Today (7/9/20) the Scottish Medicines Council (SMC) approved cannabidiol as a treatment option for those aged two years and over with Dravet or Lennox-Gastaut Syndrome. It is to be used together with another medicine called clobazam.
This means eligible children and adults in Scotland will now be able to access this treatment free on the NHS. It will be prescribed under the brand name Epidyolex®.
What is cannabidiol?
The cannabis plant is made up of many components, these are called cannabinoids. The two most well-known cannabinoids are CBD (cannabidiol) and THC (tetrahydrocannabinol).
THC is a psychoactive component which is what makes a person feel high. Any cannabis oil which contains more than 0.2% of THC is illegal in the UK, unless prescribed by the NHS.
Epidyolex contains CBD only and does not contain THC.
To find out more about cannabis as a treatment for epilepsy, please see our factsheet.
How does cannabidiol work?
It is not fully understood how cannabidiol works. It is thought to act on a number of different proteins that control the excitability of nerve cells. These actions are thought to reduce the chances of excessive electrical activity developing in the brain and causing seizures.
Who is eligible to be prescribed cannabidiol (Epidyolex)?
The SMC have approved cannabidiol as a treatment option for those aged two years and over who have Dravet or Lennox-Gastaut Syndrome. It is used together with another medicine called clobazam.
Dravet and Lennox-Gastaut Syndrome are two rare forms of severe epilepsy. Dravet Syndrome affects roughly 2 to 3 children out of 500 with a diagnosis of epilepsy.
Lennox-Gastaut Syndrome affects between 1 and 5 in every 100 children with epilepsy.
The two syndromes are associated with frequent, treatment-resistant seizures, and comorbidities including learning disability, autism, mobility problems and developmental delay.
The SMC have not yet been asked to approve cannabidiol (Epidyolex) as a treatment option for other types of epilepsy.
Epilepsy Scotland welcomes the SMC’s decision
Epilepsy Scotland welcomes the SMC’s decision to approve cannabidiol (Epidyolex) as a treatment option for these rare and very difficult to treat epilepsy syndromes.
We are pleased that eligible children and adults in Scotland will now be able to access this treatment for free on the NHS, alongside the rest of the UK.
Epilepsy Scotland gave evidence to the SMC on the enormous impact these syndromes have on individuals and their families.
We helped to input the views of carers and their experiences of the many difficulties of caring for a child or adult with the severe and unrelenting seizures and accompanying complex needs which are associated with Dravet’s and Lennox-Gastaut Syndrome.
It is clear the SMC have listened to families, charities and clinicians about the profound impacts of these severe and difficult to treat epilepsy syndromes and the long-standing need for further treatment options.
While Epidyolex may not be effective for everyone with these syndromes, there is high-quality clinical evidence that it can improve seizure control in some people where previous treatments have failed.
This recommendation is very welcome news for those affected by Dravet’s and Lennox-Gastaut Syndromes, their families, and carers.