Moms Introduce Bill to Change Autopsy Procedure for Epilepsy

RICHMOND - A group of Virginia moms, backed by the Epilepsy Foundation of Virginia (EFVA), have introduced HB 392, a bill requiring that medical examiners receive training on how to investigate and identify sudden unexpected death in epilepsy (SUDEP) during an autopsy. Upon such a finding, deaths are to be reported to the North American SUDEP Registry, a global leader for epilepsy research.

“Virginia needs this bill because despite epilepsy affecting 84,800 people in the state, SUDEP isn’t well understood in the medical community. As a result SUDEP is underreported,” said Jeffrey Guzman, the EFVA Advocacy Director. “It’s critical that SUDEP deaths are accurately recorded because death rates affect research funding. The same research that could prevent SUDEP in the future.”

Epilepsy is a disorder of the brain causing recurrent seizures. One third of those with epilepsy
have drug-resistant epilepsy, meaning medication cannot control their seizures. 1 in 150 people
with uncontrolled seizures die of SUDEP. One such victim was 21 year-old Jonathan Alan Gibbs
Bush. “He would always say, ‘I’d rather have cancer than epilepsy, because at least people know
what cancer is,’” said Jonathan’s mother, Evelyn Gibbs.

Even in the 66 percent living with controlled seizures, SUDEP is still a risk as it kills 1 in 1,000
of all with epilepsy. “His physician never told us SUDEP was possible. Had we known the
medication could fail and that there were triggers to look for perhaps we could have prevented it.
But now it’s too late,” said Wendy Parker, whose 31 year-old son, Todd, died after living
seizure-free for years.

Similar legislation has been enacted in the states of Connecticut, Illinois, New Jersey, New York,
and North Carolina. Suzann Bischoff, Executive Director of the Epilepsy Foundation of Virginia said, “We are providing this training and other resources to medical examiners because it’s important that any barriers to the very important research be removed and that families of victims get needed closure.”

For information on how to support this legislation, contact Epilepsy Foundation of Virginia Advocacy Director Jeffrey Guzman at efva.guzman@gmail.com or 804-420-8703.

The Epilepsy Foundation of Virginia (EFVA) leads the fight to overcome the challenges of living
with epilepsy and accelerate therapies that save lives. Established in 1978, the foundation
promotes awareness and provides assistance to the 84,800 Virginians living with epilepsy. Learn
more at www.epilepsyva.com and follow us on Facebook, Instagram, Twitter, and YouTube.