Congress coordinates federal epilepsy research and care for 3 million Americans
H.R. 1189 — National Plan for Epilepsy Act · Filed by Jim Costa (D-CA) · 101 cosponsors · Introduced Feb 11, 2025 · Referred to committee
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What it does
This bill directs the Secretary of Health and Human Services to establish and maintain a National Plan for Epilepsy—a coordinated federal research and care initiative to prevent, diagnose, treat, and cure epilepsy. The bill creates an advisory council with federal officials, patients, caregivers, researchers, and nonprofit representatives; requires annual assessments and reports to Congress on progress; and mandates data-sharing across federal agencies to improve outcomes for the 3 million adults and 456,000 children with epilepsy in the U.S. The program sunsets in 2035.
Why we flagged it
The bill's operative mechanism is establishing a federal research coordination and advisory structure for epilepsy—a straightforward public health planning and accountability measure with no private carve-outs or immunity grants.
What the text implies
- The bill's sunset clause (Dec. 31, 2035) means the National Plan will terminate unless Congress reauthorizes it, creating a potential gap in federal epilepsy coordination if reauthorization is delayed or blocked.
- Data-sharing requirements across federal agencies may surface previously siloed information about epilepsy prevalence and outcomes, potentially revealing disparities in care access that could drive future policy demands.
- The advisory council's mandate to 'reduce stigma and discrimination' and 'eliminate access to care disparities' creates accountability pressure on federal agencies but does not itself fund or mandate specific remedies.
- The bill does not specify funding levels or appropriations, meaning the National Plan's effectiveness depends entirely on discretionary budget allocations that Congress must approve separately.
Section numbers refer to the bill text the analysis read — linked under Primary records below.
Who it affects
The bill establishes a public health coordination mechanism that benefits people with epilepsy—a condition affecting 3 million adults and 456,000 children, with over 30% experiencing uncontrolled seizures and elevated mortality risk. The advisory structure includes patient and caregiver voices, mandates transparency through public meetings and congressional reporting, and aims to reduce care disparities and improve outcomes without creating new restrictions on citizens' rights or access.
Who stands to gain
- pharmaceutical companies developing epilepsy treatments
- medical device manufacturers (seizure detection/management devices)
- research institutions receiving federal epilepsy research grants
- healthcare providers and epilepsy specialists (through expanded care coordination)
Named in the bill
Department of Health and Human Services, National Institutes of Health, Centers for Medicare & Medicaid Services, Centers for Disease Control and Prevention, Food and Drug Administration, Health Resources and Services Administration, Department of Defense, Department of Veterans Affairs, Advisory Council on Epilepsy Research, Care, and Services
Where it stands
101 cosponsors: 74 Democrats, 27 Republicans.
- Feb 11, 2025 — Introduced · Congress.gov: “Introduced in House”
- Feb 11, 2025 — Referred to House Committee on Energy and Commerce · Congress.gov: “Referred to the House Committee on Energy and Commerce”
Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.
Money around this bill
6 lobbying clients named this bill on 8 disclosure filings across 2 quarters, Dec 2025 to Jun 2026. Those filings disclosed $1,310,000 in lobbying spend. A filing names 5 bills on average, so that figure is what each filing reported, not a share belonging to this bill.
More lobbying clients named this bill than 82% of bills with at least one filing.
Jim Costa, the sponsor, reported $855,144 in PAC receipts in the 2026 cycle.
- Ucb, Inc. — $710,000 on 1 filing
- Lundbeck LLC — $350,000 on 2 filings
- Epilepsy Foundation — $150,000 on 1 filing
- Epilepsy Foundation of America — $60,000 on 2 filings
- Valley Children's Healthcare — $30,000 on 1 filing
Lobbying Disclosure Act filings through Jul 20, 2026. A filing shows who paid to lobby on a bill it names, not what changed.
How this was measured
Analysis — Quorum's AI read the bill text published by Congress.gov (8,007 characters) on Aug 20, 2026. Section numbers in the findings refer to that text, linked below; transparency and hidden-provision scores are compared against the median of 16,222 analysed bills.
Status and sponsors — Congress.gov's bill record — actions, committee referrals and cosponsors — loaded nightly. The timeline shows status changes, not every procedural action.
Money — Senate Lobbying Disclosure Act filings whose specific-issue field names this bill for quarters ending Dec 2025 to Jun 2026. A filing's amount is reported whole beside the median number of bills a filing names; it is never divided across them. PAC receipts are FEC-reported contributions to the sponsor's candidate committee in the 2026 cycle.
As of — lobbying records through Jul 20, 2026 · page rendered 2026-10-20.
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