National Plan for Epilepsy Act
- Bill Number
- H.R. 1189
- Origin Chamber
- House
- Congress
- 119th Congress, Session 1
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2025-02-11: Referred to the House Committee on Energy and Commerce.
- Last Updated
- 2026-07-10T08:06:18Z
AI-Generated Summary
Purpose of the Legislation
The National Plan for Epilepsy Act aims to create a coordinated national strategy to address epilepsy—a brain disorder causing recurring, unprovoked seizures—through improved prevention, diagnosis, treatment, and research efforts. It seeks to reduce the health, economic, and social burdens of epilepsy, which affects nearly 3 million adults and 456,000 children in the U.S., with over 30% of cases involving uncontrolled seizures and annual healthcare costs exceeding $54 billion.
Key Provisions
- National Plan for Epilepsy: The Secretary of Health and Human Services (HHS) must develop, maintain, and update an integrated plan to prevent, diagnose, treat, and cure epilepsy. This includes estimating federal funding levels, coordinating research and services across federal agencies, promoting new treatments and care strategies, enhancing early diagnosis and care coordination, assessing epilepsy's impacts on health and quality of life, gathering public input, conducting annual progress assessments, coordinating with international organizations, and other related activities.
- Annual Assessments: Starting two years after enactment, HHS must produce yearly reports evaluating national progress on epilepsy, including priority action recommendations and implementation steps.
- Advisory Council on Epilepsy Research, Care, and Services: HHS must establish this council to advise on epilepsy issues.
- Membership: Includes federal representatives from agencies like the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and others; plus non-federal experts such as people living with epilepsy, caregivers, healthcare providers (including at least one epileptologist or neurologist), researchers, and nonprofit representatives.
- Operations: Meets quarterly; holds biennial meetings with federal and non-federal groups; all meetings are public.
- Reporting: Submits biennial reports to HHS and Congress evaluating federal efforts, recommending priorities (e.g., better diagnosis, research innovation, reducing stigma, improving access to care, preventing deaths), and assessing the National Plan's implementation.
- Annual Reports to Congress: HHS must submit yearly reports 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.
- 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 (a key federal law governing public health programs) by adding a new Section 320C. It introduces a dedicated national framework for epilepsy, including mandatory coordination, an advisory council, and regular reporting—elements not previously specified for this condition. While it builds on existing federal health research authorities, it formalizes epilepsy as a priority area without altering broader laws on healthcare funding or agency operations.
Potential Impacts
- On Government Agencies: Enhances inter-agency collaboration (e.g., NIH, CDC, FDA, Department of Veterans Affairs) on epilepsy research and data sharing, potentially streamlining efforts but adding administrative tasks like assessments and reports. It may increase federal investment in epilepsy without specifying new funding amounts.
- On Citizens: Improves access to early diagnosis, specialized care, and treatments for the 1 in 26 Americans who may develop epilepsy, potentially reducing uncontrolled seizures (affecting over 30% of patients), early mortality risks (3 times higher than average), unemployment (32% of adults affected), poverty (53% of those with uncontrolled seizures in low-income households), and overall stigma/discrimination. Caregivers and families could see better support and reduced financial burdens.
- On International Relations: Encourages coordination with global organizations to align U.S. efforts with worldwide epilepsy initiatives, fostering knowledge exchange without binding commitments.
Main Stakeholders Affected
- Individuals with Epilepsy and Caregivers: Direct beneficiaries through improved care, research, and quality-of-life measures.
- Healthcare Providers and Researchers: Gain from coordinated federal support, data access, and innovation priorities, including epileptologists, neurologists, and biomedical experts.
- Nonprofit Organizations: Involved in advisory roles and public input, with opportunities to influence policy on patient services and awareness.
- Federal Agencies: HHS leads implementation, with NIH, CDC, FDA, and others required to participate in planning, data sharing, and reporting.
- Congress: Receives regular updates to oversee progress and funding.
