,i  #aac? ,,congress  #a/ ,session  ,h4 
,r4 #abha  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,m>* #bj1 #bjac ,ms4  
,roybal-,all>d 7= h]self & ,mr4         
,simpson7 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       
programs "u "p ,a ( title ,,xi ( su*    
,act4  #a4 ,%ort title2 table ( cont5ts 
7a7 ,%ort title ,?is ,act may be cit$ z 
! ,newborn ,scre5+ ,saves ,lives        
,reau?orization ,act ( #bjac4  7b7      
,table ( cont5ts ,! table ( cont5ts (   
?is ,act is z foll[s3  ,sec4 #a4 ,%ort  
title2 table ( cont5ts4 ,sec4 #b4       
,improv$ newborn & *ild scre5+ =        
h]itable disord]s4 ,sec4 #c4 ,evaluat+ !
 effectiv5ess ( newborn & *ild scre5+ & 
foll[up programs4 ,sec4 #d4 ,advisory   
committee on h]itable disord]s 9        
newborns & *ildr54 ,sec4 #e4 ,cle>+h\se 
( ,newborn ,scre5+ ,in=mation4 ,sec4 #f4
 ,laboratory quality4 ,sec4 #g4         
,int]ag5cy ,coord9at+ ,committee on     

,newborn & ,*ild ,scre5+4 ,sec4 #h4     
,national cont+5cy plan = newborn       
scre5+4 ,sec4 #i4 ,hunt] ,kelly ,rese>* 
,program4 ,sec4 #aj4 ,newborn scre5+    
surveillance1 foll[up1 & appli$ rese>*4 
,sec4 #aa4 ,au?orization (              
appropriations4  #b4 ,improv$ newborn & 
*ild scre5+ = h]itable disord]s ,section
 #aaji ( ! ,public ,heal? ,s]vice ,act  
7#db ,u4,s4,c4 #cjj;b-#h7 is am5d$--    
7#a7 9 subsection 7a7--  7,a7 9 ! matt] 
prec$+ p>agraph 7#a71 by /rik+ & 9      
consultation ) ! ,advisory ,committee & 
ins]t+ & tak+ into consid]ation !       
recomm5dations ( ! ,advisory ,committee2
  7,b7 9 p>agraph 7#b71 by /rik+ scre5+ 
& tra9+ & ins]t+ scre5+1 c\nsel+1 &     
tra9+2 &  7,c7 9 p>agraph 7#d71 by /rik+
 treatm5t & ins]t+ foll[up & treatm5t2  
7#b7 9 subsection 7b7--  7,a7 9 p>agraph
 7#d71 by /rik+ or at ! end2  7,b7 by   
r$esignat+ p>agraph 7#e7 z p>agraph     
7#g72 &  7,c7 by ins]t+ aft] p>agraph   
7#d7 ! foll[+3  7#e7 a heal? pr(essional
 organization2  7#f7 an e>ly *ildhood   

heal? sy/em2 or  2 &  7#c7 by /rik+     
subsection 7j7 7relat+ to au?orization (
 appropriations74  #c4 ,evaluat+ !      
effectiv5ess ( newborn & *ild scre5+ &  
foll[up programs ,section #aaaj ( !     
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#i7 is am5d$--  7#a7 9 
! section head+1 by ins]t+ & foll[up    
aft] *ild scre5+2  7#b7 9 subsection    
7a71 by ins]t+ foll[up1 aft] !          
effectiv5ess ( scre5+12  7#c7 9         
subsection 7b7--  7,a7 9 p>agraph 7#a71 
by ins]t+ asc]ta9m5t1 treatm5t1 aft] !  
effectiv5ess ( scre5+1 c\nsel+12  7,b7 9
 p>agraph 7#b7--  7i7 by ins]t+         
asc]ta9m5t1 treatm5t1 aft] !            
effectiv5ess ( scre5+1 c\nsel+12 &  7ii7
 by /rik+ or at ! end2  7,c7 9 p>agraph 
7#c71 by /rik+ ! p]iod at ! end & ins]t+
 2 or2 &  7,d7 by add+ at ! end !       
foll[+3  7#d7 ! availability &          
effectiv5ess ( treatm5t & foll[up c>e = 
newborns & _! families aft] scre5+ &    
diagnosis4  2 &  7#d7 by /rik+          
subsection 7d7 7relat+ to au?orization (

