,,ii ,calendar ,no4 #bhb #aacth         
,,congress  #ast ,session  ,s4 #adag    
,,in ,,the ,,senate ,,of ,,the ,,united 
,,states  ,august #a1 #bjac,mrs4 ,hagan 
7for herself1 ,mr4 ,hatch1 ,mr4 ,enzi1  
,mr4 ,casey1 ,ms4 ,collins1 ,mr4        
,schumer1 ,mr4 ,cochran1 ,mr4 ,bennet1  
,ms4 ,cantwell1 ,mr4 ,donnelly1 ,mr4    
,murphy1 ,mr4 ,schatz1 ,mr4 ,franken1   
,mr4 ,harkin1 and ,mr4 ,wicker7         
introduced the following bill2 which was
 read twice and referred to the         
,committee on ,health1 ,education1      
,labor1 and ,pensions  ,december #ai1   
#bjac,reported by ,mr4 ,harkin1 with an 
amendment,strike out all after the      
enacting clause and insert the part     
printed in italic  ,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 and follow-up for      
heritable disorders4,sec4 #c4           
,evaluating the effectiveness of newborn
 and child screening and follow-up      
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    
,authorization of appropriations4  #b4  
,improved newborn and child screening   
and follow-up 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     
follow-up and treatment2  7#b7 in       
subsection 7h71 by striking subsection  
7c77#b7 each place that such appears and
 inserting subsection 7c72 and  7#c7 by 
striking subsection 7j7 7relating to    
authorization of appropriations74  #c4  
,evaluating the effectiveness of newborn
 and child screening and follow-up      
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       
follow-up after child screening2  7#b7  
in subsection 7a71 by inserting         
follow-up1 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 a semicolon2 and  7,d7 by     
adding at the end the following3  7#d7  
the availability and effectiveness of   
follow-up care for newborns and their   
families after screening and diagnosis2 
7#e7 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#f7 the effectiveness of
 newborn screening follow-up and        
intervention programs through the       
assessment of the health and development
 of children at school age and as young 

adults2  7#g7 the level of data sharing 
regarding newborn screening with        
,state-based birth defects and          
developmental disabilities monitoring   
programs2  7#h7 the coordination of     
surveillance activities1 including--    
7,a7 standardized data collection and   
reporting2 and  7,b7 use of electronic  
health records2  7#i7 the facilitation  
of quality improvement in treatment and 
disease management based on gaps in     
services or care identified by          
longitudinal tracking systems2 and      
7#aj7 the utilization of data from      
longitudinal tracking systems to support
 the development and evaluation of      
evidence-based guidelines for diagnosis1
 treatment1 and disease management4  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 impact1     
including the 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  7ii7 in         
subparagraph 7,d71 by inserting before  
the semicolon 1 including information on
 cost and incidence2  7iii7 in          
subparagraph 7,j71 by striking and at   
the end2 and  7iv7 in subparagraph 7,k71
 by striking the period and inserting 2 
and2  7#b7 in subsection 7d7-- 7,a7 in  
paragraph 7#a71 by striking #ahj and    
inserting #fj2  7,b7 in paragraph 7#b71 
by striking ,newborn ,screening ,saves  
,lives ,act of #bjjh and insert ,newborn
 ,screening ,saves ,lives               
,reauthorization ,act of #bjac2 and     
7,c7 by adding at the end the following3
  7#d7 ,priority review  7,a7 ,in       
general ,for each nomination to the     

recommended uniform screening panel that
 meets the criteria of subparagraph     
7,b71 the ,advisory ,committee on       
,heritable ,disorders in ,newborns and  
,children shall provide a priority      
review as described in this paragraph   
and subject to the deadlines in         
subparagraph 7,c74  7,b7 ,criteria for  
priority review ,the ,advisory          
,committee on ,heritable ,disorders in  
,newborns and ,children shall provide a 
priority review with respect to a       
nomination to the recommended uniform   
screening panel that meets each of the  
following criteria3 7i7 ,a human drug   
application1 as defined in section      
#gce7a7 of the ,federal ,food1 ,drug1   
and ,cosmetic ,act 7#ba ,u4,s4,c4       
#cgi;g7#a771 has been submitted to the  
,secretary for treatment of such disease
 or condition4  7ii7 ,the application   
described in clause 7i7 has been granted
 priority review or has received fast   
track or breakthrough therapy           
designations by the ,secretary as       

