NICE approves life-changing new treatment for people with Lennox- Gastaut Syndrome

People with a rare form of epilepsy in England will now have a new treatment option to try following approval by NICE.

Fenfluramine had previously been approved by the Scottish Government as a treatment for around 1,400 people with the rare, hard-to-treat epilepsy, Lennox- Gastaut Syndrome (LGS). But now NICE has also approved its use for people in England. 

LGS is a severely debilitating form of epilepsy that begins in early childhood between the ages of two and seven years. It is characterised by frequent seizures of different types. Drop seizures result in a loss of muscle tone or stiffening of muscles, and people can fall suddenly to the ground. This may result in severe injuries and hospitalisation. The condition is also associated with severe learning and behavioural disorders.   

People with the condition need round-the-clock care and help with almost all aspects of daily life. Approximately 5% of children with LGS will die during childhood.   Fenfluramine is recommended if the frequency of drop seizures is checked every 6 months and is stopped if the frequency is not reduced by at least 30% compared with the 6 months before starting treatment.  

Professor Ley Sander, Medical Director at Epilepsy Society said: “We welcome the decision by NICE to allow the prescription of fenfluramine for people with treatment-resistant Lennox-Gastaut Syndrome. It significantly reduces seizure frequency, mainly drop attacks and convulsions, and this will make a real difference to people with this rare form of epilepsy. Most people with this syndrome don’t achieve complete seizure freedom, but this will improve their quality of life. Given the limited therapeutic options currently available for Lennox-Gastaut Syndrome, this approval offers a significant source of hope for affected families."