Scotland approves Epidyolex for tuberous sclerosis-related epilepsy

Estimated reading time: 2 minutes

Scotland’s health bosses have given the green light for Epidyolex to be prescribed on the NHS for epilepsy-related tuberous sclerosis complex (TSC).

The Scottish Medicines Consortium, the body responsible for deciding which drugs will be available through the NHS, has recommended Epidyolex to treat people living with TSC aged two years and over.

Tuberous Sclerosis Complex (TSC) is a rare genetic condition, which causes non-cancerous growths to develop around the body, such as the brain, eyes, heart and skin.

It is estimated that there are between 3,700 and 11,000 patients in the UK living with TSC.

Jazz Pharmaceuticals, which took over Epidyolex manufacturer GW Pharma last year, announced it had ​received approval from the Medicines and Healthcare products Regulatory Agency (MHRA) in August, for the drug to be used as an adjunctive treatment for the condition.

Last month, Wales  approved the medicine for use on the NHS, and NICE has begun appraising it for use in England, with a decision expected later in 2022.

Epidyolex, a purified cannabidiol (CBD) treatment, is already available through the NHS to treat seizures associated with Lennox-Gastaut syndrome or Dravet syndrome. 

The Tuberous Sclerosis Association said it was “delighted” with the decision and that Epidyolex offers an important option in the treatment and management of TSC-related epilepsy which can be hard to treat with common epilepsy medicines.

Chief executive Louise Fish, commented: “We’re delighted that the SMC has recommended Epidyolex for TSC-refractory epilepsy. TSC-related epilepsy is often hard to treat and it has a huge impact on day-to-day living for people with TSC and their families. Access to Epidyolex in Scotland could have major benefits for those living with TSC in the nation. Thank you to everyone in the TSC community who shared their experience of taking this drug with us to help the SMC reach a well-informed decision and make a positive recommendation.

“Although Epidyolex is now recommended by the NHS in Scotland and Wales, our work isn’t over until everyone across the UK has access to this important treatment option.”

• Epidyolex gains approval for seizures associated with tuberous sclerosis complex
• Spain approves first cannabis based medicine
• ‘Our lives have been transformed with my CBD’
• Australia lists first subsidised medical cannabis drug
• Cannabis reduces need for prescription drugs in MS patients