described in section #ebi7;a77#a7 of the
 ,federal ,food1 ,drug1 and ,cosmetic   
,act 7#ba ,u4,s4,c4 #cfj;ff7a77#a774    
7,c7 ,deadlines for priority review ,the
 ,advisory ,committee on ,heritable     
,disorders in ,newborns and ,children   
shall vote on the nominated condition   
that is under priority review within #h 
months of the later of-- 7i7 the date on
 which the ,advisory ,committee refers  
the nomination to the condition review  
workgroup2 or  7ii7 the date of the     
approval1 by the ,food and ,drug        
,administration1 of the treatment       
associated with the nomination to the   
recommended uniform screening panel4    
7,d7 ,failure to act ,if the ,secretary 
fails to act on a recommendation within 
the time period provided for in         
paragraph 7#a71 the ,secretary shall    
adopt the recommendation and include the
 screening recommended by the ,advisory 
,committee on ,heritable ,disorders in  
,newborns and ,children in the          
recommended uniform screening panel4    

7,e7 ,other reviews ,for each nomination
 to the recommended uniform screening   
panel that does not meet the criteria of
 subparagraph 7,b71 the ,advisory       
,committee on ,heritable ,disorders in  
,newborns and ,children shall provide   
for a review and vote on the nominated  
condition that is under review within   
#aj months of the date on which the     
,advisory ,committee referred the       
nomination to the condition review      
workgroup4  2  7#c7 by redesignating    
subsections 7f7 and 7g7 as subsections  
7g7 and 7h71 respectively2  7#d7 by     
inserting after subsection 7e7 the      
following new subsection3  7f7 ,meetings
 ,the ,advisory ,committee shall meet at
 least #d times each calendar year with 
at least #b meetings in person4  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     
disseminate available evidence-informed 
guidelines related to 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 ,authorization of         
appropriations ,part ,a of title ,,xi of
 the ,public ,health ,service ,act is   
amended by adding at the end1 the       
following3  #aaag4 ,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 #ah1ccd1jjj for each of      
fiscal years #bjad through #bjah2 and   
7#b7 to carry out section #aaac1        
#g1ejj1jjj for each of fiscal years     
#bjad through #bjah4  4  #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 and follow-up for      
heritable disorders4,sec4 #c4           

,evaluating the effectiveness of newborn
 and child screening and follow-up      
programs4,sec4 #d4 ,advisory ,committee 
on ,heritable ,disorders in ,newborns   
and ,children4,sec4 #e4 ,clearinghouse  
of ,newborn ,screening                  
,information4,sec4 #f4 ,laboratory      
quality and surveillance4,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    
,authorization of appropriations4,sec4  
#aa4 ,reports to ,congress  #b4         
,improved newborn and child screening   
and follow-up 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#a7-- 7i7 by striking subsection 7j7   
and inserting section #aaag2 and  7ii7  
by striking and in consultation with the
 ,advisory ,committee and inserting and 

taking into consideration the expertise 
of the ,advisory ,committee2  7,b7 in   
paragraph 7#b71 by striking screening   
and training and inserting screening1   
counseling1 and training2  7,c7 in      
paragraph 7#c71 by striking and at the  
end2  7,d7 in paragraph 7#d7-- 7i7 by   
striking treatment and inserting        
follow-up and treatment2 and  7ii7 by   
striking the period and inserting 2 and2
 and  7,e7 by adding at the end the     
following3  7#e7 to improve the timely  
collection1 delivery1 receipt1 and      
screening of specimens1 and the timely  
diagnosis of heritable disorders in     
newborns4  2  7#b7 in subsection 7h71 by
 striking subsection 7c77#b7 each place 
that such appears and inserting         
subsection 7c72 and  7#c7 by striking   
subsection 7j7 7relating to             
authorization of appropriations74  #c4  
,evaluating the effectiveness of newborn
 and child screening and follow-up      
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       
follow-up after child screening2  7#b7  
in subsection 7a71 by striking of       
screening1 and inserting 1 including    
with respect to timeliness1 of          
screening1 follow-up12  7#c7 in         
subsection 7b7-- 7,a7 in paragraph      
7#a7-- 7i7 by striking counseling1      
testing and inserting treatment1        
counseling1 testing1 follow-up12 and    
7ii7 by inserting before the semicolon  
the following3 1 including1 as          
appropriate1 through the assessment of  
health and development outcomes for such
 children through adolescence2  7,b7 in 
paragraph 7#b7-- 7i7 by striking        
counseling1 testing and inserting       
treatment1 counseling1 testing1         
follow-up12 and  7ii7 by striking or at 
the end2  7,c7 in paragraph 7#c71 by    
striking the period at the end and      
inserting a semicolon2 and  7,d7 by     
adding at the end the following3  7#d7  
methods that may be identified to       

