Living Well with Epilepsy II

The public health of our nation is increasingly burdened by chronic illnesses. Seizures and epilepsy (also known as recurring seizures) is one of these chronic disorders that affects 2.3 million Americans each year, and many more family members, friends, and caregivers regardless of age, sex, and ethnicity. Seizures are a common neurological problem that, unfortunately, is under-recognized and not treated as significant by large segments of our society. It is commonly misunderstood because it is a collection of disorders that have different causes, consequences, and outcomes. For many people, epilepsy can be a self-limiting or easily controlled health problem, but for many more, epilepsy can be a lifelong disorder requiring ongoing treatment and enormous resources to manage, cope with, and hopefully prevent, many disabling physical, social, cognitive, and emotional burdens. Unfortunately, major deficiencies in our national approach to managing epilepsy are present, including the lack of an agreed upon protocol for aggressive control. Many people accept lack of seizure control as inevitable, and physicians too often subscribe to a similar philosophy. Consequently, people may never be referred to specialists or, when they are, many years of uncontrolled seizures may have already occurred. Although logic dictates that better, earlier care will result in better outcomes, research is needed to substantiate this hypothesis. Efforts to interrupt, prevent and change the development of epilepsy must be made with earlier, more aggressive, and systematic care. We must have systems and models of care that work better for people with epilepsy and allow people access to this care - people in rural America must have the same expectations and outcomes as those in urban America. Seizures and epilepsy, however, have only been recognized by the Centers for Disease Control and Prevention as a public health concern for the past 10 years, and, although epilepsy is clearly a chronic disease with both medical and social components, it has not been a public health priority. This was partly because public health has traditionally focused on tracking sources of infectious disease and related health hazards with a view to controlling and preventing their effects and promoting a more healthy society. The need to track the incidence, prevalence, mortality, health status, quality of life, and social outcomes of chronic disease is now more pressing, requiring the public health community to pay greater attention to these issues, using many of the same strategies with which they formerly tracked infection and its management. In 1997, the Centers for Disease Control and Prevention, together with key thought leaders and stakeholders, began crafting a public health agenda to target key challenges facing people with epilepsy. Despite substantial efforts, the epilepsy and public health communities have recognized a continuing lack of awareness regarding the seriousness of epilepsy and available treatment options among people with epilepsy, health care professionals, and the general public. These issues led to the need to re-examine critical issues associated with epilepsy and how the public health community can respond most effectively to them. Living Well with Epilepsy II, a national conference on public health and epilepsy, was held in July 2003, and brought invited experts from the medical, public health, academic, advocacy, voluntary health, and corporate communities together with people with epilepsy and their families. The goal of the conference was clear - review progress since the first Living Well with Epilepsy conference, recommend needs and priorities for a public health agenda on epilepsy for the next five years, and identify other challenges that must be addressed by the epilepsy community and those who support it.