,i  #aafth ,,congress  #ast ,session    
,h4 ,r4 #ecd  ,,in ,,the ,,house ,,of   
,,representatives  ,january #ad1        
#bjai,ms4 ,clarke of ,new ,york 7for    
herself and ,mr4 ,zeldin7 introduced the
 following bill2 which was referred to  
the ,committee on ,energy and ,commerce 
,a ,,bill  ,to amend the ,public ,health
 ,service ,act1 in relation to requiring
 adrenoleukodystrophy screening of      
newborns4  #a4 ,short title ,this ,act  
may be cited as ,aidan's ,law4  #b4     
,findings ,congress finds the following3
  7#a7 ,adrenoleukodystrophy is a deadly
 genetic disease that destroys myelin1  
the protective sheath that surrounds the
 brain's neurons1 which are the nerve   
cells that allow us to think and to     
control our muscles4  7#b7              
,adrenoleukodystrophy affects #a in     
#ag1jjj people and most severely affects
 boys and men4  7#c7                    
,adrenoleukodystrophy newborn screening 
tests have been validated with false    
positive of less than #j4a percent4     

7#d7 ,early identification of           
adrenoleukodystrophy allows those who   
are affected to be treated and have the 
best chance at a healthy life4  #c4     
,screening of adrenoleukodystrophy  7a7 
,in general ,part ,a of title ,,xi of   
the ,public ,health ,service ,act 7#db  
,u4,s4,c4 #cjj;b-#a et seq47 is amended 
by adding at the end the following3     
#aaah4 ,adrenoleukodystrophy  7a7 ,in   
general ,each hospital1 child care      
center1 clinic1 or other similar        
institution caring for infants who are  
#bh days or less of age 7as designated  
by the ,secretary7 may administer1 or   
cause to have administered1 to every    
such infant in its care a test for      
adrenoleukodystrophy in accordance with 
this section4  7b7 ,process  7#a7 ,in   
general ,in carrying out this section1  
the chief executive officer for health  
in each ,state may prescribe standards  
and procedures for the administration of
 testing under subsection 7a71 including
 recording the results of such tests1   

tracking activities1 conducting         
follow-up reviews1 and carrying out     
educational activities4  7#b7           
,dissemination of information ,in       
carrying out this section1 the chief    
executive officer for health in each    
,state may prescribe standards and      
procedures setting forth the manner in  
which testing information is            
disseminated to a parent or guardian of 
the infant to be tested4  7#c7 ,failure 
to prescribe ,if a ,state has not       
prescribed standards and procedures that
 are approved as provided for in        
paragraph 7#d7 by the date that is #b   
years after the date of enactment of    
this section1 the ,discretionary        
,advisory ,committee on ,heritable      
,disorders in ,newborns and ,children   
established under section #aaaa         
7referred to in this section as the     
,advisory ,committee7 shall prescribe   
appropriate standards and procedures    
which may be implemented by such ,state4
  7#d7 ,review and approval ,the        

standards and procedures prescribed     
under this subsection shall be subject  
to review and approval by the ,advisory 
,committee4 ,in reviewing or prescribing
 standards and procedures as required   
under this subsection1 the ,advisory    
,committee shall consider standards and 
procedures adopted in other ,states with
 respect to the screening of            
adrenoleukodystrophy1 the standards and 
procedures adopted in such ,state with  
respect to the screening of infants for 
other heritable diseases1 and any       
scientific evidence the ,advisory       
,committee considers relevant to provide
 for the screening of infants for       
adrenoleukodystrophy4  4  7b7           
,reauthorization of ,heritable          
,disorders ,program ,section #aaag of   
the ,public ,health ,service ,act 7#db  
,u4,s4,c4 #cjj;b-#af7 is amended-- 7#a7 
in paragraph 7#a71 by striking and at   
the end2  7#b7 by redesignating         
paragraph 7#b7 as paragraph 7#c72 and   
7#c7 by inserting after paragraph 7#a71 

the following3  7#b7 to carry out the   
,heritable ,disorders ,program under    
section #aaji1 #ae1jjj1jjj for each of  
fiscal years #bjbj through #bjbc2 and  4
  #d4 ,advisory committee on heritable  
disorders in newborns and children      
,section #aaaa7;b7 of the ,public       
,health ,service ,act 7#db ,u4,s4,c4    
#cjj;b-#aj7;b77 is amended-- 7#a7 in    
paragraph 7#g7 by striking and after the
 semicolon2  7#b7 by redesignating      
paragraph 7#h7 as paragraph 7#i72 and   
7#c7 by inserting after paragraph 7#g7  
the following3  7#h7 carry out          
activities as provided for under section
 #aaah2 and  4