 appropriations74  #d4 ,advisory        
committee on h]itable disord]s 9        
newborns & *ildr5 ,section #aaaa ( !    
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#aj7 is am5d$--  7#a7 9
 subsection 7b7--  7,a7 9 p>agraph 7#d71
 by /rik+ public heal? impact & ins]t+  
public heal? impact & co/2 &  7,b7 9    
p>agraph 7#f7--  7i7 9 subp>agraph 7,a71
 by /rik+ a*ieve rapid diagnosis &      
ins]t+ a*ieve be/ practices 9 rapid     
diagnosis & appropriate treatm5t2 &     
7ii7 9 subp>agraph 7,d71 by ins]t+ be=e 
! semicolon 1 includ+ in=mation on co/ &
 incid5ce2  7#b7 by r$esignat+          
subsections 7f7 & 7g7 z subsections 7g7 
& 7h71 respectively2  7#c7 by ins]t+    
aft] subsection 7e7 ! foll[+ new        
subsection3  7f7 ,meet+s ,! ,advisory   
,committee %all meet 9 p]son at lea/    
twice ea* ye>4  2  7#d7 by am5d+        
subsection 7g71 z r$esignat$ by p>agraph
 7#b71 to read z foll[s3  7g7           
,cont9uation ( op]ation ( committee     
7#a7 ,9 g5]al ,not)/&+ section #ad ( !  

,f$]al ,advisory ,committee ,act 7#e    
,u4,s4,c4 ,app471 ! ,advisory ,committee
 %all cont9ue to op]ate = ! p]iod beg9n+
 on ! date ( enactm5t ( ! ,newborn      
,scre5+ ,saves ,lives ,reau?orization   
,act ( #bjac & conclud+ at ! end ( !    
fif? fiscal ye> :i* beg9s aft] su* date4
  7#b7 ,cont9uation if n reau?oriz$ ,if 
at ! end ( ! fif? fiscal ye> describ$ 9 
p>agraph 7#a7 ! duration ( ! ,advisory  
,committee has n be5 ext5d$ by /atute-- 
7,a7 ! ,advisory ,committee may be      
consid]$1 = ! purposes ( ! ,f$]al       
,advisory ,committee ,act1 to be an     
advisory committee e/abli%$ by !        
,presid5t or an (fic] ( ! ,f$]al        
,gov]nm5t "u section #i7;a7 ( su* ,act2 
&  7,b7 ! ,secret>y may r5ew ! ,advisory
 ,committee "u section #ad7;a77#a77;,a7 
( su* ,act4  2 &  7#e7 by /rik+         
subsection 7h7 7relat+ to au?orization (
 appropriations71 z r$esignat$ by       
p>agraph 7#b74  #e4 ,cle>+h\se (        
,newborn ,scre5+ ,in=mation ,section    
#aaab ( ! ,public ,heal? ,s]vice ,act   

7#db ,u4,s4,c4 #cjj;b-#aa7 is am5d$--   
7#a7 9 subsection 7a7--  7,a7 9 p>agraph
 7#b71 by /rik+ 2 & & ins]t+ a          
semicolon2  7,b7 9 p>agraph 7#c71 by    
/rik+ ! p]iod at ! end & ins]t+ a       
semicolon2 &  7,c7 by add+ at ! end !   
foll[+ new p>agraphs3  7#d7 ma9ta9      
curr5t data on ! numb] ( conditions =   
:i* scre5+ is conduct$ 9 ea* ,/ate2 &   
7#e7 e/abli% or dissem9ate guidel9es =  
s]vices & p]sonnel necess>y = foll[up1  
diagnosis1 c\nsel+1 & treatm5t ) respect
 to conditions detect$ by newborn       
scre5+4  2  7#b7 9 subsection           
7b77#d77;,d71 by /rik+ ,newborn ,scre5+ 
,saves ,lives ,act ( #bjjh & ins]t+     
,newborn ,scre5+ ,saves ,lives          
,reau?orization ,act ( #bjac2 &  7#c7 by
 /rik+ subsection 7d7 7relat+ to        
au?orization ( appropriations74  #f4    
,laboratory quality ,section #aaac ( !  
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#ab7 is am5d$--  7#a7 9
 subsection 7a7--  7,a7 by /rik+ !      
subsection enum]ator & head+2 &  7,b7 by

