S. 494 — National Plan for Epilepsy Act

This section states congressional findings on epilepsy, including that it affects nearly 3 million adults and 456,000 children in the United States; one in 26 people develops epilepsy in their lifetime; over 30% of individuals with epilepsy have uncontrolled seizures; such individuals face a three-times higher risk of early death and comprise 53% of those in households earning less than $25,000 annually; 32% of adults with epilepsy are unable to work; and annual health care costs exceed $54 billion.

This section establishes a National Plan for Epilepsy under a new section 320C of the Public Health Service Act, requiring the Secretary of Health and Human Services to coordinate federal efforts to prevent, diagnose, treat, and cure epilepsy through activities that include developing and updating an integrated national plan, estimating federal investments, coordinating research and services across agencies, promoting treatments and care coordination, conducting annual progress assessments, and soliciting public input. The section further requires the Secretary to conduct annual assessments of national progress against the epilepsy burden, beginning two years after enactment, and to submit annual reports to Congress evaluating federally funded epilepsy efforts and outcomes. Additionally, the section establishes an Advisory Council on Epilepsy Research, Care, and Services—comprising representatives from specified federal agencies (i.e., NIH, CMS, CDC, FDA, HRSA, DoD, and VA) and diverse non-federal experts (i.e., four individuals with epilepsy, two caregivers, two providers including an epileptologist or neurologist, two researchers, and three nonprofit representatives)—to meet quarterly, convene biennial public meetings with stakeholders beginning two years after enactment, and submit biennial reports to the Secretary and Congress beginning 18 months after enactment with evaluations and recommendations on epilepsy research, care, data, awareness, access, and the National Plan.