NHS to give green light to ‘remarkable’ new epilepsy drug

A breakthrough new epilepsy drug that cuts seizure frequency by at least half is expected to receive the green light from the NHS. In some patients, the drug – called cenobamate – can even completely eliminate seizures, thereby transforming their quality of life.

Around 17,000 patients with epilepsy could benefit from the new tablet, which experts say will soon be approved by the National Institute for Health and Care Excellence, the NHS ‘drug spending watchdog.

Doctors hailed the pill as the biggest breakthrough in the treatment of epilepsy in a decade.

It will be used to help desperate people who have failed to improve with existing medications and whose lives are marred by dozens of crises daily.

A breakthrough new epilepsy drug that cuts seizure frequency by at least half should be given the green light from the NHS. Pictured: Adam Smith, pictured with his wife Caroline, suffered up to 50 seizures a day and was one of the first patients in the UK to benefit from the new drug

Leading UK experts say cenobamate, also known as ontozry, could be life changing. Dr Rhys Thomas, Honorary Consultant Neurologist at the Royal Victoria Infirmary in Newcastle upon Tyne, said: “Many of these people may have actually learned that they will have epileptic seizures for the rest of their lives.

“But some are seeing remarkable improvement on this drug. Having no seizures has a huge impact on them – it means that they can drive again, keep a job, or even just brew a cup of tea without constantly worrying about when the next one strikes.

Some 600,000 people in the UK suffer from epilepsy. Seizures are the most common symptom and occur when the electrical impulses that carry messages between brain cells are disrupted.

There are many types of seizures, but the most common are what’s called focal seizures – which start in one side of the brain, and patients are usually conscious.

Focal seizures often spread to both sides of the brain and develop into a different type of seizure in which patients may have rapid twitches, muscles stiffening. Some may pass out.

Episodes kill around 1,000 people a year in the UK, often as a result of crises that have occurred at a dangerous time.

It is estimated that up to a third of patients do not fully respond to medications, with some ending up undergoing complex surgery to remove the affected part of the brain.

The last big breakthrough in treatment was the UK launch a decade ago of Keppra, an anticonvulsant.

In clinical trials with cenobamate, the drug was given to patients with focal seizures every day for 12 weeks and the results were compared with a dummy pill. The results, published in The Lancet Neurology, showed that it reduced seizure rates by more than half in up to 64% of patients who had not responded to other treatments.

It is not known exactly how it works, but it is thought to attenuate abnormal electrical activity in the brain. NICE should recommend the use of the drug in patients who still suffer from frequent seizures, despite at least two existing treatments.

Adam Smith, 32, a childcare worker from Newcastle, was one of the first patients in the UK to benefit from the new drug.

He was diagnosed with epilepsy at the age of ten, when regular seizures left him paralyzed on the right side of his body up to ten times a day. By the time he was in his twenties, Adam was experiencing up to 50 seizures a day, each lasting up to 40 seconds.

In November 2020, he was enrolled in the cenobamate trial and claims the effects were life changing. He went eight months without a single seizure, and although they still do occasionally, they are much less common.

And he was able to get rid of almost every other medication, freeing him from debilitating side effects.

He says, “The doctors always play with my doses and I have occasional seizures. But I’m in a much better place than I’ve been in a long time. I returned to work full time and got a new job and promotion. And because I take less medication, I have more energy to spend time with my wife, my son and my dog.

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