,i  #aai? ,,congress  #a/ ,session  ,h4 
,r4 #ecee  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,septemb] #ae1        
#bjbe,mr4 ,co/a 7= himself & ,ms4 ,van  
,duyne7 introduc$ ! foll[+ bill2 :i* 0  
ref]r$ to ! ,committee on ,en]gy &      
,comm]ce  ,a ,,bill  ,to direct !       
,secret>y ( ,heal? & ,human ,s]vices to 
c>ry out activities to promote scre5+s =
 liv] diseases 9 newborns1 & = o!r      
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ z ! ,ian ,kalv9skas ,p$iatric  
,liv] ,canc] ,e>ly ,detection & ,scre5+ 
,act4  #b4 ,f9d+s ,congress f9ds t--    
7#a7 ! life ( ,cali=nia te5ag] ,ian     
,kalv9skas--:o receiv$ a liv]           
transplant1 fulfill$ 8 goal ( int]n+ on 
,capitol ,hill1 & di$ f canc] on ,june  
#bg1 #bjbe--;demon/rates ! urg5t ne$ =  
e>li] detection ( p$iatric liv] disease1
 lifelong foll[-up1 & wid] access to    
donor organs2  7#b7 p$iatric prim>y liv]
 tumors are among ! fa/e/-ris+ *ildhood 
canc]s 9 ! ,unit$ ,/ates1 )             
hepatobla/oma increas+ by approximately 

#b p]c5t p] ye> to & n[ approa*+ #a4g   
cases p] million *ildr52 al?\gh ! ov]all
 #e-ye> relative survival rate f a      
p$iatric prim>y liv] tumor is ab\t #gg  
p]c5t1 survival falls bel[ #fj p]c5t =  
adolesc5ts & = tumors diagnos$ ) di/ant 
meta/ases2  7#c7 bili>y atresia1 a      
neonatal mal=mation ( ! bile ducts      
occurr+ 9 r\ghly #a 9 #ab1jjj live bir?s
 & ! lead+ indication = infant liv]     
transplantation1 %[s transplant-free    
survival t r\ghly d\bles :5 a ,kasai    
porto5t]o/omy is p]=m$ be=e #fj days (  
life2  7#d7 cl9ically validat$ e>ly-w>n+
 tools c detect *ole/atic liv] disease 9
 "t = !rapeutic int]v5tion1 includ+--   
7,a7 r\t9e direct-bilirub9 measurem5t 9 
! newborn heel-/ick panel1 :i* :5 us$ 9 
multi-c5t]1 ,unit$ ,/ates pilots detect$
 #ajj p]c5t ( bili>y-atresia cases )    
m9imal false positives2 &  7,b7 improv$ 
education ( p$iatric prim>y c>e provid]s
 to be al]t to e>ly w>n+ signs ( bili>y 
atresia ) exp$it$ ref]ral to p$iatric   
liv] speciali/s2  7#e7 despite rec5t    

liv] donor allocation re=ms1 m ?an #a 9 
#aj infants & m ?an #a 9 #bj old] *ildr5
 on ! ,unit$ ,/ates liv]-transplant wait
 li/ die be=e receiv+ a graft2  7#f7    
liv+-donor liv] transplantation exp&s ! 
p$iatric organ pool & deliv]s equival5t 
or sup]ior #a-ye>1 #c-ye>1 & #e-ye>     
graft & pati5t survival comp>$ )        
deceas$-donor grafts2 &  7#g7 _m *ildr5 
) r>e liv] diseases1 includ+ liv] canc]1
 are only able to receive timely        
transplants ?r\gh physician advocacy to 
petition = exceptions to ! /&>d li/+    
practices4  #c4 ,p$iatric liv] disease  
outcomes & newborn scre5+ panels  7a7   
,,gao ,/udy ,! ,comptroll] ,g5]al ( !   
,unit$ ,/ates %all conduct a /udy on--  
7#a7 f$]ally fund$ initiatives to       
improve e>ly detection & treatm5t (     
p$iatric liv] tumors1 includ+ education 
programs = heal?c>e provid]s1 z well z  
rese>* to id5tify risk factors &        
innovative !rapeutic /rategies2  7#b7 to
 ! ext5t reliable data are available1   
:at is kn[n ab\t tr5ds 9 p$iatric       

liv]-transplant wait-li/ mortality1     
includ+ a breakd[n by geography1 race1  
insurance /atus1 diagnosis1 & sev]ity ( 
illness2 &  7#c7 to ! ext5t reliable    
data are available1 :at is kn[n ab\t !  
co/ effectiv5ess ( add+ direct-bilirub9 
z a scre5+ te/ = bili>y atresia & o!r   
*ole/atic liv] diseases to ,/ate        
newborn-scre5+ panels4  7b7 ,report to  
,congress ,n lat] ?an "o ye> aft] ! date
 ( enactm5t ( ?is ,act1 ! ,comptroll]   
,g5]al %all transmit to ,congress a     
report on ! results ( ! /udy4  #d4      
,public education program  7a7 ,9 g5]al 
,! ,secret>y ( ,heal? & ,human ,s]vices1
 act+ ?r\gh ! ,adm9i/rator = ! ,heal?   
,res\rces & ,s]vices ,adm9i/ration1 9   
consultation ) ! ,director ( ! ,c5t]s = 
,disease ,control & ,prev5tion 79 ?is   
section ref]r$ to z ! ,,cdc71 %all c>ry 
out a public education program "u :i* ! 
,secret>y %all develop & dissem9ate     
pla9-language mat]ials on-- 7#a7 e>ly   
signs ( p$iatric liv] disease2 &  7#b7 !
 option & safety ( liv+ liv] donation4  

7b7 ,implem5tation ,9 c>ry+ out !       
program "u subsection 7a71 ! ,secret>y  
may--  7#a7 coord9ate implem5tation ( ! 
program ) programs ( ! ,,cdc1 includ+ ! 
,national ,compreh5sive ,canc] ,control 
,program 7or any successor campaign72 & 
7#b7 9 addition to ! program ref]r$ to 9
 p>agraph 7#a71 dissem9ate mat]ials     
develop$ "u ?is section ?r\gh any o!r   
public-education initiative ( !         
,dep>tm5t ( ,heal? & ,human ,s]vices t  
promotes liv]-disease prev5tion1        
p$iatric canc] aw>5ess1 or liv+-organ   
donation4  7c7 ,,gao report to ,congress
 ,n lat] ?an #c ye>s aft] ! date on :i* 
! ,secret>y initiates ! program "u      
subsection 7a71 ! ,comptroll] ,g5]al ( !
 ,unit$ ,/ates %all transmit to         
,congress a report on ! results ( !     
program4  7d7 ,fund+ ,no additional     
funds are au?oriz$ to be appropriat$ = !
 purpose ( c>ry+ out ?is section4