S2227

An Act concerning sudden death in epilepsy and supplementing Title 52 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. The Legislature finds and declares that:

a. Sudden, unexpected death in epilepsy (SUDEP) is a mysterious, rare condition in which typically young or middle-aged individuals with epilepsy die without a clear cause, and is generally defined by the medical community as a sudden, unexpected, non-traumatic, non-drowning death in an otherwise healthy individual with epilepsy, where the postmortem examination does not reveal an anatomic or toxicologic cause for the death;

b. SUDEP is believed to account for up to 17 percent of deaths in people with epilepsy;

c. 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;

d. 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 persons who have died from SUDEP, as is done with many other disorders; and

e. It is appropriate to raise awareness of SUDEP among medical examiners by developing a SUDEP awareness program and to facilitate research into the causes and prevention of SUDEP by requiring that medical examiners in this State who determine that an individual’s cause of death is SUDEP request from the individual’s survivors that the individual’s relevant medical information be sent to a SUDEP registry and that the individual’s brain be donated for research purposes.

2. The State Medical Examiner, in consultation with the Commissioner of Health and the State Board of Medical Examiners, shall establish a sudden unexpected death in epilepsy (SUDEP) awareness program to educate medical examiners in the State about SUDEP.

3. All investigations conducted pursuant to section 9 of P.L.1967, c.234 (C.52:17B-86) shall include an inquiry to determine whether the death was a direct result of a seizure or epilepsy. If a medical examiner’s findings in an autopsy are consistent with the definition of known or suspected SUDEP, the medical examiner shall:

a. indicate on the death certificate that SUDEP is the cause or suspected cause of death;

b. request from the authorized survivors of that individual that the individual’s relevant medical information, consistent with the federal health privacy rules set forth at 45 CFR Parts 160 and 164, be forwarded to a SUDEP registry for purposes of research; and

c. request from the authorized survivors of individuals with epilepsy and individuals determined or suspected to have died as a result of SUDEP that a donation of the individual’s brain be made for research purposes to a brain bank that is registered pursuant to P.L.2008, c.49 (C.26:6-68 et seq.), if such a gift has not already been established pursuant to the provisions of P.L.2008, c.50 (C.26:6-77 et al.).

4. This act shall take effect on the first day of the fourth month next following the date of enactment.

STATEMENT

This bill requires that the State Medical Examiner establish a program to educate medical examiners in the State about sudden, unexpected death in epilepsy (SUDEP), which is a mysterious condition in which typically young or middle-aged individuals with epilepsy die without a clear cause and is believed to account for up to 17 percent of deaths in people with epilepsy.

In addition to receiving training about SUDEP, medical examiners would be required to include in their investigations questions to determine if a decedent had epilepsy and request from the authorized survivors of decedents with epilepsy and decedents determined or suspected to have died as a result of SUDEP that the decedent’s relevant medical information be sent to a SUDEP registry and the decedent’s brain be donated to a brain bank to facilitate research.

Research to help prevent SUDEP has been hindered by the lack of a systematic collection of medical information and brain tissue of individuals who have died from SUDEP. Medical examiners can serve a key role in diagnosing SUDEP, but currently medical examiners often do not recognize that a death may be the result of SUDEP.