Wednesday, 18 October 2017

#ChariotMS - Time for action

The latest news from our #ChariotMS Project




For some time we have been talking about this trial which builds on a number of recent insights we feel quite strongly about. They are not only our own insights, of course; others have thought and worked hard too, and this becomes no less evident than by reading the list of collaborators, and their teams, colleagues and respective networks. So let's do it - MS Society, National MS Society, companies, beneficiaries, philanthropists - please read, comment and make it happen. Here's my email: k.schmierer@qmul.ac.uk

CoI: Our research has helped oral cladribine (Mavenclad) to a licence in people with relapsing MS. #ChariotMS will test injectable cladribine, we've used on a compassionate basis in people with progressive MS for the past three years.

18 comments:

  1. I sincerely hope you get the support.

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  2. Given your research has helped Merck get licence for this drug and make billions of dollars in profit. Have you thought of perusing this in court to be paid for your work through royalties? Just saying because I passionately believe this trial should be done. Or go to the media make Merck look bad. As pharmacy drug company they will want to keep the good will of their paying customers.

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    1. If our research has helped get a license...that is great because it says our research has had a positive impact. The Government will reward our university if we can show that our actions helped get a drug to people. I think we can indeed make this case. So we can gain benefit, importantly we can get personal satisfaction of helping getting a drug to people, we don't do the job for the money. That we get paid for doing the job we do mean s we are very lucky.

      The UK government want academics to facilitate the pharma greasy wheel. In the US, next week we will hear if Ibudilast works. Ibudilast is a pharma drug, yet the NIH (public money) paid for the trial.

      We discovered the use of cannabis for MS and have not received a penny from this.

      I thank you for your passion and I too have this and think it is terrible that this trial has not happened already. I best stop now otherwise my blood will boil. Maybe if we can show that the trial works then Merck will come to the table and take us to the next step.

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  3. An MS inclusive trial, will this be a first?

    I really hope that this gets the necessary support so that it really can happen

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    1. Me too - shame I can't get my hands on that kind of money or it would be yours....

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  4. Not quite fully inclusive in that we are targeting more advanced pwMS and ignoring pwMS who have little disability.

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    1. Yep, noticed that Gavin 6.25
      Lots of pwMS in the SP or PP bracket don't qualify for dmt but aren't (yet) EDSS 6.5+
      Suppose you have to start somewhere and trial only recruiting 180. Hope you get the funding :)

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  5. What about pwMS with little disability and/or early MS? Is this available for them? Is it recommended?

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    1. Currently we have a compassionate use programme, where no one slips through the cracks, but there could be a problem with equipoise so DrK may have to stop if they want to recruit people to placebo...I know some company will be happy.

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    2. Thanks MouseDoctor. Apologies for my ignorance - who will be able to get Mavenclad? Should early pwMS get it?

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    3. Label is for "highly active" relapsing MS, i.e. (i) 2 or more relapses on other DMT over previous year, or (ii) one relapse with either >8 lesions on T2 weighted MRI, or one Gd-enhancing lesion on MRI.

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    4. Thanks DrK. Really appreciate all your efforts.

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    5. Maybe this could mean Merck could fund the study:-)

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  6. Ok. Let me rephrase the question. Why is Merck not financing this if they are set to make billions, if this trial is shown to be positive in progressive MS community? Do they not Have moral duty to bring this medicine to all sick people. Also given your research helped bring them the approval in Europe and subsequemtly forecast to make them billions. Do they not feel some loyalty to Barts team and donate the trial costs which are peanuts to them?

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    1. Forget about moral duty, this is business. On the other hand, there is evident prospect of success, and that could mean support for extension of patent life and all. Problem is if they do the trial, you can multiply the cost by at least a factor 50... Will Merck donate the money for the trial to charity, and give us free drug, so we can run the trial via public funders...? Darmstadt, you know my number:-)

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    2. We need to reformulate cladribine or use a new cladribine me-too.

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  7. The more I read this post the more impressed I am that at long last we have the very real prospect of a trial for pwAMS. And using a relatively safe and affordable drug! I can see the sense for limiting trial to EDSS 6.5+ if it works here then that's the dogma well and truly smashed. Thanks Dr K for document explaining ChariotMS so clearly. And thanks to Barts for leading the way with prescibing off-label cladribine for those who've fallen through the cracks.

    If Chariot successful, it's going to be hard to justify not using cladribine injections in the future for any pwMS who doesn't qualify for Mavenclad (or alemtuzumab).

    Incredible really that cladribine has been around so long...to think it's been sitting there all the years we've been wasting time with beta-interferons etc.

    Thanks to MD and team for research disproving supposed Movectro cancer risk. And thanks to Merck for taking notice :)


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  8. I can see there is good reason to be excited about Cladribine but the limitations need to be mentioned.

    I have advanced MS, rely on a motorised wheelchair and am gradually losing hand and arm function. No drugs have been prescribed for me other than Gabapentin for pain relief.

    You would think I am a prime candidate for injectable cladribine?

    Not so. My latest lumbar puncture shows normal neurofilament levels so no new lesions. That means, I'm advised, that cladribine is too risky for me: the potential benefit is unknown - in the absence of new lesions - but the risk is known, ie. potentially serious infections resulting from immune suppression.

    Others in my situation might want to speak to their neuro before getting too excited about cladribine.

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