For decades, federal health agencies have provided critical funding for epilepsy research, patient services, and public awareness initiatives. These programs have not only advanced scientific understanding but also improved the lives of millions affected by the neurological disorder. However, sweeping government budget cuts announced this year have cast a shadow over the future of these efforts, raising alarm among researchers, advocacy groups, and patient families alike.
What’s at Stake
- Epilepsy is one of the most common neurological conditions in the United States, affecting nearly 1 in every 100 Americans. Despite the availability of treatment options, about one-third of those living with epilepsy continue to experience seizures that are resistant to current therapies. This has made ongoing research essential in the search for new treatments and better management strategies.
- Advocacy organizations have voiced serious concerns over the potential consequences of these funding reductions. Many worry that cutting back on federally supported programs could stall medical breakthroughs, limit patient access to resources, and reduce the visibility of public education campaigns that help fight stigma and misinformation.
- A government spokesperson acknowledged the changes but explained that they are part of a broader restructuring process designed to realign public health spending with shifting national priorities. According to the spokesperson, the goal is to optimize the use of limited resources to address the most urgent health challenges facing the population as a whole.
As details remain unclear, the epilepsy community is left in a state of uncertainty, hoping that policymakers will consider the long-term impact of these cuts on millions who depend on continued research and support.
The Future of Epilepsy Support and Research in Limbo
For decades, the epilepsy community in the United States has relied on federally funded programs for research, advocacy, education, and patient support. The Centers for Disease Control and Prevention (CDC), through its dedicated Epilepsy Program, has played a central role in these efforts. However, sweeping budget cuts announced earlier this year have placed these critical resources in jeopardy, leaving advocacy organizations and families living with epilepsy uncertain about what lies ahead.
A Legacy of Support Under Threat
The CDC Epilepsy Program has historically been one of several federally funded initiatives aimed at improving healthcare outcomes for millions of Americans living with chronic neurological conditions. The program has been instrumental in collecting national data, supporting community education, funding research for better treatment options, and improving healthcare provider training.
Yet all of these efforts have been thrown into question following recent announcements of federal budget restructuring. Advocacy groups report that entire teams dedicated to epilepsy at the CDC have already been disbanded.
“What we do know is that all of the people who work in epilepsy at the CDC, all of their positions were eliminated as of last week, and there has been absolutely no direction or communication to us as to what we should do,” says Lisa Gallipoli, executive director of Epilepsy Alliance America.
Gallipoli emphasizes that the ripple effects of these cuts will not be temporary. “There is no uncertainty about that,” she adds. “Epilepsy Program funding cuts will have repercussions for years and years to come.”
Government Justifies Cuts as ‘Broader Restructuring’
The Department of Health and Human Services (HHS), the parent agency of the CDC, confirmed the changes in a statement to Everyday Health.
“The Epilepsy Program, previously part of the Division of Population Health, is undergoing changes as part of a broader restructuring to ensure resources are aligned with the CDC’s highest public health priorities,” said Vianca Rodríguez Feliciano, press secretary for HHS.
While she noted that the Behavioral Risk Factor Surveillance System (BRFSS) would continue collecting health data, including information related to epilepsy, Rodríguez Feliciano provided no specifics about the continuation of other epilepsy-related programs.
In late March, HHS announced plans to cut nearly one-quarter of its full-time workforce. This move, officials say, is part of an effort to “optimize” federal resources in response to changing public health needs.
The Widespread Impact on Millions of Americans
Epilepsy affects approximately 2.9 million adults and nearly half a million children in the United States. It is a chronic condition characterized by recurrent seizures caused by abnormal electrical activity in the brain. For roughly one-third of these individuals, existing medications fail to control their seizures, making ongoing research and patient support efforts all the more critical.
“Epilepsy doesn’t just impact the person who has it. It touches families, workplaces, schools, and entire communities,” says Beth Dean, CEO of CURE Epilepsy, a nonprofit organization dedicated to finding a cure. “The CDC’s work has helped make people safer through education and training. Losing that is a real blow.”
What the CDC Epilepsy Program Has Accomplished
The CDC’s Epilepsy Program has provided millions in funding to support research and community initiatives. In 2024 alone, its budget was $11.5 million, according to the Epilepsy Foundation. This funding has enabled a range of programs, including:
- First-Aid Training: Courses designed for parents, teachers, childcare providers, and law enforcement officers to help them recognize and respond to seizures.
- Patient Education: Resources and training for people living with epilepsy to better manage their condition.
- Healthcare Provider Support: Training for non-specialist healthcare providers to improve care for epilepsy patients.
- Community Outreach: Support hotlines and local programs that connect patients and families with resources.
The program has also contributed to research efforts aimed at developing new treatments and understanding the broader impacts of epilepsy on public health.
Additional Programs Facing Cuts
The CDC’s epilepsy initiatives are not the only programs under threat. Funding for the Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative, which received $740 million in federal funding, has also been reduced. A bill passed in March slashed that funding by $81 million—about 20 percent.
“This is a really boots-on-the-ground thing that the CDC helps with,” Dean explains. “Without these resources, the risk is not only to current patients but to the future of epilepsy research itself.”
Further compounding the challenge, the National Institutes of Health (NIH) has introduced a cap on indirect research costs, limiting support for administrative expenses, lab maintenance, and research infrastructure. This move, Dean warns, could discourage young scientists from entering the field.
“The long-term implications of that is we are in danger of losing a generation of researchers,” she said. “It’s crushing.”
The Military Connection: A Forgotten Population?
Another area seeing significant cuts is the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP), which funds research into conditions affecting military personnel, including traumatic brain injury (TBI) and epilepsy.
“Epilepsy and TBI were eliminated from that. That research was looking at soldiers who got head wounds in service, and about 40 percent of them developed epilepsy,” Dean explains.
For veterans and active-duty service members dealing with epilepsy as a result of combat-related injuries, the loss of dedicated research funding represents yet another gap in care.
Advocacy and Community Support Remain Strong
While federal funding is in question, nonprofit organizations continue to provide critical support to people living with epilepsy:
- Epilepsy Foundation: Through its network of local affiliates, the foundation offers education, advocacy, and direct services, including seizure first-aid training and community outreach programs.
- National Association of Epilepsy Centers (NAEC): This organization accredits epilepsy treatment centers and provides clinical guidelines to ensure quality care across the country.
- Epilepsy Alliance America: Launched in 2018, the alliance partners with local organizations to offer virtual meetups, first-aid training, and financial assistance for seizure ID products.
- CURE Epilepsy: Focused on research, CURE Epilepsy provides educational resources, patient stories, and information on emerging therapies ranging from medication to surgical options.
- American Epilepsy Society: This professional organization supports healthcare providers through clinical research, education, and best practice guidelines.
A Call for Clarity and Action
While advocacy organizations work to fill the gaps, they stress that their efforts alone cannot replace the scale and impact of federally funded programs.
“We need clear communication and a commitment from policymakers that epilepsy will not be forgotten,” Gallipoli emphasizes. “The people we serve are already navigating one of the most challenging neurological conditions. They shouldn’t have to fight for the resources they need to live safely and with dignity.”
As the federal government moves forward with its restructuring plans, the epilepsy community continues to call for transparency, sustained investment, and a renewed focus on improving the lives of millions of Americans affected by this complex disorder.
Recommended For You
