The bill adds Section 320C to the Public Health Service Act, directing the HHS Secretary to create and maintain a National Plan for Epilepsy to prevent, diagnose, treat, and cure epilepsy. The statute tasks the Secretary with producing an integrated plan, coordinating research and services across federal agencies, soliciting public input, publishing progress assessments, and encouraging development of better treatments and care models.
This law also establishes a mandated Advisory Council with defined federal and non‑federal membership, requires periodic public reports to Congress, imposes interagency data‑sharing obligations, and includes a statutory sunset at the end of 2035. Notably, the bill contains no standalone authorization of appropriations, so implementation will depend on existing agency budgets and future appropriations decisions.
At a Glance
What It Does
Creates the 'National Plan for Epilepsy' inside the Public Health Service Act, requires the HHS Secretary to develop and update an integrated national strategy, conduct recurring assessments, and submit annual reports to Congress. It establishes an Advisory Council with specified federal and nonfederal membership, mandates quarterly public meetings and periodic convenings, and requires agencies to share epilepsy‑related data with HHS.
Who It Affects
HHS and its component agencies (NIH, CDC, FDA, CMS, HRSA), the Department of Defense and Department of Veterans Affairs, epilepsy researchers and clinical networks, patient advocacy groups, clinicians treating epilepsy, and people living with epilepsy and their caregivers. Appropriators and program offices will be central to whether the plan gets implemented at scale.
Why It Matters
The bill centralizes federal coordination on epilepsy—an area spread across research, public health, clinical care, and veterans' services—and creates recurring reporting and advisory structures that can shape research priorities, surveillance, and service delivery. However, because it does not appropriate funds, the law primarily creates obligations and expectations rather than new guaranteed funding.
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What This Bill Actually Does
The National Plan for Epilepsy Act inserts a new, discrete program into the Public Health Service Act directing the HHS Secretary to run a national initiative to address epilepsy across prevention, diagnosis, treatment, and cure. The Secretary must produce an integrated plan, provide information including an estimate of federal investment, coordinate activities across agencies, solicit public comment, and perform an annual assessment of progress.
The text frames these activities broadly, giving the Secretary latitude to determine additional appropriate steps.
A central operational feature is the Advisory Council on Epilepsy Research, Care, and Services. The Council mixes federal agency representatives (explicitly naming NIH, CDC, FDA, CMS, HRSA, DoD, and VA) with non‑federal experts: four people living with different types of epilepsy, two family caregivers, two clinicians supported by relevant societies (including at least one epileptologist/neurologist), two biomedical researchers, and three nonprofit leaders with demonstrated epilepsy experience.
The Council must meet at least quarterly, hold all meetings publicly, and convene broader federal/nonfederal gatherings biennially.The bill sets specific reporting cadences: the Secretary must produce an assessment of national progress not later than two years after enactment and annually thereafter; the Advisory Council must deliver its first evaluation and recommendations to the Secretary and Congress within 18 months and then every two years; and HHS must submit annual reports to Congress evaluating federally funded efforts and proposing priority actions and implementation steps. To support these reports, the statute requires agencies with epilepsy‑related data to share that data with HHS.Implementation is time‑limited: the entire section sunsets on December 31, 2035.
The statute neither creates an explicit new grant program nor authorizes specific appropriations, so agencies will need to use existing program funds or rely on future appropriations to carry out many of the activities described. The law also directs international coordination "to the degree possible," but leaves the mechanics of that engagement to the Secretary.
The Five Things You Need to Know
The bill adds Section 320C to the Public Health Service Act directing HHS to establish and maintain a 'National Plan for Epilepsy' focused on prevention, diagnosis, treatment, and cure.
It requires the Secretary to produce an initial national assessment within 2 years of enactment and then annually, and directs the Advisory Council to deliver its first report to Congress within 18 months and biennially thereafter.
The Advisory Council’s non‑Federal makeup is prescriptive: 4 people with different types of epilepsy, 2 family caregivers, 2 society‑supported clinicians (including at least 1 epileptologist or neurologist), 2 biomedical researchers, and 3 nonprofit representatives.
Agencies inside and outside HHS that hold epilepsy data must share that data with the Secretary to enable the mandated reporting; all Advisory Council meetings must be open to the public and held at least quarterly.
The new statutory authority sunsets on December 31, 2035, and the bill does not include an authorization of appropriations, meaning implementation depends on existing budgets and future appropriations.
Section-by-Section Breakdown
Every bill we cover gets an analysis of its key sections.
Short title
Designates the Act as the 'National Plan for Epilepsy Act.' This is a conventional labeling clause with no substantive effect beyond citation.
Findings
Provides congressional findings on epilepsy prevalence, outcomes, and economic impact. While non‑binding, these findings frame the bill's policy rationale and can shape how agencies prioritize components of the Plan (for example, emphasizing uncontrolled seizures, mortality risks, workforce participation, and economic burden).
