Public Health and Epilepsy
History of the CDC Epilepsy Program
Congress first authorized funding for the CDC Epilepsy Program in 1994, with the recognition that public health initiatives were needed to help improve the lives of people with epilepsy. Soon thereafter in 1997, CDC sponsored the first national conference on public health and epilepsy, , cosponsored by the American Epilepsy Society (AES), the National Association of Epilepsy Centers (NAEC), and the Epilepsy Foundation (EF). The participants of this conference—representing public health professionals, epilepsy researchers and clinicians, people with epilepsy and their advocates—identified several priorities for public health:
- To improve epilepsy care, defining the goals of epilepsy treatment as "no seizures, no side effects."
- To improve communication and combat stigma.
- To promote self-management by people with epilepsy.
- To promote epilepsy surveillance and prevention research.
- To increase public awareness and knowledge about epilepsy.
- To strengthen partnerships in the community of epilepsy stakeholders represented at this meeting.
These goals helped shape the development of the CDC Epilepsy Program in the following years as it developed and supported projects, research, and activities in each of these areas.
The second national conference about public health and epilepsy, , was held in July 2003, cosponsored by CDC, AES, NAEC, EF, and the National Association of Chronic Disease Directors. This conference reviewed progress since the first national conference and recommended priorities for a public health agenda about epilepsy for future years. The priorities identified focused on early recognition, diagnosis, and treatment; epidemiology and surveillance; self-management; and quality of life. These priorities continue to provide guidance to the CDC Epilepsy Program activities.
Key Public Health Issues
CDC has identified several critical issues relating to epilepsy and public health, including the following:
- The goal of eliminating seizures while avoiding side effects from treatment is achievable for most people with epilepsy. However, current data suggest that many or most areas of the country are failing to provide all of the necessary care, services, and support for all people with epilepsy.
- While new data on epilepsy occurrence in the United States are becoming available, further surveillance and epidemiological research is needed to better understand: (1) how the causes, frequency, and severity of the condition differ among age groups, races, and communities; (2) how access to health care varies among these populations; and (3) how access to care and other factors such as associated health conditions affect outcomes and quality of life for people with epilepsy.
- People with epilepsy often struggle to overcome low self-esteem and the stigma that is attached to having epilepsy. The stigma is due in part to a lack of understanding by people they see every day — family members, schoolmates, colleagues. Some people mistakenly believe that epilepsy and seizures are something to fear, that drastic first aid measures must be taken to help someone having a seizure, or that people with epilepsy cannot be valuable and productive employees. Public education is needed to eliminate these misconceptions.