,,ii  #aac? ,,congress  #a/ ,session    
,s4 #adag  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,augu/ #a1 #bjac ,mrs4 
,hagan 7= h]self & ,mr4 ,hat*7 introduc$
 ! foll[+ bill2 :i* 0 read twice &      
ref]r$ to ! ,committee on ,heal?1       
,education1 ,labor1 & ,p5sions  ,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+
 & foll[-up = 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            
,au?orization ( appropriations4  #b4    
,improv$ newborn & *ild scre5+ &        
foll[-up = 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 7h71 by /rik+         
subsection 7c77#b7 ea* place t su*      
appe>s & ins]t+ subsection 7c72 &  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$--    
7#a7 9 ! section head+1 by ins]t+ &     
foll[-up aft] *ild scre5+2  7#b7 9      
subsection 7a71 by ins]t+ foll[-up1 aft]
 ! effectiv5ess ( scre5+12  7#c7 9      
subsection 7b7--  7,a7 9 p>agraph 7#a71 
by ins]t+ asc]ta9m5t1 treatm5t1 aft] !  
effectiv5ess ( scre5+1 c\nsel+12  7,b7 9
 p>agraph 7#b7--  7i7 by ins]t+         
asc]ta9m5t1 treatm5t1 aft] !            
effectiv5ess ( scre5+1 c\nsel+12 &  7ii7
 by /rik+ or at ! end2  7,c7 9 p>agraph 
7#c71 by /rik+ ! p]iod at ! end & ins]t+
 a semicolon2 &  7,d7 by add+ at ! end !
 foll[+3  7#d7 ! availability &         
effectiv5ess ( foll[-up c>e = newborns &
 _! families aft] scre5+ & diagnosis2   
7#e7 ! co/s & effectiv5ess ( newborn    
scre5+1 evaluation & int]v5tion         
programs1 & surveillance sy/ems conduct$
 by ,/ate-bas$ programs 9 ord] to answ] 
issues ( importance to ,/ate & national 
policymak]s2  7#f7 ! effectiv5ess (     
newborn scre5+ foll[-up & int]v5tion    

programs ?r\gh ! assessm5t ( ! heal? &  
developm5t ( *ildr5 at s*ool age & z "y 
adults2  7#g7 ! level ( data %>+ reg>d+ 
newborn scre5+ ) ,/ate-bas$ bir? defects
 & developm5tal disabilities monitor+   
programs2  7#h7 ! coord9ation (         
surveillance activities1 includ+--  7,a7
 /&>diz$ data collection & report+2 &   
7,b7 use ( electronic heal? records2    
7#i7 ! facilitation ( quality improvem5t
 9 treatm5t & disease managem5t bas$ on 
gaps 9 s]vices or c>e id5tifi$ by       
longitud9al track+ sy/ems2 &  7#aj7 !   
utilization ( data f longitud9al track+ 
sy/ems to support ! developm5t &        
evaluation ( evid5ce-bas$ guidel9es =   
diagnosis1 treatm5t1 & disease          
managem5t4  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? impact1 includ+ ! 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  7iii7 9   
subp>agraph 7,j71 by /rik+ & at ! end2 &
  7iv7 9 subp>agraph 7,k71 by /rik+ !   
p]iod & ins]t+ 2 &2  7#b7 9 subsection  
7d7--  7,a7 9 p>agraph 7#a71 by /rik+   
#ahj & ins]t+ #fj2  7,b7 9 p>agraph     
7#b71 by /rik+ ,newborn ,scre5+ ,saves  
,lives ,act ( #bjjh & ins]t ,newborn    
,scre5+ ,saves ,lives ,reau?orization   
,act ( #bjac2 &  7,c7 by add+ at ! end !
 foll[+3  7#d7 ,priority review  7,a7 ,9
 g5]al ,= ea* nom9ation to ! recomm5d$  
uni=m scre5+ panel t meets ! crit]ia (  
subp>agraph 7,b71 ! ,advisory ,committee
 on ,h]itable ,disord]s 9 ,newborns &   
,*ildr5 %all provide a priority review z
 describ$ 9 ?is p>agraph & subject to ! 

