,i #aac? ,,congress #b;d ,session ,h4 ,r4 #eabd ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,july #af1 #bjad ,mr4 ,danny ,k4 ,davis ( ,ill9ois 7= himself & ,mr4 ,burgess7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to am5d ! ,public ,heal? ,s]vice ,act to reau?orize a sickle cell disease prev5tion & treatm5t demon/ration program & to provide = sickle cell disease rese>*1 surveillance1 prev5tion1 & treatm5t4 #a4 ,%ort title2 table ( cont5ts 7a7 ,%ort title ,?is ,act may be cit$ z ! ,sickle ,cell ,disease ,rese>*1 ,surveillance1 ,prev5tion1 & ,treatm5t ,act ( #bjad4 7b7 ,table ( cont5ts ,! table ( cont5ts ( ?is ,act is z foll[s3 ,sec4 #a4 ,%ort title2 table ( cont5ts4 ,sec4 #b4 ,sickle cell disease rese>*4 ,sec4 #c4 ,sickle cell disease surveillance4 ,sec4 #d4 ,sickle cell disease prev5tion & treatm5t4 ,sec4 #e4 ,collaboration ) community-bas$ entities4 ,sec4 #f4 ,au?orization ( appropriations4 #b4 ,sickle cell disease rese>* ,"p ,p ( title ,,iii ( ! ,public ,heal? ,s]vice ,act is am5d$ by ins]t+ aft] section #cii,v-#e 7#db ,u4,s4,c4 #bhj;g-#af7 ! foll[+3 #cii,v-#f4 ,national ,sickle ,cell ,disease ,rese>*1 ,surveillance1 ,prev5tion1 & ,treatm5t ,program 7a7 ,rese>* ,! ,secret>y may conduct or support rese>* to exp& ! und]/&+ ( ! cause (1 & to f9d a cure =1 sickle cell disease4 4 #c4 ,sickle cell disease surveillance ,section #cii,v-#f ( ! ,public ,heal? ,s]vice ,act1 z add$ by section #b1 is am5d$ by add+ at ! end ! foll[+3 7b7 ,surveillance 7#a7 ,grants ,! ,secret>y %all1 = ea* fiscal ye> = :i* appropriations are available to c>ry out ?is subsection1 make grants to n m ?an #bj ,/ates-- 7,a7 to conduct surveillance & ma9ta9 data on ! preval5ce & di/ribution ( sickle cell disease & its associat$ heal? outcomes1 complications1 & treatm5ts2 7,b7 to conduct public heal? initiatives ) respect to sickle cell disease1 includ+-- 7i7 increas+ ef=ts to improve access to1 & receipt (1 high-quality sickle cell disease-relat$ heal? c>e1 includ+ ! use ( prov5 treatm5ts su* z ,hydroxyurea2 7ii7 work+ ) p>tn]s to improve heal? outcomes ( p ) sickle cell disease ov] ! lifespan by promot+ guidel9es = sickle cell disease scre5+1 prev5tion1 & treatm5t1 includ+ managem5t ( sickle cell disease complications2 7iii7 provid+ support to community-bas$ organizations & ,/ate & local heal? dep>tm5ts 9 conduct+ sickle cell disease education & tra9+ activities = pati5ts1 communities1 & heal? c>e provid]s2 & 7iv7 support+ & tra9+ ,/ate heal? dep>tm5ts & regional laboratories 9 compreh5sive te/+ to id5tify specific =ms ( sickle cell disease 9 p ( all ages2 & 7,c7 to id5tify & evaluate promis+ /rategies = prev5tion & treatm5t ( sickle cell disease complications1 includ+ ?r\gh-- 7i7 improv+ e/imates ( ! national incid5ce & preval5ce ( sickle cell disease1 includ+ e/imates ab\t ! specific types ( sickle cell disease2 7ii7 id5tify+ heal? disp>ities relat$ to sickle cell disease2 7iii7 assess+ ! utilization ( !rapies & /rategies to prev5t complications relat$ to sickle cell disease2 & 7iv7 evaluat+ ! impact ( g5etic1 environm5tal1 behavioral1 & o!r risk factors t may affect sickle cell disease heal? outcomes4 7#b7 ,population includ$ ,! ,secret>y %all1 to ! ext5t practicable1 aw>d grants "u ?is subsection to ,/ates