,i #aad? ,,congress #b;d ,session ,h4 ,r4 #dega ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,febru>y #ab1 #bjaf ,ms4 ,moore 7= h]self1 ,ms4 ,jackson ,lee1 ,mr4 ,grijalva1 ,mr4 ,ryan ( ,ohio1 ,mr4 ,ha/+s1 ,mr4 ,rangel1 ,mrs4 ,beatty1 & ,ms4 ,bordallo7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to am5d ! ,public ,heal? ,s]vice ,act to improve ! heal? ( *ildr5 & help bett] und]/& & enhance aw>5ess ab\t unexpect$ sudd5 dea? 9 e>ly life4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,r$uc+ ,unexpect$ ,dea?s 9 ,infants & ,*ildr5 ,act ( #bjaf4 #b4 ,f9d+s ,congress f9ds z foll[s3 7#a7 ,ne>ly #c1ejj infants die sudd5ly & unexpect$ly e ye>4 7#b7 ,infants born to l[-income wom5 are m likely to die be=e _! fir/ bir?day ?an infants born 9 high]-income h\seholds4 7#c7 ,non-,hispanic ,black infants are m ?an twice z likely to die ( ,sudd5 ,unexpect$ ,infant ,dea? comp>$ to non-,hispanic ,:ite infants4 7#d7 ,disp>ities 9 sudd5 unexpect$ infant dea?s acc\nt = #ad p]c5t ( ! infant mortality gap betwe5 non-,hispanic ,black infants comp>$ to non-,hispanic ,:ite infants4 7#e7 ,pret]m bir? & l[ bir? weight may be contribut+ factors 9 dea?s f ,sudd5 ,infant ,dea? ,syndrome1 :i* is a type ( sudd5 unexpect$ infant dea? & ! lead+ cause ( po/neonatal dea?s4 7#f7 ,timely pr5atal c>e & appropriate bir? spac+ c r$uce ! risks ( e>ly deliv]y & l[ bir? weight4 7#g7 ,wom5 c r$uce ! risk ( infant mortality to _! infants by improv+ _! own heal?1 bo? preconception & dur+ pregnancy4 7#h7 ,! ,am]ican ,academy ( ,p$iatrics recomm5ds regul> pr5atal c>e z a /rategy = prev5t+ ,,sids1 not+ t !re is sub/antial epidemiologic evid5ce l9k+ a l[] risk ( ,,sids = infants ^: mo!rs obta9 regul> pr5atal c>e4 #c4 ,am5dm5t to ! ,public ,heal? ,s]vice ,act ,title ,,iii ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bda et seq47 is am5d$ by add+ at ! end ! foll[+3 ,w ,sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood #cii,,oo4 ,def9itions ,9 ?is "p3 7#a7 ,adm9i/rator ,! t]m ,adm9i/rator means ! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration4 7#b7 ,dea? sc5e inve/igator ,! t]m dea? sc5e inve/igator means an individual c]tifi$ z a dea? sc5e inve/igator by an accr$it$ pr(essional c]tification bo>d4 7#c7 ,director ,! t]m ,director means ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion4 7#d7 ,/ate ,! t]m ,/ate has ! mean+ giv5 to su* t]m 9 section #b1 except t su* t]m includes tribes & tribal organizations 7z su* t]ms are def9$ 9 section #d ( ! ,indian ,self-,det]m9ation & ,education ,assi/ance ,act74 7#e7 ,sudd5 unexpect$ infant dea?2 ,,suid ,! t]ms sudd5 unexpect$ infant dea? & ,,suid mean ! sudd5 dea? ( an infant "u #a ye> ( age t :5 fir/ discov]$ did n h an obvi\s cause4 ,su* t]ms include ^? dea?s t are lat] det]m9$ to be f expla9$ z well z unexpla9$ causes4 7#f7 ,sudd5 unexpla9$ dea? 9 *ildhood2 ,,sudc ,! t]ms sudd5 unexpla9$ dea? 9 *ildhood & ,,sudc mean ! sudd5 dea? ( a *ild :o is #a ye> ( age or old]1 :i* rema9s unexpla9$ aft] a ?or\gh case inve/igation t includes a review ( ! cl9ical hi/ory & circum/ances ( dea? & p]=mance ( a complete autopsy ) appropriate ancill>y te/+4 #cii,,oo-#a4 ,dea? sc5e inve/igation & autopsy 7a7 ,inve/igations 7#a7 ,grants ,! ,secret>y1 act+ ?r\gh ! ,director1 %all aw>d grants to ,/ates to enable su* ,/ates to improve ! completion ( compreh5sive dea? sc5e inve/igations = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood4 7#b7 ,application ,to be eligible to receive a grant "u