,,ii ,cal5d> ,no4 #eec #aae? ,,congress 
#b;d ,session  ,s4 #bdfe  ,,9 ,,!       
,,s5ate ,,( ,,! ,,unit$ ,,/ates         
,febru>y #bh1 #bjah,mr4 ,scott 7=       
himself1 ,mr4 ,book]1 ,mr4 ,jones1 ,mr4 
,cassidy1 ,ms4 ,/ab5[1 ,ms4 ,w>r51 &    
,mr4 ,br[n7 introduc$ ! foll[+ bill2 :i*
 0 read twice & ref]r$ to ! ,committee  
on ,heal?1 ,education1 ,labor1 &        
,p5sions  ,augu/ #ae1 #bjah,report$ by  
,mr4 ,alex&]1 ) an amendment,strike out 
all aft] ! enact+ clause & ins]t ! "p   
pr9t$ 9 italic  ,a ,,bill  ,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 title2 table (  
cont5ts  7a7 ,%ort title ,?is ,act may  
be cit$ z ! ,sickle ,cell ,disease      
,rese>*1 ,surveillance1 ,prev5tion1 &   
,treatm5t ,act ( #bjah4  7b7 ,table (   
cont5ts ,! table ( cont5ts ( ?is ,act is
 z foll[s3 ,sec4 #a4 ,%ort title2 table 

( cont5ts4,sec4 #b4 ,s5se ( !           
,s5ate4,sec4 #c4 ,sickle cell disease   
surveillance4,sec4 #d4 ,sickle cell     
disease prev5tion & treatm5t4,sec4 #e4  
,collaboration ) community-bas$         
entities4  #b4 ,s5se ( ! ,s5ate ,x is ! 
,s5se ( ! ,s5ate t fur!r rese>* %\ld be 
und]tak5 to exp& ! und]/&+ ( ! cause (1 
& to f9d a cure =1 sickle cell disease4 
#c4 ,sickle cell disease surveillance   
,"p ,p ( title ,,iii ( ! ,public ,heal? 
,s]vice ,act is am5d$ by ins]t+ aft]    
section #cii,v-#f 7#db ,u4,s4,c4        
#bhj;g-#ag7 ! foll[+3  #cii,v-#g4       
,national ,sickle ,cell ,disease        
,surveillance1 ,prev5tion1 & ,treatm5t  
,program  7a7 ,surveillance  7#a7       
,grants ,! ,secret>y may1 = ea* fiscal  
ye> = :i* appropriations are available  
to c>ry out ?is subsection1 make grants 
to n m ?an #bj eligible entities = !    
foll[+ purposes3  7,a7 ,to conduct      
surveillance & ma9ta9 data on !         
preval5ce & di/ribution ( sickle cell   
disease & its associat$ heal? outcomes1 

complications1 & treatm5ts4  7,b7 ,to   
conduct public heal? initiatives )      
respect to sickle cell disease1 includ+ 
"o or m ( ! foll[+3  7i7 ,increas+ ef=ts
 to improve access to high-quality      
sickle cell disease-relat$ heal? c>e1   
includ+ ! use ( treatm5ts approv$ "u    
section #eje ( ! ,f$]al ,food1 ,drug1 & 
,cosmetic ,act or lic5s$ "u section #cea
 ( ?is ,act4  7ii7 ,work+ ) p>tn]s to   
improve heal? outcomes ( p ) sickle cell
 disease ov] ! lifespan by promot+      
guidel9es = sickle cell disease scre5+1 
prev5tion1 & treatm5t1 includ+ managem5t
 ( sickle cell disease complications4   
7iii7 ,provid+ support to community-bas$
 organizations & ,/ate & local heal?    
dep>tm5ts 9 conduct+ sickle cell disease
 education & tra9+ activities = pati5ts1
 communities1 & heal? c>e provid]s4     
7iv7 ,support+ & tra9+ ,/ate heal?      
dep>tm5ts & regional laboratories 9     
compreh5sive te/+ to id5tify specific   
=ms ( sickle cell disease 9 p ( all     
ages4  7,c7 ,to id5tify & evaluate      

promis+ /rategies = prev5tion & treatm5t
 ( sickle cell disease complications1   
includ+ ?r\gh "o or m ( ! foll[+3  7i7  
,improv+ e/imates ( ! national incid5ce 
& preval5ce ( sickle cell disease1      
includ+ e/imates ab\t ! specific types (
 sickle cell disease4  7ii7 ,id5tify+   
heal? disp>ities relat$ to sickle cell  
disease4  7iii7 ,assess+ ! utilization (
 !rapies & /rategies to prev5t          
complications relat$ to sickle cell     
disease4  7iv7 ,evaluat+ ! impact (     
g5etic1 environm5tal1 behavioral1 & o!r 
risk factors t may affect sickle cell   
disease heal? outcomes4  7#b7           
,population includ$ ,! ,secret>y %all1  
to ! ext5t practicable1 aw>d grants "u  
?is subsection to eligible entities     
across ! ,unit$ ,/ates s z to include   
data on ! majority ( ! ,unit$ ,/ates    
population ) sickle cell disease4  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 ,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 a ,/ate   
heal? or public heal? dep>tm5t1 an      
in/itution ( high] education1 or a      
nonpr(it entity4  4  #d4 ,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$--  7#a7 by     
/rik+ ,sickle ,cell ,disease ea* place x
 appe>s & ins]t+ sickle cell disease2   
7#b7 9 p>agraph 7#a77;,a71 by /rik+     
grants to up to #dj eligible entities = 
ea* fiscal ye> 9 :i* ! program is       
conduct$ "u ?is section = ! purpose (   
develop+ & e/abli%+ sy/emic me*anisms to

 improve ! prev5tion & treatm5t (       
,sickle ,cell ,disease & ins]t+ grants  
to up to #be 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 9 populations ) a high d5sity ( 
sickle cell disease pati5ts2  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 exp&1 coord9ate1 &  
implem5t transition 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   
#bjah ?r\gh #bjbb4  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  
#cii,v-#g ( su* ,act1 z add$ by section 
#b ( ?is ,act4  #e4 ,collaboration )    
community-bas$ entities ,section        
#cii,v-#g ( ! ,public ,heal? ,s]vice    
,act1 z am5d$ by section #c1 is fur!r   
am5d$ by add+ at ! end ! foll[+3  7c7   
,collaboration ) community-,bas$        
entities ,to be eligible to receive a   
grant or o!r assi/ance "u subsection 7a7
 or 7b71 an eligible entity mu/ h 9     
effect a collaborative agreem5t ) a     
community-bas$ organization ) five or m 
ye>s ( exp]i5ce 9 provid+ s]vices to    
sickle cell disease pati5ts4  4  #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  
,augu/ #ae1 #bjah,report$ ) an am5dm5t