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.

On March 30 a multi-agency report was issued that reviews the state of epilepsy care, attitudes, and research in the US. The Institute of Medicine’s Epilepsy Across the Spectrum: Promoting Health and Understanding offers recommendations for better patient care and for achieving greater understanding of epilepsy. Its authoring committee, the Committee on the Public Health Dimensions of the Epilepsies, is made up of health policy and epilepsy experts. The report sets out priorities for research, public and clinician education, and patient care.

The report opens with these words:  “Characterized by seizures that are unpredictable in frequency and potentially unnerving…” So it’s clear right off the bat that in this comprehensive assessment of challenges for improving the lives of people with epilepsy, there was no importance placed on visually induced seizures. The full report is 377 pages long and includes no mention of photosensitive epilepsy, a serious public health threat that continues to be neglected by neurologists and policy makers.

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. When you consider the enormous degree to which public policies and education could improve the lives of individuals with photosensitive seizures (such as requiring seizure-safe TV as is done in the UK and Japan), you can appreciate the vastness of the missed opportunity.

The IOM report’s conclusion begins with: “This review of the public health dimensions of the epilepsies highlights numerous gaps in knowledge and management of epilepsy and also presents opportunities to move the field forward.” But photosensitive epilepsy, which affects many members of the public with no history of seizures, is a gap the committee left out. Many photosensitive seizures can be prevented through education and reduction of environmental triggers. How can this be overlooked?

The marginalization of patients with photosensitive epilepsy, including those at risk for seizures who have not yet experienced them, will be perpetuated as (sponsoring) stakeholder organizations rally around the no-mention-of-photosensitivity recommendations. The American Academy of Neurology, the world’s largest organization of neurologists, has already pledged its support for them, 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…”

The IOM report was sponsored by 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.

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.

Anyone listening?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s