Sponsors (100)
Official title: To establish a national plan to coordinate research on epilepsy, and for other purposes.
Introduced February 11, 2025 by Jim Costa · Last progress February 11, 2025
The bill directs federal resources and coordination to improve diagnosis, care, and research for people with epilepsy—potentially raising health outcomes and accountability—while creating costs, administrative burdens, privacy risks, and uncertainty because of a limited sunset date.
People with epilepsy and their caregivers will get a coordinated national plan that expands prevention, earlier diagnosis, better care coordination, improved access to specialty care, and focused research toward better treatments and a cure.
Patients and taxpayers will gain clearer oversight because the bill requires federal coordination and annual assessments/reporting on federal investment and progress on epilepsy.
People with epilepsy, caregivers, clinicians, and researchers will have direct input into policy and research priorities through an expert Advisory Council that brings lived experience and scientific guidance to decisions.
Patients' health data and information may be shared across agencies under the plan, raising privacy and data‑protection risks for people with epilepsy and health systems if safeguards are not strong.
Taxpayers could face increased federal spending to implement the National Plan, which may require higher outlays or divert funding from other programs.
A 2035 sunset on the program creates uncertainty for long‑term research and services that need sustained, multi‑decade commitments, potentially disrupting continuity for researchers and patients.
Based on analysis of 3 sections of legislative text.
Requires HHS to create, maintain, and update a National Plan for Epilepsy, perform assessments, and establish an advisory council to coordinate research, care, and services.
Creates a federally led National Plan for Epilepsy run by the Department of Health and Human Services to prevent, diagnose, treat, and work toward curing epilepsy. It requires an initial assessment within two years and annual progress assessments, coordination across federal agencies and international bodies, public input, and development of priorities and implementation steps. Establishes an Advisory Council on Epilepsy Research, Care, and Services with specified federal and non‑federal membership (including people living with different types of epilepsy, caregivers, clinicians, and researchers), regular public meetings, and biennial stakeholder convenings to advise the Secretary and support plan updates and implementation.