The Future of the CDC Epilepsy Program is in Jeopardy
EPILEPSY is not a red issue or a blue issue. It is a PURPLE Issue.
Almost 3 million adults in the United States have epilepsy.
About 456,000 U.S. children 17 and younger have active epilepsy.
These are your family members, your neighbors and your colleagues.
This is YOU.
What Happened?
On April 1, 2025, Reductions in Force (RIF) Notices were issued to staff members in the CDC’s National Center for Chronic Disease Prevention and Health Promotion Epilepsy Program. The Epilepsy Community has counted on the work, the voice and the programs of the CDC Epilepsy Program for decades.
The future of the CDC Epilepsy Program is unclear. These staff reductions will halt progress in preventing, treating and managing epilepsy.
Urge your members of Congress to take action and reverse these CDC Epilepsy Program staff cuts and protect funding for the program moving forward.
CDC Epilepsy Program: Achievements and Information
The Epilepsy Community has counted on the work, the voice and the programs of the CDC Epilepsy Program for decades.
Below are just some of the important studies and programs of the CDC that helping to provide hope and possibilities for individuals and families affected by epilepsy.
CDC Cooperative Agreement (DP23-007)
Epilepsy Alliance America is the recipient of a 5-year non-research cooperative agreement (DP23-007) focused on self-management capacity building in the healthcare setting.
We are managing a Learning Collaborative for CDC Component 1 grantees to identify best practices for health care providers / epilepsy centers to use to systematically encourage individuals to participate in self-management programs.
You can read the public report describing awardee outcomes related to public education, partnerships, systems of care and self-management capacity building in healthcare settings here. CDC Epilepsy Final Evaluation Report.
New CDC Dashboard provides Important Epilepsy Data
CDC recently launched a new dashboard dedicated to epilepsy health data. The Data and Statistics on Adults with Active Epilepsy dashboard compiles national data on epilepsy in one easy-to-access location. Users can explore insights on U.S. adults with active epilepsy, including:
• Sociodemographic characteristics.
• Self-rated health and disability status.
• Epilepsy-related variables, such as taking anti-seizure medication and other factors.
Mortality disparities associated with epilepsy in the U.S., 2011-2021
CDC published research in the June edition of Epilepsy & Behavior on epilepsy mortality rates over a 10-year period, identifying an increased rate of death for people with epilepsy from 2011 to 2021. Key findings include:
Epilepsy was linked to the deaths of 43,231 adults in the United States over the decade, 2011-2021. Among those deaths, close to 39% were reported with epilepsy as the underlying cause of death, and 61% were reported with epilepsy as a contributing factor. The U.S. mortality rate for epilepsy rose sharply from 2011 to 2021, particularly from 2019 to 2020 and into 2021. The rate of deaths with epilepsy as an underlying cause increased 84% (from 2.9 per million to 6.4 per million population) during the decade, while the rate with epilepsy as a contributing cause of death jumped 144%(from 3.3 per million to 11 per million population) over the same period.
Some groups of the U.S. population experienced higher epilepsy-related mortality rates including:
- Older adults
- Males
- Non-Hispanic Black or American Indian/Alaska Native adults
- Those living in the West and Midwest
- Those living in rural counties
The reasons for the reported increases in U.S. epilepsy mortality rates during 2011-2021 are not fully understood. This could be a function of several factors, including general population growth and recent efforts within the epilepsy field to improve reporting by more accurately identifying epilepsy cases during death investigations and certifications.
Seizure Control varies by family income
CDC recently published research in the August edition of Epilepsy & Behavior analyzing data from the National Health Interview Survey in 2021 and 2022. Some of the key findings include:
Among the estimated 2.9 million U.S. adults living with active epilepsy in 2021 and 2022, about half of them had at least one seizure in the past 12 months.
Adults with epilepsy who live in poverty are far less likely to achieve seizure control, compared to those with higher incomes.
Only 35% of adults in poverty who take anti-seizure medication have seizure control, compared to 58% of those with higher incomes.
1 in 5 adults with epilepsy have a household income below the poverty level. This highlights the critical need for improved access to services like medication assistance programs and free epilepsy self-management support.
The article highlights opportunities for interventions to support adults with uncontrolled seizures across all income categories and to address unmet needs of people with epilepsy at the lowest income levels. It also offers recommendations for improving health care provider awareness of treatment guidelines and enhancing access to specialty care and self-management support.
Guidance for School Nurses
CDC supports valuable training, guidance, and resources to help school nurses care for students with epilepsy. These offerings include tailored training on seizure recognition and response, guidance on developing individualized health and seizure action plans, and tools for managing epilepsy in a school setting. The National Association of School Nurses (NASN) also offers toolkits focused on supporting students and families in the transition from pediatric to adult health care, and on stigma and Sudden Unexpected Death in Epilepsy (SUDEP) through CDC funding.
NASN also recently updated the School Nursing Evidence-based Clinical Practice Guideline: Students with Seizures and Epilepsy to assist school nurses in providing high quality care to students with seizure disorders, based on the highest quality evidence available.
By equipping school nurses with the knowledge and skills they need, CDC helps ensure students with epilepsy receive safe, effective care at school. For a complete list of CDC’s offerings for school nurses, visit
https://www.cdc.gov/epilepsy/php/guidance-for-schools/index.html.
Importance of Self-Management
Self-management is essential for people living with epilepsy to reduce the risk of seizures and co-occurring conditions, like depression. These skills also help improve people’s overall quality of life. Taking steps like tracking seizures, adhering to medication schedules, managing stress, staying connected with loved ones, and maintaining healthy habits can make a significant difference.
Recent CDC research found roughly half of adults with active epilepsy continue to experience uncontrolled seizures, highlighting the need for better self-management practices. By actively managing their condition, individuals with epilepsy can work towards better seizure control and improved well-being. For tips on how to live well with epilepsy, including details on self-management programs that are proven to help individuals better manage their condition, visit https://www.cdc.gov/epilepsy/living-with/index.html.