#aac? ,,congress  #b;d ,session  ,s4    
#adag  ,,an ,,act  ,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 quality
 & surveillance4,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,sec4 #aa4 ,reports to   
,congress  #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#a7-- 7i7 by 
/rik+ subsection 7j7 & ins]t+ section   
#aaag2 &  7ii7 by /rik+ & 9 consultation
 ) ! ,advisory ,committee & ins]t+ &    
tak+ into consid]ation ! exp]tise ( !   
,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#c71 by /rik+ & at ! end2     
7,d7 9 p>agraph 7#d7-- 7i7 by /rik+     
treatm5t & ins]t+ foll[-up & treatm5t2 &
  7ii7 by /rik+ ! p]iod & ins]t+ 2 &2 & 
7,e7 by add+ at ! end ! foll[+3  7#e7 to
 improve ! timely collection1 deliv]y1  
receipt1 & scre5+ ( specim5s1 & ! timely
 diagnosis ( h]itable disord]s 9        
newborns4  2  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$--    
7#a7 9 ! section head+1 by ins]t+ &     
foll[-up aft] *ild scre5+2  7#b7 9      
subsection 7a71 by /rik+ ( scre5+1 &    
ins]t+ 1 includ+ ) respect to timel9ess1
 ( scre5+1 foll[-up12  7#c7 9 subsection
 7b7-- 7,a7 9 p>agraph 7#a7-- 7i7 by    
/rik+ c\nsel+1 te/+ & ins]t+ treatm5t1  
c\nsel+1 te/+1 foll[-up12 &  7ii7 by    
ins]t+ be=e ! semicolon ! foll[+3 1     
includ+1 z appropriate1 ?r\gh !         
assessm5t ( heal? & developm5t outcomes 
= su* *ildr5 ?r\gh adolesc5ce2  7,b7 9  
p>agraph 7#b7-- 7i7 by /rik+ c\nsel+1   
te/+ & ins]t+ treatm5t1 c\nsel+1 te/+1  
foll[-up12 &  7ii7 by /rik+ or at ! end2
  7,c7 9 p>agraph 7#c71 by /rik+ ! p]iod
 at ! end & ins]t+ a semicolon2 &  7,d7 
by add+ at ! end ! foll[+3  7#d7 me?ods 
t may be id5tifi$ to improve quality 9 !

 diagnosis1 treatm5t1 & disease         
managem5t ( h]itable disord]s bas$ on   
gaps 9 s]vices or c>e2 or  7#e7 me?ods  
or be/ practices by :i* ! eligible      
entities describ$ 9 section #aaji c     
a*ieve ! timely collection1 deliv]y1    
receipt1 & scre5+ ( newborn scre5+      
specim5s1 & ! timely diagnosis (        
h]itable disord]s 9 newborns4  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$-- 7#a7 9 
subsection 7b7-- 7,a7 by r$esignat+     
p>agraphs 7#d7 ?r\gh 7#f7 z p>agraphs   
7#e7 ?r\gh 7#g71 respectively2  7,b7 by 
ins]t+ aft] p>agraph 7#c71 ! foll[+3    
7#d7 provide te*nical assi/ance1 z      
appropriate1 to individuals &           
organizations reg>d+ ! submission (     
nom9ations to ! uni=m scre5+ panel1     
includ+ prior to ! submission ( su*     
nom9ations2  2  7,c7 9 p>agraph 7#e7 7z 

s r$esignat$71 by ins]t+ 1 includ+ ! co/
 aft] public heal? impact2 &  7,d7 9    
p>agraph 7#g7 7z s r$esignat$7-- 7i7 9  
subp>agraph 7,a71 by /rik+ a*ieve rapid 
diagnosis & ins]t+ a*ieve be/ practices 
9 rapid diagnosis & appropriate         
treatm5t2  7ii7 9 subp>agraph 7,d71 by  
ins]t+ be=e ! semicolon 1 includ+       
in=mation on co/ & incid5ce2  7iii7 9   
subp>agraph 7,j71 by /rik+ & at ! end2  
7iv7 9 subp>agraph 7,k71 by /rik+ !     
p]iod & ins]t+ 2 &2 &  7v7 by add+ at ! 
end ! foll[+3  7,l7 ! timely collection1
 deliv]y1 receipt1 & scre5+ ( specim5s  
to be te/$ = h]itable disord]s 9        
newborns 9 ord] to ensure rapid         
diagnosis & foll[-up4  2  7#b7 9        
subsection 7d7-- 7,a7 9 p>agraph 7#a7-- 
7i7 by /rik+ #ahj & ins]t+ #abj2 &  7ii7
 by add+ at ! end ! foll[+3 ,if !       
,secret>y is unable to make a           
det]m9ation to adopt or reject su*      
recomm5dation )9 su* #abj-;day p]iod1 ! 
,secret>y %all notify ! ,advisory       
,committee & ! appropriate committees ( 

