Photosensitive epilepsy excluded from education and patient care recommendations

No one in a position to influence US health policy is actively representing the interests of people with photosensitive epilepsy, and it shows. The serious public health threat of seizures triggered by commonplace flashing images continues to be neglected by neurologists, health advocates, and policy makers.

A multi-agency report was issued March 30 that sets out national priorities for research, public and clinician education, and patient care. Epilepsy Across the Spectrum: Promoting Health and Understanding, released by the Institute of Medicine, was authored by a committee of epilepsy and health policy experts. From the outset, it’s evident the report does not address seizures due to photosensitive epilepsy.

The introduction to the 377-page report begins this way:  “Characterized by seizures that are unpredictable in frequency, epilepsy is a common neurological disorder…” Let’s stop right there. It’s already clear that this review does not consider visually induced seizures, because in many cases, seizures triggered by environmental stimuli are entirely predictable. What’s most important for the report’s authors to understand and convey is that these seizures can be prevented through education and by reducing environmental triggers. Unfortunately, photosensitive epilepsy is completely omitted from the report.

Failing to place photosensitive seizures on the national education and public policy agenda has grave consequences for many members of the public, particularly people who don’t even realize they are photosensitive. Consider the enormous degree to which public policies and education could improve the lives of individuals with photosensitive seizures ( requiring seizure-safe TV as in the UK and Japan, for example), and you can appreciate the vastness of the missed opportunity.

The marginalization of patients with photosensitive epilepsy, including those at risk for seizures who have not yet experienced them, will be perpetuated as the (sponsoring) stakeholder organizations rally around the report’s recommendations. The American Academy of Neurology, the world’s largest organization of neurologists, has already pledged its support, citing the report’s call for the AAN to participate in the education of neurologists and other clinicians. The American Academy of Neurology, American Epilepsy Society, Epilepsy Therapy Project, International League Against Epilepsy, and National Association of Epilepsy Centers issued a joint statement of support:  “As clinicians and researchers most directly involved in epilepsy care, we are pleased and impressed with the depth of the IOM study and specificity of its evidence-based recommendations. The path ahead has never been clearer…”

Sponsors of the IOM report include:

the US Department of Health and Human Services, Administration on Developmental Disabilities, Center for Devices and Radiological Health, Center for Drug Evaluation and Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Center for Chronic Disease Prevention and Health Promotion, National Center on Birth Defects and Developmental Disabilities, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, Office of the Assistant Secretary for Health, Office on Women’s Health, and Office of the Assistant Secretary for Planning and Evaluation; and by members of the Vision 20-20 collaborative — American Epilepsy Society, Citizens United for Research in Epilepsy,, Epilepsy Foundation, Epilepsy Therapy Project, Finding a Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen’s Encephalitis Children’s Project, and Tuberous Sclerosis Alliance. How can so many organizations completely overlook the problem of common visual stimuli in our technology environment that trigger seizures?

Meanwhile, the straightforward recommendations of a distinguished consensus group in 2005—to acknowledge and address photosensitive seizures as a significant public health problem—continue to gather dust.

“…The Photosensitivity Task Force of the Epilepsy Foundation
of America believes that a seizure from visual stimulation
represents a significant public health problem. No
known method can eliminate all risk for a visually induced
seizure in a highly susceptible person, but accumulation
of knowledge about photosensitivity is now at a level sufficient
to develop educational programs and procedures in
the United States that substantially will reduce the risk for
this type of seizure…”

— from Robert S. Fisher, Graham Harding, Giuseppe Erba, Gregory L. Barkley, and Arnold Wilkins, “Photic- and Pattern-induced Seizures: A Review for the Epilepsy Foundation of America Working Group.” Epilepsia Volume 46, Issue 9, pages 1426–1441, September 2005.

The Institute of Medicine report ignores a significant public health problem. Anyone listening?

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