Doctors in the NHS will now have the option to prescribe Epidyolex® to patients with tuberous sclerosis complex (TSC). Epilepsy is a condition that causes frequent seizures and can severely affect a patient’s quality of life. TSC is a rare genetic disorder which causes the development of benign tumours. The most common symptom of the condition is epilepsy, however, affecting 90% of those with TSC.
The use of cannabis-based medicinal products for epilepsy was a leading conversation for the legalisation of medical cannabis in 2018, as approximately one-third of patients are not responsive to conventional treatment. Prior to this latest recommendation from the National Institute for Health and Care Excellence (NICE), Epidyolex®, which is a licensed preparation of cannabidiol (CBD), could also be funded on the NHS for individuals with Lennox-Gastaut syndrome and Dravet syndrome with intractable epilepsy.
This decision is thought to potentially benefit around 1000 patients in England and Wales who will now be able to access the medication through the NHS.
At present NICE has only provided recommendations of Epidyolex® in these three conditions and has called for further evidence in other conditions and of unlicensed medical cannabis preparations. A recent study published in the journal Neuopediatrics by authors from Sapphire Medical Clinics has reported the outcomes from individuals prescribed these products who had enrolled in the UK Medical Cannabis Registry.
The UK Medical Cannabis Registry study on childhood epilepsy
Dr Simon Erridge, Head of Research and Access at Sapphire Medical Clinics said: “Our recent study on childhood epilepsy is the largest analysis of its kind in Europe and we hope that this evidence will be sufficient to help accelerate the planned ‘large-scale trials’ of medical cannabis from the NHS and National Institute for Health Research announced in March 2022.”
The study shows changes in the number of seizures in children with epilepsy after they enrolled in the UK Medical Cannabis Registry. The study looked at 35 children with treatment-resistant epilepsy and recorded the number of seizures each month that the patients each experienced. The study showed there was a change in the average number of seizures experienced monthly by patients.
Musa, an 8-year-old with severe brain damage, cerebral palsy, and epilepsy saw great improvements after being enrolled in the UK Medical Cannabis Registry.
Musa’s mother, Ayisha said: “Before we discovered Sapphire Medical Clinics, Musa could not attend school, go to the shops or even leave the house, we lived in fear of his seizures and they stopped him having as normal a life as possible.”