 /rik+ & 9 consultation ) ! ,advisory   
,committee & ins]t+ & tak+ into         
consid]ation ! recomm5dations ( !       
,advisory ,committee2 &  7#b7 by /rik+  
subsection 7b7 7relat+ to au?orization (
 appropriations74  #g4 ,int]ag5cy       
,coord9at+ ,committee on ,newborn &     
,*ild ,scre5+ ,section #aaad ( ! ,public
 ,heal? ,s]vice ,act 7#db ,u4,s4,c4     
#cjj;b-#ac7 is am5d$--  7#a7 9          
subsection 7c71 by /rik+ ! ,adm9i/rator1
 ! ,director ( ! ,ag5cy = ,heal?c>e     
,rese>* & ,quality & ins]t+ !           
,adm9i/rator ( ! ,heal? ,res\rces &     
,s]vices ,adm9i/ration1 ! ,director ( ! 
,ag5cy = ,heal?c>e ,rese>* & ,quality1 !
 ,commission] ( ,food & ,drugs12 &  7#b7
 by /rik+ subsection 7e7 7relat+ to     
au?orization ( appropriations7 & ins]t+ 
! foll[+3  7e7 ,report to congress  7#a7
 ,9 g5]al ,! ,secret>y %all--  7,a7 n   
lat] ?an #a ye> aft] ! date ( enactm5t (
 ! ,newborn ,scre5+ ,saves ,lives       
,reau?orization ,act ( #bjac1 submit to 
! ,heal?1 ,education1 ,labor1 & ,p5sions

 ,committee ( ! ,s5ate & ! ,en]gy &     
,comm]ce ,committee ( ! ,h\se (         
,repres5tatives a report on activities  
relat$ to--  7i7 newborn scre5+2 &  7ii7
 scre5+ *ildr5 :o h or are at risk =    
h]itable disord]s2 &  7,b7 n less ?an e 
#b ye>s1 %all submit to su* committees  
an updat$ v]sion ( su* report4  7#b7    
,cont5ts ,! report submitt$ "u          
subsection 7a7 %all conta9 a description
 (--  7,a7 ! implem5tation ( sections   
#aaaa ?r\gh #aaaf;,b1 includ+ ?is       
section2 &  7,b7 ! am\nts exp5d$ on su* 
implem5tation4  4  #h4 ,national        
cont+5cy plan = newborn scre5+ ,section 
#aaae7;a7 ( ! ,public ,heal? ,s]vice    
,act 7#db ,u4,s4,c4 #cjj;b-#ad7;a77 is  
am5d$ by add+ at ! end ! foll[+3 ,! plan
 %all be updat$ z ne$$ & at lea/ e five 
ye>s44  #i4 ,hunt] ,kelly ,rese>*       
,program ,section #aaaf7;a77#a7 ( !     
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#ae7;a77#a77 is am5d$--
  7#a7 9 subp>agraph 7,b71 by /rik+ 2 & 
& ins]t+ a semicolon2  7#b7 by          

