Sponsors (89)
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 centralizes federal efforts and patient-centered guidance to improve diagnosis, care, and outcomes for people with epilepsy but requires additional federal spending, creates administrative and privacy risks, and leaves long-term funding uncertain.
People with epilepsy and their caregivers will benefit from a coordinated National Plan that improves prevention, early diagnosis, treatment, care coordination, and access to specialized care, likely improving health outcomes and quality of life.
Taxpayers and the public will get better transparency on federal efforts through required federal coordination and annual assessments tracking investments and progress on epilepsy.
People with epilepsy, caregivers, clinicians, and researchers will have a formal voice in policy and research priorities via an expert Advisory Council that brings lived experience and scientific guidance into decision-making.
Taxpayers could face increased federal spending to implement the National Plan, which may require higher spending or reallocation from other programs.
Requirements for data sharing across agencies to support the plan could raise privacy and data-protection concerns for people with epilepsy and health providers if safeguards are insufficient.
Federal reporting and coordination mandates may create additional administrative burden for HHS and other agencies, potentially diverting staff time from frontline services and care delivery.
Based on analysis of 3 sections of legislative text.
Requires HHS to create and maintain a National Plan for Epilepsy, perform an initial assessment within two years and annual progress reports, and establish an advisory council to coordinate research, care, and services.
Creates a federally led National Plan for Epilepsy that directs the Department of Health and Human Services to develop, maintain, and periodically update an integrated national strategy to prevent, diagnose, treat, and cure epilepsy. Requires assessments, coordination across federal agencies and with international partners, public input, and an advisory council to advise the Secretary on research, care, and services. Requires an initial assessment within two years and annual assessments thereafter with priority recommendations and implementation steps; establishes an Advisory Council on Epilepsy Research, Care, and Services composed of federal officials and non‑federal experts, people living with epilepsy, caregivers, clinicians, and researchers, with public meetings and periodic broader convenings.