,,ii  #aaf? ,,congress  #a/ ,session    
,s4 #baeh  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,july #ah1 #bjai ,ms4  
,hassan 7= h]self & ,mr4 ,g>dn]7        
introduc$ ! foll[+ bill2 :i* 0 read     
twice & ref]r$ to ! ,committee on       
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to improve c]ta9 programs ( 
! ,dep>tm5t ( ,heal? & ,human ,s]vices )
 respect to h]itable disord]s4  #a4     
,%ort title  ,?is ,act may be cit$ z !  
,! ,newborn ,scre5+ ,saves ,lives       
,reau?orization ,act ( #bjai4  #b4      
,am5dm5ts  7a7 ,improv$ newborn & *ild  
scre5+ = h]itable disord]s ,section     
#aaji7;a77#c7 ( ! ,public ,heal? ,s]vice
 ,act 7#db ,u4,s4,c4 #cjj;b-#h7;a77#c77 
is am5d$-- 7#a7 by /rik+ develop &      
deliv] educational programs 7at         
appropriate lit]acy levels7 & ins]t+    
develop1 deliv]1 & assess ! impact (    
educational programs 7) v>y+ levels (   
in=mation & at appropriate lit]acy      
levels72 &  7#b7 by /rik+ & specialty   
s]vices & ins]t+ specialty s]vices1     

rese>*-relat$ pilot /udies1 & long-t]m  
c>e4  7b7 ,ext5sion ( advisory committee
 on h]itable disord]s 9 newborns &      
*ildr5 ,section #aaaa7;g7 ( ! ,public   
,heal? ,s]vice ,act 7#db ,u4,s4,c4      
#cjj;b-#aj7;g77 is am5d$ by /rik+ #bjai 
ea* place x appe>s & ins]t+ #bjbd4  7c7 
,te*nical am5dm5ts ,title ,,xi ( !      
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#a et seq47 is am5d$-- 
7#a7 9 ! section head+ ( section #aaaj1 
by /rik+ ,foll[up & ins]t+ ,foll[-,up2  
7#b7 9 sections #aaji1 #aaaj1 & #aaaa1  
by /rik+ foll[up ea* place su* t]m      
appe>s & ins]t+ foll[-up2 &  7#c7 9     
p>agraphs 7#a7 & 7#b7 ( section         
#aaaj7;b71 by ins]t+ 7includ+ long-t]m  
foll[-up7 be=e 1 or specialty4  7d7     
,cle>+h\se ( newborn scre5+ in=mation   
,subsection 7c7 ( section #aaab ( !     
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #cjj;b-#aa7 is am5d$ to read z
 foll[s3  7c7 ,nonduplication ,9 c>ry+  
out activities "u ?is section1 !        
,secret>y %all ensure t su* activities  

m9imize duplication & complem5t o!r     
exi/+ ,f$]al newborn scre5+-relat$      
in=mation-%>+ activities4  4  7e7       
,laboratory quality & surveillance      
,section #aaac ( ! ,public ,heal?       
,s]vice ,act 7#db ,u4,s4,c4 #cjj;b-#ab7 
is am5d$-- 7#a7 9 subsection 7a7--  7,a7
 9 p>agraph 7#a7-- 7i7 by /rik+ p]=mance
 evaluation s]vices & ins]t+ developm5t 
( new scre5+ te/s2 &  7ii7 by /rik+ 2 & 
& ins]t+ a semicolon2  7,b7 9 p>agraph  
7#b7--  7i7 by /rik+ p]=mance te/       
mat]ials & ins]t+ te/ p]=mance mat]ials2
 &  7ii7 by /rik+ ! p]iod & ins]t+ 2 &2 
&  7,c7 by add+ at ! end ! foll[+3  7#c7
 p]=mance evaluation s]vices to enhance 
disease detection1 includ+ ! developm5t 
( tools & res\rces to improve data      
analysis1 int]pretation ( te/ results1 &
 dissem9ation ( laboratory be/          
practices4  2 &  7#b7 9 subsection 7b7--
 7,a7 9 p>agraph 7#a71 by /rik+ 2 & &   
ins]t+ a semicolon2  7,b7 9 p>agraph    
7#b71 by /rik+ ! p]iod & ins]t+ 2 &2 &  
7,c7 by add+ at ! end1 ! foll[+3  7#c7  

