,,iv  #aafth ,,congress  #ast ,session  
,h4 ,,res4 #fjf  ,,in ,,the ,,house ,,of
 ,,representatives  ,september #bg1     
#bjai,ms4 ,lee of ,california 7for      
herself1 ,mr4 ,burgess1 ,mr4 ,danny ,k4 
,davis of ,illinois1 ,mr4 ,serrano1 ,ms4
 ,sewell of ,alabama1 ,ms4 ,jackson     
,lee1 ,ms4 ,norton1 ,mr4 ,brown of      
,maryland1 ,mr4 ,cohen1 ,ms4 ,tlaib1    
,mr4 ,david ,scott of ,georgia1 and ,ms4
 ,fudge7 submitted the following        
resolution2 which was referred to the   
,committee on ,energy and ,commerce     
,,resolution  ,calling for sickle cell  
trait research1 surveillance1 and public
 education and awareness1 and for other 
purposes4  ,whereas sickle cell disease 
is the most common inherited blood      
disorder in the ,united ,states1        
affecting approximately #ajj1jjj people 
in the ,united ,states2 ,whereas more   
than #c1jjj1jjj people in the ,united   
,states have the sickle cell trait1 and 
many are unaware of their status2       
,whereas in #bjaj1 the total number of  

babies born with sickle cell trait was  
estimated to have exceeded #fj1jjj1 and 
the total ,united ,states incidence     
estimate was #ae4e cases per #a1jjj     
births2 ,whereas sickle cell disease    
occurs in about #a out of every #cfe    
,black or ,african-,american births and 
#a out of every #af1cjj                 
,hispanic-,american births2 ,whereas    
individuals who have sickle cell trait  
have a #ej-percent chance of passing on 
the abnormal sickle cell gene to future 
offspring and #be-percent chance of     
having future children with sickle cell 
disease if both parents have the trait2 
,whereas sickle cell disease can be     
identified before birth by testing a    
sample of amniotic fluid or tissue from 
the placenta2 ,whereas individuals with 
sickle cell trait have the same life    
expectancy as the general population1   
but are at risk for certain conditions1 
including blood in the urine1 kidney    
cancer1 complications with trauma to the
 eye1 and tissue death in the spleen at 

high altitudes1 or may have a false     
positive ,a#a;,c test2 ,whereas during  
the #aaeth ,congress1 ,public ,law      
#aae-cbg reauthorized a sickle cell     
disease prevention and treatment        
demonstration program and provided for  
sickle cell research1 surveillance1     
prevention1 and treatment2 ,whereas     
following the enactment of ,public ,law 
#aae-cbg1 the ,national ,institutes of  
,health launched the ,cure ,sickle ,cell
 ,initiative aimed at bringing genetic  
therapies into first-in-human clinical  
trials within five years and moving     
newly developed genetic therapies1      
including gene-editing approaches1 into 
clinical research2 ,whereas             
communication of a screening result     
consistent with sickle cell trait should
 always be accompanied by appropriate   
counseling on the implications1 provided
 by an individual with adequate training
 and understanding of the information2  
,whereas the limited research on the    
communication of sickle cell trait test 

results to patients demonstrates that   
there is a high prevalence of misleading
 information being communicated during  
counseling sessions for sickle cell     
trait following newborn screening by    
clinicians2 and ,whereas no studies have
 examined whether information on sickle 
cell trait test results is being        
accurately transmitted to an individual1
 whether by a family member or health   
care provider1 prior to a person's      
reproductive years3 ,now1 therefore1 be 
it  ,that the ,house of                 
,representatives-- 7#a7 recognizes the  
importance of ensuring that people in   
the ,united ,states can make informed   
decisions as a result of awareness of   
their sickle cell trait status2  7#b7   
recognizes the ongoing challenges in    
addressing health outcomes among people 
with sickle cell trait and sickle cell  
disease2  7#c7 recognizes the importance
 of the development of1 and access to1  
new treatments for sickle cell disease2 
7#d7 encourages the medical community1  

in coordination with ,state and ,federal
 government1 to work to ensure that all 
individuals are made aware of their     
sickle cell trait status by developing a
 common strategy for dissemination of   
screening results1 education1 and       
counseling to parents and families in   
collaboration with all #ej ,states'     
newborn screening programs2  7#e7 calls 
on the ,department of ,health and ,human
 ,services1 in collaboration with       
experts1 to develop a surveillance and  
public awareness campaign regarding the 
importance of knowing one's sickle cell 
trait status and to gain knowledge on   
sickle cell disease for all racial and  
ethnic groups in the ,united ,states2   
7#f7 commits to build on the progress of
 ,public ,law #aae-cbg which            
reauthorized a sickle cell disease      
prevention and treatment demonstration  
program and provided for sickle cell    
research1 surveillance1 prevention1 and 
treatment2  7#g7 calls on the           
,department of ,health and ,human       

,services to expand access for screening
 and appropriate counseling for carriers
 of sickle cell trait2  7#h7 commits to 
ensuring support for research that      
expands our understanding of the health 
outcomes and other implications of      
sickle cell trait and the health        
outcomes associated with sickle cell    
disease2 and  7#i7 commits to ensuring  
equitable access among economic1 racial1
 and ethnic groups to new treatments in 
order to improve health outcomes for    
those with sickle cell disease4