The 118 undersigned organizations – representing people living with epilepsy; caregivers and loved ones;
physicians, care providers, and epilepsy centers; epilepsy researchers; and others – are united in
opposition to recent actions by the Administration and Congress to cut vital federal epilepsy programs. As
the fourth most common neurological condition in the world and with nearly 3.4 million Americans living
with active epilepsy, we must be doing more – not less – to understand and treat epilepsy, develop cures,
improve the quality of life for people with epilepsy, and increase public awareness. We urge policymakers
to reverse these cuts and ensure that fundamental epilepsy public health and research programs are
maintained:
- Centers for Disease Control and Prevention (CDC)’s Epilepsy Program: At the beginning of April,
Reductions in Force (RIF) notices were issued to staff within the CDC’s National Center for Chronic
Disease Prevention and Health Promotion Epilepsy Program. The CDC Epilepsy Program is the only
public health program related explicitly to epilepsy with a national scope and community programs
that examine, test, and share strategies to improve the lives of people with epilepsy and their loved
ones. This critical program supports seizure recognition and first aid training, including for school
personnel; research to better understand the burden and risk factors of epilepsy; self-management
programs that improve the health and well-being of people with epilepsy; and Project ECHO so that
epilepsy specialists can help primary care doctors in rural communities.
- Congressionally Directed Medical Research Programs (CDMRP): In its final FY25 funding bill,
Congress cut appropriations for the Congressionally Directed Medical Research Program (CDMRP)
by 57%. This has completely eliminated specific funding for research related to Tuberous Sclerosis
Complex (TSC), post-traumatic epilepsy, and traumatic brain injury (TBI) and psychological health.
The elimination of this funding will have harmful impacts and set back innovation. TBI is a leading
and significant form of injury in service people, especially those in combat and training
environments, and it can lead to post-traumatic epilepsy for 50% of those with severe TBI. For many
years, these research programs have funded cutting-edge research to better understand and
address these neurologic conditions that can affect Service Members, Veterans, and their families.
These cuts must be restored to continue progress in epilepsy research.
- National Institutes of Health (NIH) and National Institute of Neurological Disorders and Stroke
(NINDS): Within NIH, several institutes fund epilepsy-related research which has helped better
understand, diagnose, and treat epilepsy—most notably, the National Institute of Neurological
Disorders and Stroke (NINDS). In the past several weeks, nearly 20% of the NINDS staff have been
impacted by RIFs, including people dedicated to epilepsy. Beyond a loss of expertise, we also
understand that there will be significant cuts to both funding opportunities and contracts. We are
extremely concerned about the impact of these cuts on current and future epilepsy research
activities and know they are impeding our shared goal of curing epilepsy.
- Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC): The
ACHDNC was also terminated in early April. For more than 20 years, this committee has governed
the Recommended Uniform Screening Panel (RUSP), which helps to ensure that newborns have
access to screening, diagnosis, and intervention for serious medical conditions. Some conditions
on the RUSP list can cause seizures and there are many other rare disorders that cause seizures
and epilepsy in infants and children that could be added. We are extremely concerned about the
impact the dissolution of the ACHDNC will have on infants, children, and their caregivers in the rare
epilepsy community. The dissolution of this committee completely terminates any possibility of
enhancement, expansion, and improvement of the US's ability to reduce preventable suffering and
deaths of infants. We urge that it be reinstated as soon as possible.
These actions will halt progress in preventing, diagnosing, treating, curing, and managing epilepsy. These
changes are happening at a time when many other significant threats are looming for people with epilepsy
and their families, including possible cuts to Medicaid and the possible dismantling of the U.S. Department
of Education. About 40% of people with epilepsy rely on Medicaid for access to healthcare and long-term
services and supports. Meanwhile, the U.S. Department of Education is vital to ensuring that the rights of
students with disabilities are protected and enforced.
Epilepsy looks different for each person. There are many types of seizures and syndromes, and epilepsy
affects people throughout their lifespan with varied causes and associated conditions. Most importantly,
delayed recognition and inadequate treatment increases a person’s risk of seizures, brain damage,
disability, and death. Epilepsy and/or seizures impose an annual economic healthcare burden of $54 billion
in the U.S. This is why epilepsy research and programs are so critical to the public health and economic
health of our nation.
The epilepsy community is devastated by these cuts and we need action now. We call on policymakers to
restore funding and staffing for these vital programs. Please contact Laura Weidner, Chief Advocacy and
Government Relations Officer for the Epilepsy Foundation at lweidner@efa.org or Johanna Gray, Deputy
Director of the National Association of Epilepsy Centers at jgray@artemispolicygroup.com with any
questions.