Bill Text: IL SB1226 | 2013-2014 | 98th General Assembly | Introduced

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: 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.

Spectrum: Moderate Partisan Bill (Democrat 22-5)

Status: (Passed) 2013-08-13 - Public Act . . . . . . . . . 98-0340 [SB1226 Detail]

Download: Illinois-2013-SB1226-Introduced.html

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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.
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FISCAL NOTE ACT MAY APPLY
A BILL FOR
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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,

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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

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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.