deadl9es 9 subp>agraph 7,c74  7,b7      
,crit]ia = priority review ,! ,advisory 
,committee on ,h]itable ,disord]s 9     
,newborns & ,*ildr5 %all provide a      
priority review ) respect to a nom9ation
 to ! recomm5d$ uni=m scre5+ panel t    
meets ea* ( ! foll[+ crit]ia3  7i7 ,a   
human drug application1 z def9$ 9       
section #gce7a7 ( ! ,f$]al ,food1 ,drug1
 & ,cosmetic ,act 7#ba ,u4,s4,c4        
#cgi;g7#a771 has be5 submitt$ to !      
,secret>y = treatm5t ( su* disease or   
condition4  7ii7 ,! application describ$
 9 clause 7i7 has be5 grant$ priority   
review or has receiv$ fa/ track or      
break?r\gh !rapy designations by !      
,secret>y z describ$ 9 section          
#ebi7;a77#a7 ( ! ,f$]al ,food1 ,drug1 & 
,cosmetic ,act 7#ba ,u4,s4,c4           
#cfj;ff7a77#a774  7,c7 ,deadl9es =      
priority review ,! ,advisory ,committee 
on ,h]itable ,disord]s 9 ,newborns &    
,*ildr5 %all vote on ! nom9at$ condition
 t is "u priority review )9 #h mon?s ( !
 lat] (--  7i7 ! date on :i* ! ,advisory

 ,committee ref]s ! nom9ation to !      
condition review workgr\p2 or  7ii7 !   
date ( ! approval1 by ! ,food & ,drug   
,adm9i/ration1 ( ! treatm5t associat$ ) 
! nom9ation to ! recomm5d$ uni=m scre5+ 
panel4  7,d7 ,failure to act ,if !      
,secret>y fails to act on a             
recomm5dation )9 ! "t p]iod provid$ = 9 
p>agraph 7#a71 ! ,secret>y %all adopt ! 
recomm5dation & include ! scre5+        
recomm5d$ by ! ,advisory ,committee on  
,h]itable ,disord]s 9 ,newborns &       
,*ildr5 9 ! recomm5d$ uni=m scre5+      
panel4  7,e7 ,o!r reviews ,= ea*        
nom9ation to ! recomm5d$ uni=m scre5+   
panel t does n meet ! crit]ia (         
subp>agraph 7,b71 ! ,advisory ,committee
 on ,h]itable ,disord]s 9 ,newborns &   
,*ildr5 %all provide = a review & vote  
on ! nom9at$ condition t is "u review )9
 #aj mon?s ( ! date on :i* ! ,advisory  
,committee ref]r$ ! nom9ation to !      
condition review workgr\p4  2  7#c7 by  
r$esignat+ subsections 7f7 & 7g7 z      
subsections 7g7 & 7h71 respectively2    

7#d7 by ins]t+ aft] subsection 7e7 !    
foll[+ new subsection3  7f7 ,meet+s ,!  
,advisory ,committee %all meet at lea/  
#d times ea* cal5d> ye> ) at lea/ #b    
meet+s 9 p]son4  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 dissem9ate available evid5ce-in=m$ 
guidel9es relat$ to 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    
,au?orization ( appropriations ,"p ,a ( 
title ,,xi ( ! ,public ,heal? ,s]vice   
,act is am5d$ by add+ at ! end1 !       

foll[+3  #aaag4 ,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          
#ah1ccd1jjj = ea* ( fiscal ye>s #bjad   
?r\gh #bjah2 &  7#b7 to c>ry out section
 #aaac1 #g1ejj1jjj = ea* ( fiscal ye>s  
#bjad ?r\gh #bjah4  4