Hundreds of children with a rare and severe form of epilepsy are hoping a new drug being rolled out on the NHS may provide a better quality of life.
Fenfluramine has been recommended by the National Institute for Health and Care Excellence (NICE) for patients aged two and over with Lennox-Gastaut syndrome (LGS).
LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments.
It is thought that between one and two percent of the 60,000 children in England with epilepsy have LGS.
Fenfluramine is the first non-cannabis-based treatment approved for LGS, according to NHS officials.
The drug is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures.
Clinical trials suggest fenfluramine can cut the frequency of seizures that cause patients to lose consciousness and muscle control, known as drop seizures, by 26.5% on average.
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Previously, the only NICE-recommended treatment for LGS was the cannabidiol Epidyolex with the medication clobazam, which was approved in 2019.
Professor Stephen Powis, national medical director at NHS England said the latest recommendation offers patients and their families “new hope”.
“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.
“It’s fantastic news for hundreds of families that there’s 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,” he said.
Epilepsy is a condition that affects the brain and causes frequent seizures.
It can start at any age, but usually starts in childhood or in people over 60.
Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.
Symptoms include:
• uncontrollable jerking and shaking, known as a “fit”;
• losing awareness;
• becoming stiff;
• strange sensations, such as a “rising” feeling in the belly, unusual smells or tastes, and a tingling feeling in your limbs;
• collapsing.
Seizures can be triggered in numerous ways including flashing lights, sleep deprivation, misuse of drugs or missing medications.
The condition affects more than 600,000 people in the UK.
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NHS England is using its Innovative Medicines Fund to fast-track the treatment to eligible patients.
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Helen Knight, director of medicines evaluation at NICE, added: “The often distressing and life-limiting nature of this very difficult-to-control epilepsy means that any new treatment options are particularly welcome.
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“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.”
