The National Institute for Health and Care Excellence (NICE) has approved a new treatment for Lennox–Gastaut syndrome, a severe and treatment-resistant form of epilepsy. This rare neurological condition causes significant learning and behavioural difficulties, with many affected children experiencing developmental delays before seizures begin. The newly recommended drug, fenfluramine (Fintepla), can now be used alongside existing antiseizure medications for individuals aged two and older. Its effectiveness is assessed every six months, with treatment discontinued if it fails to reduce seizure frequency by at least 30%.
Lennox–Gastaut syndrome is particularly difficult to manage, as many existing treatments lose effectiveness over time, leaving patients with limited options. The approval of fenfluramine addresses an urgent need for alternative therapies, particularly for those unable to take cannabidiol with clobazam. The independent committee considered the severity of the condition and its impact on patients’ quality of life when making its recommendation, acknowledging the daily struggles faced by families.
The introduction of fenfluramine offers a vital alternative for individuals who cannot tolerate cannabis-based treatments. By improving seizure control, it has the potential to enhance stability, increase independence, and reduce hospital admissions. The decision reflects a strong commitment to expanding access to effective therapies that improve patient outcomes, alleviate family burdens, and support healthcare professionals in managing this challenging condition. Long-term benefits could lead to greater advancements in epilepsy treatment.
NICE previously endorsed fenfluramine for Dravet syndrome, another rare childhood epilepsy. Its latest approval allows more patients to benefit from a proven treatment that helps manage severe seizure disorders, providing better long-term prospects for individuals living with complex epilepsy conditions.
