Key Takeaways:
- As the National Plan for Epilepsy Act advances in Congress, including consideration at a House subcommittee hearing last week, nine leading epilepsy organizations are united around community-developed priorities for a national plan.
- The Epilepsy Community Consensus Priorities—developed by the consortium with input from the greater epilepsy community—address community coordination and advocacy, research and data, support and quality of life, public awareness and stigma, and specialized care and prevention.
- Shaped by people with epilepsy, caregivers, clinicians, researchers and advocates, the priorities accompany the consortium’s call for passage of the National Plan for Epilepsy Act.
WASHINGTON ― Nine epilepsy organizations, working together as the National Plan for Epilepsy Committee (NPEC), have united behind five shared priorities they say are essential to the success of a national plan for epilepsy.
NPEC’s five Epilepsy Community Consensus Priorities, published in Epilepsy Currents, outline a clear, shared path forward for the National Plan for Epilepsy. The priorities envision practical changes in everyday life so that when a parent calls for emergency help during a child’s seizure, first responders know what to do; when a student with epilepsy goes to college, professors, housing officials and peers offer understanding and support; and when a family seeks a diagnosis, insurance covers specialists and genetic testing. For someone whose seizures persist despite medication, stronger research efforts could bring new treatment options closer.
NPEC includes American Epilepsy Society, CURE Epilepsy, Epilepsies Action Network, Epilepsy Alliance America, Epilepsy Foundation of America, Epilepsy Leadership Council, International League Against Epilepsy—North America, National Association of Epilepsy Centers and Rare Epilepsy Network. The priorities reflect input from people with epilepsy, caregivers, clinicians, advocates and nonprofit leaders.
NPEC developed the priorities through topic-specific work groups of experts and people with lived experience whose recommendations were refined over several months and strengthened through a broad public comment process. The Consensus Priorities are intended to inform both legislative and non-legislative action to advance the National Plan for Epilepsy and call for: coordinated epilepsy community and advocacy efforts; stronger research and data collection; better patient and caregiver support and quality of life; greater public awareness and reduced stigma; and expanded specialized care and prevention.
NPEC—alongside more than 170 other organizations—is urging Congress to pass the National Plan for Epilepsy Act by the end of the year. A modified version of S. 494 passed the Senate by unanimous consent in August and the House Energy and Commerce Committee’s Subcommittee on Health discussed H.R. 1189 at its Sept. 15 hearing.
“We’ve arrived at a defining moment for the epilepsy community, and it didn’t happen by chance,” said Gabi Conecker, MPH, co-founder and executive director of Decoding Developmental Epilepsies, who testified at the House hearing. “Families, advocates, researchers, and clinicians with diverse needs and experiences have come together around a shared purpose of securing and building a National Plan for Epilepsy. That unity means that when this legislation passes, we’ll be ready to turn its promise into action and deliver lasting change for people living with epilepsy and their families.”
The following NPEC Epilepsy Community Consensus Priorities have been endorsed by 32 other organizations.
- Increasing coordination of epilepsy community activities and advocacy. Build on existing efforts to work more closely together on advocacy, awareness and community activities.
- Accelerating and integrating research, surveillance and data. Increase funding and coordination for research, public health tracking and data collection to advance cures and treatments that change the course of epilepsy and related conditions, guided by the community’s needs.
- Strengthening support and improving quality of life for people with epilepsy and caregivers. Improve systems and settings so people can achieve their goals, including through access to high-quality health care, meaningful work, economic opportunities and supportive education.
- Enhancing public awareness and education. Develop a unified national approach to dispel myths, reduce stigma and promote understanding, inclusion and respect for people with epilepsy.
- Enhancing clinical care and prevention. Ensure access to comprehensive, specialized care from professionals across disciplines that addresses the whole person throughout life, and expand access to screening and interventions to prevent epilepsy in people at high risk.
Passage of the National Plan for Epilepsy Act would help encourage more federal focus on epilepsy, providing transformative resources for everyone living with, affected by or working with epilepsy, the fourth most common neurological disorder. Approximately 3.4 million Americans are living with epilepsy, and one in 26 will develop the condition during their lifetime. About one-third of people living with epilepsy have drug-resistant epilepsy, meaning their seizures cannot be controlled by available medications. Epilepsy can be fatal, with sudden unexpected death in epilepsy (SUDEP) affecting approximately 1 in 1,000 people with epilepsy every year; the risk rises dramatically to 1 in 150 when seizures are not controlled.
To learn more about NPEC and the Epilepsy Community Consensus Priorities, visit www.epilepsy-national-plan.org. To contact your members of Congress to urge passage of the National Plan for Epilepsy Act, use this form: bit.ly/NP4E