Epilepsy Community Responds to the Institute of Medicine Report on the Epilepsies

Epilepsy Across the Spectrum: Promoting Health and Understanding, a new report from the Institute of Medicine, proposes public health initiatives that aim to improve the lives of people with epilepsy and their families and promote public understanding of the disorder. 

The report was released Friday, March 30, in Washington, DC. Information about the webcast is posted on the IOM website. 


March 30, 2012

WASHINGTON – Responding to today’s release of the Institute of Medicine ‘s (IOM) new report on the public health dimensions of the epilepsies, a cooperative group of professional and consumer organizations with special interest in epilepsy has issued the following joint statement.

We welcome the Institute of Medicine’s (IOM) new landmark study report on the public health dimensions of the epilepsies and enthusiastically embrace its recommendations.  The report, Epilepsy across the Spectrum: Promoting Health and Understanding, contains IOM’s review committee findings and recommendations in areas of surveillance, prevention, health care and human services, and education of health care providers, people who have epilepsy, their families and the public.  A full-scale evaluation of the health system response to epilepsy such as this has been long overdue.

Access to high-quality, patient-oriented care is critical for the health and wellbeing of between two and three million individuals in this country who have epilepsy and face reduced social and economic opportunity, increased risk of injury and death, and persistent stigma.  The IOM study has found substantial gaps for individuals in accessing quality health care and community services, deficiencies that need urgent and aggressive attention. More data are needed to better identify problems and improve access to healthcare and community services and that recognize complexities and comorbidities associated with epilepsy. Expanding knowledge is universally needed and will require greater education of healthcare providers, patients, and the public.

We commend the study committee for the specificity of its recommendations. These recommendations recognize the strengths of our member organizations and attributes they offer toward implementation. We accept the challenges laid out in this report and will work together to improve the quality and coordination of health care services.

To carry out the report’s recommendations a strong partnership with government entities is crucial.  We call on the leadership of our federal and state agencies and legislative bodies to develop and support programs that will aid and compliment our work.

We thank the IOM, its staff, and the distinguished experts on the ad hoc committee on the public health dimensions of the epilepsies for their dedication and hard work, and for sending a clear message that epilepsy is a serious national health problem in urgent need of attention and focus.

American Epilepsy Society (AES)
Citizens United for Research in Epilepsy (CURE)
Epilepsy Foundation (EF)
Epilepsy Therapy Project (ETP)
Finding a Cure Against Epilepsy and Seizures (FACES)
Hemispherectomy Foundation
International League Against Epilepsy (ILAE)
National Association of Epilepsy Centers (NAEC)
Preventing Teen Tragedy (PTT)
Rasmussen’s Encephalitis (RE) Children’s Project
Tuberous Sclerosis Alliance (TSA)

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These organizations were co-sponsors of the IOM Report. They are members of Vision 20/20, a cooperative group of more than 20 consumer, health professional, and advocacy organizations concerned with the broad spectrum of seizure syndromes and disorders known as the epilepsies. The group’s primary interests are improving epilepsy awareness and understanding and the advancement of basic and clinical research to prevent, treat, and cure this serious medical condition.  Vision 20/20 members provided public testimony before the Institute of Medicine’s independent Committee on ”The Public Health Dimension of the Epilepsies”.

Patient Advocacy Statement

Providers Statement