,i  #aac? ,,congress  #a/ ,session  ,h4 
,r4 #bjeh  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,may #bj1 #bjac ,ms4  
,spei] 7= h]self1 ,mr4 ,rangel1 ,ms4    
,lee ( ,cali=nia1 ,mr4 ,moran1 ,ms4     
,bordallo1 ,mr4 ,mc,caul1 & ,mr4 ,van   
,holl57 introduc$ ! foll[+ bill2 :i* 0  
ref]r$ to ! ,committee on ,en]gy &      
,comm]ce  ,a ,,bill  ,to improve &      
enhance rese>* & programs on *ildhood   
canc] survivor%ip1 & = o!r purposes4    
#a4 ,%ort title ,?is ,act may be cit$ z 
! ,*ildhood ,canc] ,survivors' ,quality 
( ,life ,act ( #bjac4  #b4 ,f9d+s       
,congress f9ds ! foll[+3  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 today1   
cure rates h increas$ to ov] #hj p]c5t =
 *ildr5 & adolesc5ts "u age #bj4  7#c7  
,! population ( survivors ( *ildhood    
canc]s has gr[n dramatically1 to ov]    
#cfj1jjj individuals ( all ages z (     
#bjab4  7#d7 ,z _m z two-?irds (        

*ildhood canc] survivors are likely to  
exp]i5ce at lea/ "o late effect (       
treatm5t1 ) z _m z "o-f\r? 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 ,z a result (       
disp>ities 9 ! deliv]y ( canc] c>e1     
m9ority1 l[-income1 & o!r m$ically      
und]s]v$ *ildr5 are m likely to be      
diagnos$ ) late /age disease1 exp]i5ce  
poor] treatm5t outcomes1 h %ort]        
survival "t ) less quality ( life1 &    
exp]i5ce a sub/antially great]          
likelihood ( canc] dea?4  7#f7 ,! late  
effects ( canc] treatm5t may *ange z    
!rapies evolve1 :i* means t ! monitor+ &
 c>e ( canc] survivors may ne$ to be    
modifi$ on a r\t9e basis4  7#g7 ,despite
 ! int5se /ress caus$ by *ildhood canc]1
 !re is a lack ( /&>diz$ & coord9at$    
psy*osocial c>e = ! *ildr5 & _!         
families1 f ! date ( diagnosis ?r\gh    

treatm5t & survivor%ip4  7#h7 ,!        
,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  7#i7 ,focus$ &
 well-design$ rese>* & pilot heal?      
deliv]y programs c answ] que/ions ab\t !
 optimal ways to provide heal? c>e1     
foll[-up monitor+ s]vices1 & survivor%ip
 c>e to ^? diagnos$ ) *ildhood canc] &  
contribute to improvem5ts 9 ! quality ( 
c>e & quality ( life ( ^? individuals4  
#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;,g4 ,pilot programs to    
explore model sy/ems ( c>e = p$iatric   
canc] survivors  7a7 ,9 g5]al ,!        
,secret>y %all 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 !   
foll[+3  7,a7 ,design ( protocols =     
diff]5t models ( foll[-up c>e1 monitor+1
 & o!r survivor%ip programs 7includ+ pe]
 support & m5tor+ programs74  7,b7      
,developm5t ( v>i\s models = provid+    
multidiscipl9>y c>e4  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 & _! families4  7,d7          
,developm5t ( support programs to       
improve ! quality ( life ( canc]        
survivors4  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>e74  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 appropriate4  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 ,to  
c>ry out ?is section1 !re is au?oriz$ to
 be appropriat$ #ae1jjj1jjj = ea* (     
fiscal ye>s #bjae ?r\gh #bjai4          
#dag;,g-#a4 ,work=ce developm5t         
collaborative on m$ical & psy*osocial   

c>e = *ildhood canc] survivors  7a7 ,9  
g5]al ,! ,secret>y %all1 n lat] ?an #a  
ye> aft] ! date ( enactm5t ( ?is ,act1  
conv5e a ,work=ce ,developm5t           
,collaborative on ,m$ical & ,psy*osocial
 ,c>e = ,p$iatric ,canc] ,survivors     
7ref]r$ to 9 ?is p>agraph 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$ical &  
psy*osocial s]vices to p]sons ) p$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$iatric 
canc] pati5ts & survivors4  7c7         
,au?orization ( appropriations ,to c>ry 
out ?is section1 !re is au?oriz$ to be  
appropriat$ #e1jjj1jjj = ea* ( fiscal   
ye>s #bjae ?r\gh #bjai4  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  #d4 ,grants to       
improve c>e = p$iatric canc] survivors  
,section #dag;,e ( ! ,public ,heal?     
,s]vice ,act 7#db ,u4,s4,c4 #bhe;a-#aa7 
is am5d$--  7#a7 9 ! head+1 by /rik+    
rese>* & aw>5ess & ins]t+ rese>*1       
aw>5ess1 & survivor%ip2  7#b7 9         
subsection 7a7--  7,a7 by r$esignat+    
p>agraph 7#b7 z p>agraph 7#d72 &  7,b7  
by ins]t+ aft] p>agraph 7#a7 ! foll[+3  
7#b7 ,rese>* on causes ( heal?          
disp>ities 9 p$iatric canc] survivor%ip 
7,a7 ,grants ,! ,director ( ,,nih1 act+ 
?r\gh ! ,director ( ! ,in/itute1 9      
coord9ation ) ongo+ rese>* activities1  
%all make grants to entities to conduct 
rese>* relat+ to--  7i7 ne$s & outcomes 
( p$iatric canc] survivors )9 m9ority or
 o!r m$ically und]s]v$ populations2     
7ii7 heal? disp>ities 9 p$iatric canc]  
survivor%ip outcomes )9 m9ority or o!r  

