CHICAGO ― To improve outcomes for the millions of Americans living with the condition, the American Epilepsy Society visited Capitol Hill on Tuesday, Feb. 11 to advocate for the creation of a National Plan for Epilepsy. More than 120 epilepsy-related organizations joined together to celebrate these efforts and urge members of Congress to co-sponsor and pass the bill.
National plans exist for other neurological conditions such as Alzheimer’s disease, autism, Parkinson’s disease, amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) despite epilepsy being one of the most common among them.
“AES is committed to helping lead the effort to advance a comprehensive national plan that reflects the needs of the entire epilepsy community,” said Howard Goodkin, MD, PhD, president of the AES and Shure Professor of Neurology and Pediatrics at the University of Virginia. “This collective initiative supported by more than 120 organizations is a significant step toward making lasting improvements to the care and quality of life for those affected by epilepsy.”
Dr. Goodkin and AES CEO Wendy-Jo Toyama, MBA, FASAE, CAE met with legislative staff to urge their participation in the Congressional Epilepsy Caucus, co-chaired by US Sens. Eric Schmitt (R-Mo.) and Amy Klobuchar (D-Minn.), and U.S. Reps. Jim Costa (D-Calif.) and Gregory Murphy, M.D. (R-N.C.). They met with staff from the offices of:
- US Sen. Tim Kaine (D-Va.)
- US Sen. Lisa Murkowski (R-Alaska)
- US Rep. Robin Kelly (D-Ill.)
- US Rep. Lauren Underwood (D-Ill.)
Discussions focused on the importance of having an official national strategy to address epilepsy and the components of the plan, including improving health outcomes, fostering research and innovation for treatments, and increasing access to care and public awareness. Legislative staff showed strong interest and shared their personal connections to epilepsy.
During their visit, AES leaders also attended an informational panel organized by the Congressional Epilepsy Caucus Co-chairs. The panel featured testimonies from people living with epilepsy, caregivers, and healthcare professionals, highlighting the everyday challenges faced by the epilepsy community.
“Currently, less than 0.5% of NIH funding goes to epilepsy research,” said Jack M. Parent, MD, AES first vice president and the William J. Herdman Professor of Neurology and co-division chief of epilepsy at the University of Michigan Medical School. “Although the National Plan does not have any funding attached to it, we are hopeful that it will lead to additional NIH funding for this important research. While there are concerns about potential federal budget cuts, the bipartisan nature of the proposed plan and its potential to improve lives of those in the epilepsy community makes it universally appealing.”
AES is part of the National Plan for Epilepsies Committee (NPEC), a committee composed of representatives from national provider and patient organizations (American Epilepsy Society, CURE Epilepsy, Epilepsies Action Network, Epilepsy Alliance America, Epilepsy Foundation of America, Epilepsy Leadership Council, International League Against Epilepsy-North America, National Association of Epilepsy Centers and the Rare Epilepsy Network). The committee’s work played a key role in the reintroduction of the National Plan for Epilepsy Act (H.R.1189) on Tuesday, Feb. 11, 2025 by the Congressional Epilepsy Caucus Co-chairs. The plan was first introduced to Congress in November 2024 but did not receive a vote.
For more information about the National Plan for Epilepsy and how to get involved, including contacting your elected officials to urge them to support and cosponsor the bill, visit epilepsy-national-plan.org.