,,iv  #aaf? ,,congress  #a/ ,session    
,h4 ,,res4 #fjf  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,septemb] #bg1        
#bjai,ms4 ,lee ( ,cali=nia 7= h]self1   
,mr4 ,burgess1 ,mr4 ,danny ,k4 ,davis ( 
,ill9ois1 ,mr4 ,s]rano1 ,ms4 ,sewell (  
,alabama1 ,ms4 ,jackson ,lee1 ,ms4      
,norton1 ,mr4 ,br[n ( ,m>yl&1 ,mr4      
,coh51 ,ms4 ,tlaib1 ,mr4 ,david ,scott (
 ,georgia1 & ,ms4 ,fudge7 submitt$ !    
foll[+ resolution2 :i* 0 ref]r$ to !    
,committee on ,en]gy & ,comm]ce         
,,resolution  ,call+ = sickle cell trait
 rese>*1 surveillance1 & public         
education & aw>5ess1 & = o!r purposes4  
,:]eas sickle cell disease is ! mo/     
common inh]it$ blood disord] 9 ! ,unit$ 
,/ates1 affect+ approximately #ajj1jjj p
 9 ! ,unit$ ,/ates2 ,:]eas m ?an        
#c1jjj1jjj p 9 ! ,unit$ ,/ates h !      
sickle cell trait1 & _m are unaw>e ( _! 
/atus2 ,:]eas 9 #bjaj1 ! total numb] (  
babies born ) sickle cell trait 0       
e/imat$ to h exce$$ #fj1jjj1 & ! total  
,unit$ ,/ates incid5ce e/imate 0 #ae4e  

cases p] #a1jjj bir?s2 ,:]eas sickle    
cell disease occurs 9 ab\t #a out ( e   
#cfe ,black or ,african-,am]ican bir?s &
 #a out ( e #af1cjj ,hispanic-,am]ican  
bir?s2 ,:]eas individuals :o h sickle   
cell trait h a #ej-p]c5t *ance ( pass+  
on ! abnormal sickle cell g5e to future 
(fspr+ & #be-p]c5t *ance ( hav+ future  
*ildr5 ) sickle cell disease if bo?     
p>5ts h ! trait2 ,:]eas sickle cell     
disease c be id5tifi$ be=e bir? by te/+ 
a sample ( amniotic fluid or tissue f ! 
plac5ta2 ,:]eas individuals ) sickle    
cell trait h ! same life expectancy z ! 
g5]al population1 b are at risk = c]ta9 
conditions1 includ+ blood 9 ! ur9e1     
kidney canc]1 complications ) trauma to 
! eye1 & tissue dea? 9 ! sple5 at high  
altitudes1 or may h a false positive    
,a#a;,c te/2 ,:]eas dur+ ! #aae?        
,congress1 ,public ,law #aae-cbg        
reau?oriz$ a sickle cell disease        
prev5tion & treatm5t demon/ration       
program & provid$ = sickle cell rese>*1 
surveillance1 prev5tion1 & treatm5t2    

,:]eas foll[+ ! enactm5t ( ,public ,law 
#aae-cbg1 ! ,national ,in/itutes (      
,heal? laun*$ ! ,cure ,sickle ,cell     
,initiative aim$ at br++ g5etic !rapies 
into fir/-9-human cl9ical trials )9 five
 ye>s & mov+ newly develop$ g5etic      
!rapies1 includ+ g5e-edit+ approa*es1   
into cl9ical rese>*2 ,:]eas             
communication ( a scre5+ result consi/5t
 ) sickle cell trait %\ld always be     
accompani$ by appropriate c\nsel+ on !  
implications1 provid$ by an individual )
 adequate tra9+ & und]/&+ ( ! in=mation2
 ,:]eas ! limit$ rese>* on !            
communication ( sickle cell trait te/   
results to pati5ts demon/rates t !re is 
a high preval5ce ( mislead+ in=mation   
be+ communicat$ dur+ c\nsel+ sessions = 
sickle cell trait foll[+ newborn scre5+ 
by cl9icians2 & ,:]eas no /udies h      
exam9$ :e!r in=mation on sickle cell    
trait te/ results is be+ accurately     
transmitt$ to an individual1 :e!r by a  
family memb] or heal? c>e provid]1 prior
 to a p]son's reproductive ye>s3 ,n[1   

!re=e1 be x  ,t ! ,h\se (               
,repres5tatives-- 7#a7 recognizes !     
importance ( ensur+ t p 9 ! ,unit$      
,/ates c make in=m$ decisions z a result
 ( aw>5ess ( _! sickle cell trait /atus2
  7#b7 recognizes ! ongo+ *all5ges 9    
address+ heal? outcomes among p ) sickle
 cell trait & sickle cell disease2  7#c7
 recognizes ! importance ( ! developm5t 
(1 & access to1 new treatm5ts = sickle  
cell disease2  7#d7 enc\rages ! m$ical  
community1 9 coord9ation ) ,/ate &      
,f$]al gov]nm5t1 to "w to ensure t all  
individuals are made aw>e ( _! sickle   
cell trait /atus by develop+ a common   
/rategy = dissem9ation ( scre5+ results1
 education1 & c\nsel+ to p>5ts &        
families 9 collaboration ) all #ej      
,/ates' newborn scre5+ programs2  7#e7  
calls on ! ,dep>tm5t ( ,heal? & ,human  
,s]vices1 9 collaboration ) exp]ts1 to  
develop a surveillance & public aw>5ess 
campaign reg>d+ ! importance ( kn[+ "o's
 sickle cell trait /atus & to ga9 k on  
sickle cell disease = all racial & e?nic

 gr\ps 9 ! ,unit$ ,/ates2  7#f7 commits 
to build on ! progress ( ,public ,law   
#aae-cbg :i* reau?oriz$ a sickle cell   
disease prev5tion & treatm5t            
demon/ration program & provid$ = sickle 
cell rese>*1 surveillance1 prev5tion1 & 
treatm5t2  7#g7 calls on ! ,dep>tm5t (  
,heal? & ,human ,s]vices to exp& access 
= scre5+ & appropriate c\nsel+ = c>ri]s 
( sickle cell trait2  7#h7 commits to   
ensur+ support = rese>* t exp&s our     
und]/&+ ( ! heal? outcomes & o!r        
implications ( sickle cell trait & !    
heal? outcomes associat$ ) sickle cell  
disease2 &  7#i7 commits to ensur+      
equitable access among economic1 racial1
 & e?nic gr\ps to new treatm5ts 9 ord]  
to improve heal? outcomes = ^? ) sickle 
cell disease4