National Plan for Epilepsy Act (S. 494): What It Means in Plain English

Illustration of a parent hugging a child, a doctor and caregiver holding a bill document, and the U.S. Capitol with epilepsy awareness icons in purple.

Epilepsy affects millions of people in the U.S., yet research, care, and data are still fragmented across many federal agencies.

The National Plan for Epilepsy Act (S. 494) is a bipartisan bill designed to change that by creating a coordinated national strategy to improve epilepsy research, diagnosis, treatment, and quality of life.

This page explains the bill in clear, everyday language, with a focus on what it could realistically mean for families living with epilepsy.

What It Does

Creates a national, coordinated plan to address epilepsy across research, healthcare, and public health.

Who Leads It

The U.S. Department of Health and Human Services (HHS), advised by a council that includes people with epilepsy and caregivers.

Why It Matters

It aims to reduce gaps in care, improve research coordination, and bring accountability to how epilepsy is addressed at the federal level.

Plain-English Summary of S. 494

The bill establishes a National Plan for Epilepsy, led by the Secretary of Health and Human Services.

The goal is to better prevent, diagnose, treat, and ultimately cure epilepsy by coordinating efforts that are currently scattered across the federal government.

Instead of each agency working in isolation, this plan requires them to work together under one shared strategy.

Under this bill, the federal government must:

Create and regularly update a national epilepsy plan
Coordinate epilepsy research and services across all federal agencies
Track and report how much the government spends on epilepsy
Improve early diagnosis and care coordination
Address the physical, mental, and social impact of epilepsy on families
Reduce stigma and improve quality of life
Include public input from the epilepsy community
Report progress to Congress every year

The plan requires ongoing assessments, not just a one-time report.

The government must regularly evaluate:

How effective current epilepsy programs are
Where gaps in care and research still exist
What priority actions should come next
Whether the national plan is actually improving outcomes

This creates a feedback loop: measure, report, adjust, repeat.

What This Means For Families

No. This bill does not immediately change medical treatment, prescriptions, or care guidelines.

Its focus is on improving coordination, research, and planning at the national level.

Any changes to day-to-day care would happen gradually over time as research, data, and systems improve.

That said, better coordination and data sharing can eventually lead to improvements in diagnosis, access to specialists, and research-driven care.

Not directly. The bill does not guarantee new funding on its own.

What it does do is create a national plan and accountability structure that can support future funding decisions. Many increases in disease-specific research funding begin with plans like this.

The bill does not guarantee new funding, but it does something important: it creates the structure and accountability needed to justify and direct future funding more effectively.

The bill requires federal agencies to work together instead of in silos.

Over time, this can improve early diagnosis, reduce fragmented care, and align research with real-world patient needs.

Better data sharing can also help identify gaps and improve access to specialized epilepsy care.

Yes. The bill explicitly calls out uncontrolled seizures and epilepsy-related deaths as priorities.

The Advisory Council must make recommendations to improve care, advance research, and prevent SUDEP.

This helps ensure these issues remain visible at the federal level.

Families and people living with epilepsy are built into the process.

The Advisory Council includes patients and caregivers, and all meetings are open to the public.

The bill also requires public input and consideration of recommendations from the epilepsy community.

Take Action: Ask Congress to Advance S. 494

If you want to support the National Plan for Epilepsy Act, the most effective steps are simple: contact your Representative and both Senators. Staff track messages by topic, and even short notes help show this matters to families.

Find My House Representative → Find My Senator →

Most offices prefer messages through their official contact form.

Use the buttons above to find your Representative and Senators.
Open their “Contact” page.
Choose “Health” (or similar), then paste the message below.
Tip: Include your zip code and that you’re a constituent (they will prioritize those).

Subject: Please support S. 494 – National Plan for Epilepsy Act

Hello,

I am a constituent and I’m writing to ask you to support and advance S. 494, the National Plan for Epilepsy Act. Epilepsy affects millions of Americans, and too many families still face uncontrolled seizures, fragmented care, and limited research progress.

This bill would create a coordinated national plan across federal agencies, strengthen accountability, and include people with epilepsy and caregivers in guiding priorities. Please support moving S. 494 forward and work to ensure strong implementation.

Thank you for your time.

[YOUR NAME]
[YOUR ZIP CODE]

Hi, my name is [YOUR NAME] and I’m a constituent from [CITY]. I’m calling to ask you to support and advance S. 494, the National Plan for Epilepsy Act. Epilepsy impacts families like mine, and we need better coordinate research and care. Please share this request with the health staffer. Thank you.

This page provides general information and example scripts. You are encouraged to use your own words if possible.

Who Is The Advisory Council

Federal Agencies

The council includes representatives from major federal agencies involved in epilepsy, including:

National Institutes of Health (NIH)
Centers for Disease Control and Prevention (CDC)
Food and Drug Administration (FDA)
Centers for Medicare & Medicaid Services (CMS)
Health Resources and Services Administration (HRSA)
Department of Defense
Department of Veterans Affairs

Non-federal Members

This aspect is critical. The council must also include:

Four people living with different types of epilepsy
Two family caregivers
Two clinicians (at least one epileptologist or neurologist)
Two epilepsy researchers
Three epilepsy nonprofit organizations

This structure ensures that lived experience informs federal decision-making, not just policy theory.

What The Advisory Council Does

The council meets regularly, holds public meetings, and issues reports to Congress every two years with recommendations to:

Improve diagnosis, treatment, and care coordination
Advance research and innovation
Improve epilepsy data collection and surveillance
Reduce stigma and discrimination
Expand access to expert care
Address health and financial disparities
Prevent SUDEP and epilepsy-related deaths
Evaluate whether the National Plan is actually working

What The Bill Does Not Do

It’s important to be clear about limits.

This bill does not:

Guarantee new research funding on its own
Immediately change insurance coverage or benefits
Create new treatment guidelines overnight
Solve all epilepsy-related challenges by itself

What it does do is create the framework and accountability needed for meaningful progress over time.

Timeline: What Happens and When

If the bill is passed and enacted:

Within 18 months
The Advisory Council submits its first major report to Congress.
Within 2 years
HHS completes the first national assessment of epilepsy burden and preparedness.
Every year after that
HHS reports progress to Congress and updates priorities.
Every 2 years
The Advisory Council submits updated recommendations.
December 31, 2035
The National Plan sunsets unless renewed by Congress.

Sources

National Plan for Epilepsy Act (S. 494), 119th Congress
Official bill text and legislative materials from Congress.gov

This page summarizes the bill for educational purposes and does not provide legal or medical advice.

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