New epilepsy treatment for Lennox–Gastaut syndrome

A new treatment option for Lennox–Gastaut syndrome has been approved by the National Institute for Health and Care Excellence (NICE).

Lennox–Gastaut syndrome is associated with a debilitating form of epilepsy that is difficult to treat. People with the condition have severe learning and behavioural disorders, and most children who develop Lennox-Gastaut syndrome will already have developmental delays before they start having seizures.

Fenfluramine (Fintepla) can be used as an add-on to other antiseizure medicines for treating seizures associated with Lennox–Gastaut syndrome for people 2 years and over. 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.

Current treatments do not control seizures caused by Lennox–Gastaut syndrome

In recommending fenfluramine, the independent committee took into account the rarity and severity of Lennox-Gastaut syndrome, the significant impact it has on the quality of life of people with the condition and their families and carers, and the high need for effective treatments, particularly for people who aren’t able to take cannabidiol with clobazam.

Helen Knight, director of medicines evaluation at NICE, said: “Current treatments often do not control seizures caused by LGS. The patient carer experts who gave evidence to the committee noted that the currently available drugs that make up standard care become less effective over time.

“For children and families living with Lennox–Gastaut syndrome, every day can be challenging, facing unpredictable and life-limiting seizures, and this new treatment option on the NHS will now offer new hope, giving many the chance for greater stability and a better quality of life.”

Professor Stephen Powis, National Medical Director for NHS England, added: “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.”

NICE already recommends fenfluramine for Dravet syndrome, another type of rare childhood epilepsy.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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