Monday, 10 December 2012

Doughnuts or Bagels

"The following is my presentation from a meeting last Friday. I gave this presentation to a group of colleagues from the UK; MSologists from the whole of the UK. We all agreed that the current guidelines for prescribing DMTs in the UK need to be modified to allow us more flexibility and to close the hole in the doughnut! I think the consensus was  that we should aim for the disease-activity free state, but at the moment that is not possible as the guidelines prevent escalation of treatment in all MSers failing 1st-line DMTs. The current prescribing guidelines only allow escalation if you fail DMTs with highly-active disease."

"The other issue I raised is that the prognostic tools we have at the moment are better than we realise. In addition, activity on 1st-line DMTs means something completely different to activity on no treatment at all. Having disease activity on 1st-line treatments is a poor prognostic sign and indicates that you are going to do badly in the future. This is unlike the natural history studies in which relapses, outside the first 2 years, are generally not predictive of future disability. We all agreed that the issues raised in the presentation need to be debated nationally. Hopefully we can arrange a meeting in the New Year to get all UK MSologists together to discuss this issue and to form a lobby to change things for MSers in the UK. At the moment we are letting you down."



11 comments:

  1. The patients with disease activity on IFNB do worse then those with disease activity on placebo.
    It seems to indicate that IFNB is responsible and this group have been better off without if they had never taken it.

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    1. I thought what he was saying was that disease that breaks through despite your DMT is especially aggressive. Your course may look like that of someone with a moderate placebo-mediated disease, but in fact the IFNB is masking the fact that you are one of the more aggressive cases.

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    2. Is that so? I understood the graph to show that people with breakthrough disease on DMT reached a higher EDSS then those on placebo

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    3. All people on placebo transitioned onto active treatment just shy of 2 years. All it is saying that disease-activity on a DMT is not the same as disease activity on placebo. If you have disease activity on IFNbeta you are a non-responder and whatever is causing MS is resistant to the effects of IFNbeta.

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  2. I'm glad most UK practitioners have roughly the same outlook on this, how do we go about lobbying the relevant people to make changes (I'm sure there is a cost implication...)? also, NICE are currently examining 3 drugs including BG-12, when do they open this up for individuals to file their views? Thanks Prof G...

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    1. We need to wait for the EMA and then NICE to rule on these treatments. Hopefully, if they get a license we will close the hole in the doughnut.

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    2. On the EMA's website they say that it takes upto 210 days after submission for them to make a decision re a drug. BG12 was submitted at the beginning of May, therefore, it's decision should be just about now. Alemtuzumab's was submitted in June, so it should be sometime in January. Any news yet?

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    3. I assume the Pharma companies involved have been in close contact with them. But as of yet, no news!

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  3. Gluten free ? no thank you, even if, too sticky !
    This image has given me a nightmare,
    I see cerebral blood vessels strangulated by doughnuts, Dawsons' fingers poking through those holes.
    Enough to give me a headache on waking.
    Indeed, have to agree, certainly a big pharma alternative needs to be found.
    Not only to stop the strangle hold on funding, but the stranglehold of the hopes of DMDs benefits on people labelled with 'ms'.
    Beyond the boundaries of the doughnut what if e.g. Vascular Malformations causing venous stenosis found in those who suffer can is relieved to achieve improved venous return thus preventing further build up of deposits around the cerebral veins, even possibly clearing some plaques long term, if this relieved symptoms or halted progression what would be considered a moderate positive placebo benefit, 30% success ?
    NICE recommended 'Trails' using Percutaneous Venoplasty for this problem earlier this year. Yes please lets try some of those.

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    1. Sorry to disappoint you the data in venous malformations is not holding-up. The majority of positive studies come from centres with a conflicts of interest and therefore can't be taken seriously.

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