,,ii #aac? ,,congress #a/ ,session ,s4 #abdg ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,june #bg1 #bjac ,mr4 ,re$ introduc$ ! foll[+ bill2 :i* 0 read twice & ref]r$ to ! ,committee on ,heal?1 ,education1 ,labor1 & ,p5sions ,a ,,bill ,to improve & enhance rese>* & programs on *ildhood canc] survivor%ip1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,p$iatric1 ,adolesc5t1 & ,"y ,adult ,canc] ,survivor%ip ,rese>* & ,quality ( ,life ,act ( #bjac4 #b4 ,f9d+s ,congress f9ds z foll[s3 7#a7 ,an e/imat$ #ac1ejj *ildr5 & adolesc5ts "u age #bj are diagnos$ ) canc] ea* ye>4 7#b7 ,9 #aifj1 only #d p]c5t ( *ildr5 ) canc] surviv$ m ?an #e ye>s1 b by #bjaa1 cure rates h increas$ to #gh p]c5t = *ildr5 & adolesc5ts "u age #bj4 7#c7 ,z ( ,june #bjac1 !re are m ?an #cfj1jjj *ildhood canc] survivors liv+ 9 ! ,unit$ ,/ates4 7#d7 ,z _m z #b_/c ( *ildhood canc] survivors are likely to exp]i5ce at lea/ "o late effect ( treatm5t1 ) z _m z #a_/d exp]i5c+ a late effect t is s]i\s or life-?reat5+4 ,! mo/ common late effects ( *ildhood canc] are neurocognitive1 psy*ological1 c>diopulmon>y1 endocr9e1 & musculoskeletal effects & second>y malignancies4 7#e7 ,! late effects ( canc] treatm5t may *ange z treatm5ts evolve1 :i* means t ! monitor+ & treatm5t ( canc] survivors may ne$ to be modifi$ on a r\t9e basis4 7#f7 ,! ,in/itute ( ,m$ic9e1 9 its report on canc] survivor%ip entitl$ ,*ildhood ,canc] ,survivor%ip3 ,improv+ ,c>e & ,quality ( ,life1 /ates t an organiz$ sy/em ( c>e & a me?od ( c>e = p$iatric canc] survivors is ne$$4 #c4 ,canc] survivor%ip programs 7a7 ,canc] survivor%ip programs ,subp>t #a ( "p ,c ( title ,,iv ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhe et seq47 is am5d$ by add+ at ! end ! foll[+3 #dag;,h4 ,pilot programs to explore model sy/ems ( c>e = p$iatric canc] survivors 7a7 ,9 g5]al ,! ,secret>y may make grants to eligible entities to e/abli% pilot programs to develop1 /udy1 or evaluate model sy/ems = monitor+ & c>+ = *ildhood canc] survivors4 7b7 ,eligible entities ,9 ?is section1 ! t]m eligible entity means-- 7#a7 a m$ical s*ool2 7#b7 a *ildr5's hospital2 7#c7 a canc] c5t]2 or 7#d7 any o!r entity ) significant exp]i5ce & exp]tise 9 treat+ survivors ( *ildhood canc]s4 7c7 ,use ( funds ,! ,secret>y may make a grant "u ?is section to an eligible entity only if ! entity agrees-- 7#a7 to use ! grant to e/abli% a pilot program to develop1 /udy1 or evaluate "o or m model sy/ems = monitor+ & c>+ = canc] survivors2 & 7#b7 9 develop+1 /udy+1 & evaluat+ su* sy/ems1 to give special emphasis to-- 7,a7 ! design ( protocols = diff]5t models ( foll[-up c>e1 monitor+1 & o!r survivor%ip programs 7includ+ pe] support & m5tor+ programs72 7,b7 ! developm5t ( v>i\s models = provid+ multidiscipl9>y c>e2 7,c7 ! dissem9ation ( in=mation & ! provision ( tra9+ to heal? c>e provid]s ab\t h[ to provide l+ui/ically & culturally compet5t foll[-up c>e & monitor+ to canc] survivors & _! families2 