,,iii  #aahth ,,congress  #ast ,session 
,s4 ,,res4 #bee  ,,in ,,the ,,senate    
,,of ,,the ,,united ,,states  ,june #ae1
 #bjbc,mr4 ,booker 7for himself1 ,mr4   
,van ,hollen1 and ,mr4 ,brown7 submitted
 the following resolution2 which was    
referred to the ,committee on ,foreign  
,relations  ,,resolution  ,expressing   
support for the designation of ,june    
#ai1 #bjbc1 as ,world ,sickle ,cell     
,awareness ,day in order to increase    
public awareness across the ,united     
,states and global community about      
sickle cell disease and the continued   
need for empirical research1 early      
detection screenings1 novel effective   
treatments leading to a cure1 and       
preventative care programs with respect 
to complications from sickle cell anemia
 and conditions relating to sickle cell 
disease4  ,whereas sickle cell disease  
7referred to in this preamble as ,,scd7 
is a group of inherited red blood cell  
disorders1 a genetic condition present  
at birth1 and a major health problem in 

the ,united ,states and worldwide2      
,whereas the #bjbc theme of ,world      
,sickle ,cell ,awareness ,day1 ,shine   
the ,light on ,sickle ,cell1 is an      
immediate call to action to improve the 
health and quality of life for          
individuals living with ,,scd and their 
families2 ,whereas1 in #aigb1 ,dr4      
,charles ,whitten established the       
,sickle ,cell ,disease ,association of  
,america to improve research1 education1
 and health care for ,,scd patients and 
which is now headquartered in ,hanover1 
,maryland2 ,whereas1 in #aigb1 ,congress
 passed the ,national ,sickle ,cell     
,anemia ,control ,act 7,public ,law     
#ib-bid2 #hf ,stat4 #acf71 which1 for   
the first time1 provided authority to   
establish education1 information1       
screening1 testing1 counseling1         
research1 and treatment programs for    
,,scd2 ,whereas sickle cell trait       
7referred to in this preamble as ,,sct7 
is a gene mutation that causes a single 
misspelling in the ,,dna instructions   

for hemoglobin1 a protein that aids in  
carrying oxygen in the blood1 and       
results in chronic complications1       
including anemia1 stroke1 infections1   
organ failure1 tissue damage1 intense   
periods of pain referred to as          
vaso-occulsive crises1 and even         
premature death in individuals living   
with ,,scd2 ,whereas ,,sct occurs when  
an individual inherits #a copy of the   
sickle cell gene from #a parent1 and1   
when both parents have ,,sct1 there is a
 #be percent chance that any of their   
children will have ,,scd2 ,whereas there
 are an estimated #c1jjj1jjj individuals
 with ,,sct in the ,united ,states1 with
 many unaware of their status2 ,whereas 
an estimated #ajj1jjj individuals have  
,,scd in the ,united ,states1 with #a   
out of every #cfe ,african-,american    
births and #a out of every #af1cjj      
,hispanic-,american births resulting in 
,,scd1 and nearly #a out of #ac         
,african-,american babies are born with 
,,sct2 ,whereas ,,scd affects millions  

of individuals throughout the world1    
especially individuals of genetic       
descent from sub-,saharan regions of    
,africa1 ,south ,america1 the           
,caribbean1 ,central ,america1 ,saudi   
,arabia1 ,india1 ,turkey1 ,greece1 and  
,italy2 ,whereas the variance relating  
to disease prevalence of ,,sct ranges   
greatly by region1 with rates as high as
 #dj percent in certain regions of      
sub-,saharan ,africa1 eastern ,saudi    
,arabia1 and central ,india2 ,whereas1  
in many countries that are poor in      
resources1 more than #ij percent of     
children with ,,scd do not live to see  
adulthood2 ,whereas approximately #a1jjj
 children in ,africa are born with ,,scd
 each day1 more than #a_/b of whom will 
die before their fifth birthday2        
,whereas the high prevalence of ,,scd in
 the central and western regions of     
,india results in approximately #bj     
percent of babies diagnosed with ,,scd  
in those regions dying before the age of
 #b2 ,whereas1 in #bjjf1 the ,world     

