,i  #aacth ,,congress  #ast ,session    
,h4 ,r4 #abha  ,,in ,,the ,,house ,,of  
,,representatives  ,march #bj1 #bjac    
,ms4 ,roybal-,allard 7for herself and   
,mr4 ,simpson7 introduced the following 
bill2 which was referred to the         
,committee on ,energy and ,commerce  ,a 
,,bill  ,to amend the ,public ,health   
,service ,act to reauthorize programs   
under part ,a of title ,,xi of such     
,act4  #a4 ,short title2 table of       
contents  7a7 ,short title ,this ,act   
may be cited as the ,newborn ,screening 
,saves ,lives ,reauthorization ,act of  
#bjac4  7b7 ,table of contents ,the     
table of contents of this ,act is as    
follows3  ,sec4 #a4 ,short title2 table 
of contents4 ,sec4 #b4 ,improved newborn
 and child screening for heritable      
disorders4 ,sec4 #c4 ,evaluating the    
effectiveness of newborn and child      
screening and followup programs4 ,sec4  
#d4 ,advisory committee on heritable    
disorders in newborns and children4     
,sec4 #e4 ,clearinghouse of ,newborn    

,screening ,information4 ,sec4 #f4      
,laboratory quality4 ,sec4 #g4          
,interagency ,coordinating ,committee on
 ,newborn and ,child ,screening4 ,sec4  
#h4 ,national contingency plan for      
newborn screening4 ,sec4 #i4 ,hunter    
,kelly ,research ,program4 ,sec4 #aj4   
,newborn screening surveillance1        
followup1 and applied research4 ,sec4   
#aa4 ,authorization of appropriations4  
#b4 ,improved newborn and child         
screening for heritable disorders       
,section #aaji of the ,public ,health   
,service ,act 7#db ,u4,s4,c4 #cjj;b-#h7 
is amended--  7#a7 in subsection 7a7--  
7,a7 in the matter preceding paragraph  
7#a71 by striking and in consultation   
with the ,advisory ,committee and       
inserting and taking into consideration 
the recommendations of the ,advisory    
,committee2  7,b7 in paragraph 7#b71 by 
striking screening and training and     
inserting screening1 counseling1 and    
training2 and  7,c7 in paragraph 7#d71  
by striking treatment and inserting     

followup and treatment2  7#b7 in        
subsection 7b7--  7,a7 in paragraph     
7#d71 by striking or at the end2  7,b7  
by redesignating paragraph 7#e7 as      
paragraph 7#g72 and  7,c7 by inserting  
after paragraph 7#d7 the following3     
7#e7 a health professional organization2
  7#f7 an early childhood health system2
 or  2 and  7#c7 by striking subsection 
7j7 7relating to authorization of       
appropriations74  #c4 ,evaluating the   
effectiveness of newborn and child      
screening and followup programs ,section
 #aaaj of the ,public ,health ,service  
,act 7#db ,u4,s4,c4 #cjj;b-#i7 is       
amended--  7#a7 in the section heading1 
by inserting and followup after child   
screening2  7#b7 in subsection 7a71 by  
inserting followup1 after the           
effectiveness of screening12  7#c7 in   
subsection 7b7--  7,a7 in paragraph     
7#a71 by inserting ascertainment1       
treatment1 after the effectiveness of   
screening1 counseling12  7,b7 in        
paragraph 7#b7--  7i7 by inserting      

ascertainment1 treatment1 after the     
effectiveness of screening1 counseling12
 and  7ii7 by striking or at the end2   
7,c7 in paragraph 7#c71 by striking the 
period at the end and inserting 2 or2   
and  7,d7 by adding at the end the      
following3  7#d7 the availability and   
effectiveness of treatment and followup 
care for newborns and their families    
after screening and diagnosis4  2 and   
7#d7 by striking subsection 7d7         
7relating to authorization of           
appropriations74  #d4 ,advisory         
committee on heritable disorders in     
newborns and children ,section #aaaa of 
the ,public ,health ,service ,act 7#db  
,u4,s4,c4 #cjj;b-#aj7 is amended--  7#a7
 in subsection 7b7--  7,a7 in paragraph 
7#d71 by striking public health impact  
and inserting public health impact and  
cost2 and  7,b7 in paragraph 7#f7--  7i7
 in subparagraph 7,a71 by striking      
achieve rapid diagnosis and inserting   
achieve best practices in rapid         
diagnosis and appropriate treatment2 and