7,d7 ! developm5t ( support programs to improve ! quality ( life ( canc] survivors2 7,e7 ! design ( sy/ems = ! effective transf] ( treatm5t in=mation & c>e summ>ies f canc] c>e provid]s to o!r heal? c>e provid]s 7includ+ risk factors & a plan = recomm5d$ foll[-up c>e72 7,f7 ! dissem9ation ( ! in=mation & programs describ$ 9 subp>agraphs 7,a7 ?r\gh 7,e7 to o!r heal? c>e provid]s 7includ+ prim>y c>e physicians & int]ni/s7 to canc] survivors & _! families1 :]e appropriate2 & 7,g7 ! developm5t ( initiatives t promote ! coord9ation & effective transition ( c>e betwe5 canc] c>e provid]s1 prim>y c>e physicians1 & m5tal heal? pr(essionals4 7d7 ,au?orization ( appropriations ,!re are au?oriz$ to be appropriat$ to c>ry out ?is section #ae1jjj1jjj = ea* ( fiscal ye>s #bjad ?r\gh #bjah4 #dag;,h-#a4 ,work=ce developm5t collaborative on m$ical & psy*osocial c>e = *ildhood canc] survivors 7a7 ,9 g5]al ,n lat] ?an #a ye> aft] ! date ( enactm5t ( ! ,p$iatric1 ,adolesc5t1 & ,"y ,adult ,canc] ,survivor%ip ,rese>* & ,quality ( ,life ,act ( #bjac1 ! ,secret>y may conv5e a ,work=ce ,developm5t ,collaborative on ,m$ical & ,psy*osocial ,c>e = ,p$iatric ,canc] ,survivors 7ref]r$ to 9 ?is section z ! ,collaborative74 ,! ,collaborative %all be a cross-specialty1 multidiscipl9>y gr\p compos$ ( educators1 consum] & family advocates1 & provid]s ( psy*osocial & biom$ical heal? s]vices4 7b7 ,goals & reports ,! ,collaborative %all submit to ! ,secret>y a report e/abli%+ a plan to meet ! foll[+ objectives = m$ical & psy*osocial c>e work=ce developm5t3 7#a7 ,id5tify+1 ref9+1 & broadly dissem9at+ to heal?c>e educators in=mation ab\t work=ce compet5cies1 models1 & pres]vices curricula relevant to provid+ m$ical & psy*osocial s]vices to individuals ) p$iatric canc]s4 7#b7 ,adapt+ curricula = cont9u+ education ( ! exi/+ work=ce us+ effici5t workplace-bas$ le>n+ approa*es4 7#c7 ,develop+ ! skills ( faculty & o!r tra9]s 9 tea*+ psy*osocial heal? c>e us+ evid5ce-bas$ tea*+ /rategies4 7#d7 ,/r5g!n+ ! emphasis on psy*osocial heal?c>e 9 educational accr$itation /&>ds & pr(essional lic5s+ & c]tification exams by recomm5d+ revisions to ! relevant ov]sight organizations4 7#e7 ,evaluat+ ! effectiv5ess ( pati5t navigators 9 p$iatric canc] survivor%ip c>e4 7#f7 ,evaluat+ ! effectiv5ess ( pe] support programs 9 ! psy*osocial c>e ( p$iatric canc] pati5ts & survivors4 7c7 ,au?orization ( appropriations ,!re are au?oriz$ to be appropriat$ to c>ry out ?is section #e1jjj1jjj = ea* ( fiscal ye>s #bjad ?r\gh #bjah4 4 7b7 ,te*nical am5dm5t 7#a7 ,9 g5]al ,section #c ( ! ,hematological ,canc] ,rese>* ,inve/m5t & ,education ,act ( #bjjb 7,public ,law #ajg-agb2 #aaf ,/at4 #eda7 is am5d$ by /rik+ section #dai;,c & ins]t+ section #dag;,c4 7#b7 ,effective date ,! am5dm5t made by p>agraph 7#a7 %all take effect z if includ$ 9 section #c ( ! ,hematological ,canc] ,rese>* ,inve/m5t & ,education ,act ( #bjjb 7,public ,law #ajg-agb2 #aaf ,/at4 #eda74