Briefing on Capitol Hill Urges More Government Action and Investment in the Epilepsies

WASHINGTON, D.C. — In cooperation with the Congressional Epilepsy Caucus, organizations including the Epilepsy Foundation, Epilepsies Action Network, CURE Epilepsy, Rare Epilepsy Network and DEE-P Connections hosted a briefing on Capitol Hill on May 17 to educate about the epilepsies and call for more government action and investment in the epilepsies. Congressional Epilepsy Caucus co-chairs Congressman Greg Murphy, M.D. (R-NC-3) and Jim Costa (D-CA-21) spoke about their personal connections to epilepsy and the importance of the caucus. 

“My son developed epilepsy when he was 14 and it took us months to get the right treatment for him,” said Congressman Murphy. “While he is now 28 and his seizures are controlled, there are still millions of Americans who continue to struggle with seizures. My sister is one of those people. I am committed to elevating the community’s voice in Washington to bring much-needed education and awareness about this very common yet stigmatized neurological condition.”

The community spoke with one voice, delivering a letter to Capitol Hill urging Congress to support the following epilepsy programs and research in the federal Fiscal Year (FY) 2024 budget:

• $10 million for the Pediatric-Onset Epilepsies Consortium jointly run by the National Institute of Neurological Disorders and Strokes (NINDS) and National Center for Advancing Translational Science (NCATS) at the National Institutes of Health 
• $13 million for the Centers for Disease Control & Prevention (CDC) Epilepsy Program
• $5 million for the National Neurological Conditions Surveillance System and a report on current gaps and ways in which to expand the system to include the epilepsies
• $164 million for the CDC Safe Motherhood and Infant Health Program to enable more states to participate in a registry that can track Sudden Unexpected Death in Epilepsy (SUDEP) up to the age of 20
• $12 million for the Epilepsy Research Program, $175 million for the Traumatic Brain Injury & Psychological Health Research Program and $10 million for the Tuberous Sclerosis Complex (TSC) Research Program all within the Congressionally Directed Medical Research Programs
• $23.585 million for the Veterans Affairs Epilepsy Centers of Excellence

“Epilepsy is a neurological condition that has been with us for a long time. We probably all know someone with epilepsy,” said Congressman Costa. “It’s critical that those living with epilepsy have a voice in Congress that advocates for their needs and supports funding for epilepsy research. I’m committed to working together with our colleagues in a bipartisan manner to improve access to care for all Americans with the epilepsies.” 

The briefing, which was moderated by Laura Lubbers, PhD, Chief Scientific Officer, CURE Epilepsy, also included a mother who lost her 21-year-old son to SUDEP; a mother who cares for her 10-year-old son who functions at the level of a 2-month old due to his rare, genetic and severe epilepsy SCN8A; and a college student who is thriving despite her seizures and has overcome the stigma that comes with living with epilepsy. Together, the speakers explained how profoundly and differently epilepsy impacts people and families and why increased funding from Congress can help close gaps in care. The annual total healthcare burden for people living with the epilepsies and/or seizures is at least $54 billion.

“Epilepsy is considered a spectrum disorder with different causes and seizure types,” said Archana Pasupuleti, M.D., pediatric neurology specialist at Children’s National Hospital. While we continue to make progress to understand the underlying causes of epilepsy, we still have 50% of patients for whom we don’t know the cause and at least 30% for whom treatment is ineffective. This is where funding for research and surveillance can really make a difference in how we treat epilepsy with the goal of helping to improve the quality of life for those living with it.”