by assi/+ ,/ates1 z appropriate1 9      
assess+ & conduct+ long-t]m foll[-up &  
assess+ long-t]m outcomes4  4  7f7      
,hunt] ,kelly rese>* program ,section   
#aaaf7;a77#a77;,d7 ( ! ,public ,heal?   
,s]vice ,act 7#db ,u4,s4,c4             
#cjj;b-#ae7;a77#a77;,d77 is am5d$-- 7#a7
 by ins]t+ 1 or ) a high probability (  
be+ recomm5d by1 aft] recomm5d$ by2 &   
7#b7 by /rik+ to ensure t scre5+s are   
ready = nationwide implem5tation &      
ins]t+ 1 :i* may include ^? conditions t
 h be5 nom9at$ pursuant to section      
#aaaa1 to ensure t scre5+ te*nologies   
are pilot$ & ready = implem5tation4  7g7
 ,au?orization ( appropriations ,section
 #aaag ( ! ,public ,heal? ,s]vice ,act  
7#db ,u4,s4,c4 #cjj;b-#af7 is am5d$--   
7#a7 9 p>agraph 7#a71 by /rik+          
#aa1ijj1jjj = ea* ( fiscal ye>s #bjae   
?r\gh #bjai & ins]t+ #af1chc1jjj = ea* (
 fiscal ye>s #bjbj ?r\gh #bjbd2 &  7#b7 
9 p>agraph 7#b71 by /rik+ #h1jjj1jjj =  
ea* ( fiscal ye>s #bjae ?r\gh #bjai &   
ins]t+ #ag1bej1jjj = ea* ( fiscal ye>s  

#bjbj ?r\gh #bjbd4  7h7 ,te*nical       
assi/ance ,! ,secret>y %all publi% on ! 
int]net website ( ! ,dep>tm5t ( ,heal? &
 ,human ,s]vices1 in=mation reg>d+ !    
process = obta9+ te*nical assi/ance =   
submitt+ nom9ations to ! recomm5d$ uni=m
 scre5+ panel4  7i7 ,report on !        
mod]nization ( newborn scre5+  7#a7 ,9  
g5]al ,! ,secret>y ( ,heal? & ,human    
,s]vices %all1 directly or ?r\gh a      
contract1 conduct an assessm5t ( ea* ( !
 foll[+3  7,a7 ,! uni=m scre5+ panel    
review & recomm5dation processes1       
includ+ an assessm5t ( factors t impact 
decisions to add new conditions to !    
uni=m scre5+ panel & *all5ges associat$ 
) newly nom9at$ conditions1 includ+ r>e 
diseases ) late onset v>iants4  7,b7    
,/rategies to support implem5tation (   
uni=m scre5+ panel recomm5dations4  7,c7
 ,opportunities to improve newborn      
scre5+ rese>*1 su* z pilot+ ! scre5+ (  
multiple conditions 9 a s+le te/ &      
optimiz+ ! capacity = su* rese>*4  7,d7 
,te*nologies t w\ld improve scre5+1     

includ+ te*nologies t id5tify multiple1 
relat$ disord]s 9 a s+le te/4  7,e7     
,me?ods to improve public heal?         
surveillance1 timel9ess ( diagnosis1 &  
%ort- & long-t]m foll[-up = infants     
id5tifi$ ?r\gh newborn scre5+4  7,f7    
,/rategies to improve communication ) ! 
public & /akehold]s 9 ord] to promote   
und]/&+ & k ( ! newborn scre5+ sy/em4   
7,g7 ,! quality ( data on disease       
preval5ce = scre5$ conditions4  7,h7 ,! 
effect ( newborn scre5+ on ! outcomes ( 
^? id5tifi$ z newborns ?r\gh su*        
scre5+s4  7#b7 ,report ,n lat] ?an #b   
ye>s aft] ! date ( enactm5t ( ?is ,act1 
! ,secret>y ( ,heal? & ,human ,s]vices  
%all submit1 to ! ,committee on ,heal?1 
,education1 ,labor1 & ,p5sions ( !      
,s5ate & ! ,committee on ,en]gy &       
,comm]ce ( ! ,h\se ( ,repres5tatives1 a 
report conta9+ ! results ( ! assessm5t &
 recomm5dations to improve processes    
describ$ 9 p>agraph 7#a74