#aae? ,,congress  #b;d ,session  ,s4    
#bdfe  ,,an ,,act  ,to am5d ! ,public   
,heal? ,s]vice ,act to reau?orize a     
sickle cell disease prev5tion & treatm5t
 demon/ration program & to provide =    
sickle cell disease rese>*1             
surveillance1 prev5tion1 & treatm5t4    
#a4 ,%ort title ,?is ,act may be cit$ z 
! ,sickle ,cell ,disease & ,o!r         
,h]itable ,blood ,disord]s ,rese>*1     
,surveillance1 ,prev5tion1 & ,treatm5t  
,act ( #bjah4  #b4 ,data collection on  
c]ta9 blood disord]s ,"p ,a ( title ,,xi
 ( ! ,public ,heal? ,s]vice ,act is     
am5d$ by ins]t+ aft] section #aaje 7#db 
,u4,s4,c4 #cjj;b-#d7 ! foll[+3  #aajf4  
,sickle cell disease & o!r h]itable     
blood disord]s rese>*1 surveillance1    
prev5tion1 & treatm5t  7a7 ,grants  7#a7
 ,9 g5]al ,! ,secret>y may aw>d grants  
relat$ to h]itable blood disord]s1      
includ+ sickle cell disease1 = "o or m (
 ! foll[+ purposes3  7,a7 ,to collect & 
ma9ta9 data on su* diseases &           
conditions1 includ+ subtypes z          

applicable1 & _! associat$ heal?        
outcomes & complications1 includ+ = !   
purpose (--  7i7 improv+ national       
incid5ce & preval5ce data2  7ii7        
id5tify+ heal? disp>ities1 includ+ !    
geographic di/ribution1 relat$ to su*   
diseases & conditions2  7iii7 assess+ ! 
utilization ( !rapies & /rategies to    
prev5t complications2 &  7iv7 evaluat+ !
 effects ( g5etic1 environm5tal1        
behavioral1 & o!r risk factors t may    
affect su* individuals4  7,b7 ,to       
conduct public heal? activities )       
respect to su* conditions1 :i* may      
include-- 7i7 develop+ /rategies to     
improve heal? outcomes & access to      
quality heal? c>e = ! scre5+ =1 &       
treatm5t & managem5t (1 su* diseases &  
conditions1 includ+ ?r\gh public-private
 p>tn]%ips2  7ii7 provid+ support to    
community-bas$ organizations & ,/ate &  
local heal? dep>tm5ts 9 conduct+        
education & tra9+ activities = pati5ts1 
communities1 & heal? c>e provid]s       
conc]n+ su* diseases & conditions2      

7iii7 support+ ,/ate heal? dep>tm5ts &  
regional laboratories1 includ+ ?r\gh    
tra9+1 9 te/+ to id5tify su* diseases & 
conditions1 includ+ specific =ms (      
sickle cell disease1 9 individuals ( all
 ages2 &  7iv7 ! id5tification &        
evaluation ( be/ practices = treatm5t ( 
su* diseases & conditions1 & prev5tion &
 managem5t ( _! relat$ complications4   
7#b7 ,population includ$ ,! ,secret>y   
%all1 to ! ext5t practicable1 aw>d      
grants "u ?is subsection to eligible    
entities across ! ,unit$ ,/ates to      
improve data on ! incid5ce & preval5ce (
 h]itable blood disord]s1 includ+ sickle
 cell disease1 & ! geographic           
di/ribution ( su* diseases & conditions4
  7#c7 ,application ,to seek a grant "u 
?is subsection1 an eligible entity %all 
submit an application to ! ,secret>y at 
su* "t1 9 su* mann]1 & conta9+ su*      
in=mation z ! ,secret>y may require4    
7#d7 ,priority ,9 aw>d+ grants "u ?is   
subsection1 ! ,secret>y may give        
priority1 z appropriate1 to eligible    