Creates the National Plan and lists core activities
Establishes the National Plan and enumerates specific activities the Secretary must undertake: drafting an integrated plan, estimating federal investment, cross‑agency coordination, encouraging treatment development, improving early diagnosis and care coordination, reviewing impacts on patients and caregivers, and soliciting public input. Practically, this provision is a mandate to coordinate strategy and advocacy across research, public health, clinical care, and community services, but it leaves operational details (timelines for plan publication, performance metrics, enforcement tools) to HHS discretion.
Assessment schedule and required contents
Requires the Secretary to carry out an assessment of national progress not later than two years after enactment and annually thereafter. The assessment must recommend priority actions and describe steps taken or needed to implement them. This creates a recurring planning loop to align federal efforts, but the statute does not prescribe specific metrics or templates, which means agencies will need to negotiate measurement approaches internally or with stakeholders.
Composition, meetings, reporting duties of the Advisory Council
Mandates an Advisory Council with specified federal representatives and a defined slate of non‑federal members representing patients, caregivers, clinicians, researchers, and nonprofit organizations. The Council must meet quarterly, hold all meetings publicly, convene broader research meetings every two years, and report to the Secretary and Congress within 18 months and then every two years. The prescriptive membership structure ensures diverse voices but will require appointment processes and administrative support from HHS to keep meetings public and recurring.
Congressional reporting requirements and interagency data‑sharing
Directs the Secretary to submit annual reports to Congress evaluating federally funded epilepsy efforts, recommending priority actions, and describing implementation steps and progress. To support these reports, agencies 'within and outside' HHS that hold epilepsy data must share those data with the Secretary. This is a consequential requirement—data access is necessary for credible reporting—but the bill does not establish enforcement mechanisms for non‑compliance or address data standardization, privacy safeguards, or funding for analytic capacity.
Sunset
Terminates the new section on December 31, 2035. The fixed horizon implies a medium‑term federal commitment and creates a checkpoint for Congress to reassess whether to continue, modify, or fund the program beyond that date.
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Explore Healthcare in Codify Search →Who Benefits and Who Bears the Cost
Every bill creates winners and losers. Here's who stands to gain and who bears the cost.
Who Benefits
- People living with epilepsy (including those with uncontrolled seizures): The statute prioritizes earlier diagnosis, care coordination, reduced disparities, and prevention of epilepsy‑related mortality, which can guide federal programs and research toward interventions that directly affect patient outcomes.
- Family caregivers: The law explicitly requires review of caregivers’ needs and includes caregiver representation on the Advisory Council, increasing the likelihood that care coordination and support services will be considered in federal planning.
- Epilepsy researchers and clinical trial networks: A coordinated federal research strategy and recurring assessments can clarify research priorities, surface data gaps, and potentially align NIH, DoD, and VA research agendas—improving opportunities for collaborative grants and translational work.
- Nonprofit epilepsy organizations and advocacy groups: The bill requires solicitation of public comments and includes nonprofit representation on the Council, giving advocacy groups structured access to federal planning and priority‑setting.
- Veterans and active duty populations: Explicit inclusion of DoD and VA among agency representatives brings seizure care and epilepsy research within the scope of agencies that serve military and veteran populations.
Who Bears the Cost
- HHS and component agencies (NIH, CDC, FDA, CMS, HRSA): They must divert staff time and analytic capacity to produce the integrated plan, annual assessments, and reports, and to participate in interagency coordination and the Advisory Council.
- DoD and VA: These departments must participate in coordination and data‑sharing activities, which can require additional compliance, data‑curation, and privacy work within their health systems.
- Congressional appropriators and budget offices: Because the bill lacks a new appropriation, carryout of the Plan will either require reallocation within existing agency budgets or new funding requests, pressuring appropriators to fund implementation if they want the plan operational.
- Small epilepsy nonprofits and community groups: While given a formal seat at the table, these organizations may incur costs (staff time, travel, preparing submissions) to participate effectively in Council activities and public comment processes.
- Clinical providers and health systems: If the Plan leads to expanded surveillance or reporting expectations, clinicians and health systems may face new administrative burdens to supply standardized data to federal systems.
Key Issues
The Core Tension
The bill’s central dilemma is between centralized coordination and the realities of federal resource allocation: it creates an ambitious national strategy and reporting architecture for epilepsy but does not guarantee the funding or administrative authority needed to operationalize that strategy—leaving the choice of ambition versus implementability to agencies and appropriators.
Two practical frictions will shape how much the National Plan changes on‑the‑ground care. First, the statute creates duties (plans, assessments, council meetings, data exchanges) but contains no authorization of appropriation; HHS will need to use existing funds or seek new appropriations to staff coordination, analytics, and public engagement activities.
That gap means the Plan’s effectiveness depends heavily on internal agency priorities and Congress’s willingness to fund implementation.
Second, the bill mandates interagency data sharing and public reporting but leaves critical implementation details open. It does not specify common data standards, privacy and security safeguards for personally identifiable health information, or enforcement mechanisms if an agency resists data requests.
Similarly, the statute prescribes Council membership categories but not processes for selection, conflict‑of‑interest rules, or compensation, which could shape whose perspectives dominate and how quickly the Council can produce consensus recommendations. Finally, the sunset date (2035) creates a limited planning horizon that could disincentivize long‑term investments unless Congress commits to renewal.
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