across ! ,unit$ ,/ates s z to include data on ! majority ( ! ,unit$ ,/ates population ) sickle cell disease4 7#c7 ,application ,to seek a grant "u ?is subsection1 a ,/ate %all submit an application to ! ,secret>y at su* "t1 9 su* mann]1 & conta9+ su* in=mation z ! ,secret>y may require4 7#d7 ,def9itions ,9 ?is subsection3 7,a7 ,! t]m ,secret>y means ! ,secret>y ( ,heal? & ,human ,s]vices1 act+ ?r\gh ! ,director ( ! ,national ,c5t] on ,bir? ,defects & ,developm5tal ,disabilities4 7,b7 ,! t]m ,/ate includes ! #ej ,/ates1 ! ,di/rict ( ,columbia1 ! ,commonweal? ( ,pu]to ,rico1 ! ,unit$ ,/ates ,virg9 ,isl&s1 ! ,commonweal? ( ! ,nor!rn ,m>iana ,isl&s1 ,am]ican ,samoa1 ,guam1 ! ,f$]at$ ,/ates ( ,micronesia1 ! ,republic ( ! ,m>%all ,isl&s1 & ! ,republic ( ,palau4 4 #d4 ,sickle cell disease prev5tion & treatm5t 7a7 ,reau?orization ,section #gab7;c7 ( ! ,am]ican ,jobs ,creation ,act ( #bjjd 7,public ,law #ajh-ceg2 #db ,u4,s4,c4 #cjj;b-#a note7 is am5d$-- 7#a7 by /rik+ ,sickle ,cell ,disease ea* place x appe>s & ins]t+ sickle cell disease2 7#b7 9 p>agraph 7#a77;,a71 by /rik+ grants to up to #dj eligible entities = ea* fiscal ye> 9 :i* ! program is conduct$ "u ?is section = ! purpose ( develop+ & e/abli%+ sy/emic me*anisms to improve ! prev5tion & treatm5t ( ,sickle ,cell ,disease & ins]t+ grants to up to #be eligible entities = ea* fiscal ye> 9 :i* ! program is conduct$ "u ?is section = ! purpose ( develop+ & e/abli%+ sy/emic me*anisms to improve ! prev5tion & treatm5t ( sickle cell disease 9 populations ) a high d5sity ( sickle cell disease pati5ts2 7#c7 9 p>agraph 7#a77;,b7-- 7,a7 by /rik+ clause 7ii7 7relat+ to priority72 & 7,b7 by /rik+ ,grant aw>d requirem5ts & all t foll[s ?r\gh ,! ,adm9i/rator %all & ins]t+ ,geographic div]sity4--,! ,adm9i/rator %all2 7#d7 9 p>agraph 7#b71 by add+ ! foll[+ new subp>agraph at ! end3 7,e7 ,to exp&1 coord9ate1 & implem5t transition s]vices = adolesc5ts ) sickle cell disease mak+ ! transition to adult heal? c>e4 2 & 7#e7 by /rik+ p>agraph 7#f74 7b7 ,te*nical *anges 7#a7 ,subsection 7c7 ( section #gab ( ! ,am]ican ,jobs ,creation ,act ( #bjjd 7,public ,law #ajh-ceg2 #db ,u4,s4,c4 #cjj;b-#a note7 is-- 7,a7 transf]r$ to ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bja et seq472 & 7,b7 ins]t$ at ! end ( section #cii,v-#f ( su* ,act1 z add$ & am5d$ by sections #b & #c ( ?is ,act4 7#b7 ,! table ( cont5ts 9 section #a7;c7 ( ! ,am]ican ,jobs ,creation ,act ( #bjjd 7,public ,law #ajh-ceg7 is am5d$ by /rik+ ! item relat+ to section #gab4 #e4 ,collaboration ) community-bas$ entities ,section #cii,v-#f ( ! ,public ,heal? ,s]vice ,act1 z am5d$ by section #c1 is fur!r am5d$ by add+ at ! end ! foll[+3 7c7 ,collaboration ) community-,bas$ entities ,to be eligible to receive a grant or o!r assi/ance "u subsection 7a71 7b71 or 7c71 an entity mu/ h 9 effect a collaborative agreem5t ) a community-bas$ organization ) #e or m ye>s ( exp]i5ce 9 provid+ s]vices to sickle cell disease pati5ts4 4 #f4 ,au?orization ( appropriations ,section #cii,v-#f ( ! ,public ,heal? ,s]vice ,act1 z am5d$ by section #e1 is fur!r am5d$ by add+ at ! end ! foll[+3 7d7 ,au?orization ( appropriations ,to c>ry out ?is section1 !re are au?oriz$ to be appropriat$ #bj1jjj1jjj = ea* ( fiscal ye>s #bjae ?r\gh #bjbj4 4