QUESTION TIME NOW

Q
Question Time Live Stream was apparently rubbish. 
Sorry but we had no control of this.


The session was filmed and was was pretty good 


The link is below


Videos are online a www.ectrims-congress.eu. Once you have registered to the Online Library you can access all webcasts

CLICK HERE

HALL C 12.30-14.00 Question TIME 13.00-14.00 LOCAL TIME
THANKS 11.30-1.00 UK TIME


TWITTER : #MSQT

About the author

MouseDoctor

19 comments

  • Will this be available to watch after the event? The link for the iPad/iphone link doesn't want to work. Thanks

  • Regarding the exorbitant price of MS drugs….the price is based upon the economic impact of the individual being lost from the workforce if untreated, that is why all MS DMTs have similar price tag. All drugs go through clinical trials and these costs are a part of corporate expenditure. I agree with J. Stackowiak that stem cell therapy is the most promising avenue for dealing with progressive disease.

    • The price is exorbitant as there is no functioning market for MS drugs. Pharma operates an effective cartel where they charge what they think the market will stand. I think a sensible solution would be to extend patent life so pharma may have an incentive to reduce price, then again I'm probably being naive.
      Stem cell therapy may have some promise but we are more than a decade away from this coming to fruition in my opinion.

    • I agree with MD2 stem therapy is a pipedream hype.

      Yes it has masses of promise but the really at present is not that hype. Trials are being pushed through to respond to this desire but the reality of the data far is less compelling.

      I think Julie S made some good honest opinions compared to the fence sitters on the panel (However I also think the fence sitters did a god job sitting on the fence)

    • MD2 has a good point why should patent life be fixed?

      Ifs a trial takes 6 months that is great but if a progressive MS trial takes 4-7 years for phase II and 7 years for phase III there is no incentive to start

    • Granted stem cell therapy seems like a pipe dream and is probably far on the horizon but the reality of drug therapy for repair or neuro-protection is also a pipe dream. It took 20+ years to finally get campath approved in the UK and the U.S. is still in trial. If the data on stem cells is lacking this is not conveyed by the legit stem cell centers.

    • campath is not yet approved in the UK it has to be NiCED. unless Sanofi/Genzymne ask a reasonable piece it will not be approved as it will fail the cost benefit exercise

    • Pharma doesn't want to touch stem cell therapy……where's the $ in such a treatment. This puts it on the shoulders of academia. Any stem cell related companies at ECTRIMS?

    • Re patent life duration, good thought Mouse Doctor 2 and Mouse Doctor. If you, or MS societies, or other groups could find the right way to communicate with the right people, your point about lack of incentive to do trials is the sort of thing that could actually trigger legislative change.

      But,to get that change made, you would need a concrete proposal that didn't undermine current patent law. It is fairly easy to add language for excepting specific cases to statutes. What is hard is 1) writing that language such that it won't be gamed in a way that undermines the function and purpose of the primary statute, and 2) getting the change made by convincing policy makers that they gain more benefit from the change than their cost in implementing it.

      In this case, especially if you teamed up with advocates for research for other disease, it seems like you could convince politicians that this would make them look good. But, what would your proposal be? You can't eliminate the patent clock. How would you change it for these candidates? How would you identify which drugs to make eligible for your exception? Or do you simply extend the years protected for all drugs? Any change would be examined closely by drug companies looking to benefit, including but not limited to your intended targets of assistance.

      Speaking of political targets who might be persuaded to help MS research, apparently Michelle Obama's father had MS.

      http://thehill.com/blogs/blog-briefing-room/news/249109-michelle-obama-opens-up-about-fears-of-ms

    • For drugs based on monoclonal antibody technology, patent expiry probably doesn't matter a whole lot as it would be too technically demanding for generics companies to produce their own so I suspect the big boys will still have the field to themselves regardless.
      As you say, any special case patent life extension for the MS field would probably be gamed by pharma bods who are much more clever than me.

  • very interesting and worthwhile. It does make a difference seeing people talk and not interpreting words on social media sometimes…

    One of the comments close to the end struck me. It was saying that in early RRMS we have effective drugs and effective monitoring programs – not in the UK! No access still to the more active drugs and still no regular MRI scan to see what is happening. The EDSS every year is too much of a blunt instrument and not really fit for purpose any more. Will this go on, or will NICE licence the new active drugs properly and adopt more regular MRI?

  • Like said elsewhere; I found it informative (and again sobering..). Thank you for it, everyone involved.
    I didn't have ms 20 years ago of course (I would be worse of I realize), but advances notwithstanding.. It sure doesn't feel as a chronic, treatable disease quit yet.

  • Listening to Bruce Trapp there are oligo precursors in all chronic lesions and even oligodendrocytes wrapping myelin on nerves, so there is a brake in the white matter which may not be present in the grey which are remyelinating much better. So will stem cells get over the brake the best remyelinating treatment may be anti-inflammation

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