US Survey Reveals Underuse of Dravet Syndrome–Specific Antiseizure Medications in the Clinic

Newly presented results from a US-based survey revealed that antiseizure medications (ASM) specifically approved for Dravet syndrome (DS), including stiripentol (Diacomit; Biocodex), fenfluramine (Fintepla; UCB), and cannabidiol (CBD), remain underutilized in the clinic. These findings, presented at the 2025 American Epilepsy Society (AES) Annual Meeting, held December 5-9, in Atlanta, Georgia, suggest that many clinicians favor traditional therapies for seizures despite evidence supporting better efficacy of DS-targeted options.¹

Among 38 clinicians from 27 epilepsy centers who completed the survey, findings showed that valproate (47%) and clobazam (24%) were the most frequently considered first-line ASMs for patients newly diagnosed with DS. Researchers reported that levetiracetam was commonly noted as an ASM already included in patient regimens. For second-line therapy, authors noted that clobazam (47%) and fenfluramine (24%) were most frequently considered, followed by cannabidiol (11%) and stiripentol (8%).

“This analysis confirms underutilization of DS-approved ASM therapies in DS management, highlighting a gap between consensus recommendations and real-world practice. Perceptions of limited access, dosing, drug-drug interactions, and lack of exposure were consistently cited as barriers to usage,” lead author Carla Schad, MD, medical officer for the US Orphan Disease Division at Biocodex, and colleagues wrote.¹ “Targeted education, increased familiarity, and streamlined access are critical for early adoption of DS-specific ASM to optimize seizure control and improve long-term outcomes in this high-risk population.”

The voluntary survey included clinicians from Level IV National Association of Epilepsy Centers and assessed first- and second-line ASM selections for patients with DS, as well as the rationale for treatment decisions. Following survey completion, a virtual advisory board with 8 pediatric neurologists was conducted to further analyze the findings and discuss barriers to ASM use and potential strategies to address them.

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Additional findings in the survey showed that respondents identified lack of familiarity, limited access, and concerns about adverse effects as the primary barriers to the use of DS-specific therapies. Despite limited use, authors reported that 58% of respondents agreed that DS-approved therapies provide better efficacy compared with other ASMs utilized. Additionally, the majority of respondents (71%) agreed that seizure freedom is possible when treating patients with DS.

In the survey, most providers (89%) indicated that the location where patients receive care influences antiseizure medication selection, although discrepancies were observed between utilization and provider comfort based on institution type. Following the survey, the advisory board discussions reinforced these findings and highlighted the need for expanded medical education on DS–specific ASMs.

Previous research using routinely collected US health care claims supported these findings, showing that the uptake of new antiseizure medications for DS has remained limited since 2022. Even though stiripentol and fenfluramine are recommended as second-line therapies, they were prescribed less frequently than medications considered third-line or beyond. These patterns highlight ongoing underutilization of DS-specific antiseizure medications in real-world practice across the US.²

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REFERENCES
1. Schad C, Nascimento F, Katterman C, Calvert A, Gwin K. Underutilization of FDA approved Dravet Syndrome Specific Therapies: Findings from a US Multi-Center Survey and Advisory Board. Presented at: AES 2025; December 5-9; Atlanta, Georgia. Abstract 2.446.
2. Xu KY, Lin BY, Perry MS, Nascimento FA. Antiseizure medication prescribing in people with Dravet syndrome: An analysis of real-time administrative data. Epilepsia Open. 2025;10(1):336-341. doi:10.1002/epi4.13105