National Plan for Epilepsy Act

The entire findings section (9 statistical findings about epilepsy prevalence, costs, and disparities) was removed.

A new Section 2 requires the Secretary of HHS to review existing Federal programs, activities, and strategic plans related to epilepsy research, prevention, early identification, diagnosis, and treatment, and to provide recommendations to Congress.

The formal National Plan for Epilepsy as a standing national project under the Public Health Service Act was eliminated, including all mandated activities such as establishing an integrated plan, coordinating research across Federal agencies, and encouraging development of treatments.

The cross-agency data sharing mandate requiring agencies within and outside HHS to share epilepsy-related data with the Secretary was removed.

The review must include consideration of evidence-based research findings, knowledge gaps, disparities, coordination gaps among Federal programs, level of Federal investment, opportunities to improve collaboration, prevent sudden unexpected death in epilepsy, improve surveillance, and support development of new treatments.

The Advisory Council on Epilepsy Research, Care, and Services was removed entirely, including its specific membership composition (Federal representatives from NIH, CMS, CDC, FDA, HRSA, DoD, VA; plus non-Federal members including 4 people living with epilepsy, 2 caregivers, 2 health care providers, 2 researchers, and 3 nonprofit representatives), quarterly meeting requirement, and biennial reporting obligation.

The annual Secretary report to Congress (evaluating all federally funded epilepsy efforts, recommending priority actions, and describing progress) was removed.

The annual assessment requirement (first due 2 years after enactment, then annually) was removed.

The sunset provision (section ceasing to be effective December 31, 2035) was removed.

A single report is due to the Senate HELP Committee and House Energy and Commerce Committee no later than 2 years after enactment, covering stakeholder input received, recommendations for improving coordination, and any recommended changes to Federal programs along with statutory or other barriers to implementation.