,health ,assembly passed a resolution1  
adopted by the ,united ,nations in      
#bjji1 recognizing ,,scd as a public    
health priority with a call to action   
for each country to implement measures  
to tackle the disease2 ,whereas         
screening newborns for ,,scd is a       
crucial first step for families to      
obtain a timely diagnosis1 to obtain    
comprehensive care1 and to decrease the 
mortality rate for children with respect
 to ,,scd2 ,whereas approved treatments 
for ,,scd are limited1 with the ,food   
and ,drug ,administration approving only
 #d ,,scd therapies since #bjag1 but1 as
 of the date of adoption of this        
resolution1 there are more than #dj     
,,scd therapies in development2 ,whereas
 there is an immediate need for         
lifesaving therapeutics that can improve
 the duration and quality of life for   
individuals with ,,scd2 ,whereas1 in    
#bjbj1 the ,national ,academies of      
,sciences1 ,engineering1 and ,medicine  
developed a comprehensive strategic plan

 and blueprint for action to address    
,,scd1 which highlights the need to     
develop new innovative therapies and to 
address barriers to the equitable access
 of approved treatments2 ,whereas1 in   
#bjbj1 the ,department of ,health and   
,human ,services1 in partnership with   
the ,american ,society of ,hematology   
and the ,sickle,in,africa ,consortium1  
and in collaboration with the ,world    
,health ,organization1 hosted a webinar 
for a joint effort to strengthen efforts
 to combat ,,scd during the ,,covid-#ai 
pandemic and beyond2 ,whereas the late  
,kwaku ,ohene-,frempong1 ,m4,d41        
,professor ,emeritus of ,pediatrics at  
the ,perelman ,school of ,medicine at   
the ,university of ,pennsylvania1 an    
,american ,society of ,hematology member
 who founded and served as a member of  
the ,global ,sickle ,cell ,disease      
,network1 was a leader in advancing the 
body of knowledge in ,,scd research1    
public health1 and medicine and is      
recognized as immeasurably benefitting  

thousands of children worldwide2        
,whereas there are emerging genetic     
therapy technologies1 including gene    
editing1 that can modify a patient's own
 hematopoietic stem cells to enable them
 to generate healthy red blood cells to 
prevent sickle cell crises2 ,whereas    
hematopoietic stem cell transplantation 
7commonly known as 8,,hsct07 is         
currently the only cure for ,,scd1 and  
while advancements in treatment for     
complications associated with ,,scd have
 been made1 more research is needed to  
find widely available and accessible    
treatments and cures to help individuals
 with ,,scd2 and ,whereas1 although     
,june #ai1 #bjbc1 has been designated as
 8,world ,sickle ,cell ,awareness ,day0 
to increase public awareness across the 
,united ,states and global community    
about ,,scd1 there remains a continued  
need for empirical research1 early      
detection screenings1 novel effective   
treatments leading to a cure1 and       
preventative care programs with respect 

to complications from sickle cell anemia
 and conditions relating to ,,scd3 ,now1
 therefore1 be it ,that the ,senate--   
7#a7 supports the goals and ideals of   
,world ,sickle ,cell ,awareness ,day2   
7#b7 commits to ensuring equitable      
access to new sickle cell disease       
7referred to in this resolution as      
,,scd7 treatments by shining the light  
among all economic1 racial1 and ethnic  
groups to improve health outcomes for   
individuals living with ,,scd2  7#c7    
calls on the ,department of ,health and 
,human ,services to create global policy
 solutions aimed at providing support   
for the global community with respect to
 ,,scd and1 in partnership with local   
governments1 the domestic resources     
needed to provide access to newborn     
screening programs1 therapeutic         
interventions1 and support services with
 respect to ,,scd2  7#d7 supports       
eliminating barriers to equitable access
 to innovative ,,scd therapies1         
including cell1 gene1 and gene-editing  

therapies in the ,medicare and ,medicaid
 systems for the most vulnerable        
patients2  7#e7 encourages the people of
 the ,united ,states and the world to   
hold appropriate programs1 events1 and  
activities on ,world ,sickle ,cell      
,awareness ,day to raise public         
awareness of ,,scd traits1              
preventative-care programs1 treatments1 
and other patient services for those    
suffering from ,,scd1 complications from
 ,,scd1 and conditions relating to      
,,scd2  7#f7 encourages the ,president  
to form a ,sickle ,cell ,disease        
,interagency ,group1 which should       
include the ,department of ,health and  
,human ,services1 the ,department of    
,veterans ,affairs1 the ,national       
,institutes of ,health1 the ,food and   
,drug ,administration1 and the ,centers 
for ,medicare  ,medicaid ,services1 to  
work toward policies that will support  
equitable and appropriate access to     
innovative ,,scd therapies2 and  7#g7   
with respect to the policies described  

in paragraph 7#f71 urges the interagency
 group described in that paragraph to   
consider options that not only address  
access to potential future curative     
treatments for ,,scd1 but also address  
the bias that the population most       
affected by ,,scd continues to face     
within the ,united ,states and global   
healthcare systems4