Epilepsy groups, lawmakers demand better education, funding and government action for the condition

A whole host of epilepsy organizations and several members of Congress have come together to call for more governmental help to treat and educate those with epilepsy. 

The groups, which include the Epilepsy Foundation, the Epilepsies Action Network, CURE Epilepsy, the Rare Epilepsy Network and DEE-P Connections, along with Reps. Greg Murphy, M.D., R-North Carolina, and Jim Costa, D-California, took to Capitol Hill this month to speak about their personal connections to epilepsy.

“My son developed epilepsy when he was 14, and it took us months to get the right treatment for him,” said Murphy in a press release. “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,” he added. “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 congressional representatives and the epilepsy patient groups are specifically calling for a series of funded programs and research to be included in the federal fiscal year 2024 budget.

This includes $12 million for the Epilepsy Research Program, $175 million for the Traumatic Brain Injury and Psychological Health Research Program and $10 million for the Tuberous Sclerosis Complex Research Program.

They also want $164 million for the Centers for Disease Control and Prevention's (CDC's) Safe Motherhood and Infant Health program to enable more states to participate in a registry that can track sudden unexpected death in epilepsy up to the age of 20 and $13 million for the CDC's Epilepsy Program.

The CDC estimates that around 3.4 million people have epilepsy in the U.S., with 3 million of those being adults and 470,000 children.

While there are a number of treatments on the market, epilepsy can still up the risk of premature death for patients and cause mental health problems such as anxiety and depression, all the while also increasing the risk of injuries from seizures.

“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,” said Archana Pasupuleti, M.D., a pediatric neurology specialist at Children's National Hospital, in the release.

“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.”