Improving Epilepsy Programs, Services, and Outcomes through National Partnerships

The CDC Epilepsy Program is announcing a new, FY16 non-research FOAs designed to improve health and quality of life for people with epilepsy. Epilepsy is a chronic neurological condition characterized by recurrent seizures that can be caused by many different conditions that affect a person’s brain. In the US, about 2.9 million people have active epilepsy (physician-diagnosed epilepsy either currently under treatment or accompanied by 1 or more seizures in the past year). People with epilepsy are likely to have multiple chronic conditions and live in households at lowest income levels. They are also significantly more likely to report being disabled and having lower health-related quality of life. Epilepsy results in an estimated $15.5 billion in medical costs and lost or reduced earnings and productivity annually. Only 57.7% of adults aged 18 years and older with epilepsy and uncontrolled seizures received appropriate medical care (saw a neurologist or epilepsy specialist) in 2010. These findings from the 2010 National Health Interview Survey suggest that many people are not receiving the right kind of care for this complex condition. Delayed recognition of seizures and inadequate treatment increase a person’s risk of subsequent seizures, brain damage, injuries, disability, and early death. Although epilepsy is widely recognized by the public, it is poorly understood, even among people who know someone with the disorder. While negative stereotypes about epilepsy have decreased over past decades, CDC studies have found that the public continues to be unfamiliar with appropriate seizure first-aid, and report risk and safety concerns regarding being around a person with epilepsy. Public misunderstanding and stigma marginalize people with epilepsy, limiting their life opportunities and social contributions. In 2012, the Institute of Medicine released its report, Epilepsy across the Spectrum: Promoting Health and Understanding. The report describes the current gaps, challenges, and opportunities for public health to address epilepsy, and suggests 13 recommendations for action. CDC has a key role in 12 of these, including improving health professionals’ education about epilepsy, improving the delivery and coordination of community services, informing media to improve awareness and eliminate stigma, and improving and expand educational opportunities for people with epilepsy and their families. Based upon the Program’s goals, the IOM recommendations on epilepsy, and the input of more than a dozen stakeholder groups during the FOA stakeholder engagement process, the new FOA will support three core public health functions applied to epilepsy: workforce competency; mobilizing community partnerships and actions, and educating and empowering people about epilepsy. These complementary activities will aim to have the following long term goals: - Increase the number of people with epilepsy who get appropriate and timely medical care. - Improve social participation (such as employment and school attendance) among people with epilepsy. - Decrease public stigma of epilepsy. - Improve health and quality of life of people with epilepsy.