Cannabis oil ‘too expensive’ to give to severely epileptic children on NHS Cannabidiol, in the form of Epidiolex, will not be recommended for use despite the drug having been shown to reduce seizures

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Nice’s draft guidance said that while there was evidence that cannabis oil reduced the number of seizures children had, Epidiolex was not an “effective use of NHS resources” and its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.

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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.

Licences to use medical cannabis

A limited number of parents have licences to use medical cannabis oils, with some resorting to bringing in the medication from abroad in addition to having a valid UK licence. It is believed Epidiolex has been given to around 150 NHS patients as of March, according to a Government Health and Social Care Committee meeting.

Since 1 November 1 last year, specialist NHS doctors can legally prescribe unlicensed cannabis-based products containing THC, the psychoactive constituent of cannabis which is what makes users “high”. However, only two patients – both of whom are children – are believed to have been given a prescription on the NHS. Cannabidiol itself, which does not contain THC, is not licensed for use in the UK but a Nice spokesperson said it expected this to change in the near future.

Professor David Nutt, a neuropsychopharmacologist at Imperial College London, said the decision came as no surprise.

“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,” he said.

“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.”