Statement from Epilepsy Healthcare Provider Organizations in Response to the Institute of Medicine’s New Landmark Report on Epilepsy

For immediate release
March 30, 2012

WASHINGTON -- The Institute of Medicine (IOM) on March 30th released its new report on the public health dimensions of the epilepsies, the first authoritative independent appraisal of epilepsy and its management in the United States.   This landmark report, Epilepsy across the Spectrum: Promoting Health and Understanding, makes it clear that we have a health system woefully deficient in providing consistently high quality care for a very large national patient population conservatively estimated at well over two million adults and children burdened with epilepsy and associated health problems.   Gaps in the nation’s ability to deal with epilepsy and its consequences prevail in so many spheres that vigorous action is urgently needed to affect change and create a system that will assure accessible, comprehensive, high-quality optimal care for every person who has the condition.

Epilepsy is the term for any condition characterized by the recurrence of seizures.  Seizures can be caused by almost anything that affects the brain, but is characteristically due to a spectrum of seizure syndromes and disorders that range in their severity and treatment outcomes.  Epilepsy affects 65 million worldwide and is responsible for years of life lost due to disability and premature death equivalent to lung cancer in men and breast cancer in women, according to a study by the World Health Organization.   There is no cure and one in 26 individuals will develop epilepsy at sometime during life.

The IOM report confirms what we find in our practice.  Optimal treatment for epilepsy is so complex from a medical perspective as to present a significant challenge, yet it must be tailored to each patient.  Moreover, epilepsy’s complexity and comorbidities demand elements of care beyond what a single healthcare professional can provide.  Inequities in quality and fragmentation in the way epilepsy services are delivered is deeply concerning.   

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.  But the scope of what must be done to improve accessibility and assure quality care for every person who has epilepsy is enormous and ranges across a host of issues associated with expanding knowledge, improving care, and educating providers, patients, families and the public.   As described in the IOM report, meeting this challenge will require collaboration in developing a variety of screening tools, clinical guidelines, and metrics, and an external validation for accreditation of epilepsy centers.  Our organizations will work together to strengthen and expand existing cooperative efforts, and reach out to other providers to improve the quality and coordination of health care services.  

Epilepsy incidence is greatest at life’s extremes.  We as a community will give special emphasis to activities directed toward improving the diagnosis and treatment of epilepsy in the pediatric and geriatric populations, and, in particular, children affected by some of the less common yet most severe seizure syndromes called catastrophic epilepsy.  

Implementing the IOM recommendations will take a significant investment of resources beyond the capacity of our community to fully support.   We will seek to find and develop new sources of funding and look for new ways to collaborate with current funders.   At the same time, healthcare delivery in the U.S. is dependent on the action and support of our federal and state agencies and legislative bodies.  We call on leaders at all levels to support the development and funding of programs that will enhance the ability of the professional and lay communities to collaborate in creating an effective and efficient system of care for people with epilepsy and their families.

American Epilepsy Society (AES)
Epilepsy Therapy Project (ETP)
International League Against Epilepsy (ILAE)
National Association of Epilepsy Centers (NAEC)

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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”.