The National Plan for Epilepsy Act (S. 494/H.R. 1189) was introduced by Senator Klobuchar and Representative Acosta on February 10, 2025. While 17 months might seem like a long time, this bill is in its infancy stage of the legislative process. If you’re old enough, you might remember School House Rock’s I’m Just A Bill that outlined the onerous progression to get a bill signed into law. The bill in that song was far ahead of The National Epilepsy Plan Act, as it had already passed both the House and Senate and was on its way to the President.
If passed by Congress and signed into law by the President, the National Plan for Epilepsy Act would direct the federal government to develop a National Epilepsy Plan to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. A National Plan would also bring increased attention, support, and resources to the entire epilepsy community.
Prospective legislation may seem far removed from the daily challenges facing people with epilepsy, especially those with uncontrollable seizures. Making time for advocacy is harder when you’re worried about job security because you have a seizure on the job, or how you’re going to get to the office or next doctor’s appointment, since you can’t drive. I navigated all those issues for decades, prior to getting my seizures under control through brain surgeries in 2014, experiences I describe in my memoir, Seizing Control. As distant as a National Plan for Epilepsy may seem from daily living, I believe it’s worth fighting for, primarily because other conditions with national plans—like Alzheimer’s and Parkinsons—got significantly more government funding for research and resources after their national plans were established.
The National Epilepsy Plan still must be approved by the Senate Committee on Health, Education, Labor and Pensions before the Senate even considers it. This bipartisan 23-member Committee will review S494 during its next hearing, on Wednesday, July 22nd, 10:00AM. Below is the list of Committee members. If you live in a state represented by these senators, reach out to them, and urge them to approve S494:
Alabama: Tommy Tubervile
Alaska: Lisa Murkowski
Colorado: John Hickenlooper
Connecticut: Chris Murphy
Delaware: Lisa Blunt Rochester
Florida: Ashley Moody
Indiana: Jim Banks
Kansas: Roger Marshall
Kentucky: Rand Paul
Louisiana: Bill Cassidy, Committee Chair
Maine: Susan Collins
Massachusetts: Ed Markey
Maryland: Angela Alsobrooks
Missouri: Josh Hawley
New Hampshire: Maggie Hassan
New Jersey: Andy Kim,
Ohio: John Husted
Oklahoma: Alan Armstrong
South Carolina: Tim Scott
Vermont: Bernie Sanders
Virginia: Tim Kaine
Washington: Patty Murray
Wisconsin: Tammy Baldwin
The good news is that Epilepsy Foundation of America set up a Voter Voice page, which makes it super-easy to reach out. Fill in your name, email, and home address, and this site will auto-generate a letter to your Senator and Representative, which you can personalize. Then hit the purple “review” button and the bottom, followed by the “send” button.
The bad news is that the Health Committee’s approval is only an initial step: Once approved the Senate must authorize the bill, and then the House must pass its version, H.R. 1189. If both versions are approved, the bill goes to the President, who would have to sign it into law. Long and onerous, yes and very possibly years before it passes, which isn’t guaranteed. But this process is the only one we’ve got, the Health Committee’s hearing is the next step to establishing a National Epilepsy Plan, and reaching out to its members is currently the best way to make sure our voices are heard. I suspect I might blog about S494 again.
There’s some urgency to pushing for this now. The bill’s cosponsor, Senator Amy Klobuchar is stepping down to run for Minnesota governor, which will force the epilepsy advocacy community to seek out a new Senate champion. Also, Congress is about to take its summer recess, so reaching out this month keeps the issue on their pre-vacation radar, which hopefully leads to a more expedient action step.
July is Disability Pride Month, established to honor the history, achievements, and experiences of the disability community, and celebrate the passage of the Americans with Disabilities Act, or ADA. If the Senate Health Committee approves S494 this week, we can add that small achievement of accomplishments to celebrate.
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