,,iv  #aag? ,,congress  #a/ ,session    
,h4 ,,res4 #did  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,june #bc1 #bjba,mr4  
,danny ,k4 ,davis ( ,ill9ois 7= himself1
 ,mr4 ,burgess1 & ,ms4 ,lee ( ,cali=nia7
 submitt$ ! foll[+ resolution2 :i* 0    
ref]r$ to ! ,committee on ,en]gy &      
,comm]ce  ,,resolution  ,express+       
support = ! designation ( ,septemb]     
#bjba z ,sickle ,cell ,disease ,aw>5ess 
,mon? 9 ord] to educate communities     
across ! ,unit$ ,/ates ab\t sickle cell 
disease & ! ne$ = rese>*1 e>ly detection
 me?ods1 effective treatm5ts1 &         
prev5tative c>e programs ) respect to   
complications f sickle cell disease &   
conditions relat$ to sickle cell        
disease4  ,:]eas sickle cell disease    
7ref]r$ to 9 ?is preamble z ,,scd7 is an
 inh]it$ blood disord] t is a major     
heal? problem 9 ! ,unit$ ,/ates &       
worldwide2 ,:]eas ,,scd causes ! rapid  
de/ruction ( sickle cells1 :i* results 9
 multiple m$ical complications1 includ+ 
anemia1 jaundice1 gall/ones1 /rokes1    

re/rict$ blood fl[1 damag$ tissue 9 !   
liv]1 sple51 & kidneys1 & dea?2 ,:]eas  
,,scd causes episodes ( consid]able pa9 
9 ! arms1 legs1 *e/1 & abdom5 ( an      
individual1 :i* (t5 result 9 l5g?y      
hospital /ays2 ,:]eas ,,scd affects an  
e/imat$ #ajj1jjj individuals 9 ! ,unit$ 
,/ates2 ,:]eas approximately #a1jjj     
babies are born ) ,,scd ea* ye> 9 !     
,unit$ ,/ates1 ) ! disease occurr+ 9    
approximately #a 9 #cfe newborn         
,african-,am]ican infants & #a 9 #af1cjj
 newborn ,hispanic-,am]ican infants1 &  
,,scd c be f\nd 9 individuals (         
,m$it]ranean1 ,middle ,ea/]n1 ,asian1 & 
,indian orig92 ,:]eas m ?an #c1jjj1jjj  
individuals 9 ! ,unit$ ,/ates h ! sickle
 cell trait1 & #a 9 #ac ,african        
,am]icans c>ries ! trait2 ,:]eas !re is 
a #a 9 #d *ance t a *ild born to p>5ts  
:o bo? h ! sickle cell trait w h !      
disease2 ,:]eas ! life expectancy ( an  
individual ) ,,scd 9 ! ,unit$ ,/ates is 
(t5 sev]ely limit$ to an av]age ( #db   
ye>s = a woman & #ch ye>s = a man2      

,:]eas1 accord+ to a #bjah /udy1 ! total
 economic burd5 on ! ,unit$ ,/ates heal?
 c>e sy/em associat$ ) ,,scd 0          
#b1ihj1jjj1jjj annually1 ( :i* #eg p]c5t
 0 attribut$ to hospital inpati5t co/s2 
,:]eas1 9 #bjbj1 ! ,national ,academies 
( ,sci5ces1 ,eng9e]+1 & ,m$ic9e develop$
 a compreh5sive ,/rategic ,plan &       
,bluepr9t = ,action to ,address ,sickle 
,cell ,disease1 :i* cit$ ! ne$ = new    
innovative !rapies z well z to address  
b>ri]s t may impact deliv]y & access to 
approv$ treatm5ts2 ,:]eas !re are em]g+ 
g5etic !rapy te*nologies1 includ+ g5e   
edit+1 t c modify a pati5t's own        
hematopoietic /em cells ) ! goal ( !    
pati5t be+ able to g5]ate heal?y r$     
blood cells to prev5t sickle cell       
crisis2 ,:]eas :ile hematopoietic /em   
cell transplantation is curr5tly ! only 
cure = ,,scd & advances 9 treat+ !      
associat$ complications ( ,,scd h       
occurr$1 m rese>* is ne$$ to f9d widely 
available treatm5ts & cures to help     
individuals ) ,,scd2 & ,:]eas ,septemb] 

#bjba has be5 designat$ z ,sickle ,cell 
,disease ,aw>5ess ,mon? 9 ord] to       
educate communities across ! ,unit$     
,/ates ab\t ,,scd1 includ+ e>ly         
detection me?ods1 effective treatm5ts1 &
 prev5tative c>e programs ) respect to  
complications f ,,scd & conditions      
relat$ to ,,scd3 ,n[1 !re=e1 be x ,t !  
,h\se ( ,repres5tatives-- 7#a7 supports 
! goals & ideals ( ,sickle ,cell        
,disease ,aw>5ess ,mon?2  7#b7 commits  
to ensur+ equitable access among        
economic1 racial1 & e?nic gr\ps to new  
treatm5ts 9 ord] to improve heal?       
outcomes = ^? ) sickle cell disease2    
7#c7 calls on ! ,dep>tm5t ( ,heal? &    
,human ,s]vices to create policy        
solutions aim$ at elim9at+ b>ri]s to    
equitable access = innovative sickle    
cell disease !rapies1 includ+ cell1 g5e1
 & g5e-edit+ !rapies1 9 ! ,m$icaid &    
,m$ic>e sy/em = pati5ts :o ne$ !m mo/2 &
  7#d7 enc\rages ! p ( ! ,unit$ ,/ates  
to hold appropriate programs1 ev5ts1 &  
activities dur+ ,sickle ,cell ,disease  

,aw>5ess ,mon? to raise public aw>5ess  
(-- 7,a7 sickle cell disease trait2     
7,b7 prev5tative c>e programs1          
treatm5ts1 & o!r pati5t s]vices = ^?    
suff]+ f sickle cell disease2  7,c7     
complications f sickle cell disease2 &  
7,d7 conditions relat$ to sickle cell   
disease4