managing AED treatment
Epilepsy Society’s Medical Director Professor Ley Sander has urged the need for a new treatment model for epilepsy.
Speaking at Epilepsy Society’s 2016 conference at Westminster Central Hall, Professor Sander bemoaned the ‘frustrating’ lack of advances in epilepsy treatment over the course of his 30- year career.
“We treat seizures and not epilepsy”, he said. “We need a ‘curative’ disease-modifying treatment that is lacking and urgently needed.
“We are treating the symptom and not the cause. It’s like giving someone with anaemia iron tablets rather than treating the root cause.
“Most of the time I shoot in the dark. I’m no different from a shaman.”
“Before I retire, I want to see a proper, tailored treatment to the person in front of me.”
Professor Sander said that while the US Food and Drug Administration (FDA) consider a 50 per cent reduction in seizures as a valid outcome in the trial of anti-epileptic drugs (AEDs), a 50 per cent does not make a difference in people’s lives.
Professor Sander explained that epilepsy is not just seizures, rather, it often imposes social disadvantage, can be a disability that affects education and employment prospects. “Telling someone they will have half the seizures they currently do is like telling someone to jump from the 5th storey of a building rather than the 10th.”
Professor Sander said that 90-95 per cent of people with epilepsy use AEDs as they are still the mainstay of current treatment. He said that although AEDs are not perfect they would remain an important element of treatment even in a few years’ time in the age of genomics.
He said that even though there are more than 25 AEDs currently available, up to 30 per cent of people with epilepsy do not respond to the current drugs, a figure that has not changed over Professor Sander’s career.
For this reason, he argued, there is an urgent need for new AEDs to reduce and stop seizures, morbidity and premature mortality, and to provide better, more cost-effective options.
He also argued for a shift in treatment model for epilepsy that would affect epileptogenesis rather than simply treating the symptoms of epilepsy.
Professor Sander explained that in his clinic, he lives by two mantras. The first of which is “Is it really epilepsy?”. This is because misdiagnosis of the condition is rife, with fainting frequently confused for epilepsy. He said medical professionals should go the extra mile to get the right diagnosis. One in five people with so-called ‘chronic epilepsy’ do not have the condition at all, and so, he said, it is not surprising that AEDs do not work.
Professor Sander’s second mantra is “epilepsy, and what else?”, referring to the high prevalence of co-morbidities in people with epilepsy. He said that an epilepsy diagnosis should arouse the medics’ suspicions of other medical problems, highlighting the need for collecting a thorough and accurate medical history.
He called for a better relationship between physicians and patients, emphasising the importance of regular treatment reviews and advocating discussing surgical options at the earliest possibility for those who may be candidates for this treatment.
Professor Sander concluded his talk by addressing the latest buzz surrounding cannabis-based medicines, saying there was a risk of disappointment because the expectations were too high. Quoting a recent open study in which half of the participants experienced seizure reduction, he cautioned cannabidiols are “not a magic bullet. We need to wait for the trial results”, adding “There will probably be a niche use for the drug and for those who are helped is going to be very gratifying.”