A Real-World Look at the Prolonged Efficacy of Fenfluramine in Dravet Syndrome: Derek Ems, MPH, CPHQ


The health economics outcomes research specialist at UCB talked about a retrospective analysis assessing the persistence of fenfluramine (Fintepla) in Dravet syndrome over 12 months, compared with valproate and levetiracetam. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

“The main takeaway is that a majority of patients are remaining persistent on fenfluramine in a real-world setting. It truly is providing a benefit to the patient whether that be a reduction in seizures or other health outcomes. Thinking of that significance for those with Dravet syndrome, there are other medications out there that are different from other currently approved medications. Based on that persistency data, it appears to have a sustained benefit for these patients. Therefore, it's another option in a somewhat limited treatment landscape, for those with these types of rare epilepsies.”

Dravet syndrome (DS), a rare early-onset epilepsy syndrome, is characterized by a life-long form of developmental and epileptic encephalopathy that typically begins in infancy. This type of epilepsy is identified by frequent, treatment-resistant seizures, significant developmental, motor, and behavioral impairments, and an increased risk of mortality and sudden unexpected death in epilepsy.1 Following FDA approval of the fenfluramine(Fintepla; UCB) oral solution in June 2020 for epilepsy treatment in DS, a recent study investigated medication persistence associated with the use of the treatment and compare it with valproate and levetiracetam.

In the study, investigators analyzed patient-level US claims data to measure the 12-month persistence of fenfluramine, valproate, and levetiracetam following initial treatment. Individuals with DS were identified by International Classification of Diseases diagnosis codes and persistence was defined as the duration of continuous medication supply without a gap of more than 90 days. The findings from the study were presented at the 2023 American Epilepsy Society Annual Meeting, held December 1-5, in Orlando, Florida, by coauthor Derek Ems, MPH, CPHQ, a health economics outcomes research specialist at UCB, and colleagues.2

Recently in an interview with NeurologyLive®, Ems discussed how the treatment persistence of fenfluramine compared with valproate and levetiracetam in individuals with DS over a 12-month period. He also talked about the surprising findings that emerged from the real-world analysis of fenfluramine persistency, and how the results might impact the current understanding of epilepsy treatment. Additionally, Ems explained the ways that the sustained benefit and high persistence of fenfluramine contributed to its significance as an alternative in the treatment landscape for rare epilepsies.

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1. Jaganathan S, Ems D, Sederman R, Wu CCS. A 12-month persistence analysis of fenfluramine, valproate, and levetiracetam in individuals with Dravet Syndrome: a comparison using US claims data. Presented at: 2023 AES annual meeting; December 1-5; Orlando, FL. Abstract 3.49.
2. UCB presents new data about the real-world experience of FINTEPLA® (fenfluramine) and rare epilepsy syndromes at 2023 American Epilepsy Society (AES) Annual Meeting. News Release. Published December 2, 2023. Accessed December 7, 2023. https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/ucb-presents-new-data-about-real-world-experience-of-fintepla-fenfluramine-and-rare-epilepsy-syndromes-at-2023-american-epilepsy-society-annual-meeting
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