For decades, the epilepsy community has depended on the Centers for Disease Control and Prevention (CDC) to fund research and patient-support efforts to help people living with this often disabling chronic condition.
But after sweeping federal budget cuts, organizations that help Americans with epilepsy are left with little certainty about the future.
“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, the executive director of the nonprofit advocacy group Epilepsy Alliance America.
For decades, the CDC epilepsy program has been one of hundreds of federal initiatives aimed at improving the health of Americans living with different chronic conditions, Gallipoli says. “There is no uncertainty about that,” she adds.
These funding cuts “will have repercussions for years and years to come,” she adds.
Cuts Are Part of a ‘Broader Restructuring,’ Government Spokesperson Says
In an emailed statement to Everyday Health, the press secretary for the Department of Health and Human Services (HHS), Vianca Rodríguez Feliciano, said, “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.” (The CDC is an operating division with the HHS.)
Rodríguez Feliciano said the Behavioral Risk Factor Surveillance System (BRFSS), a survey that collects data on a wide range of health behaviors and risk factors, including epilepsy, will continue. She gave no information regarding other programs that support people living with epilepsy.
Nearly 1 in 100 Americans Have Epilepsy
What Does the Now Defunded CDC Epilepsy Program Do?
The CDC’s Epilepsy Program has collected data and funded research aimed at finding new epilepsy treatments, as well as supporting programs providing services and education for people living with the condition.
“This is a really boots-on-the-ground thing that the CDC helps with,” says Beth Dean, the CEO of the nonprofit advocacy group CURE Epilepsy.
The 2024 budget for the CDC’s Epilepsy Program was $12.5 million, according to the Epilepsy Foundation, a nonprofit group. Another $740 million went to the Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative.
In 2021, the CDC provided the Epilepsy Foundation with $17.5 million, to be used over five years, for its projects to improve the quality of life and the quality of healthcare for people with epilepsy.
This federal funding supported first-aid training for parents, teachers, babysitters, and childcare professionals, as well as a special course teaching law enforcement officers how to recognize epileptic seizures.
“Without dedicated CDC staff to manage the Epilepsy Program, and if funding for the program is cut or eliminated, it will be very difficult for us to continue the work,” says Kaitlyn Gallagher, the public relations manager at the Epilepsy Foundation.
New Cuts Add to Previous Defunding Efforts
Even before the cuts to the Epilepsy Program, researchers working on federally funded initiatives have seen money dry up.
“The long-term implications of that is we are in danger of losing a generation of researchers,” Dean said. “It’s crushing.”
“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 says.
Communities of Support
Epilepsy Foundation
The Epilepsy Foundation works with a network of local affiliates to improve the lives of people with epilepsy by providing education, advocacy, research, direct services, research for new therapies, and creating communities. On their website, you can get information about their seizure first-aid training, including a course for law enforcement.
National Association of Epilepsy Centers (NAEC)
The NAEC provides resources for healthcare providers aimed at improving the care and treatment of people with epilepsy. It accredits epilepsy centers to ensure standards of care and publishes guidelines that determine what level of care people can receive at each center. Its website includes a full list of NAEC-accredited epilepsy centers across the country.
Epilepsy Alliance America
Epilepsy Alliance America was launched in 2018 and partners with local organizations to extend support on the ground. The alliance regularly hosts virtual meetups and has a subsidy program to help cover the cost of seizure ID products. They also host virtual first aid trainings and post information on where people can take in-person courses locally.
CURE Epilepsy
CURE Epilepsy has great resources for people who have recently been diagnosed with epilepsy. On its website, you can find patient stories, a calendar of epilepsy events, and information on a wide range of epilepsy therapies, from diet to surgery and neurostimulation devices.
American Epilepsy Society
The American Epilepsy Society is an organization for healthcare professionals that supports research and provides clinical guidance on best practices for epilepsy care. The society hosts an annual meeting and publishes news and alerts related to epilepsy drugs.