- Broader Society: Taxpayers fund the efforts indirectly; low-income and underserved communities may benefit most from reduced disparities in care access.
Notable Legal, Constitutional, or Political Implications
- Legal: Strengthens public health mandates under the Public Health Service Act without creating new enforceable rights for individuals; the sunset clause provides a built-in review mechanism after 10 years, allowing future Congresses to extend or modify it. Data-sharing requirements must comply with privacy laws like HIPAA (Health Insurance Portability and Accountability Act, which protects health information).
- Constitutional: Aligns with Congress's authority to regulate public health and welfare; no apparent conflicts with federalism, as it focuses on national coordination without overriding state laws.
- Political: Bipartisan introduction (by Reps. Costa and Murphy) signals broad support for addressing a non-partisan health issue. It promotes equity by targeting disparities (e.g., in low-income groups) and could influence future health policy debates on chronic diseases, though its temporary nature limits long-term political commitments.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (83)
Rep. Murphy, Gregory F. [R-NC-3], Rep. Lieu, Ted [D-CA-36], Rep. Fitzpatrick, Brian K. [R-PA-1], Rep. Lawler, Michael [R-NY-17], Rep. Velázquez, Nydia M. [D-NY-7], Rep. Moulton, Seth [D-MA-6], Rep. Moolenaar, John R. [R-MI-2], Rep. Gillen, Laura [D-NY-4], Rep. Bilirakis, Gus M. [R-FL-12], Del. Norton, Eleanor Holmes [D-DC-At Large], Rep. Thanedar, Shri [D-MI-13], Rep. Dingell, Debbie [D-MI-6], Rep. Hoyer, Steny H. [D-MD-5], Rep. Cohen, Steve [D-TN-9], Rep. Cuellar, Henry [D-TX-28], Rep. Quigley, Mike [D-IL-5], Rep. Tlaib, Rashida [D-MI-12], Rep. Casten, Sean [D-IL-6], Rep. Landsman, Greg [D-OH-1], Rep. Sorensen, Eric [D-IL-17], Rep. LaHood, Darin [R-IL-16], Rep. Frankel, Lois [D-FL-22], Rep. McGarvey, Morgan [D-KY-3], Rep. Kiggans, Jennifer A. [R-VA-2], Rep. Bynum, Janelle S. [D-OR-5], Rep. Harshbarger, Diana [R-TN-1], Rep. Davids, Sharice [D-KS-3], Rep. Gottheimer, Josh [D-NJ-5], Rep. McBride, Sarah [D-DE-At Large], Rep. Carter, Earl L. "Buddy" [R-GA-1], Rep. Kean, Thomas H. [R-NJ-7], Rep. McClain Delaney, April [D-MD-6], Rep. Pocan, Mark [D-WI-2], Rep. Raskin, Jamie [D-MD-8], Rep. Simon, Lateefah [D-CA-12], Rep. Tonko, Paul [D-NY-20], Rep. Peters, Scott H. [D-CA-50], Rep. Trahan, Lori [D-MA-3], Rep. Matsui, Doris O. [D-CA-7], Rep. Soto, Darren [D-FL-9], Rep. Kennedy, Timothy M. [D-NY-26], Rep. Ivey, Glenn [D-MD-4], Rep. Scholten, Hillary J. [D-MI-3], Del. Moylan, James C. [R-GU-At Large], Rep. Davis, Danny K. [D-IL-7], Rep. Carson, André [D-IN-7], Rep. Letlow, Julia [R-LA-5], Rep. Vindman, Eugene Simon [D-VA-7], Rep. Mackenzie, Ryan [R-PA-7], Rep. Swalwell, Eric [D-CA-14] and 33 more
Recent Actions
- 2025-02-11: Referred to the House Committee on Energy and Commerce.
- 2025-02-11: Introduced in House
- 2025-02-11: Introduced in House
Bill Versions
- National Plan for Epilepsy Act — issued 2025-02-11 — PDF (10 pages)