SB1226 98TH GENERAL ASSEMBLY

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98TH GENERAL ASSEMBLY
State of Illinois
2013 and 2014
SB1226

Introduced 1/30/2013, by Sen. Dan Kotowski

SYNOPSIS AS INTRODUCED:

20 ILCS 2310/2310-665 new

Amends the Department of Public Health Powers and Duties Law of the Civil Administrative Code of Illinois. Sets forth the General Assembly's findings and declarations concerning sudden, unexpected death in epilepsy (SUDEP). Provides that the Department shall establish a SUDEP awareness program to educate medical examiners, examining physicians, and coroners in this State about SUDEP. Provides that all autopsies conducted in this State shall include an inquiry to determine whether the death was a direct result of a seizure or epilepsy. Provides that if a medical examiner's, examining physician's, or coroner's findings in an autopsy are consistent with the definition of known or suspected SUDEP, then the medical examiner, examining physician, or coroner shall take certain action.

FISCAL NOTE ACT MAY APPLY

A BILL FOR

AN ACT concerning health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 5. The Department of Public Health Powers and Duties Law of the Civil Administrative Code of Illinois is amended by adding Section 2310-665 as follows:

(20 ILCS 2310/2310-665 new)

Sec. 2310-665. Sudden, unexpected death in epilepsy awareness program.

(a) The General Assembly finds and declares that:

(1) 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.

(2) SUDEP is believed to account for up to 17% of deaths in people with epilepsy.

(3) 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.

(4) 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.

(5) 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, examining physicians, and coroners 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.

(b) The Department shall establish a sudden, unexpected death in epilepsy (SUDEP) awareness program to educate medical examiners, examining physicians, and coroners in this State about SUDEP.

(c) All autopsies conducted in this State shall include an inquiry to determine whether the death was a direct result of a seizure or epilepsy. If a medical examiner's, examining physician's, or coroner's findings in an autopsy are consistent with the definition of known or suspected SUDEP, then the medical examiner, examining physician, or coroner shall:

(1) cause to be indicated on the death certificate that SUDEP is the cause or suspected cause of death;

(2) 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

(3) 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, if such a gift has not already been established.