p>agraph 7#a71 a ,/ate %all submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7#c7 ,use ( funds 7,a7 ,9 g5]al ,a ,/ate %all use am\nts receiv$ "u a grant "u p>agraph 7#a7 to improve ! completion ( compreh5sive dea? sc5e inve/igations = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood1 includ+ ?r\gh ! aw>d+ ( subgrants to local jurisdictions to be us$ to implem5t /&>d dea? sc5e inve/igation protocols = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood & conduct compreh5sive1 /&>diz$ autopsies4 7,b7 ,protocols ,a /&>d dea? sc5e protocol implem5t$ "u subp>agraph 7,a7 %all include ! obta9+ ( in=mation on curr5t & pa/ m$ical hi/ory ( ! infant_/*ild1 ! circum/ances surr\nd+ ! dea? includ+ any suspici\s circum/ances1 ! sleep position & sleep environm5t ( ! infant_/*ild1 & :e!r !re 7 any accid5tal or environm5tal factors associat$ ) ! dea?4 ,! ,director 9 consultation ) m$ical exam9]s1 coron]s1 dea? sc5e inve/igators1 law en=cem5t1 em]g5cy m$ical te*nicians & p>am$ics1 public heal? ag5cies1 & o!r individuals or gr\ps det]m9$ necess>y by ! ,director %all develop a /&>d dea? sc5e protocol = *ildr5 f #a to #d ye>s ( age1 us+ exi/+ protocols develop$ = ,,suid4 7b7 ,autopsies 7#a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,director1 %all aw>d grants to ,/ates to enable su* ,/ates to increase ! rate at :i* compreh5sive1 /&>diz$ autopsies are p]=m$ = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood4 7#b7 ,application ,to be eligible to receive a grant "u p>agraph 7#a71 a ,/ate %all submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7#c7 ,compreh5sive autopsy ,= purposes ( ?is subsection1 a compreh5sive autopsy %all include g5etic te/+ & a full ext]nal & int]nal exam9ation1 includ+ microscopic exam9ation1 ( all major organs & tissues includ+ ! bra91 complete radiographs1 vitre\s fluid analysis1 photo docum5tation1 select$ microbiology :5 indicat$1 metabolic te/+1 & toxicology scre5+ ( ! infant or *ild involv$4 7#d7 ,guidel9es ,! ,director1 9 consultation ) bo>d c]tifi$ =5sic pa?ologi/s1 m$ical exam9]s1 coron]s1 p$iatric pa?ologi/s1 p$iatric c>diologi/s1 p$iatric neuropa?ologi/s & g5etici/s1 & o!r individuals & gr\ps det]m9$ necess>y by ! ,director %all develop national guidel9es = a /&>d autopsy protocol = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood4 ,! ,director %all ensure t ! majority ( su* consultation is ) bo>d c]tifi$ =5sic pa?ologi/s1 m$ical exam9]s1 & coron]s4 ,! ,director is enc\rag$ to seek additional input f *ild abuse exp]ts1 b]eavem5t speciali/s1 p>5ts1 & public heal? ag5cies on nonm$ical aspects ( ! autopsy guidel9es4 ,9 develop+ su* protocol1 ! ,director %all consid] autopsy protocols us$ by ,/ate & local jurisdictions4 7c7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ #h1jjj1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba to c>ry out ?is section4 #cii,,oo-#b4 ,tra9+ 7a7 ,grants ,! ,secret>y1 act+ ?r\gh ! ,director1 %all aw>d grants to eligible entities = ! provision ( tra9+ on dea? sc5e inve/igation specific = ,,suid & ,,sudc4 7b7 ,eligible entities ,to be eligible to receive a grant "u subsection 7a71 an entity %all-- 7#a7 be-- 7,a7 a ,/ate or local gov]nm5t entity2 or 7,b7 a nonpr(it private entity2 & 7#b7 submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7c7 ,use ( funds ,an eligible entity %all use am\nts receiv$ "u a grant "u ?is section to-- 7#a7 provide tra9+ to m$ical exam9]s1 coron]s1 dea? sc5e inve/igators1 law en=cem5t p]sonnel1 