Time to Change..Time to Repurpose

In the wake of the Fall Out of the apparent failure of the INFORMS trial, it is clear that to push forward the chances of getting treatments to progressive MSers most quickly, we need to REPURPOSE and repurpose fast. Repurposing has started and maybe one or more drugs will succeed in trials but then what.

It is imperative that we get our politicians to create the environment such that these agents can be fast-tracked through the system in an economically-sound way and not held at a impasse of no further development following a successful clinical trial.

Gilenya had a 4-5 year patent life and had this worked in the INFORMS trial, within this time both RRMS and PP/SPMS would be lost to pharma, as a cheap alternative to their expensive stuff would arrive.

Academic Neuros can do clinical trials but they have yet to develop any MS drugs…Pharma do this. Without a change in the system this is unlikely to change….

However it is Time to Change, but it needs You to Mobilise to lobby for that change.We should encourage pharma to repurpose the academic way.

CoI. We could all benefit if this is done

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  • Agreed, mobilisation to change things is essential, but how? I know the MS charities do what they can but does this mean that it is only one strand of their activities… maybe a completely separate organisation is required… or for the cause to be adopted by some form of campaigning organisation? I don't have any answers, unfortunately. But thanks for raising this, and staying 'on the case' 🙂

  • 'and now remains, that we find out the cause of this effect, or rather say, the cause of this defect, for this effect defective comes by cause' Hamlet act 2, Scene 2.
    Autoimmunity has been intensively researched with increasingly sophisticated methods.No specific autoimmune target has been found. Now suppression of inflammation is failing to eliminate the 'effect'. New ideas please!

  • Seems to me it’s time to follow up a bit more on a drug that many thousands of MSers are already using even though there have been no clinical trials of any size or duration run with MS – and there won’t be any trials because there’s no money in it for Big Pharma. Yes – I’m referring to that old and out-of-patent drug lurking in the back of the cupboard – low dose naltrexone. However, please don’t switch off – just yet……… it could be the most affordable re-purposing around.

    A critical problem with LDN is that almost all of the available data is put forward by patients, and this has no credibility in the formal research and clinical trials world. It is anecdotal, and inconsistently collected and presented, thus virtually impossible to analyse. However, there are also growing numbers of neurologists and other clinicians who either prescribe LDN for their patients, or support/endorse them taking it. To a large extent it is almost irrelevant if they take this stance simply because the side effects of LDN are almost non-existent and they figure that even if there is only a placebo effect there is no harm done. But if data was collected in a structured format from MSers who take LDN, and input from their neurologists was included, this could start to build up some credible data, especially as many MSers who take LDN are not taking other DMTs for a range of reasons (side effects, not eligible, can’t afford the drugs, drugs not approved for SPMS or PPMS in their country, etc etc).

    Apart from the holy grail of finding drugs which will cure MS and reverse all of that demyelination (preferably without all of the nasty side effects that come as an unwanted “bonus” with every existing or "in the pipeline" DMT), what might be called the “second prize” is to find a drug which will stop progression. And many MSers taking LDN (including those not on DMTs) are reporting that their MS is not progressing – their MRIs show this to be the case, and their disability is either not accumulating, or the rate of accumulation has slowed significantly. Sceptical neurologists say “Oh, it just the usual unpredictable course of MS – you just haven’t had a relapse for a while”, but in all honesty – who cares – if your MS is not progressing. And it’s even more important if you are SPMS or PPMS, given that these are a huge wasteland where there are no proven drugs.

    So – in this world where everything is just a mouse click away, the costs of setting up and running such a database would be zillions less than formal clinical trials. A cooperative effort from MS organisations around the world could see a huge register of patients submitting data, and patients’ neurologists could also put their clinical two bob’s worth in as well to validate or disagree with their own patients' claims. The MRIs are already being done as part of the normal management and monitoring of MS, and the patients are out there already taking the medication – you just need to round 'em all up and get them all recording data consistently and in an analysable format in one repository.

    CoI – many people could benefit if this data was collected and showed that LDN was useful and beneficial as an MS drug.

    Safety warning – some people might get upset – Big Pharma and clinicians with closed minds.

    Now it’s time to get off my soapbox and go and feed the cat.

    • Postscript to the above – didn't need to feed the cat – it had already feasted on pigeons as I forgot to put a Safety Warning up for the pigeons……………..

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