Newswise — 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 provid ers, 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 is needed to better identify problems and improve access to healthcare and community services 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)American Academy of Neurology (AAN)Anita Kaufman FoundationBrain Recovery ProjectChild Neurology FoundationCitizens United for Research in Epilepsy (CURE)Danny Did FoundationDravet.orgDup 15q AllianceEpilepsy FoundationEpilepsy Therapy Project (ETP/epilepsy.com)Finding a Cure Against Epilepsy and Seizures (FACES)Hemispherectomy FoundationHIV-6 FoundationHope for Hypothalamic Hamartomas (HH)International League Against Epilepsy (ILAE)Intractable Childhood Epilepsy (ICE) AllianceLennox-Gastaut Syndrome (LGS) FoundationMy Epilepsy StoryNational Association of Epilepsy Centers (NAEC)Parents Against Childhood Epilepsy (PACE)Preventing Teen Tragedy (PTT)Rasmussen’s Encephalitis (RE) Children’s ProjectSeizure TrackerTuberous Sclerosis Alliance (TSA)
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These organizations 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”.
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