Availability and affordability of cannabinoids for epilepsy treatment across different geographic settings-A survey from the ILAE Plant-Based Therapy Task Force

Abstract

Pharmacoresistant seizures remain a major challenge for the global epilepsy community. Hence, approval of highly purified pharmaceutical grade cannabidiol (CBD) for Dravet syndrome (DS), Lennox–Gastaut syndrome (LGS), and refractory seizures associated with tuberous sclerosis complex (TSC) generated significant interest, both in the medical community and public domain. However, there are limited data on the availability and accessibility of CBD and other cannabinoids for the treatment of drug‐resistant epilepsy worldwide. The International League Against Epilepsy (ILAE) Plant‐Based Therapy Task Force commissioned a working group in 2022 to conduct a survey through the chapters to understand the global availability of cannabinoids for the treatment of epilepsy, and to identify the possible factors affecting the accessibility and affordability of these products. The survey was conducted between June and December 2023. Responses were screened, tabulated, and analyzed using pre‐set criteria. Among the 126 ILAE Chapters, 86 (68%) completed the survey questionnaire. Thirty‐two countries had regulatory approval for cannabinoids for the treatment of epilepsy at the time of this survey, of which 21 (65.6%) reported approval only for CBD. Twenty‐three chapters (71.8%) in this group reported cannabinoids to be unaffordable, and 18 (56.2%) reported they were difficult to access. Cannabinoids were not approved formally for epilepsy in 54 countries (62.7%). Over‐the‐counter availability of unapproved products containing cannabinoids was reported from 34 countries (39.5%). Forty‐seven chapters (54.6%) indicated the existence of traditional plant‐based products for epilepsy in their respective countries, of which 16 had products containing cannabinoids. Forty‐two chapters (48.8%) expressed a need for targeted advocacy efforts from the ILAE to improve the accessibility of cannabinoids for the management of epilepsy. This survey should act as a premise for developing better concerted strategies to improve the availability and affordability of cannabinoids for the management of epilepsy across the world.