Community Corner: Updates on Epilepsy Therapies

New Seizure Medicine - Diacomit

DIACOMIT, also known as stiripentol, recently was approved by the U.S. Food and Drug Administration (FDA) to treat seizures associated with Dravet syndrome in children 2 years of age and older who are also taking clobazam.

• Dravet syndrome is an epilepsy syndrome seen in children that can be quite severe. Seizures are very difficult to control. Children with this type of epilepsy have a higher risk of early death from sudden unexpected death in epilepsy (SUDEP) and seizure emergencies. Other neurological and developmental problems may occur in children with Dravet syndrome too.
• Diacomit, manufactured by Biocodex, was found to be helpful in children with Dravet syndrome who had clonic and tonic-clonic seizures during two clinical trials. 67 and 71% of children had a decrease in seizures by at least 50% from their baseline.

Dr. Jacqueline French, chief scientific officer of the Epilepsy Foundation and professor at NYU Comprehensive Epilepsy Center, stresses the importance of this new drug approval. “For many years families of patients with rare forms of epilepsy such as Dravet syndrome have struggled to obtain stiripentol from other countries where it is approved for use,” she said. “It will now be available in the United States, a very welcome change, that will provide improved access for children who might benefit.”

For more information

Insurance Coverage of Laser Ablation by Aetna

We have recently learned that Aetna health insurance has changed its policies regarding the use of laser ablation procedures for the treatment of some forms of refractory epilepsy. A recent CNN story shared an update about Cara, a young woman with epilepsy who was denied coverage by Aetna for laser ablation surgery recommended by her epilepsy team. Reportedly, laser ablation now will be covered by Aetna for people with refractory epilepsy who meet certain criteria.

Thank you, Cara, for sharing your story and fighting for this important change that can help so many people with epilepsy!