,,iv  #aah? ,,congress  #a/ ,session    
,h4 ,,res4 #fib  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,septemb] #ah1        
#bjbc,mr4 ,davis ( ,ill9ois 7= himself1 
,mr4 ,burgess1 ,ms4 ,lee ( ,cali=nia1 & 
,mr4 ,c>t] ( ,georgia7 submitt$ ! foll[+
 resolution2 :i* 0 ref]r$ to !          
,committee on ,en]gy & ,comm]ce         
,,resolution  ,express+ support = !     
designation ( ,septemb] #bjbc 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 results f an 
individual hav+ two copies ( a sickle   
cell g5e1 "o inh]it$ f ea* biological   
p>5t2 ,:]eas ,,scd results 9 !          

production ( abnormally %ap$ r$ blood   
cells2 ,:]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 
#b1jjj 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 a s+le  
copy ( ! sickle cell g5e1 ref]r$ to z   
sickle cell trait1 & #a 9 #ac ,african  
,am]icans c>ries ! trait2 ,:]eas sickle 
cell trait is f\nd 9 #ajj1jjj1jjj p     
worldwide1 & affects p ( ,african1      
,middle ,ea/]n1 ,s\? ,asian1 ,hispanic1 
& s\!rn ,european ,caucasian desc5t2    
,:]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 ( #dc ye>s = a woman & #da    
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 accord+ to a     
#bjbb publication1 ! av]age lifetime co/
 = individuals mo/ sev]ely impact$ by   
,,scd ranges betwe5 #d1bjj1jjj to       
#f1bjj1jjj p] pati5t2 ,:]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 ,:]eas1 = ! pa/ #ej
 ye>s1 ! ,sickle ,cell ,disease         
,association ( ,am]ica has be5 !        
national voice = ,,scd1 work+ ) m ?an   
#ej community-bas$ organizations &      
affiliates s]v+ ov] #ejj1jjj *ildr51    
adults1 & c>egiv]s impact$ by ,,scd2 &  
,:]eas ,septemb] #bjbc 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         
recognizes ! important "w ( ! ,sickle   

,cell ,disease ,association ( ,am]ica z 
x celebrates its #ej? ye> 9 rais+       
aw>5ess ( sickle cell disease1 support+ 
pati5ts & families ) ! disease & work+  
t[>d f9d+ a cure = ?is deva/at+ disease2
  7#b7 supports ! goals & ideals (      
,sickle ,cell ,disease ,aw>5ess ,mon?2  
7#c7 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#d7 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#e7 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   
disease2  7#f7 enc\rages ! ,presid5t ( !
 ,unit$ ,/ates to =m a ,sickle ,cell    
,disease ,int]ag5cy ,cab9et1 :i* w\ld be
 conv5$ by ! ,:ite ,h\se1 to beg9 work+ 
t[>d policies t w support equitable &   
appropriate access to innovative sickle 
cell disease !rapies1 by br++ toge!r    
dep>tm5ts & ag5cies across ! ,f$]al     
,gov]nm5t to address sickle cell disease
 on multiple fronts1 includ+--  7,a7 !  
,dep>tm5t ( ,heal? & ,human ,s]vices2   
7,b7 ! ,dep>tm5t ( ,vet]ans ,affairs2   
7,c7 ! ,national ,in/itutes ( ,heal?2   
7,d7 ! ,food & ,drug ,adm9i/ration2 &   
7,e7 ! ,c5t]s = ,m$ic>e  ,m$icaid       
,s]vices2 &  7#g7 urges t ! options to  
be consid]$ by ! ,sickle ,cell ,disease 
,int]ag5cy ,cab9et n only address access
 to pot5tial future curative treatm5ts1 
b also address ! bias t ^? ) sickle cell
 disease cont9ue to face )9 ! ,unit$    
,/ates heal? c>e sy/em4