m$ically und]s]v$ populations2  7iii7   
b>ri]s t p$iatric canc] survivors )9    
m9ority or o!r m$ically und]s]v$        
populations face 9 receiv+ foll[-up c>e2
 &  7iv7 familial1 socioeconomic1 & o!r 
environm5tal factors & ! impact ( su*   
factors on treatm5t outcomes &          
survivor%ip4  7,b7 ,balanc$ approa* ,9  
mak+ grants = rese>* "u subp>agraph     
7,a77i7 on p$iatric canc] survivors )9  
m9ority or o!r m$ically und]s]v$        
populations1 ! ,director ( ,,nih %all   
ensure t su* rese>* addresses bo? !     
physical & ! psy*ological ne$s ( su*    
survivors4  7#c7 ,rese>* on late effects
 & foll[-up c>e = p$iatric canc]        
survivors ,! ,director ( ,,nih1 9       
coord9ation ) ongo+ rese>* activities1  
%all conduct or support rese>* on       
foll[-up c>e = p$iatric canc] survivors1
 ) special emphasis giv5 to--  7,a7 !   
developm5t ( indicators us$ = long-t]m  
pati5t track+ & analysis ( ! late       
effects ( canc] treatm5t = p$iatric     
canc] survivors2  7,b7 ! id5tification (

 risk factors associat$ ) ! late effects
 ( canc] treatm5t2  7,c7 ! id5tification
 ( pr$ictors ( neurocognitive &         
psy*osocial outcomes2  7,d7 initiatives 
to protect canc] survivors f ! late     
effects ( canc] treatm5t2  7,e7         
transitions 9 c>e = p$iatric canc]      
survivors2  7,f7 tra9+ ( pr(essionals to
 provide l+ui/ically & culturally       
compet5t foll[-up c>e to p$iatric canc] 
survivors2 &  7,g7 diff]5t models (     
foll[-up c>e4  2 &  7#c7 9 subsection   
7d7--  7,a7 by /rik+ ?is section & &    
ins]t+ subsection 7a77#a71 subsection   
7b71 &2  7,b7 by /rik+ #bjac & ins]t+   
#bjai2 &  7,c7 by ins]t+ aft] ! second  
s5t5ce ! foll[+3 ,= purposes ( c>ry+ out
 subsections 7a77#b7 & 7a77#c71 !re is  
au?oriz$ to be appropriat$ #aj1jjj1jjj =
 ea* ( fiscal ye>s #bjae ?r\gh #bjai44  
#e4 ,compreh5sive long-t]m foll[-up     
s]vices = p$iatric canc] survivors ,"p  
,b ( title ,,iii ( ! ,public ,heal?     
,s]vice ,act 7#db ,u4,s4,c4 #bdc et     
seq47 is am5d$ by ins]t+ aft] section   

#cag,t ! foll[+3  #cag,u4 ,cl9ics =     
compreh5sive long-t]m foll[-up s]vices =
 p$iatric canc] survivors  7a7 ,9 ,g5]al
 ,! ,secret>y %all make grants to       
eligible entities to e/abli% & op]ate a 
cl9ic = compreh5sive long-t]m foll[-up  
s]vices = p$iatric canc] survivors4  7b7
 ,eligible entities ,9 ?is section1 !   
t]m eligible entity means--  7#a7 a     
s*ool ( m$ic9e2  7#b7 a *ildr5's        
hospital2  7#c7 a canc] c5t]2 or  7#d7  
any o!r entity det]m9$ by ! ,secret>y to
 h significant exp]i5ce & exp]tise 9--  
7,a7 treat+ p$iatric1 adolesc5t1 & "y   
adult canc]s2 or  7,b7 integrat+ m$ical 
& psy*osocial s]vices = p$iatric1       
adolesc5t1 & "y adult canc] survivors & 
_! families4  7c7 ,use ( funds ,!       
,secret>y may make a grant "u ?is       
section to an eligible entity only if ! 
entity agrees to use ! grant to pay co/s
 incurr$ dur+ ! fir/ #d ye>s ( e/abli%+ 
& op]at+ a cl9ic = compreh5sive1        
long-t]m1 foll[-up s]vices = p$iatric   
canc] survivors1 :i* may include ! co/s 

(--  7#a7 provid+ m$ical & psy*osocial  
foll[-up s]vices1 includ+ coord9ation ) 
! pati5t's prim>y c>e provid] &         
oncologi/ 9 ord] to ensure t ! m$ical   
ne$s ( survivors are address$1 & provid+
 l+ui/ically & culturally compet5t      
in=mation to survivors & families )     
appropriate outrea* to m$ically und]s]v$
 populations2  7#b7 ! con/ruction1      
expansion1 & mod]nization ( facilities2 
7#c7 acquir+ & leas+ facilities &       
equipm5t 7includ+ pay+ ! co/s ( amortiz+
 ! pr9cipal (1 & pay+ ! int]e/ on1 loans
 = su* facilities & equipm5t7 to support
 or fur!r ! op]ation ( ! grantee2 &     
7#d7 ! con/ruction & /ructural          
modification 7includ+ equipm5t          
acquisition7 ( facilities to p]mit !    
integrat$ deliv]y ( ongo+ m$ical &      
psy*osocial c>e to p$iatric canc]       
survivors & _! families at a s+le s]vice
 site4  7d7 ,au?orization (             
appropriations ,to c>ry out ?is section1
 !re is au?oriz$ to be appropriat$      
#aj1jjj1jjj = ea* ( fiscal ye>s #bjae   

?r\gh #bjai4  4