SB 77 — Epilepsy-Related Mortality Awareness

SecondNOTE: Regular Session Seventy-fifth General Assembly STATE OF COLORADO REREVISED This Version Includes All Amendments Adopted in the Second House LLS NO.

26-0349.01This Piercebill Livelyhas x2059been SENATEprepared BILLfor 26-077the SENATEsignatures SPONSORSHIPof Jodeh,the Amabile,appropriate Ball,legislative Benavidez,officers Bright,and Carson,the Coleman,Governor. Cutter, Danielson, Daugherty, Exum, Frizell, Gonzales J., Hinrichsen, Kipp, Kirkmeyer, Kolker, Lindstedt, Marchman, Mullica, Roberts, Rodriguez, Simpson, Snyder, Sullivan, Wallace, Weissman HOUSE SPONSORSHIP GilchristandStewartK., Bacon,Boesenecker,Brown,Camacho,Clifford,Duran,Feret, Froelich,Hamrick,Jackson,Lieder,Lindsay,Marshall,McCluskie,Nguyen,Rutinel,Rydin, Stewart R., Story, Titone d n e 6 E a 0 U U , O i i H a p Senate Committees House Committees R A Health & Human Services Health & Human Services r g A BILL FOR AN ACT d 06 E a 2 C ONCERNING EPILEPSY -RELATED MORTALITY AWARENESS .

STo Rdetermine 7whether Othe dGovernor hhas Hsigned 2the rbill eor ataken Billother Summaryaction non Mit, eplease Aconsult (Note:the legislative status sheet, the legislative history, or the Session Laws.

ThisSENATE summaryBILL applies26-077 toBYSENATOR(S)Jodeh,Amabile,Ball,Benavidez,Bright,Carson,Cutter, thisDanielson, billDaugherty, asExum, introducedFrizell, andGonzales doesJ., notreflectanyamendmentsthatmaybesubsequentlyadopted.IfthisbillHinrichsen, passesKipp, thirdKirkmeyer, readingKolker, inLindstedt, theMarchman, houseMullica, ofRoberts, introduction,Rodriguez, aSimpson, billSnyder, summarySullivan, thatWallace, dWeissman, appliesColeman; to the reengrossed version of this bill will be available at d e 2 http://leg.colorado.gov.) E a 2 A U 2 N n h Thebillrequiresthedepartmentof publichealthandenvironment S a r (department) to do the following in relation to sudden unexpected death e a r M in epilepsy and other epilepsy-related mortalities:

3alsoREPRESENTATIVE(S)GilchristandStewartK.,Bacon,Boesenecker, !Brown, Gatherandprovidetofamiliesandhealth-carepractitionersCamacho, informationClifford, onDuran, suddenFeret, unexpectedFroelich, deathHamrick, inJackson, epilepsyLieder, andLindsay, otherMarshall, epilepsy-relatedNguyen, mortalities;Rutinel, Rydin, Stewart R., Story, Titone, McCluskie.

nCONCERNING dEPILEPSY 6-RELATED !MORTALITY EnsureAWARENESS that. all death investigation professionals are aware e 2 of the latest epilepsy-related death investigation E R 2 A n 0 E 2 h Shading denotes HOUSE amendment.

Double underlining denotes SENATE amendment.

S e r Capital letters or bold & italic numbers indicate new material to be added to existing law.n M Dashes through the words or numbers indicate deletions from existing law.

m A recommendations from a nationally recognized and reputable organization of medical examiners and a nationally recognized and reputable organization of medicolegal death investigators;

! Conduct a statewide public health campaign to expand public awareness of and educate the public about epilepsy and its associated mortality risks;

and ! Report all epilepsy-related deaths to a sudden unexpected death in epilepsy registry.

The bill also requires that investigations regarding the cause and mannerof adeathsuspectedtobeordeterminedtobecausedbyepilepsy or a seizure must include a determination of whether the death was a direct result of a seizure or epilepsy.

If there is a determination that the cause and manner of an individual's death was consistent with the definition of known or suspected sudden unexpected death in epilepsy, a death investigation professional shall ensure that the individual's death certificateidentifiesepilepsyasthecontributingcauseorsuspectedcause of death.

SECTION1.SECTION 1.

InColoradoRevisedStatutes,addarticle60totitleIn 25Colorado Revised Statutes, add article 60 to title as follows:

THET HE SHORT TITLE OF THIS ARTICL60ARTICLE 60 IS"LINCOLN S LAW ".

________ Capital letters or bold & italic numbers indicate new material added to existing law;

dashes through words or numbers indicate deletions from existing law and such material is not part of the act.

