Promoting a Public Health Agenda

The Epilepsy Foundation has long realized that epilepsy should be a priority of the federal public health system. We have diligently advocated for increased funding on a federal level for epilepsy programs. We have accomplished much in this area.

Epilepsy Funding Recommendations -- Fiscal Year 2005

• Epilepsy Program at the national Centers for Disease Control and Prevention: The Epilepsy Foundation supports $13.2 million for the CDC epilepsy program, a $5 million increase.
• Health Resources and Services Administration: The Epilepsy Foundation supports $4.5 million for the HRSA demonstration projects, a $1.5 million increase.
• National Institutes of Health: The Epilepsy Foundation supports continuing increases in funding for the NIH, particularly the National Institute of Neurological Disorders and Stroke. In keeping with this effort, we support a $1.65 billion funding level for NINDS in FY 2005, a 10 percent increase.

Public Health Agenda

In 1993, Congress directed the CDC to develop an epilepsy program within the National Center for Chronic Disease Prevention and Health Promotion. The goals for this program include progress in research, epidemiology and surveillance, early detection, improved treatment, public education and expansion of interventions to support people with epilepsy and their families in their communities. In July 2004, the "Living Well with Epilepsy II" Conference set the most recent public health agenda for the CDC with several participants from the epilepsy community. Sponsored by the CDC, the American Epilepsy Society, the National Association of Epilepsy Centers, the Chronic Disease Directors, and the Epilepsy Foundation, the conference helped to develop an agenda that includes benchmarks for the improvement of recognition, diagnosis and treatment; epidemiology and surveillance; self management; and quality of life. This agenda is much larger than current resources for the program. In FY 2004, the CDC program received $8.2 million, and we are asking for a $5 million increase for FY 2005 in order to successfully implement the "Living Well with Epilepsy II" public health agenda.

Since the passage of the Children's Health Act, the Epilepsy Foundation has been advocating for funding to create the demonstration programs and public awareness campaign authorized in the legislation. This year the Foundation was able to secure $3 million within the Health Resources and Services Administration's Maternal and Child Health Block Grant account in the FY04 Omnibus Appropriations Bill. Additional resources will be needed in order to expand the reach of the program. We are seeking a $1.5 million increase in funding for the newly funded demonstration projects implemented through the Health Resources Services Administration (HRSA). The goal of these projects is to ensure that persons living with epilepsy in medically underserved areas receive early recognition and diagnosis, proper treatment and necessary care.

Epilepsy Medical Research Advancement

The Foundation urges Congress to support a major expansion of epilepsy research within NINDS. These investments in our nation's health are paying dividends. In the last decade considerable progress has been made in identifying genes associated with epilepsy and in developing medications, devices and surgical treatments.

Nearly four years ago, participants in a historic, scientific conference predicted that prevention and a cure for epilepsy are only a generation away. The scientific community is now working on the next steps and ways to measure progress toward those goals. The conference, "Curing Epilepsy: Focus on the Future," was sponsored by NINDS, which is the primary federal sponsor of epilepsy medical research and the Epilepsy Foundation.

Together, the epilepsy community has developed a set of benchmarks and priorities to guide future research. They are specifically looking at how epilepsy begins, ways of identifying people at risk and how to develop treatments that will prevent epilepsy in those people, as well as continuing the search for new therapies, free of side effects, to prevent seizures.