The U.S. Department of Health and Human Services (HHS) recently announced changes to the workforce at the Centers for Disease Control and Prevention (CDC). These changes included the dismissal of nearly all the staff associated with the National Center for Chronic Disease Prevention and Health Promotion’s Epilepsy Program (CDC Epilepsy Program). While the future structure of the program is not clear, the American Epilepsy Society (AES) wants to highlight the important role the CDC Epilepsy Program plays in advancing care for people with epilepsy.
The CDC Epilepsy Program has been a vital resource for both people with epilepsy and epilepsy professionals for decades. The program’s elimination would have a significant negative impact on the health of people with epilepsy and important resources for surveillance and epidemiology will no longer be available. The program is designed to improve the quality of life of people with epilepsy through advocacy, community partnerships, research support and informational campaigns. In addition to the CDC providing important information about epilepsy through their website, informational activities and publications, the Epilepsy Program plays a vital role through the following contributions:
- Providing epidemiologic and surveillance data about people living with epilepsy. Only through work at the CDC Epilepsy Program do we know that 3.4 million people in the U.S. suffer from epilepsy.1
- Living Well with Epilepsy educational conferences, which support people living with epilepsy, their families, caregivers and health care professionals. These conferences provide a forum to share research and experience, leading to the development of programs and research initiatives that have improved the lives of people with epilepsy.
- Through the CDC Epilepsy Program, self-management in epilepsy became a reality. Self-management programs have helped patients to cope with their co-morbidities. Development of epilepsy self-management programs increase patient education, improve communication with providers, support medication adherence and promote daily living skills that reduce seizure risk. The Managing Epilepsy Well Network was established in 2007 as a CDC thematic research network and has had unprecedented success. The program supported many research studies that provided needed evidence that self-management is effective and needed in epilepsy. Nationwide those programs (e.g., HOBSCOTCH, UPLIFT, PACES, SMART) are now available and implemented in many centers around the country. Further work is necessary to establish the cost effectiveness of the programs and implement them in the health care environment.
- The program provides funding opportunities, including the 2021 Improving Epilepsy Education, Systems of Care, and Health Outcomes through National and Community Partnerships, a program that supported the American Epilepsy Society’s Documenting and Addressing Gaps in Epilepsy Care through Healthcare Provider Education and Training project. This five-year cooperative agreement is aimed at improving outcomes for underserved people with epilepsy by enhancing clinician education for both non-specialist healthcare providers and epilepsy specialists.
- The CDC Epilepsy Program was integrally involved in the 2012 Institute of Medicine Report Epilepsy Across the Spectrum and reported on progress made in 2022.2
- The Program leadership works on improving the quality of life of people with epilepsy through their advocacy, community partnerships, research support and informational campaigns.
AES is the only medical society in the United States focused solely on the study, prevention, treatment and cure of epilepsy. Our members around the country are dedicated to eradicating epilepsy and its consequences. The CDC Epilepsy Program is a critical partner in our work. We ask to continue the CDC Epilepsy Program for the benefit of people with epilepsy and the important work that is done in collaboration with the AES.
We are disappointed by the loss of dedicated CDC staff to the cause of epilepsy. At this time, it is critical that we acknowledge the progress that was made possible because of their work and that we all remain committed to advancing research and education as the foundation for improving the lives of people with epilepsy. We will continue to keep our members informed of the broader implications of these changes as more details become available.
REFERENCES
1. Zack MM, Kobau R. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy - United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66(31):821-825.
2. Centers for Disease Control and Prevention. CDC Activities Related to Recommendations of the 2012 IOM Report, Epilepsy Across the Spectrum, 2012–2022: Final Progress Report. US Dept of Health and Human Services; 2022.