,congress ( su* det]m9ation toge!r ) an 
explanation = :y ! ,secret>y 0 unable to
 comply )9 su* #abj-;day p]iod1 z well z
 a plan ( action = consid]ation ( su*   
p5d+ recomm5dations42  7,b7 by /rik+    
p>agraph 7#b72  7,c7 by r$esignat+      
p>agraph 7#c7 z p>agraph 7#b72 &  7,d7  
by add+ at ! end ! foll[+3  7#c7        
,deadl9e = review ,= ea* nom9ation to ! 
recomm5d$ uni=m scre5+ panel1 !         
,advisory ,committee on ,h]itable       
,disord]s 9 ,newborns & ,*ildr5 %all    
review & vote on ! nom9at$ condition )9 
#i mon?s ( ! date on :i* ! ,advisory    
,committee ref]r$ ! nom9ation to !      
condition review workgr\p4  2  7#c7 by  
r$esignat+ subsections 7f7 & 7g7 z      
subsections 7g7 & 7h71 respectively2    
7#d7 by ins]t+ aft] subsection 7e7 !    
foll[+ new subsection3  7f7 ,meet+s ,!  
,advisory ,committee %all meet at lea/  
#d times ea* cal5d> ye>1 or z subject to
 ! discretion ( ! ,designat$ ,f$]al     
,(fic] 9 consultation ) ! ,*air4  2     
7#e7 9 subsection 7g7 7z s r$esignat$71 

by /rik+ ,newborn ,scre5+ ,saves ,lives 
,act ( #bjjh & ins]t+ ,newborn ,scre5+  
,saves ,lives ,reau?orization ,act (    
#bjac2 &  7#f7 by /rik+ subsection 7h7  
7relat+ to au?orization (               
appropriations71 z r$esignat$ by        
p>agraph 7#c74  #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$--   
7#a7 9 subsection 7a7-- 7,a7 9 p>agraph 
7#b71 by /rik+ 2 & & ins]t+ a semicolon2
  7,b7 9 p>agraph 7#c7-- 7i7 by /rik+   
data & ins]t+ in=mation2 &  7ii7 by     
/rik+ ! p]iod at ! end & ins]t+ a       
semicolon2 &  7,c7 by add+ at ! end !   
foll[+ new p>agraphs3  7#d7 ma9ta9      
curr5t in=mation on ! numb] ( conditions
 = :i* scre5+ is conduct$ 9 ea* ,/ate2 &
  7#e7 dissem9ate available evid5ce-bas$
 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 9 subsection 7c7-- 7,a7 by /rik+   
develop+ ! cle>+h\se & ins]t+ c>ry+ out 
activities2 &  7,b7 by /rik+ cle>+h\se  
m9imizes & ins]t+ activities m9imize2 & 
7#d7 by /rik+ subsection 7d7 7relat+ to 
au?orization ( appropriations74  #f4    
,laboratory quality & surveillance      
,section #aaac ( ! ,public ,heal?       
,s]vice ,act 7#db ,u4,s4,c4 #cjj;b-#ab7 
is am5d$-- 7#a7 9 ! section head+1 by   
ins]t+ & surveillance be=e ! p]iod2     
7#b7 9 subsection 7a7-- 7,a7 by /rik+ ! 
subsection enum]ator & head+2  7,b7 9 ! 
matt] prec$+ p>agraph 7#a71 by /rik+ & 9
 consultation ) ! ,advisory ,committee &
 ins]t+ & tak+ into consid]ation !      
exp]tise ( ! ,advisory ,committee2  7,c7
 9 p>agraph 7#a7-- 7i7 by ins]t+        
timel9ess = process+ su* te/s1 aft]     
newborn scre5+ te/s2 &  7ii7 by /rik+ & 
at ! end2 &  7,d7 9 p>agraph 7#b71 by   
/rik+ ! p]iod & ins]t+ 2 &2 &  7#c7 by  
/rik+ subsection 7b7 7relat+ to         