  7ii7 in subparagraph 7,d71 by         
inserting before the semicolon 1        
including information on cost and       
incidence2  7#b7 by redesignating       
subsections 7f7 and 7g7 as subsections  
7g7 and 7h71 respectively2  7#c7 by     
inserting after subsection 7e7 the      
following new subsection3  7f7 ,meetings
 ,the ,advisory ,committee shall meet in
 person at least twice each year4  2    
7#d7 by amending subsection 7g71 as     
redesignated by paragraph 7#b71 to read 
as follows3  7g7 ,continuation of       
operation of committee  7#a7 ,in general
 ,notwithstanding section #ad of the    
,federal ,advisory ,committee ,act 7#e  
,u4,s4,c4 ,app471 the ,advisory         
,committee shall continue to operate for
 the period beginning on the date of    
enactment of the ,newborn ,screening    
,saves ,lives ,reauthorization ,act of  
#bjac and concluding at the end of the  
fifth fiscal year which begins after    
such date4  7#b7 ,continuation if not   
reauthorized ,if at the end of the fifth

 fiscal year described in paragraph 7#a7
 the duration of the ,advisory          
,committee has not been extended by     
statute--  7,a7 the ,advisory ,committee
 may be considered1 for the purposes of 
the ,federal ,advisory ,committee ,act1 
to be an advisory committee established 
by the ,president or an officer of the  
,federal ,government under section      
#i7;a7 of such ,act2 and  7,b7 the      
,secretary may renew the ,advisory      
,committee under section                
#ad7;a77#a77;,a7 of such ,act4  2 and   
7#e7 by striking subsection 7h7         
7relating to authorization of           
appropriations71 as redesignated by     
paragraph 7#b74  #e4 ,clearinghouse of  
,newborn ,screening ,information        
,section #aaab of the ,public ,health   
,service ,act 7#db ,u4,s4,c4 #cjj;b-#aa7
 is amended--  7#a7 in subsection 7a7-- 
7,a7 in paragraph 7#b71 by striking 2   
and and inserting a semicolon2  7,b7 in 
paragraph 7#c71 by striking the period  
at the end and inserting a semicolon2   

and  7,c7 by adding at the end the      
following new paragraphs3  7#d7 maintain
 current data on the number of          
conditions for which screening is       
conducted in each ,state2 and  7#e7     
establish or disseminate guidelines for 
services and personnel necessary for    
followup1 diagnosis1 counseling1 and    
treatment with respect to conditions    
detected by newborn screening4  2  7#b7 
in subsection 7b77#d77;,d71 by striking 
,newborn ,screening ,saves ,lives ,act  
of #bjjh and inserting ,newborn         
,screening ,saves ,lives                
,reauthorization ,act of #bjac2 and     
7#c7 by striking subsection 7d7         
7relating to authorization of           
appropriations74  #f4 ,laboratory       
quality ,section #aaac of the ,public   
,health ,service ,act 7#db ,u4,s4,c4    
#cjj;b-#ab7 is amended--  7#a7 in       
subsection 7a7--  7,a7 by striking the  
subsection enumerator and heading2 and  
7,b7 by striking and in consultation    
with the ,advisory ,committee and       

inserting and taking into consideration 
the recommendations of the ,advisory    
,committee2 and  7#b7 by striking       
subsection 7b7 7relating to             
authorization of appropriations74  #g4  
,interagency ,coordinating ,committee on
 ,newborn and ,child ,screening ,section
 #aaad of the ,public ,health ,service  
,act 7#db ,u4,s4,c4 #cjj;b-#ac7 is      
amended--  7#a7 in subsection 7c71 by   
striking the ,administrator1 the        
,director of the ,agency for ,healthcare
 ,research and ,quality and inserting   
the ,administrator of the ,health       
,resources and ,services                
,administration1 the ,director of the   
,agency for ,healthcare ,research and   
,quality1 the ,commissioner of ,food and
 ,drugs12 and  7#b7 by striking         
subsection 7e7 7relating to             
authorization of appropriations7 and    
inserting the following3  7e7 ,report to
 congress  7#a7 ,in general ,the        
,secretary shall--  7,a7 not later than 
#a year after the date of enactment of  

