TRENTON – Legislation sponsored by Senators Richard J. Codey and Sandra Bolden Cunningham that would establish a program to better educate medical examiners in the state about sudden, unexpected death in epilepsy (SUDEP) and improve research of this rare condition, was approved today by the Senate Health, Human Services & Senior Citizens Committee.
“Sudden unexpected death in epilepsy is a rare condition that affects younger or middle-aged people who die without a specific, clear cause. However, we still know relatively little about why certain people are affected,” said Senator Codey (D-Essex, Morris). “Opening the door to additional research on this condition could be the key to finding its cause, and ultimately to saving lives.”
While the condition is known among the medical community, the amount of data available on SUDEP is shockingly small. The bill (S-2227) would create a uniform way of collecting information on this gravely serious issue and help to expand medical research into the condition. First, the bill would require the State Medical Examiner, in consultation with the Commission of Health and the State Board of Medical Examiners, to establish a program to educate medical examiners in the State about sudden, unexpected death in epilepsy (SUDEP).
The bill would require medical examiners to include, as part of their investigation into the cause of death, questions that would determine if the person in question had epilepsy. If a medical examiner’s findings in an autopsy are consistent with the definition of known or suspected SUDEP, the medical examiner would be required to indicate SUDEP as the cause or suspected cause of death and request from the authorized survivors of the decedent that the decedent’s relevant medical information be sent to a SUDEP registry. The medical examiner would also be required to make a request to the decedent’s family member that the brain be donated to help facilitate research.
“The more opportunities we have for research on sudden unexpected death in epilepsy the better chance we have of establishing interventions to prevent additional fatalities,” said Senator Cunningham (D-Hudson). “This program will train medical examiners to identify this condition during an autopsy and to help facilitate research, which is critical to improving our understanding of this rare but tragic disorder.”
Autopsy plays a key role in determining the diagnosis of SUDEP, yet the Institute of Medicine has found that SUDEP may be underreported for several reasons, including a lack of awareness about SUDEP among medical examiners. The cause of SUDEP is not known, and opportunities for its prevention have been hindered by the lack of a systematic effort to collect information about people who have died from SUDEP, as is done with many other disorders. Senator Codey introduced the bill after being approached by those in the medical community that study epilepsy.
The committee approved the bill by a vote of 10-0. It now heads to the full Senate for a vote.