H.R. 1189: National Plan for Epilepsy Act

H.R. 1189 tells the Health and Human Services Secretary to create and keep updating a National Plan for Epilepsy. In plain English, that means one federal roadmap for research, diagnosis, treatment, care coordination, data collection, and public input.

The bill says that roadmap must estimate how much the federal government is already spending on epilepsy, line up work across agencies, encourage better treatments, improve early diagnosis, and look at how epilepsy affects both patients and caregivers. It also requires a yearly check on whether the country is making progress.

The bill’s findings explain why sponsors want that structure. According to the bill’s findings, nearly 3,000,000 adults and 456,000 children in the United States have epilepsy, more than 30% live with uncontrolled seizures, and health care costs exceed $54 billion a year. The findings also cite that 32% of adults with epilepsy are unable to work and that 53% of people with uncontrolled seizures live in households earning less than $25,000 a year.

H.R. 1189 also creates a formal advisory council. Federal agencies like NIH, CMS, CDC, FDA, HRSA, the Department of Defense, and the Department of Veterans Affairs would have seats, alongside people living with epilepsy, family caregivers, clinicians, researchers, and nonprofit groups.

That council would meet at least quarterly, keep its meetings open to the public, and send reports to Congress starting 18 months after enactment. HHS would also have to publish its first national progress assessment within 2 years and update it every year after that.

The bill does not create a direct cash benefit or set a new funding amount. Its main effect is to make the federal government coordinate epilepsy policy in public, on a timeline, through the end of 2035 unless Congress extends it.