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Thread: Drugs etc

  1. #1
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    Drugs etc

    Hello
    There are lots of discussions about Riluzole, Rch4, Edaravone,stem cells and gene therapy etc. Where is the evidence that some of the treatments work or do not work?
    I know that there is a lot of research into a cure for MND,but there is little evidence of progress.
    Chris
    Last edited by Chrisp; 24th November 2018 at 18:48.

  2. #2
    Forum Member Ellie's Avatar
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    Any licensed medicine must first undergo several clinical tests to establish efficacy and safety, so both Riluzole & Edaravone have been through that process.

    Brainstorm is currently in Phase 3 of NurOwn stem cell treatment in the US.

    Results of clinical trials are available online.

    RCH4 is not a licensed drug.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
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    Hello

    There are good reports on Edaravone, so why is not prescribed by the NHS?
    Chris

  4. #4
    Forum Member Kayleigh's Avatar
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    Hello Chris,
    It looks like from the letter you received from Tim Farron (in your thread titled Edaravone started on 11 Sept) that this drug is not yet licensed for use in this country because it is still being considered by the European Medicines Agency. It may be argued by the Government that the drug needs to go through more clinical trials and tests etc before it could be considered for being licensed for use here. There is also the issue that the Government may not want the cost of the drug to be covered by the NHS if it does not deem it to be 'effective enough'. In America the drug is covered by people's private health insurance. Surely they would not cover the cost of Edaravone if it was dangerous to use or if it had no medical benefit. If I lived in America and I had the chance to take Edaravone then I would take it. It may sound simplistic to say, but if it is good enough for MND patients in America then it is good enough for me! I am not a scientist and am not very good at analysing scientific data but all I know is that 'red tape' is stopping us from having the opportunity to access Edaravone which must have some chance of extending the lives of people with MND, otherwise it would not be licensed for use in countries including the USA. The Government here has the luxury of taking as much time as it deems necessary before making a decision concerning Edaravone - but time is limited for us!
    (Just my thoughts as an ordinary mum and wife who has MND)

    Best wishes
    Kayleigh x

    I had originally put in this post that it would be illegal to import Edaravone for personal use - but since then Ellie has very helpfully pointed out that it is NOT illegal to import an unlicensed drug but does need the support of a GP (as in her 2nd post below) I apologise for my error and apologise if I mislead anyone. Still annoying that it is not available here on the NHS!
    Last edited by Kayleigh; 25th November 2018 at 23:40.
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  5. #5
    Forum Member Ellie's Avatar
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    Edaravone is not currently licensed in the EU.

    The manufacturers of Edaravone have applied to the EMA for marketing authorisation and is under evaluation.

    There is no indication of timescale but, barring an agreement, it remains to be seen what happens when the UK leaves the EU.

    Edaravone is available to buy through a Dutch website an is available to those with ALS in Italy simply because they've a law specifically allowing for use of unlicensed drugs in certain circumstances.

    Even if it gets approval, countries which cover all or part of drug costs through public funds will do a cost v benefit analysis before deciding whether or not to provide it.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #6
    Forum Member Ellie's Avatar
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    Kayleigh,

    It's not illegal to import Edaravone into the UK for personal use with a Doctor's involvement - same goes for many other drugs which are licensed in other jurisdictions.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #7
    Forum Member Kayleigh's Avatar
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    My mistake Ellie - many thanks for pointing this out! I will add a note to my post amending this. It is just so frustrating that a decision about it being licensed here and whether it will be available on the NHS is taking so long!
    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 25th November 2018 at 23:41.
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  8. #8
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    My consultant has pretty much told me not to bother with riluzole, as did the care centre. I guess on a quality of life v side effects v effectiveness?

  9. #9
    Forum Member Kayleigh's Avatar
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    Hello,

    I thought that it was left to each individual who has MND to decide whether they take Riluzole but maybe there are factors (such as certain medical conditions) that do not make Riluzole suitable for everyone with MND.

    I was told about Riluzole by my consultant and there is also some useful information about it on the MNDA website. There are side effects but not everyone who takes Riluzole has the side effects. The decision about whether or not to take Riluzole was left to me and I researched it before I made my decision. If someone decides to start taking Riluzole, they do not have to continue taking it .... they can decide to stop taking it at any time.

    What needs to be taken into account though is that if someone with MND wants to be part of a clinical trial then they must NOT have taken Riluzole - if they have taken Riluzole then they will not to be considered for the trial (that is what a I have read concerning clinical trials but this info would have to be checked out according to which trial it was).

    Best wishes,

    Kayleigh x
    Last edited by Kayleigh; 26th November 2018 at 20:27.
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  10. #10
    Forum Member Kayleigh's Avatar
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    Further to my previous post, this is a link to MNDA factsheet about Riluzole
    https://www.mndassociation.org/wp-co...a-riluzole.pdf
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