entities t h a relation%ip ) a          
community-bas$ organization t has       
exp]i5ce 91 or is capable (1 provid+    
s]vices to individuals ) h]itable blood 
disord]s1 includ+ sickle cell disease4  
7#e7 ,eligible entity ,9 ?is subsection1
 ! t]m eligible entity includes ! #ej   
,/ates1 ! ,di/rict ( ,columbia1 !       
,commonweal? ( ,pu]to ,rico1 ! ,unit$   
,/ates ,virg9 ,isl&s1 ! ,commonweal? ( !
 ,nor!rn ,m>iana ,isl&s1 ,am]ican       
,samoa1 ,guam1 ! ,f$]at$ ,/ates (       
,micronesia1 ! ,republic ( ,m>%all      
,isl&s1 ! ,republic ( ,palau1 ,indian   
tribes1 a ,/ate or local heal? dep>tm5t1
 an in/itution ( high] education1 or a  
nonpr(it entity ) appropriate exp]i5ce  
to conduct ! activities "u ?is          
subsection4  4  #c4 ,sickle cell disease
 prev5tion & treatm5t  7a7              
,reau?orization ,section #gab7;c7 ( !   
,am]ican ,jobs ,creation ,act ( #bjjd   
7,public ,law #ajh-ceg2 #db ,u4,s4,c4   
#cjj;b-#a note7 is am5d$--  7#a7 by     
/rik+ ,sickle ,cell ,disease ea* place x

 appe>s & ins]t+ sickle cell disease2   
7#b7 9 p>agraph 7#a77;,a71 by /rik+ %all
 conduct a demon/ration program by mak+ 
grants to up to #dj eligible entities = 
ea* fiscal ye> 9 :i* ! program is       
conduct$ "u ?is section = ! purpose (   
develop+ & e/abli%+ sy/emic me*anisms to
 improve ! prev5tion & treatm5t (       
,sickle ,cell ,disease & ins]t+ %all    
cont9ue ef=ts1 includ+ by aw>d+ grants1 
to develop or e/abli% me*anisms to      
improve ! treatm5t ( sickle cell        
disease1 & to improve ! prev5tion &     
treatm5t ( complications ( sickle cell  
disease1 9 populations ) a high         
proportion ( individuals ) sickle cell  
disease2  7#c7 9 p>agraph 7#a77;,b7--   
7,a7 by /rik+ clause 7ii7 7relat+ to    
priority72 &  7,b7 by /rik+ ,grant aw>d 
requirem5ts & all t foll[s ?r\gh ,!     
,adm9i/rator %all & ins]t+ ,geographic  
div]sity4--,! ,adm9i/rator %all2  7#d7 9
 p>agraph 7#b71 by add+ ! foll[+ new    
subp>agraph at ! end3  7,e7 ,to provide 
or coord9ate s]vices = adolesc5ts )     

sickle cell disease mak+ ! transition to
 adult heal? c>e4  2 &  7#e7 9 p>agraph 
7#f71 by /rik+ #aj1jjj1jjj = ea* (      
fiscal ye>s #bjje ?r\gh #bjji & ins]t+  
#d1dee1jjj = ea* ( fiscal ye>s #bjai    
?r\gh #bjbc4  7b7 ,te*nical *anges      
,subsection 7c7 ( section #gab ( !      
,am]ican ,jobs ,creation ,act ( #bjjd   
7,public ,law #ajh-ceg2 #db ,u4,s4,c4   
#cjj;b-#a note71 z am5d$ by subsection  
7a71 is--  7#a7 transf]r$ to ! ,public  
,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bja 
et seq472  7#b7 r$esignat$ z subsection 
7b72 &  7#c7 ins]t$ at ! end ( section  
#aajf ( su* ,act1 z add$ by section #b (
 ?is ,act4  #d4 ,s5se ( ! ,s5ate ,x is !
 ,s5se ( ! ,s5ate t fur!r rese>* %\ld be
 und]tak5 to exp& ! und]/&+ ( ! causes  
(1 & to f9d cures =1 h]itable blood     
disord]s1 includ+ sickle cell disease4  
,pass$ ! ,s5ate ,octob] #aa1            
#bjah4,secret>y