November is National Epilepsy Awareness Month (NEAM), which was established to “highlight the growing need for awareness about epilepsy” as a way to help “dispel myths about epilepsy, teach proper seizure first aid and improve the quality of life for all individuals, families, and friends with epilepsy.” Epilepsy.com Editor-in-Chief Robert Fisher, MD, PhD, wrote in the November newsletter that epilepsy “remains the most prevalent serious disorder that is able to affect people across the full spectrum of ages.”
People who have seizures not only experience pre- and post-seizure symptoms, they become afraid and embarrassed should they have a seizure in public. In a November 2000 issue of Epilepsy & Behavior, more than 1,000 epilepsy patients were asked what the worst thing is about having epilepsy, and the number-one answer was fear—fear of dying, losing their job, or having a seizure while driving—followed by humiliation. It doesn’t help that many neurologists will not prescribe generic versions of the more than 20 AEDs (if they’ve received FDA approval), because there may be a risk that their patients could have a “breakthrough” seizure due to “the disparity between how AEDs work and the FDA requirements for generic equivalents”; the FDA “allows for significant differences between [brand-name] and generic drugs.” This is where the cost of medication comes into play, as there are many patients who cannot afford the high cost of brand-name drugs.
Because there are so many epilepsy patients who are under-treated, programs like NEAM and The Epilepsy Phenome/Genome Project are essential.
“Misconceptions about epilepsy are widespread,” says Rosemarie Kobau, a behavioral scientist with the CDC’s Epilepsy Program, co-author of the study. “Until there’s better understanding—among physicians and the public alike—there’s unlikely to be much progress made.”
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