,i  #aaf? ,,congress  #a/ ,session  ,h4 
,r4 #ecd  ,,9 ,,! ,,h\se ,,(            
,,repres5tatives  ,janu>y #ad1 #bjai,ms4
 ,cl>ke ( ,new ,york 7= h]self & ,mr4   
,zeld97 introduc$ ! foll[+ bill2 :i* 0  
ref]r$ to ! ,committee on ,en]gy &      
,comm]ce  ,a ,,bill  ,to am5d ! ,public 
,heal? ,s]vice ,act1 9 relation to      
requir+ adr5oleukody/rophy scre5+ (     
newborns4  #a4 ,%ort title ,?is ,act may
 be cit$ z ,aidan's ,law4  #b4 ,f9d+s   
,congress f9ds ! foll[+3  7#a7          
,adr5oleukody/rophy is a deadly g5etic  
disease t de/roys myel91 ! protective   
%ea? t surr\nds ! bra9's neurons1 :i*   
are ! n]ve cells t all[ u to ?9k & to   
control our muscles4  7#b7              
,adr5oleukody/rophy affects #a 9 #ag1jjj
 p & mo/ sev]ely affects boys & m54     
7#c7 ,adr5oleukody/rophy newborn scre5+ 
te/s h be5 validat$ ) false positive (  
less ?an #j4a p]c5t4  7#d7 ,e>ly        
id5tification ( adr5oleukody/rophy all[s
 ^? :o are affect$ to be treat$ & h !   
be/ *ance at a heal?y life4  #c4 ,scre5+

 ( adr5oleukody/rophy  7a7 ,9 g5]al ,"p 
,a ( title ,,xi ( ! ,public ,heal?      
,s]vice ,act 7#db ,u4,s4,c4 #cjj;b-#a et
 seq47 is am5d$ by add+ at ! end !      
foll[+3  #aaah4 ,adr5oleukody/rophy  7a7
 ,9 g5]al ,ea* hospital1 *ild c>e c5t]1 
cl9ic1 or o!r simil> in/itution c>+ =   
infants :o are #bh days or less ( age 7z
 designat$ by ! ,secret>y7 may adm9i/]1 
or cause to h adm9i/]$1 to e su* infant 
9 its c>e a te/ = adr5oleukody/rophy 9  
accordance ) ?is section4  7b7 ,process 
7#a7 ,9 g5]al ,9 c>ry+ out ?is section1 
! *ief executive (fic] = heal? 9 ea*    
,/ate may prescribe /&>ds & proc$ures = 
! adm9i/ration ( te/+ "u subsection 7a71
 includ+ record+ ! results ( su* te/s1  
track+ activities1 conduct+ foll[-up    
reviews1 & c>ry+ out educational        
activities4  7#b7 ,dissem9ation (       
in=mation ,9 c>ry+ out ?is section1 !   
*ief executive (fic] = heal? 9 ea* ,/ate
 may prescribe /&>ds & proc$ures sett+  
=? ! mann] 9 :i* te/+ in=mation is      
dissem9at$ to a p>5t or gu>dian ( !     

infant to be te/$4  7#c7 ,failure to    
prescribe ,if a ,/ate has n prescrib$   
/&>ds & proc$ures t are approv$ z       
provid$ = 9 p>agraph 7#d7 by ! date t is
 #b ye>s aft] ! date ( enactm5t ( ?is   
section1 ! ,discretion>y ,advisory      
,committee on ,h]itable ,disord]s 9     
,newborns & ,*ildr5 e/abli%$ "u section 
#aaaa 7ref]r$ to 9 ?is section z !      
,advisory ,committee7 %all prescribe    
appropriate /&>ds & proc$ures :i* may be
 implem5t$ by su* ,/ate4  7#d7 ,review &
 approval ,! /&>ds & proc$ures prescrib$
 "u ?is subsection %all be subject to   
review & approval by ! ,advisory        
,committee4 ,9 review+ or prescrib+     
/&>ds & proc$ures z requir$ "u ?is      
subsection1 ! ,advisory ,committee %all 
consid] /&>ds & proc$ures adopt$ 9 o!r  
,/ates ) respect to ! scre5+ (          
adrenoleukodystrophy1 ! /&>ds &         
proc$ures adopt$ 9 su* ,/ate ) respect  
to ! scre5+ ( infants = o!r h]itable    
diseases1 & any sci5tific evid5ce !     
,advisory ,committee consid]s relevant  

to provide = ! scre5+ ( infants =       
adrenoleukodystrophy4  4  7b7           
,reau?orization ( ,h]itable ,disord]s   
,program ,section #aaag ( ! ,public     
,heal? ,s]vice ,act 7#db ,u4,s4,c4      
#cjj;b-#af7 is am5d$-- 7#a7 9 p>agraph  
7#a71 by /rik+ & at ! end2  7#b7 by     
r$esignat+ p>agraph 7#b7 z p>agraph     
7#c72 &  7#c7 by ins]t+ aft] p>agraph   
7#a71 ! foll[+3  7#b7 to c>ry out !     
,h]itable ,disord]s ,program "u section 
#aaji1 #ae1jjj1jjj = ea* ( fiscal ye>s  
#bjbj ?r\gh #bjbc2 &  4  #d4 ,advisory  
committee on h]itable disord]s 9        
newborns & *ildr5 ,section #aaaa7;b7 ( !
 ,public ,heal? ,s]vice ,act 7#db       
,u4,s4,c4 #cjj;b-#aj7;b77 is am5d$--    
7#a7 9 p>agraph 7#g7 by /rik+ & aft] !  
semicolon2  7#b7 by r$esignat+ p>agraph 
7#h7 z p>agraph 7#i72 &  7#c7 by ins]t+ 
aft] p>agraph 7#g7 ! foll[+3  7#h7 c>ry 
out activities z provid$ = "u section   
#aaah2 &  4