First Regular Session Sixty-ninth General Assembly STATE OF COLORADO INTRODUCED LLS NO. 13-0879.01 Kristen Forrestal x4217HOUSE BILL 13-1256 HOUSE SPONSORSHIP Joshi, SENATE SPONSORSHIP Aguilar, House Committees Senate Committees Public Health Care & Human Services A BILL FOR AN ACT Concerning the creation of "The Sudden Unexpected Death In Epilepsy Reporting Requirement Act of 2013", and, in connection therewith, raising awareness about and requiring reporting of epilepsy-related deaths. Bill Summary (Note: This summary applies to this bill as introduced and does not reflect any amendments that may be subsequently adopted. If this bill passes third reading in the house of introduction, a bill summary that applies to the reengrossed version of this bill will be available at http://www.leg.state.co.us/billsummaries.) The bill requires the state's chief medical officer to establish a sudden unexpected death in epilepsy (SUDEP) awareness program to educate medical examiners and coroners about SUDEP. The bill requires all postmortem examinations to determine whether the death was a result of SUDEP. If the findings are consistent with the definition of SUDEP, the medical examiner or coroner is required to indicate this cause of death on the death certificate, request that the individual's medical information be forwarded to a SUDEP registry, and request that the individual's brain be donated to a brain bank for research purposes. Be it enacted by the General Assembly of the State of Colorado: SECTION 1. In Colorado Revised Statutes, add 25-2-123 as follows: 25-2-123. Sudden unexpected death in epilepsy reporting requirement - awareness program - short title - legislative declaration. (1) This section shall be known and may be cited as "The Sudden Unexpected Death in Epilepsy Reporting Requirement Act of 2013". (2) The general assembly finds and declares that: (a) Sudden, unexpected death in epilepsy, referred to in this section as SUDEP, is an unsolved, rare condition by which typically young or middle-aged people with epilepsy die without a clear cause, and is generally defined by the medical community as a sudden, unexpected, nontraumatic, nondrowning 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 thirty-eight 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 under-reported for several reasons, including a lack of awareness about SUDEP among medical examiners and coroners; (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 has been done with many other disorders; and (e) It is appropriate to raise awareness of SUDEP among medical examiners and coroners by developing a SUDEP awareness program and to facilitate research into the causes and prevention of SUDEP by requiring that medical examiners and coroners in this state who determine that an individual's cause of death is SUDEP work with relevant organizations in the state to assist in requesting from the next of kin that an individual's relevant medical information be sent to a SUDEP registry and that the individual's brain be donated for research purposes. (3) The chief medical officer shall establish a sudden unexpected death in epilepsy awareness program to educate medical examiners and coroners in the state about SUDEP. (4) All postmortem examinations conducted must include an inquiry to determine whether the death was a direct result of a seizure or epilepsy. The chief medical officer, in consultation with the county medical examiners, coroners, and organizations with expertise in SUDEP, shall establish a standard protocol governing medicolegal death investigations involving seizure disorders in order to identify the deaths. If a medical examiner's or coroner's findings in an autopsy are consistent with the definition of known or suspected SUDEP, the medical examiner or coroner shall: (a) Indicate on the death certificate that SUDEP is the cause or suspected cause of death; (b) Retain and track the information and make data concerning seizure-related deaths, with individually identifiable information redacted, publicly available upon request; (c) Work with relevant organizations in the state to assist in requesting from the authorized survivors of the deceased individuals that their 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 (d) Work with relevant organizations in the state to assist in requesting from the authorized survivors of individuals with epilepsy 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. The donation should optimally be carried out within twenty-four hours of death, with shipping materials and shipping costs paid by the brain bank. SECTION 2. Act subject to petition - effective date. This act takes effect at 12:01 a.m. on the day following the expiration of the ninety-day period after final adjournment of the general assembly (August 7, 2013, if adjournment sine die is on May 8, 2013); except that, if a referendum petition is filed pursuant to section 1 (3) of article V of the state constitution against this act or an item, section, or part of this act within such period, then the act, item, section, or part will not take effect unless approved by the people at the general election to be held in November 2014 and, in such case, will take effect on the date of the official declaration of the vote thereon by the governor.