Hope for children with severe form of epilepsy as NHS rolls out new drug
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).
It is the first non-cannabis-based treatment approved for this form of epilepsy, according to NHS officials.
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
The drug is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures.
LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments.
It is thought that around 1-2% of the 60,000 children in England with epilepsy have LGS.
Professor Stephen Powis, national medical director at NHS England said the 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.
'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.'
Previously, the only Nice-recommended treatment for LGS was the cannabidiol Epidyolex with the medication clobazam, which was approved in 2019.
Clinical trials suggest fenfluramine can slash the frequency of seizures that cause patients to lose consciousness and muscle control, known as drop seizures, by 26.5% on average.
NHS England is using its Innovative Medicines Fund to fast-track the treatment to eligible patients.
It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease
Lisa Suchet, whose 10-year-old son has LGS
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.
'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.'
Lisa Suchet, whose 10-year-old son has LGS, welcomed the recommendation.
'My son has suffered with seizures since he was five weeks of age, including drop seizures, which are the most devastating,' she said.
'They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall.
'There are so few effective drugs for seizure control. Many don't work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take.
'That there is another option now available, which has shown effective results and minimal side effects is a huge comfort.
'It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease.'
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