Dravet Syndrome UK welcomes the decision to make Epidyolex available via the NHS

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Posted 12th November 2019 in

We welcome the addition of Epidyolex (cannabidiol) to help treat Dravet Syndrome, a rare neurological condition with limited treatment options. 

On 11 November 2019, UK’s National Institute for Health and Care Excellence (NICE) approved the routine NHS use of Epidyolex (cannabidiol) in conjunction with clobazam as an option for treating seizures associated with Dravet Syndrome in people aged 2 years and older. Epidyolex was also approved for the treatment of seizures associated with Lennox-Gastaut Syndrome.

This decision offers new hope to patients and their families searching for better seizure control. Many families come to us asking about the potential of cannabis-based medicines, particularly cannabidiol (CBD), and we are thrilled that one is now available on the NHS that has safety and efficacy data to its name, and is approved by a medicines regulator.

This decision marks the first time that a plant-derived cannabis-based medicine has been recommended by NICE for use on the NHS. Epidyolex may not be suitable for all Dravet individuals, and responses to the treatment vary. That said, its a wonderful step forward to have a new treatment option available that offers hope to Dravet families searching for better seizure control, and we’re thrilled that NICE has recognised this.

NICE is the body that decides which treatments should be available free of charge via NHS England & this decision is a reversal of its earlier position, not to recommend Epidyolex. In addition, NHS England has agreed to fund Epidyolex centrally. This means that families won’t have to wait on budget approval from local NHS bodies if eligible for treatment with Epidyolex, hopefully enabling faster and fairer access. Wales, Scotland & Northern Ireland follow a slightly different processes - more information about these should follow soon. 

For more information, please visit the NICE website or download the final appraisal document, which provides more details about the NICE recommendation to approve Epidyolex with clobazam for Dravet Syndrome.