(a) EPILEPSY IS A BRAIN DISORDER THAT CAUSES RECURRING AND UNPROVOKED SEIZURES AND AFFECTS PEOPLE OF ALL AGES ,IMPACTING, IMPACTING APPROXIMATELY THREE MILLION ADULTS AND FOUR HUNDRED AND FIFT-SIXFIFTY-SIX THOUSAND CHILDREN IN THE UUNITED NITEDSTATES STATES;;

-2- 077 (c) PEOPLE WITH EPILEPSY HAVE A THREE TIMES HIGHER RISK OF EARLY DEATH THAN THE GENERAL POPULATION , AND THAT RISK IS INCREASED FOR THOSE WITH UNCONTROLLED SEIZURES;SEIZURES ;

(d) SDDENUNEXPECTEDDEATHINEPILEPSYCLAIMSTHELIVESOFSUDDEN ONEOFEVERYONETHOUSANDPEOPLELIVINGWITHEPILEPSYANDONEOFUNEXPECTED DEATH IN EPILEPSY CLAIMS THE LIVES OF ONE OF EVERY ONE THOUSAND PEOPLE LIVING WITH EPILEPSY AND ONE OF EVERY ONE HUNDRED FIFTY PEOPLE LIVING WITH EPILEPSY AND UNCONTROLLED SEIZURES ;

(e) ANNUALLYINTHEANNUALLY UIN NITEDSTATES,MORETHANSIXTHOUSANDTHE PEOPLEU WITHNITED EPILEPSYSTATES DIE,MORE FROMTHAN CAUSESSIX LIKETHOUSAND SUDDENPEOPLEWITHEPILEPSYDIEFROMCAUSESLIKESUDDENUNEXPECTEDDEATH UNEXPECTEDIN DEATHEPILEPSYSTATUS INEPILEPTICUS,UNINTENTIONAL EPILEPS,STATUSINJURIES EPILEPTICU,UNINTENTIONALINJURIES,AND,AND SUICIDE.

HISTHIS STATISTIC UNDERESTIMATES THE NUMBER OF DEATHS CAUSEDBYEPILEPSYORSUDDENUNEXPECTEDDEATHINEPILEPSYCAUSED ,DUETOBY POOREPILEPSY RECOGNITION,INCOMPLETEOR SUDDEN UNEXPECTED DEATH RECORDSIN ,ANDEPILEPSY MISATTRIBUTED, CAUSESDUE TO POOR RECOGNITION ,INCOMPLETE DEATHRECORDS ,ANDMISATTRIBUTEDCAUSES OF MORTALITY.MORTALITY .

(f) SSUDDEN UDDEN UNEXPECTED DEATH IN EPILEPSY IS THE MOST COMMON CAUSE OF PREMATURE EPILEPSY -RELATED MORTALITY;MORTALITY ;

(g) SUDDENS UDDEN UNEXPECTED DEATH IN EPILEPSY IS THE TERM USED WHEN SOMEONE WITH EPILEPSY DIES WITHOUT WARNING,ANDWARNING ,AND NO OTHER CAUSE OF DEATH CAN BE FOUND;FOUND ;

(h) R ISK COUNSELING FOCUSED ON ALL CAUSES OF EPILEPSY MORTALITY ,INCLUDING,INCLUDINGSUDDENUNEXPECTEDDEATHINEPILEPSY SUDDEN,CANHELP UNEXPECTED DEATH IN EPILEPSY,CAN HELP MITIGATE RISK AND PREVENT UNNECESSARY DEATHS .

UUNFORTUNATELY NFORTUNATELY, ,THESEPAGE 2-SENATE BILL 26-077 THESE SERVICES ARE OFTEN UNAVAILABLE DUE TO A LACKOFAWARENESSANDEDUCATIONLACK OF AWARENESS AND EDUCATION AND THE ABSENCE OFCONSISTENTOF CONSISTENT REIMBURSEMENT FOR POST-DIAGNOSIS EDUCATION AND CASE MANAGEMENT SERVICES .

(i) ISTHEINTENTOFTHEGENERALASSEMBLYTOHELPMITIGATEI -3-IS 077THE RISKINTENT ANDOF PREVENTTHE UNNECESSARYGENERAL DEATHSASSEMBLY BYTO INCREASINGHELP AWARENESSMITIGATE ANDRISKANDPREVENTUNNECESSARYDEATHSBYINCREASINGAWARENESSAND EDUCATION CONCERNING SUDDEN UNEXPECTED DEATH IN EPILEPSY.EPILEPSY .

A S USED IN THIS ARTIC60,UNLESSARTICLE60, UNLESS THE CONTEXT OTHERWISE REQUIRES:REQUIRES :

(1) "DEATH"D EATH CERTIFICATION PROFESSIONA"PROFESSIONAL " MEANS A CORONER , MEDICAL EXAMINER ,FORENSIC, FORENSIC PATHOLOGIST ,OR OTHER QUALIFIED INDIVIDUALWHODETERMINESTHECAUSEOFDEATHANDCOMPLETESTHEINDIVIDUAL WHO DETERMINES THE CAUSE OF DEATH AND COMPLETES THE MEDICAL CERTIFICATION FOR A CERTIFICATE OF DEATH IN ACCORDANCE WITH SECTION25-2-110.SECTION 25-2-110.