improve quality in the diagnosis1       
treatment1 and disease management of    
heritable disorders based on gaps in    
services or care2 or  7#e7 methods or   
best practices by which the eligible    
entities described in section #aaji can 
achieve the timely collection1 delivery1
 receipt1 and screening of newborn      
screening specimens1 and the timely     
diagnosis of heritable disorders in     
newborns4  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 by redesignating paragraphs 7#d7   
through 7#f7 as paragraphs 7#e7 through 
7#g71 respectively2  7,b7 by inserting  
after paragraph 7#c71 the following3    
7#d7 provide technical assistance1 as   
appropriate1 to individuals and         
organizations regarding the submission  

of nominations to the uniform screening 
panel1 including prior to the submission
 of such nominations2  2  7,c7 in       
paragraph 7#e7 7as so redesignated71 by 
inserting 1 including the cost after    
public health impact2 and  7,d7 in      
paragraph 7#g7 7as so redesignated7--   
7i7 in subparagraph 7,a71 by striking   
achieve rapid diagnosis and inserting   
achieve best practices in rapid         
diagnosis and appropriate treatment2    
7ii7 in subparagraph 7,d71 by inserting 
before the semicolon 1 including        
information on cost and incidence2      
7iii7 in subparagraph 7,j71 by striking 
and at the end2  7iv7 in subparagraph   
7,k71 by striking the period and        
inserting 2 and2 and  7v7 by adding at  
the end the following3  7,l7 the timely 
collection1 delivery1 receipt1 and      
screening of specimens to be tested for 
heritable disorders in newborns in order
 to ensure rapid diagnosis and          
follow-up4  2  7#b7 in subsection 7d7-- 
7,a7 in paragraph 7#a7-- 7i7 by striking

 #ahj and inserting #abj2 and  7ii7 by  
adding at the end the following3 ,if the
 ,secretary is unable to make a         
determination to adopt or reject such   
recommendation within such #abj-;day    
period1 the ,secretary shall notify the 
,advisory ,committee and the appropriate
 committees of ,congress of such        
determination together with an          
explanation for why the ,secretary was  
unable to comply within such #abj-;day  
period1 as well as a plan of action for 
consideration of such pending           
recommendations42  7,b7 by striking     
paragraph 7#b72  7,c7 by redesignating  
paragraph 7#c7 as paragraph 7#b72 and   
7,d7 by adding at the end the following3
  7#c7 ,deadline for review ,for each   
nomination to the recommended uniform   
screening panel1 the ,advisory          
,committee on ,heritable ,disorders in  
,newborns and ,children shall review and
 vote on the nominated condition within 
#i months of the date on which the      
,advisory ,committee referred the       

nomination to the condition review      
workgroup4  2  7#c7 by redesignating    
subsections 7f7 and 7g7 as subsections  
7g7 and 7h71 respectively2  7#d7 by     
inserting after subsection 7e7 the      
following new subsection3  7f7 ,meetings
 ,the ,advisory ,committee shall meet at
 least #d times each calendar year1 or  
as subject to the discretion of the     
,designated ,federal ,officer in        
consultation with the ,chair4  2  7#e7  
in subsection 7g7 7as so redesignated71 
by striking ,newborn ,screening ,saves  
,lives ,act of #bjjh and inserting      
,newborn ,screening ,saves ,lives       
,reauthorization ,act of #bjac2 and     
7#f7 by striking subsection 7h7         
7relating to authorization of           
appropriations71 as redesignated by     
paragraph 7#c74  #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#c7-- 7i7 by striking data   
and inserting information2 and  7ii7 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      
information on the number of conditions 
for which screening is conducted in each
 ,state2 and  7#e7 disseminate available
 evidence-based guidelines related to   
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  7#c7 in
 subsection 7c7-- 7,a7 by striking      
developing the clearinghouse and        
inserting carrying out activities2 and  
7,b7 by striking clearinghouse minimizes
 and inserting activities minimize2 and 
7#d7 by striking subsection 7d7         

