has he caved to pressure? Am I wrong? I loved the show, loved the point that it’s NOW many of us need and want the procedure, while there’s time, and don’t care to practise more patience….Freedman style.

  4. LaVonne

    Ya think!?? He loses all credibility as far as I am concerned they are his meal ticket and he isn’t about to rock THAT boat!… If we don’t help line his pockets then we are of no concequence to the likes of him. PLEASE DON’T be MY advocate! My friends on the internet have done more for us than ANY of the MSS mouthpieces.

  5. Kelli Caldwell

    My father during his working years was taking Interferon. Very expensive but his work health plan covered it. My mother submitted to the Trillium foundation for it’s coverage when my father turned 65. He was rejected by the foundation because of it’s expense. My mother contacted her member of parliment as well as the drug company to see if they would provide it based on compassionate grounds. No luck, no reduction in price nothing. At 65 there is no drug therapy for people with MS. At 65 the government wants all MS people to go away. If you want the drugs you are on your own.

  6. Nathalie

    I saw an interview Saturday on W5 with Dr Freedman and he was so against the CCSVI it really made me wonder what is up with him will the money he receives dry up? Same with Yves Savoie from the MS Society sitting there in a $3000.00 suit telling us not to get excited over this, I am sitting there thinking what the hell is wrong with these guys obviously they are paid very well by these pharmaceuticals no doubt in my mind also I felt they were jealous of Dr Zamboni’s finding people ARE feeling better now we with MS do not see this as a cure but as a way to stop progression so i find both of them unsupportive and very irritating and you know what I just do not trust them at all!!! I will go to Poland for the minor surgery I am not going to wait for these bozos to agree that this may be good for us MS people I just wish they cared more about us instead of their pocket books!!!

  7. Penny White

    iIn response to Kelli’s post about costs and coverage… for four (?) years Trillium helped me pay for my monthly Avonex (I needed a form 8 from the doctor) but when I turned 65 the GOV’T started to pay it ( there is a modest deductible they take) and hallelujah, virtually no more expense and no more Trillium. You should look into this again. Something is misunderstood. My release from financial duress because of Avonex was the greatest bonefit of becoming a senior!

  8. xtine

    The American Academy of Neurology is having their annual meeting in Toronto this week. Apparently there will be results from the CCSVI study in Buffalo discussed as well as other research going on regarding MS and other conditions. I hope the results from the CCSVI study in Buffalo are positive with regards to the CCSVI hypothesis. It is important that people who are interested in this treatment follow the on-going research with regards to efficacy, in my opinion, as well as safety (which doesn’t seem to be much of a concern if venoplasty is done by qualified persons who know about CCSVI and MS). Waiting to hear what is revealed.

  9. Katrinka

    I am watching this with great interest. I was diagnosed with R/R MS 30 years ago, before MRI and before any kind of drug therapy. The first treatment I was offered was don’t get tired and don’t get hot. Fortunately, my symptoms have remained mild so I have been able to avoid drugs and side effects (like fainting from doing my own injections – I am a little squeamish – ;). I do intend to have the liberation procedure when it becomes available – which I firmly believe it will, despite the resistance from the MS infrastructure. (just not quickly enough…)
    It seems to me the issue here is that this procedure is not neurological, it is vascular, and that requires a HUGE paradigm shift in the aforementioned MS infrastructure. All of a sudden, they have to look at this differently.That is hard to do. The recommendation to ask family doctors to refer us to interventional radiologists is a good one. IMHO, unless the CCSVI scan is negative and the symptoms remain typical of MS then there may be no need to consult a neurologist.

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