(2) "DEPARTMENT"D "MEANSEPARTMENT " MEANS THE DEPARTMENT OF PUBLIC HEALTH AND ENVIRONMENT CREATED IN SECTION 25-1-102 (1).

Epilepsy-relatedmortalityEpilepsy-related mortality awareness and training.

(1) BEGINNINGBEGINNINGJULY ULY1,2027,ADEATHCERTIFICATIONPROFESSIONAL 1, 2027, A DEATH CERTIFICATION PROFESSIONAL SHALL ENSURE THAT THEY ARE AWARE OF THE MOST RECENT EPILEPSY-RELATED DEATH CERTIFICATION RECOMMENDATIONS FROM A NATIONALLY RECOGNIZED AND REPUTABLE ORGANIZATION ASSOCIATEDWITHTHEIRRESPECTIVEMEDICALPRACTICEFOCUSORFROMASSOCIATED THEWITHTHEIRRESPECTIVEMEDICALPRACTICEFOCUSORFROMTHENATIONAL NATIONAL ASSOCIATION OF MEDICAL EXAMINERS.EXAMINERS .

(2) ONO N OR BEFORE JUNE 1, 2027,THE2027, THE DEPARTMENT SHALL ELECTRONICALLYNOTIFYALLREGISTEREDELECTRONICALLY MEDICALCERTIFIERNOTIFY USERSOFALL REGISTERED MEDICAL CERTIFIER USERS OF THE COLORADO VITAL EVENTS SYSTEM OF THE REQUIREMENTS OF SUBSECTION (1)OF THIS SECTI.NSECTION. 25-60-105.

Sudden25-60-105. unexpected death in epilepsy - identification - death certificates.

(1)Suddenunexpecteddeathinepilepsy-identification I- Adeath DEATHcertificates. CERTIFICATION PROFESSIONAL DETERMINES THAT -4- 077 THE CAUSE OF AN INDIVIDUALS DEATH IS CONSISTENT WITH KNOWN OR SUSPECTED SUDDEN UNEXPECTED DEATH IN EPILEPSY , THE DEATH CERTIFICATION PROFESSIONAL SHALL ENSURE THAT THE INDIVIDUAL S DEATH CERTIFICATE IDENTIFIES EPILEPSY AS A CONTRIBUTING CAUSE OR A SUSPECTED CAUSE OF DEATH CONSISTENT WITH THE MOST RECENT EPILEPSY-RELATED DEATH CERTIFICATION RECOMMENDATIONS FROM A NATIONALLY RECOGNIZED AND REPUTABLE ORGANIZATION ASSOCIATED WITH THE DEATH CERTIFICATION PROFESSIONAL S MEDICAL PRACTICE FOCUS OR FROM THE NATIONAL ASSOCIATION OF MEDICAL EXAMINERS.

(2)(1) TFADEATHCERTIFICATIONPROFESSIONALDETERMINESTHATTHE HEPAGE DEPARTMENT3-SENATE MAYBILL PROVIDE26-077 ONLINECAUSE GUIDELINESOF FORAN CLINICIANSINDIVIDUAL ANDS MEDICALDEATH CERTIFIERSIS FORCONSISTENT DEATHWITH CERTIFICATESKNOWN REGARDINGEPILEPSYOR RELATEDDEATHSSUSPECTED ,INCLUDINGSUDDENUNEXPECTEDSUDDEN UNEXPECTED DEATH IN EPILEPS.EPILEPSY , THE DEATH CERTIFICATIONPROFESSIONALSHALLENSURETHATTHEINDIVIDUAL 'SDEATH CERTIFICATE IDENTIFIES EPILEPSY AS A CONTRIBUTING CAUSE OR A SUSPECTED CAUSE OF DEATH CONSISTENT WITH THE MOST RECENT EPILEPSY-RELATED DEATH CERTIFICATION RECOMMENDATIONS FROM A NATIONALLY RECOGNIZED AND REPUTABLE ORGANIZATION ASSOCIATED WITHTHEDEATHCERTIFICATIONPROFESSIONAL SMEDICALPRACTICEFOCUS OR FROM THE NATIONAL ASSOCIATION OF MEDICAL EXAMINERS .

(2) THE DEPARTMENT MAY PROVIDE ONLINE GUIDELINES FOR CLINICIANSANDMEDICALCERTIFIERSFORDEATHCERTIFICATESREGARDING EPILEPSY-RELATED DEATHS ,INCLUDING SUDDEN UNEXPECTED DEATH IN EPILEPSY.

on the day following the expiration of the ninety-dayperiodafterfinaladjournmentofthegeneralassembly(Augustninety-dayperiod after final adjournment of the general assembly(August 12, 2026, if adjournment sine die is on May 13, 2026);

except that, if a referendumreferendumpetitionisfiledpursuanttosection1(3)ofarticleVofthestate 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 approvedPAGE by4-SENATE theBILL people26-077 atapprovedbythepeopleatthegeneralelectiontobeheldinNovember2026 the general election to be held in November 2026 and, in such case, will take effect on the date of the official declaration of the vote thereon by the governor.