ju/ices ( ! peace1 & em]g5cy m$ical te*nicians or p>am$ics conc]n+ dea? sc5e inve/igations = ,,suid & ,,sudc1 includ+ ! use ( /&>d dea? sc5e inve/igation protocols t include in=mation on ! curr5t & pa/ m$ical hi/ory ( ! infant_/*ild1 ! circum/ances surr\nd+ ! dea? includ+ any suspici\s circum/ances1 ! sleep position & sleep environm5t ( ! infant_/*ild1 & :e!r !re 7 any accid5tal or environm5tal factors associat$ ) ! dea?2 7#b7 provide tra9+ directly to individuals :o are responsible = conduct+ & review+ dea? sc5e inve/igations = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood2 7#c7 provide tra9+ to multidiscipl9>y teams1 includ+ teams t h a m$ical exam9] or coron]1 dea? sc5e inve/igator1 law en=cem5t repres5tative1 & an em]g5cy m$ical te*nician or p>am$ic2 7#d7 9 ! case ( national & ,/ate-bas$ grantees t are compris$ ( m$ical exam9]s1 coron]s1 dea? sc5e inve/igators1 law en=cem5t p]sonnel1 or em]g5cy m$ical te*nicians & p>am$ics1 integrate tra9+ "u ! grant on dea? sc5e inve/igation ( ,,suid & ,,sudc into pr(essional accr$itation & tra9+ programs2 7#e7 9 ! case ( ,/ate & local gov]nm5t entity grantees1 obta9 equipm5t1 includ+ comput] equipm5t1 to aid 9 ! completion ( /&>d dea? sc5e inve/igation2 or 7#f7 conduct tra9+ activities = m$ical exam9]s1 coron]s1 & =5sic pa?ologi/s conc]n+ /&>d autopsy protocols = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood & integrate ! tra9+ "u ! grant on /&>d autopsy protocols 9 ,,suid & ,,sudc into pr(essional accr$itation & tra9+ programs4 7d7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ to c>ry out ?is section #b1jjj1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba4 #cii,,oo-#c4 ,infant & ,*ild dea? review 7a7 ,prev5tion 7#a7 ,core capacity grants ,! ,secret>y1 act+ ?r\gh ! ,adm9i/rator1 %all aw>d grants to ,/ates to build & /r5g!n ,/ate capacity & implem5t ,/ate & local infant & *ild dea? review programs & prev5tion /rategies4 7#b7 ,plann+ grants ,! ,secret>y1 act+ ?r\gh ! ,adm9i/rator1 %all aw>d plann+ grants to ,/ates t h no exi/+ infant or *ild dea? review program or ,/ates 9 :i* ! only infant & *ild dea? review programs are ,/ate-bas$1 = ! developm5t ( local infant & *ild dea? review programs & prev5tion /rategies4 7#c7 ,application ,to be eligible to receive a grant "u p>agraph 7#a7 or 7#b71 a ,/ate %all submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7#d7 ,te*nical assi/ance ,! ,secret>y1 act+ ?r\gh ! ,adm9i/rator1 %all provide te*nical assi/ance to assi/ ,/ates-- 7,a7 9 develop+ ! capacity = compreh5sive infant & *ild dea? review programs1 includ+ ! developm5t ( be/ practices = ! implem5tation ( su* programs2 & 7,b7 9 ma9ta9+ ! national infant & *ild dea? case report+ sy/em4 7b7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ #g1jjj1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba to c>ry out subsection 7a74 #cii,,oo-#d4 ,grants = support s]vices 7a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,adm9i/rator1 %all aw>d grants to national organizations1 ,/ate & local heal? dep>tm5ts1 community-bas$ organizations1 & nonpr(it organizations = ! provisions ( support s]vices to families :o h _h a *ild die ( sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood4 7b7 ,application ,to be eligible to receive a grant "u subsection 7a71 an entity %all submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7c7 ,use ( funds ,am\nts receiv$ "u a grant aw>d$ "u subsection 7a7 may be us$ to provide grief c\nsel+1 education1 home