the ,newborn ,screening ,saves ,lives   
,reauthorization ,act of #bjac1 submit  
to the ,health1 ,education1 ,labor1 and 
,pensions ,committee of the ,senate and 
the ,energy and ,commerce ,committee of 
the ,house of ,representatives a report 
on activities related to--  7i7 newborn 
screening2 and  7ii7 screening children 
who have or are at risk for heritable   
disorders2 and  7,b7 not less than every
 #b years1 shall submit to such         
committees an updated version of such   
report4  7#b7 ,contents ,the report     
submitted under subsection 7a7 shall    
contain a description of--  7,a7 the    
implementation of sections #aaaa through
 #aaaf;,b1 including this section2 and  
7,b7 the amounts expended on such       
implementation4  4  #h4 ,national       
contingency plan for newborn screening  
,section #aaae7;a7 of the ,public       
,health ,service ,act 7#db ,u4,s4,c4    
#cjj;b-#ad7;a77 is amended by adding at 
the end the following3 ,the plan shall  
be updated as needed and at least every 

five years44  #i4 ,hunter ,kelly        
,research ,program ,section             
#aaaf7;a77#a7 of the ,public ,health    
,service ,act 7#db ,u4,s4,c4            
#cjj;b-#ae7;a77#a77 is amended--  7#a7  
in subparagraph 7,b71 by striking 2 and 
and inserting a semicolon2  7#b7 by     
redesignating subparagraph 7,c7 as      
subparagraph 7,e72 and  7#c7 by         
inserting after subparagraph 7,b7 the   
following3  7,c7 providing research and 
data for newborn conditions under review
 by the ,advisory ,committee on         
,heritable ,disorders in ,newborns and  
,children to be added to the            
,recommended ,uniform ,screening ,panel2
  7,d7 conducting pilot studies on      
conditions recommended by the ,advisory 
,committee on ,heritable ,disorders in  
,newborns and ,children to ensure that  
screenings are ready for nationwide     
implementation2 and  4  #aj4 ,newborn   
screening surveillance1 followup1 and   
applied research ,the ,public ,health   
,service ,act is amended by inserting   

after section #aaaf of such ,act 7#db   
,u4,s4,c4 #cjj;b-#ae7 the following3    
#aaaf;,a4 ,newborn screening            
surveillance1 followup1 and applied     
research  7a7 ,in general ,the          
,secretary1 acting through the ,director
 of the ,centers for ,disease ,control  
and ,prevention1 shall award grants to1 
or enter into cooperative agreements    
with1 eligible entities to develop      
longitudinal followup and tracking      
programs for newborn screening4  7b7    
,program ,longitudinal followup and     
tracking programs developed through a   
grant under subsection 7a7 shall        
incorporate standardized procedures for 
data management and program             
effectiveness and costs1 such as--  7#a7
 studying the costs and effectiveness of
 newborn screening1 evaluation and      
intervention programs1 and surveillance 
systems conducted by ,state-based       
programs in order to answer issues of   
importance to ,state and national       
policymakers2  7#b7 studying the        

effectiveness of newborn screening      
followup and intervention programs by   
assessing the health and development of 
children at school age and as young     
adults2  7#c7 promoting the sharing of  
data regarding newborn screening with   
,state-based birth defects and          
developmental disabilities monitoring   
programs2  7#d7 ensuring coordination of
 surveillance activities1 including--   
7,a7 standardized data collection and   
reporting2 and  7,b7 use of electronic  
health records2  7#e7 facilitating      
quality improvement in treatment and    
disease management based on gaps in     
services or care identified by          
longitudinal tracking systems2 and  7#f7
 utilizing data from longitudinal       
tracking systems to support the         
development and evaluation of           
evidence-based guidelines for diagnosis1
 treatment1 and disease management4  7c7
 ,eligible entity ,in this section1 the 
term eligible entity means--  7#a7 a    
,state or a political subdivision of a  

,state2  7#b7 a consortium of #b or more
 ,states or subdivisions described in   
paragraph 7#a72  7#c7 a health facility 
or program operated by or pursuant to a 
contract with1 or a grant from1 the     
,indian ,health ,service2 or  7#d7 any  
other entity with appropriate expertise 
in newborn screening1 as determined by  
the ,secretary4  4  #aa4 ,authorization 
of appropriations ,the ,public ,health  
,service ,act is amended by inserting   
after section #aaaf;,a of such ,act1 as 
added by section #aj of this ,act1 the  
following3  #aaaf;,b4 ,authorization of 
appropriations for newborn screening    
programs and activities ,there are      
authorized to be appropriated--  7#a7 to
 carry out sections #aaji1 #aaaj1 #aaaa1
 and #aaab1 #ac1ccd1jjj for each of     
fiscal years #bjad through #bjah2  7#b7 
to carry out section #aaac1 #g1ejj1jjj  
for each of fiscal years #bjad through  
#bjah2 and  7#c7 to carry out section   
#aaaf;,a1 #e1jjj1jjj for each of fiscal 
years #bjad through #bjah4  4