au?orization ( appropriations7 & ins]t+ 
! foll[+3  7b7 ,surveillance activities 
,! ,secret>y1 act+ ?r\gh ! ,director ( !
 ,c5t]s = ,disease ,control &           
,prev5tion1 & tak+ into consid]ation !  
exp]tise ( ! ,advisory ,committee on    
,h]itable ,disord]s 9 ,newborns &       
,*ildr5 e/abli%$ "u section #aaaa1 may  
provide1 z appropriate1 = ! coord9ation 
( surveillance activities1 includ+--    
7#a7 ?r\gh /&>diz$ data collection &    
report+1 z well z ! use ( electronic    
heal? records2 &  7#b7 by promot+ data  
%>+ reg>d+ newborn scre5+ ) ,/ate-bas$  
bir? defects & developm5tal disabilities
 monitor+ programs4  4  #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 ( appropriations74  #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 by    
provid+ rese>* f9d+s & 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$-- 7#a7 to c>ry out sections 
#aaji1 #aaaj1 #aaaa1 & #aaab1           
#ah1ccd1jjj = ea* ( fiscal ye>s #bjad   
?r\gh #bjah2 &  7#b7 to c>ry out section
 #aaac1 #g1ejj1jjj = ea* ( fiscal ye>s  
#bjad ?r\gh #bjah4  4  #aa4 ,reports to 
,congress  7a7 ,,gao report on timel9ess
 ( newborn scre5+  7#a7 ,9 g5]al ,n lat]
 ?an #b ye>s aft] ! date ( enactm5t (   
?is ,act1 ! ,comptroll] ,g5]al ( !      
,unit$ ,/ates %all submit a report to ! 
,committee on ,heal?1 ,education1 ,labor
 & ,p5sions ( ! ,s5ate & ! ,committee on
 ,en]gy & ,comm]ce ( ! ,h\se (          
,repres5tatives conc]n+ ! timel9ess (   
scre5+ = h]itable disord]s 9 newborns4  

7#b7 ,cont5ts ,! report submitt$ "u     
p>agraph 7#a7 %all include ! foll[+3    
7,a7 ,an analysis ( in=mation reg>d+ !  
timel9ess ( newborn scre5+1 :i* may     
include ! "t elaps$ f bir? to specim5   
collection1 specim5 collection to       
receipt by laboratory1 specim5 receipt  
to report+1 report+ to foll[-up te/+1 & 
foll[-up te/+ to confirm$ diagnosis4    
7,b7 ,a summ>y ( any guidel9es1         
recomm5dations1 or be/ practices        
available to ,/ates & heal? c>e provid]s
 int5d$ to support a timely newborn     
scre5+ sy/em4  7,c7 ,an analysis ( any  
b>ri]s to ma9ta9+ a timely newborn      
scre5+ sy/em :i* may exi/ &             
recomm5dations = address+ su* b>ri]s4   
7b7 ,report by ,secret>y  7#a7 ,9 g5]al 
,! ,secret>y ( ,heal? & ,human ,s]vices 
%all-- 7,a7 n lat] ?an #a ye> aft] !    
date ( enactm5t ( ! ,newborn ,scre5+    
,saves ,lives ,reau?orization ,act (    
#bjac1 submit to ! ,committee on ,heal?1
 ,education1 ,labor & ,p5sions ( !      
,s5ate & ! ,committee on ,en]gy &       

,comm]ce ( ! ,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 ?is subsection %all conta9 a
 description (-- 7,a7 ! ongo+ activities
 "u sections #aaji1 #aaaj1 & #aaab ?r\gh
 #aaae ( ! ,public ,heal? ,s]vice ,act2 
&  7,b7 ! am\nts exp5d$ on su*          
activities4  ,pass$ ! ,s5ate ,janu>y    
#bi1 #bjad4,secret>y