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expert reaction to NICE draft guidance on cannabidiol for childhood epilepsy

The National Institute for Health and Care Excellence (NICE), has released draft guidance on the use of cannabidiol based medications for treating childhood epilepsy.


Prof David Nutt, The Edmond J Safra Chair and Head of the Centre for Neuropsychopharmacology, Division of Brain Sciences, Dept of Medicine, Imperial College London, said:

“Today NICE released their initial appraisal on cannabidiol in the form of Epidiolex for childhood epilepsy.  As predicted by DrugScience experts they found against it on the grounds of cost-benefit. We don’t have the company submission re cost/benefit so can’t comment on those, but we can reflect that this decision is the same as the one that NICE made for Sativex in Multiple Sclerosis. Getting pure extracts of plant cannabis products into the NHS now seems a lost cause. I have repeatedly argued that medical cannabis isn’t suitable for traditional pharmaceutical development programmes in part because of their high costs and low likelihood of returns for investors.

“Another significant issue in the case of these epilepsies is the fact that cannabidiol by itself isn’t particularly efficacious, most of the successful outcomes have come from the use of cannabis oil which contains other molecules such as d9THC and THCV that are also anti-epilepsy. Developing and testing such combinations would be extremely challenging and expensive and, given none may ever be reimbursed by NICE, ultimately futile. This is why no mainstream pharmaceutical companies are in the field.

“What we need to do now is learn from the parents who have gone overseas to find experts to treat their children and have seen remarkable outcomes. Their UK doctors are allowed to prescribe medical cannabis as this was made legal in Nov 2018 yet less than ten NHS scripts have been issued in the past ten months. At the very least all those children who were hoping for Epidiolex to become available to make their lives better should now have their specialists prescribe medical cannabis for them as a matter of urgency.”


The draft guidance on cannabidiol for treating Dravet syndrome and on cannabidiol for treating Lennox-Gastaut syndrome was available on the NICE website from 00:01 UK TIME on Friday 23 August. 


Declared interests

Prof David Nutt: “no personal interests to declare. He is also chair of the DrugScience charity’s scientific committee. DrugScience has a medical cannabis working group that receives unrestricted educational grants from a number of companies with interests in the field of medical cannabis”

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