National Plan for Epilepsy Act
- Bill Number
- S. 494
- Origin Chamber
- Senate
- Congress
- 119th Congress, Session 1
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2025-02-10: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
- Last Updated
- 2026-06-23T11:03:26Z
AI-Generated Summary
Purpose
The National Plan for Epilepsy Act aims to create a coordinated federal strategy to address epilepsy—a brain disorder causing recurring seizures—by focusing on prevention, early diagnosis, treatment, cure, and improving quality of life for affected individuals and their caregivers. It recognizes epilepsy's widespread impact, affecting nearly 3 million adults and 456,000 children in the U.S., with significant health, economic, and social burdens.
Key Provisions
- National Plan Development: The Secretary of Health and Human Services (HHS) must establish and periodically update an integrated national plan for epilepsy. This includes coordinating research and services across federal agencies, estimating federal funding levels, encouraging new treatments and strategies, improving early diagnosis and care coordination, assessing health impacts, soliciting public input, conducting annual progress assessments, and collaborating internationally where possible.
- Annual Assessments: Starting two years after enactment, HHS must produce yearly reports evaluating progress against epilepsy's growing burden, including priority action recommendations and implementation steps.
- Advisory Council on Epilepsy Research, Care, and Services: HHS must form a council with federal representatives (from agencies like NIH, CDC, FDA, and others) and diverse non-federal experts (e.g., people living with epilepsy, caregivers, healthcare providers, researchers, and nonprofit leaders). The council meets quarterly, holds biennial public meetings with experts, and submits reports every two years to HHS and Congress evaluating federal efforts, recommending improvements in areas like diagnosis, research, data systems, awareness, access to care, and reducing disparities or mortality.
- Annual Congressional Reports: HHS must submit yearly reports to Congress detailing federal epilepsy efforts, outcomes, priority actions based on assessments and council recommendations, and progress on the national plan.
- Data Sharing: Federal agencies inside and outside HHS must share epilepsy-related data to support reporting requirements.
- Sunset Clause: The program ends on December 31, 2035.
Significant Changes to Existing Law
This bill amends Part B of Title III of the Public Health Service Act (which deals with general health authorities and duties of the Public Health Service) by adding a new section (SEC. 320C) dedicated to epilepsy programs. Previously, epilepsy research and care were addressed through scattered federal initiatives (e.g., via NIH or CDC), but this introduces a centralized, mandatory national plan, advisory council, and regular reporting—formalizing coordination that was previously ad hoc.
Potential Impacts
- Government Agencies: Increases coordination among HHS components (e.g., NIH, CDC, FDA) and other entities (e.g., Department of Defense, Veterans Affairs), potentially streamlining funding and reducing duplication. It may require additional administrative resources for assessments, council operations, and data sharing.
- Citizens: Could lead to better access to early diagnosis, specialized care, and treatments for the approximately 3.5 million Americans with epilepsy, especially those with uncontrolled seizures (over 30% of cases). It addresses disparities, such as higher poverty rates among affected households and employment challenges (32% of adults unable to work), potentially improving health outcomes, reducing stigma, and lowering the $54 billion annual healthcare costs.
- International Relations: Encourages coordination with global bodies to align U.S. efforts with worldwide epilepsy initiatives, which could foster international research collaborations but has minimal direct impact on foreign policy.
Main Stakeholders Affected
- Individuals with Epilepsy and Caregivers: Primary beneficiaries through improved research, care coordination, and quality-of-life enhancements; includes diverse groups across ages, demographics, and epilepsy types (e.g., rare forms).
- Healthcare Providers: Epileptologists, neurologists, and other professionals gain from better data, training, and access to specialized care recommendations.
- Researchers and Nonprofits: Biomedical experts and epilepsy organizations (e.g., those focused on patient care or research) participate in the advisory council and benefit from prioritized funding and innovation.
- Federal Agencies: HHS leads implementation, with involvement from NIH (research), CDC (surveillance), FDA (treatments), and others for data and coordination.
- General Public and Policymakers: Indirectly affected through public awareness efforts and congressional oversight to reduce societal burdens like early mortality (3 times higher risk) and economic costs.
Notable Legal, Constitutional, or Political Implications
- Legal: Mandates data sharing among agencies, which could raise minor privacy concerns under laws like HIPAA (Health Insurance Portability and Accountability Act, which protects health information), but it aligns with existing federal coordination authorities. The sunset clause provides a built-in review mechanism to assess long-term effectiveness without permanent expansion.
- Constitutional: No significant issues; it falls under Congress's enumerated powers to regulate public health and spend for the general welfare (Article I, Section 8). Advisory council operations emphasize public meetings and input, supporting transparency under the First Amendment.
- Political: Bipartisan introduction (by senators from both parties) signals broad support for chronic disease initiatives. It promotes equity by addressing disparities (e.g., low-income households, underserved groups) without new entitlements, potentially serving as a model for other spectrum disorders like rare epilepsies. The temporary nature (until 2035) allows for future adjustments based on outcomes.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (25)
Sen. Klobuchar, Amy [D-MN], Sen. Boozman, John [R-AR], Sen. Hassan, Margaret Wood [D-NH], Sen. Husted, Jon [R-OH], Sen. Markey, Edward J. [D-MA], Sen. Booker, Cory A. [D-NJ], Sen. Ernst, Joni [R-IA], Sen. Padilla, Alex [D-CA], Sen. Capito, Shelley Moore [R-WV], Sen. Shaheen, Jeanne [D-NH], Sen. Coons, Christopher A. [D-DE], Sen. Warnock, Raphael G. [D-GA], Sen. Kaine, Tim [D-VA], Sen. Warner, Mark R. [D-VA], Sen. Alsobrooks, Angela D. [D-MD], Sen. Heinrich, Martin [D-NM], Sen. Schiff, Adam B. [D-CA], Sen. Gillibrand, Kirsten E. [D-NY], Sen. Collins, Susan M. [R-ME], Sen. Justice, James C. [R-WV], Sen. Blunt Rochester, Lisa [D-DE], Sen. Duckworth, Tammy [D-IL], Sen. Kennedy, John [R-LA], Sen. Marshall, Roger [R-KS], Sen. Durbin, Richard J. [D-IL]
Recent Actions
- 2025-02-10: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
- 2025-02-10: Introduced in Senate
Bill Versions
- National Plan for Epilepsy Act — issued 2025-02-10 — PDF (10 pages)