The drug, fenfluramine, will be funded for NHS patients in England from 20 February after NICE recommended it for seizures associated with Lennox–Gastaut syndrome (LGS) in people aged two years and over. It is the first non-cannabis-based treatment approved for this form of epilepsy.
LGS is a rare, lifelong, and treatment-resistant form of epilepsy that causes frequent, unpredictable, and debilitating seizures. In severe cases, children may experience multiple seizures throughout the day, significantly impacting their quality of life. These seizures often lead to cognitive issues, difficulties with mobility, and an increased risk of injury due to sudden loss of muscle control.
Fenfluramine is an oral liquid medicine taken daily, with the dose tailored to each patient based on their weight. It works by increasing the levels of serotonin in the brain, which helps to reduce seizure activity.
Professor Stephen Powis, national medical director for NHS England, said: ‘To have a proven, evidence-based new medicine that can be taken at home to help control and reduce their child's seizures, and for example lower the risk of them experiencing injuries and needing to go to hospital, is fantastic news for hundreds of families.
‘Fenfluramine will offer a vital alternative for those who can't tolerate existing cannabis-based treatment and the fast-tracking of this treatment to be available from today is another example of the NHS' commitment to ensuring access to the best therapies that deliver real benefits to patients as well as value for the taxpayer.'