Cannabis Medicine Available for Severe Epilepsy in New Year

Peter Russell

December 23, 2019

Thousands of people in England with a severe form of epilepsy will have access to cannabidiol (Epidyolex, GW Pharma) from the New Year as adjunctive therapy for seizures.

The treatment for Lennox-Gastaut syndrome or Dravet syndrome, in conjunction with clobazam, would be available for patients aged 2 and over, NHS England confirmed.

The decision followed final guidance from the National Institute for Health and Care Excellence (NICE).

Clinical trials found that the combined treatment could reduce the number of seizures by up to 40%.

Around 2000 people could benefit from this treatment each year.

Simon Stevens, NHS chief executive, said: "The NHS is committed, through the Long Term Plan, to improving the lives of all those affected by rare diseases.

"Living with or caring for someone with severe epilepsy is exceptionally challenging, especially as there are so few treatments available for the rare forms of the condition.

"Thousands of people including children will now have access to this treatment, which has the potential to make a real difference."

Price Discount Agreed

Cost was a major factor in NICE's decision in August this year to reject cannabidiol for treatment of Dravet and Lennox-Gastaut syndromes. However, the manufacturer had since agreed a confidential price discount to supply the NHS, leading to approval in draft guidance last month.

Philip Lee, chief executive at Epilepsy Action, welcomed the final guidance. "Some children experience hundreds of seizures every day, and any one of these could be life-threatening," he said. "New treatment options for severe epilepsies do not come very often and many families feel they have already been waiting too long to access medicines like Epidyolex."

Mr Lee said that treatment with cannabidiol was "not a silver bullet", and that there was "work to be done to collect robust high-quality evidence of the effectiveness of other cannabis-based medicines, including those containing both cannabidiol (CBD) and tetrahydrocannabinol (THC)".

Prescribing Obstacles

Legislation in November 2018 permitted specialist doctors to prescribe medicinal-based cannabis. However, many healthcare professionals have been reluctant to do so due to concerns about prescribing guidance. In addition, the new ruling applies only to cannabidiol and not to whole plant medical cannabis containing both CBD and THC.

The situation has led to some families seeking private and costly treatment.

Millie Hinton, director of campaign group End Our Pain, said that at "around £2000 a month", some parents had been "pushed to financial breaking point funding the only medicine that gives their children significant seizure control and the quality of life they deserve".

An official NHS review earlier this year found that a "lack of evidence" was holding back use of cannabis medicines.

NHS England said that work was underway with the Department of Health and Social Care to implement the recommendations. Meanwhile, a letter had been sent to help clarify the procedure for prescribing unlicensed cannabis-based products in cases of unmet need.

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