visits1 #bd-;h\r hotl9es1 ensure access to grief & b]eavem5t s]vices1 build capacity 9 pr(essionals work+ ) families :o exp]i5ce a sudd5 dea?1 & support gr\ps = families :o h lo/ a *ild to sudd5 unexpect$ infant dea? or sudd5 unexpla9$ dea? 9 *ildhood4 7d7 ,pref]5ce ,9 aw>d+ grants "u subsection 7a71 ! ,secret>y %all give pref]5ce to community-bas$ applicants t h a prov5 hi/ory ( effective direct support s]vices & int]v5tions = sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood & c demon/rate exp]i5ce ?r\gh collaborations & p>tn]%ips = deliv]+ s]vices ?r\gh\t a ,/ate or region4 7e7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ to c>ry out ?is section #a1jjj1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba4 #cii,,oo-#e4 ,evaluation ( ,/ate & regional ne$s 7a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,director & 9 consultation ) ! ,adm9i/rator1 %all conduct a ne$s assessm5t on a ,/ate & regional basis ( ! availability ( p]sonnel1 tra9+1 te*nical assi/ance1 & res\rces = inve/igat+ & det]m9+ sudd5 unexpect$ infant dea? & sudd5 unexpla9$ dea? 9 *ildhood & make recomm5dations to increase collaboration on a ,/ate & regional level = inve/igation & det]m9ation4 7b7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ to c>ry out ?is section #bej1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba4 4 #d4 ,enhanc+ public heal? activities relat$ to /illbir? ,"p ,p ( title ,,iii ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is am5d$ by add+ at ! end ! foll[+3 #cii,v-#f4 ,enhanc+ public heal? activities relat$ to /illbir? 7a7 ,grants ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all aw>d grants to eligible ,/ates to enhance & exp& surveillance ef=ts to collect ?or\gh & complete epidemiologic in=mation on /illbir?s1 includ+ ?r\gh ! utilization ( ! infra/ructure ( exi/+ surveillance sy/ems 7includ+ vital /ati/ics sy/ems74 7b7 ,eligibility ,to be eligible to receive a grant "u subsection 7a71 an entity %all-- 7#a7 be a ,/ate2 & 7#b7 submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require1 includ+-- 7,a7 an assurance t ! applicant w implem5t ! /&>diz$ surveillance protocol develop$ "u subsection 7c72 & 7,b7 a description ( ! infra/ructure ( exi/+ surveillance sy/ems 9 ! ,/ate4 7c7 ,surveillance protocol ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all-- 7#a7 provide = ! cont9u$ developm5t & dissem9ation ( a /&>d protocol = /illbir? data collection & surveillance1 9 consultation ) repres5tatives ( heal? & advocacy organizations1 ,/ate & local gov]nm5ts1 & o!r int]e/$ entities det]m9$ appropriate by ! ,secret>y2 7#b7 monitor tr5ds & id5tify pot5tial risk factors = fur!r /udy us+ exi/+ s\rces ( surveillance data & exp&$ s\rces ( data f t>get$ surveillance ef=ts1 & me?ods = ! evaluation ( /illbir? prev5tion ef=ts2 & 7#c7 develop & evaluate me?ods to l9k exi/+ data to provide m complete in=mation = rese>* into ! causes & conditions associat$ ) /illbir?4 7d7 ,po/mortem evaluation & ,data ,collection ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion & 9 consultation ) physicians1 nurses1 pa?ologi/s1 g5etici/s1 p>5ts1 & o!r gr\ps det]m9$ necess>y by ! ,director1 %all develop guidel9es = increas+ ! p]=mance & data collection ( po/mortem /illbir? evaluation1 includ+ conduct+ & reimburs+ autopsies1 plac5tal hi/opa?ology1 & cytog5etic te/+4 ,! guidel9es %\ld take into acc\nt cultural compet5cy issues relat$ to po/mortem /illbir? evaluation4 7e7 ,public heal? programmatic activities relat$ to /illbir? ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 %all-- 7#a7 develop behavioral surveys = wom5 exp]i5c+ /illbir?1 us+ exi/+ ,/ate-bas$ infra/ructure = pregnancy-relat$ in=mation ga!r+2 7#b7 increase ! te*nical assi/ance provid$ to ,/ates1 ,indian tribes1 t]ritories1 & local communities to enhance capacity = improv$ inve/igation ( m$ical & social factors surr\nd+ /illbir? ev5ts2 & 7#c7 e/abli% be/ practices = home visits aft] ! dea? ( a *ild1 us+ exi/+ /&>ds = su* be/ practices1 z available4 7f7 ,public education & prev5tion programs ,! ,secret>y1 act+ ?r\gh ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion & 9 consultation ) heal? c>e provid]s1 public heal? organizations1 mat]nal & *ild heal? programs1 p>5ts1 & o!r gr\ps deem$ necess>y by ! ,director1 %all directly or ?r\gh grants1 coop]ative agreem5ts1 or contracts to eligible entities1 develop & conduct evid5ce-bas$ public education & prev5tion programs aim$ at r$uc+ ! occurr5ce ( /illbir? ov]all & address+ ! racial & e?nic disp>ities 9 its occurr5ce1 includ+-- 7#a7 public education programs1 s]vices1 & demon/rations :i* are design$ to increase g5]al aw>5ess ( /illbir?s2 & 7#b7 ! developm5t ( tools = ! education ( heal? pr(essionals & wom5 conc]n+ ! kn[n risk factors = /illbir?1 promotion ( fetal movem5t aw>5ess1 & ! importance ( e>ly & regul> pr5atal c>e to monitor ! heal? & developm5t ( ! fetus up to & dur+ deliv]y4 7g7 ,task =ce ,! ,secret>y1 9 consultation ) ! ,director ( ! ,national ,in/itutes ( ,heal?1 ! ,director ( ! ,c5t]s = ,disease ,control & ,prev5tion1 & heal? c>e provid]s1 rese>*]s1 p>5ts1 & o!r gr\ps deem$ necess>y by ! ,directors1 %all e/abli% a task =ce to develop a national rese>* plan to det]m9e ! causes (1 & h[ to prev5t1 /illbir?4 7h7 ,grants = support s]vices 7#a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! ,adm9i/rator ( ! ,heal? ,res\rces & ,s]vices ,adm9i/ration1 %all aw>d grants to national organizations1 ,/ate & local heal? dep>tm5ts1 & community-bas$ organizations1 = ! provisions ( support s]vices to families :o h exp]i5c$ /illbir?4 7#b7 ,application ,to be eligible to receive a grant "u p>agraph 7#a71 an entity %all submit to ! ,secret>y an application at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7#c7 ,use ( funds ,am\nts receiv$ "u a grant aw>d$ "u p>agraph 7#a7 may be us$ to provide grief c\nsel+1 education1 home visits1 #bd-;h\r hotl9es1 ensure access to grief & b]eavem5t s]vices1 build capacity 9 pr(essionals work+ ) families :o exp]i5ce a sudd5 dea?1 & support gr\ps = families :o h exp]i5c$ /illbir?4 7#d7 ,pref]5ce ,9 aw>d+ grants "u p>agraph 7#a71 ! ,secret>y %all give pref]5ce to applicants t are community-bas$ organizations t h a prov5 hi/ory ( provid+ effective direct support s]vices & int]v5tions relat$ to /illbir?s & c demon/rate exp]i5ce ?r\gh collaborations & p>tn]%ips = deliv]+ s]vices ?r\gh\t a ,/ate or region4 7i7 ,def9itions ,9 ?is section3 7#a7 ,! t]m ,/ate has ! mean+ giv5 to su* t]m 9 section #b1 except t su* t]m includes tribes & tribal organizations 7z su* t]ms are def9$ 9 section #d ( ! ,indian ,self-,det]m9ation & ,education ,assi/ance ,act74 7#b7 ,! t]m /illbir? means a spontane\s1 n induc$1 pregnancy loss #bj weeks or lat] aft] ge/ation1 or if ! age ( ! fetus is n kn[n1 !n a fetus weigh+ #cej grams or m4 7j7 ,au?orization ( appropriations ,!re is au?oriz$ to be appropriat$ to c>ry out ?is section #c1jjj1jjj = ea* ( fiscal ye>s #bjag ?r\gh #bjba4 4