7relating to authorization of           
appropriations74  #f4 ,laboratory       
quality and surveillance ,section #aaac 
of the ,public ,health ,service ,act    
7#db ,u4,s4,c4 #cjj;b-#ab7 is amended-- 
7#a7 in the section heading1 by         
inserting and surveillance before the   
period2  7#b7 in subsection 7a7-- 7,a7  
by striking the subsection enumerator   
and heading2  7,b7 in the matter        
preceding paragraph 7#a71 by striking   
and in consultation with the ,advisory  
,committee and inserting and taking into
 consideration the expertise of the     
,advisory ,committee2  7,c7 in paragraph
 7#a7-- 7i7 by inserting timeliness for 
processing such tests1 after newborn    
screening tests2 and  7ii7 by striking  
and at the end2 and  7,d7 in paragraph  
7#b71 by striking the period and        
inserting 2 and2 and  7#c7 by striking  
subsection 7b7 7relating to             
authorization of appropriations7 and    
inserting the following3  7b7           
,surveillance activities ,the           

,secretary1 acting through the ,director
 of the ,centers for ,disease ,control  
and ,prevention1 and taking into        
consideration the expertise of the      
,advisory ,committee on ,heritable      
,disorders in ,newborns and ,children   
established under section #aaaa1 may    
provide1 as appropriate1 for the        
coordination of surveillance activities1
 including-- 7#a7 through standardized  
data collection and reporting1 as well  
as the use of electronic health records2
 and  7#b7 by promoting data sharing    
regarding newborn screening with        
,state-based birth defects and          
developmental disabilities monitoring   
programs4  4  #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           
appropriations74  #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 by providing research  

findings 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            
,authorization of appropriations ,part  
,a of title ,,xi of the ,public ,health 
,service ,act is amended by adding at   
the end1 the following3  #aaag4         
,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
 #ah1ccd1jjj for each of fiscal years   
#bjad through #bjah2 and  7#b7 to carry 
out section #aaac1 #g1ejj1jjj for each  
of fiscal years #bjad through #bjah4  4 
#aa4 ,reports to ,congress  7a7 ,,gao   

report on timeliness of newborn         
screening  7#a7 ,in general ,not later  
than #b years after the date of         
enactment of this ,act1 the ,comptroller
 ,general of the ,united ,states shall  
submit a report to the ,committee on    
,health1 ,education1 ,labor and         
,pensions of the ,senate and the        
,committee on ,energy and ,commerce of  
the ,house of ,representatives          
concerning the timeliness of screening  
for heritable disorders in newborns4    
7#b7 ,contents ,the report submitted    
under paragraph 7#a7 shall include the  
following3 7,a7 ,an analysis of         
information regarding the timeliness of 
newborn screening1 which may include the
 time elapsed from birth to specimen    
collection1 specimen collection to      
receipt by laboratory1 specimen receipt 
to reporting1 reporting to follow-up    
testing1 and follow-up testing to       
confirmed diagnosis4  7,b7 ,a summary of
 any guidelines1 recommendations1 or    
best practices available to ,states and 

health care providers intended to       
support a timely newborn screening      
system4  7,c7 ,an analysis of any       
barriers to maintaining a timely newborn
 screening system which may exist and   
recommendations for addressing such     
barriers4  7b7 ,report by ,secretary    
7#a7 ,in general ,the ,secretary of     
,health and ,human ,services 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 ,committee on ,health1           
,education1 ,labor and ,pensions of the 
,senate and the ,committee on ,energy   
and ,commerce 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 this        

subsection shall contain a description  
of-- 7,a7 the ongoing activities under  
sections #aaji1 #aaaj1 and #aaab through
 #aaae of the ,public ,health ,service  
,act2 and  7,b7 the amounts expended on 
such activities4  ,december #ai1        
#bjac,reported with an amendment