H.R. 1189 — National Plan for Epilepsy Act

This section establishes the short title of the Act as the “National Plan for Epilepsy Act.”

This section sets forth congressional findings on epilepsy, including that the disorder affects nearly 3,000,000 adults and 456,000 children in the United States, that 1 in 26 people will develop epilepsy in their lifetime, that over 30 percent of people with epilepsy live with uncontrolled seizures, and that annual health care costs associated with epilepsy and seizures exceed $54 billion.

This section establishes a National Plan for Epilepsy within Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.) to prevent, diagnose, treat, and cure epilepsy. It directs the Secretary of Health and Human Services to establish, maintain, and periodically update an integrated national plan; provide information on the level of Federal investment in epilepsy; coordinate epilepsy-related research and services across Federal agencies; encourage development of safe and effective treatments and other approaches; improve early diagnosis and coordination of care; review the physical, mental, and social effects of epilepsy on individuals and caregivers; solicit public comments; conduct an annual assessment of progress; and coordinate with international bodies, to the extent possible. This section requires the Secretary to assess the Nation’s progress in preparing for and responding to epilepsy not later than 2 years after enactment and annually thereafter. The assessment must include recommendations for priority actions, a description of steps taken or needed to implement those recommendations, and other items the Secretary determines appropriate. This section establishes and maintains an Advisory Council on Epilepsy Research, Care, and Services to advise the Secretary on epilepsy-related issues. The council must include Federal representatives from the National Institutes of Health, Centers for Medicare & Medicaid Services, Centers for Disease Control and Prevention, Food and Drug Administration, Health Resources and Services Administration, Department of Defense, and Department of Veterans Affairs, as well as 13 non-Federal members: 4 individuals living with different types of epilepsy, 2 family caregivers, 2 licensed or accredited health care providers, 2 biomedical researchers, and 3 representatives from separate nonprofit organizations connected with epilepsy. The council must meet at least quarterly, convene a broader meeting of Federal and non-Federal organizations on epilepsy research not later than 2 years after enactment and every 2 years thereafter, and hold all meetings in public. This section requires the Advisory Council to submit a report to the Secretary and Congress not later than 18 months after enactment and every 2 years thereafter. The report must evaluate all federally funded epilepsy efforts and outcomes, recommend priority actions to better coordinate and support Federal programs, and make recommendations to improve diagnosis, treatment, research, data systems, public awareness, access to specialized care, equity, prevention of sudden unexpected death in epilepsy, financial impacts on families, healthy behaviors, and implementation of the National Plan. It also requires the Secretary to submit annual reports to Congress evaluating federally funded epilepsy research, prevention, diagnosis, treatment, clinical care, and institutional-, home-, and community-based programs, and their outcomes.