r$esignat+ subp>agraph 7,c7 z           
subp>agraph 7,e72 &  7#c7 by ins]t+ aft]
 subp>agraph 7,b7 ! foll[+3  7,c7       
provid+ rese>* & data = newborn         
conditions "u review by ! ,advisory     
,committee on ,h]itable ,disord]s 9     
,newborns & ,*ildr5 to be add$ to !     
,recomm5d$ ,uni=m ,scre5+ ,panel2  7,d7 
conduct+ pilot /udies on conditions     
recomm5d$ by ! ,advisory ,committee on  
,h]itable ,disord]s 9 ,newborns &       
,*ildr5 to ensure t scre5+s are ready = 
nationwide implem5tation2 &  4  #aj4    
,newborn scre5+ surveillance1 foll[up1 &
 appli$ rese>* ,! ,public ,heal? ,s]vice
 ,act is am5d$ by ins]t+ aft] section   
#aaaf ( su* ,act 7#db ,u4,s4,c4         
#cjj;b-#ae7 ! foll[+3  #aaaf;,a4        
,newborn scre5+ surveillance1 foll[up1 &
 appli$ rese>*  7a7 ,9 g5]al ,!         
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all aw>d grants to1 or ent] into      
coop]ative agreem5ts )1 eligible        
entities to develop longitud9al foll[up 

& track+ programs = newborn scre5+4  7b7
 ,program ,longitud9al foll[up & track+ 
programs develop$ ?r\gh a grant "u      
subsection 7a7 %all incorporate /&>diz$ 
proc$ures = data managem5t & program    
effectiv5ess & co/s1 su* z--  7#a7 /udy+
 ! co/s & effectiv5ess ( newborn scre5+1
 evaluation & int]v5tion programs1 &    
surveillance sy/ems conduct$ by         
,/ate-bas$ programs 9 ord] to answ]     
issues ( importance to ,/ate & national 
policymak]s2  7#b7 /udy+ ! effectiv5ess 
( newborn scre5+ foll[up & int]v5tion   
programs by assess+ ! heal? & developm5t
 ( *ildr5 at s*ool age & z "y adults2   
7#c7 promot+ ! %>+ ( data reg>d+ newborn
 scre5+ ) ,/ate-bas$ bir? defects &     
developm5tal disabilities monitor+      
programs2  7#d7 ensur+ coord9ation (    
surveillance activities1 includ+--  7,a7
 /&>diz$ data collection & report+2 &   
7,b7 use ( electronic heal? records2    
7#e7 facilitat+ quality improvem5t 9    
treatm5t & disease managem5t bas$ on    
gaps 9 s]vices or c>e id5tifi$ by       

longitud9al track+ sy/ems2 &  7#f7      
utiliz+ data f longitud9al track+ sy/ems
 to support ! developm5t & evaluation ( 
evid5ce-bas$ guidel9es = diagnosis1     
treatm5t1 & disease managem5t4  7c7     
,eligible entity ,9 ?is section1 ! t]m  
eligible entity means--  7#a7 a ,/ate or
 a political subdivision ( a ,/ate2     
7#b7 a consortium ( #b or m ,/ates or   
subdivisions describ$ 9 p>agraph 7#a72  
7#c7 a heal? facility or program op]at$ 
by or pursuant to a contract )1 or a    
grant f1 ! ,indian ,heal? ,s]vice2 or   
7#d7 any o!r entity ) appropriate       
exp]tise 9 newborn scre5+1 z det]m9$ by 
! ,secret>y4  4  #aa4 ,au?orization (   
appropriations ,! ,public ,heal? ,s]vice
 ,act is am5d$ by ins]t+ aft] section   
#aaaf;,a ( su* ,act1 z add$ by section  
#aj ( ?is ,act1 ! foll[+3  #aaaf;,b4    
,au?orization ( appropriations = newborn
 scre5+ programs & activities ,!re are  
au?oriz$ to be appropriat$--  7#a7 to   
c>ry out sections #aaji1 #aaaj1 #aaaa1 &
 #aaab1 #ac1ccd1jjj = ea* ( fiscal ye>s 

#bjad ?r\gh #bjah2  7#b7 to c>ry out    
section #aaac1 #g1ejj1jjj = ea* ( fiscal
 ye>s #bjad ?r\gh #bjah2 &  7#c7 to c>ry
 out section #aaaf;,a1 #e1jjj1jjj = ea* 
( fiscal ye>s #bjad ?r\gh #bjah4  4