Sponsors (88)
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 and coordinates federal efforts to improve care, diagnosis, research, and outcomes for people with epilepsy—offering clearer accountability and patient representation—while increasing federal costs, administrative burden, data-privacy risks, and creating some uncertainty with a 2035 sunset.
People with epilepsy (and their caregivers/families) will get a coordinated national plan that improves prevention, earlier diagnosis, care coordination, access to specialized treatment, and organized efforts toward better treatments and a cure.
Taxpayers, advocates, and researchers will gain clearer visibility into federal investments and progress on epilepsy through federal coordination and annual assessments, improving transparency and accountability.
Patients, caregivers, clinicians, and researchers will have formal representation on an expert Advisory Council, bringing lived experience and scientific guidance into policy and research priorities.
Taxpayers and budget decision-makers may face increased federal spending to implement the National Plan, which could raise costs or require shifting funds from other programs.
Federal agencies, HHS staff, and health systems may experience increased administrative and reporting burdens to meet coordination and annual assessment requirements, potentially diverting staff time from frontline services.
Researchers and patients may face uncertainty because the plan sunsets in 2035, complicating long-term research programs and sustained services that need decade-plus commitment.
Based on analysis of 3 sections of legislative text.
Requires HHS to create and maintain a coordinated National Plan for Epilepsy, perform an initial and annual assessments, and establish an advisory council to guide research, care, and services.
Creates a federally led, coordinated "National Plan for Epilepsy" run by the HHS Secretary to prevent, diagnose, treat, and cure epilepsy. Requires an integrated, periodically updated national plan, annual progress assessments, public input, coordination across federal agencies and with international partners, and an Advisory Council on Epilepsy Research, Care, and Services to advise HHS. Requires an initial assessment within two years and annual assessments thereafter with prioritized recommendations and implementation steps; directs HHS to estimate federal investments in epilepsy activities, improve diagnosis and care coordination, encourage treatment development and quality-of-life strategies, and evaluate physical, mental, and social impacts on people with epilepsy and their caregivers.