Nobody’s going to be happy here. Not kids with epilepsy, not their parents and not shareholders at GW.. what next?


Children with rare forms of epilepsy will not be allowed a cannabis-based drug on the NHS after the UK’s medical advisory body deemed it too expensive to prescribe. Cannabidiol, in the form of Epidiolex, will not be recommended for use on the NHS after the ruling by the National Institute for Health and Care Excellence (Nice), despite the drug having been shown to reduce seizures.

Campaign group Cannabis Patient Advocacy and Support Services described the decision as “disappointing” as it said the oil had “dramatically” helped some children. The decision mirrors the one that Nice made last November for Sativex, a cannabis-based medicine that is sprayed into the mouth, in multiple sclerosis.

Nice’s draft guidance said that while there was evidence that cannabis oil reduced the number of seizures children had, Epidiolex was not an “effective use of NHS resources” and its long-term effects were unclear.  Officials also had concerns about the “validity of the economic model” of GW Pharma, the company that provides Epidiolex. The drug treats two types of severe epilepsy, Lennox-Gastaut syndrome and Dravet syndrome.

Dravet syndrome usually begins within the first year of life, affecting around 600 people in England. Around one in five people will die because of their condition, the majority before 10 years of age. Lennox-Gastaut syndrome is another severely debilitating form of epilepsy diagnosed in childhood, affecting up to 4,000 people in England. Around five per cent of people with Lennox-Gastaut syndrome will die prematurely because of their condition.People who currently have access to cannabis-derived drugs to treat epilepsy will not be affected by the ruling.

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