On November 26th, Senator Eric Schmiit of Missouri issued a press release about the launch of the National Plan for Epilepsy Act. The bipartisan Act was developed by the House and Senate Epilepsy Caucuses, comprised of Senators Amy Klobuchar (D) and Eric Schmitt (R), and Representatives Jim Costa (D) and Greg Murphy (R). The Act aims to develop “safe and effective treatments, strategies, and other approaches to prevent, diagnose, treat, and cure epilepsy or to enhance functioning and improve quality of life for individuals with epilepsy and their caregivers.” Announced during Epilepsy Awareness Month, the Act was applauded by many in the epilepsy community. “The Epilepsy Foundation of America is beyond thrilled that the National Plan for Epilepsy has been introduced…. Through support and investment, a National Plan can begin to address disparities and work toward achieving health equity,” said Bernice Martin Lee, Epilepsy Foundation of America’s Chief Executive Officer.
Like Ms. Lee, I was pleased to read about this national epilepsy plan. I was diagnosed with epilepsy over fifty years ago, when practitioners had fewer resources and less information. I didn’t get my seizures under control for decades, a harrowing journey I outline in my memoir, Seizing Control. I was also excited to learn that we have House and Senate Congressional Caucuses dedicated to epilepsy—how fabulous! Apparently, the Senate Epilepsy Caucus was established by Senator Schmitt in February, who was motivated by his 25-year-old son’s epilepsy diagnosis. While the national plan is a great inroad toward raising epilepsy awareness, I think it’s even more important that the Epilepsy Caucuses leverage their power to impact funding allocations for epilepsy research. They could start by restoring the recent 40% cut to the Brain Research Through Advancing Innovative Neurotechnologies, a.k.a. the BRAIN Initiative.
Launched in 2013, the BRAIN Initiative aims to unravel the brain’s mysteries and develop new treatments for neurological and neuropsychiatric disorders, including epilepsy. Over the past decade, the Initiative has funded the creation of multiple tools to advance neuroscientific research, leading to new inventions, including neuro-prosthetics to restore someone’s ability to speak and a brain mapping device that increases brain surgery’s success rates, which I blogged about in June.
BRAIN Initiative funds were cut in May. Although President Biden’s 2024 budget request included the same $680 million funding request to the program’s 2023 levels, the request didn’t compensate for the $278 million funding loss from the 2024 21st Century Cures Act. Since Congress didn’t request additional funds to offset this decrease, some BRAIN Initiative grantees lost their funds, and research projects were brought to an abrupt halt.
The neuroscience community intends to ask Congress for increased BRAIN Initiative funding. A commentary co-authored by several neuroscientists published in the December Nature Neuroscience journal likened the sudden funding cut to “your football team being on the 15-yard line with 20 seconds to play and the coach deciding to bench the star quarterback…. “ The article also described additional transformative discoveries in other crucial areas, like a successful dementia treatment, as “tantalizingly close,” thanks to the BRAIN Initiative.
With the Republican-controlled House, Senate, and newly elected White House’s stated commitment to limited spending, the neuroscience community believes increased funding will be an uphill battle. Budget negotiations are likely to begin next month and despite the challenging funding landscape, the article’s co-author Cory Miller describes neuroscience research as a “bipartisan issue. Everyone knows someone affected by depression, Parkinson’s disease or some other neurological condition, and the Initiative has enjoyed support from representatives on both sides of the aisle…. It’s not red or blue. The brain doesn’t care.” He and his colleagues have organized meetings with local political representatives to discuss the importance of BRAIN Initiative funding.
The BRAIN Initiative is overseen by the National Institute of Health (NIH). In November, NIH director Monica Bertagnolli called the BRAIN Initiative a “high priority” during a House Committee hearing. When pressed about her commitment to the Initiative Ms. Bertagnolli said it would be “extremely unfortunate” to let the program end, but that the NIH is “going to have to make some incredibly difficult decisions.” Ms. Bertagnolli’s noncommittal statement leads me to believe that Cory Miller and his colleagues are wise to set up meetings with representatives.
Given that the House and Senate Epilepsy Caucuses, the National Plan for Epilepsy Act, and previous Brain Initiative support are all bipartisan, I hope that in addition to championing the new national epilepsy plan, the four Epilepsy Congressional Caucus members can successfully convince their colleagues to support increased BRAIN Initiative funding in 2025. Supporting neuroscientific research to find cures for conditions like epilepsy, Alzheimer’s, and dementia should not be a partisan issue.
Call to Action: Please contact Epilepsy Congressional Caucus members at the below links to thank them for promoting the National Plan for Epilepsy Act and to ask them to advocate for increasing BRAIN Initiative support to its previous levels.
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