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Medical Marijuana for the treatment of Epilepsy

I first heard of this about 18 months ago and harbouring the usual prejudices I dismissed it as nonsense. But the discussions on social media, particularly in the USA, kept catching my eye. Parents of children with severe epilepsies were actively campaigning for the legalisation of medical marijuana in states across America. Was this right?  What possible benefit could medical marijuana be for our children? And legalising medical marijuana, where would that take us? These initiatives struck me as the behaviours of desperate parents. I knew very little about 'cannabis' and I had an uncomfortable feeling about parents being able to access medical marijuana as a treatment for severe and complex epilepsy in their children, without endorsement by the medical profession. 

Over the summer months I mulled it over and at one point mentioned it to a girlfriend who gave me that predictable ' knee jerk' reaction rejecting the idea as ridiculous, just as I had done. So whilst I was still trying to formulate an opinion about all of this, matters in the USA were progressing and in October of last year Governor Christie surprisingly made medical marijuana legally available for children with epilepsy on a named basis only, requiring two prescribing physicians. Families hailed it as a victory but in reality it was not. The strain of medical marijuana required which is free of all psycho-active components is still not available in New Jersey and doctors continue to be reluctant to prescribe. 

In the meantime, there is the story of Charlotte Figi which has since gone 'viral' across the USA.  The then five year old Charlotte, who suffers from a devastating form of epilepsy called Dravet Syndrome (the same as Muir), lives with her family in Colorado and in desperation her very normal parents managed to source medical marijuana (high in CBD and low in THC, the psycho- active component) which they gave to Charlotte in the form of an oil. The results were miraculous. Charlotte's seizures stopped and a little girl emerged who had barely ever spoken to her parents until now. This story inevitably further fuelled the desire of families for the legalisation of medical marijuana across the USA and the issue was gaining increasing momentum. Discussions on social media had reached Europe but what I read there was frightening. As well as petitioning for the legalisation of medical marijuana, hopeful but desperate families were sourcing medical marijuana on their own. 

I was not and I am still not eager to try medical marijuana for Muir. There is still much to learn about this treatment for intractable epilepsies, particularly the long term consequences but I can see why parents of young children might be desperate. When Muir was little and his epilepsy was out of control we had no idea that those aggressive seizures would result in severe brain damage. The parents of today's children with intractable epilepsy know what potentially lies ahead and naturally, they want to avoid that outcome for their children. For Muir it is likely to be too late. The damage is done and we might be in as good a place with him as we are ever going to be. At this stage in his 17 year old life I would not want to destabilise him unless I know for sure an alternative treatment will be beneficial. In other words, we need medical evidence. 

Then came an interesting phone call from the US. In 2010 I ran the Athens Marathon for MMT and there I met Professor Pat Corby, a scientist at New York University (NYU). Pat had already been involved in research in epilepsy involving mice but what followed had to be more than a coincidence. She was about to run clinical trials to determine the safety of medical marijuana for the treatment of intractable epilepsies in children. The lead clinician was Professor Orrin Devinsky a well respected consultant specialising in severe and complex childhood epilepsies based at NYU. The trials were his initiative and with the support of GW Pharma, a London pharmaceutical company who produce medical marijuana formulated as Epidiolex, Orrin had successfully applied for FDA approval and the trials were due to begin. 

I spoke to Orrin Devinsky at length and he shared the protocol for his trials with me. There were a number of named doctors in the protocol including the UK's Professor Helen Cross, the current HRH The Prince of Wales' Chair of Paediatric Epilepsy based at Great Ormond Street Children's Hospital in London. Eager to see what we could do in the UK I went to see Helen Cross whom I know well and it was as I suspected an issue of getting a' buy in' from consultants, sponsors (the universities) MHRA (FDA equivalent in the UK)  and also GW Pharma who would be supplying the drug Epidiolex. There was also an issue of the all important funding. A buy in from families willing to participate in trials of course was not going to be a problem. 

I also introduced Orrin Devinsky to Dr Richard Chin based at Edinburgh's Royal Hospital for Sick Children and also Edinburgh University College of Medicine. The prospect of two UK trial centres to determine the safety of Epidiolex for the treatment of intractable epilepsies in children was looming. 

In the course of the months that followed we have made progress with both the University of Edinburgh and UCL as potential sponsors and GW Pharma have agreed to provide the trial drug, Epidiolex.  An application is being prepared by Edinburgh University (on behalf of the Muir Maxwell Epilepsy Centre (MMEC)) for consideration by MHRA and our hope is that approvals will be in place by the end of the year enabling trials to begin. Consultants, Richard Chin and Helen Cross will soon be recruiting patients for these trials, although the protocol will be specific.  

So from the position of ' doubting Thomas' I have come full circle and now it looks as though the Muir Maxwell Trust will be funding the UK's clinical trials to determine the safety of Epidiolex, a formulation of medical marijuana for the treatment of intractable epilepsy in children. 

Too much is at stake for these children if we procrastinate any longer. It is the right way to go and it cannot happen fast enough. 

Ann

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