•HRES 514 IH 
disorders that is a genetic condition present at birth and 
is a major health problem in the United States and 
worldwide; 
Whereas the 2023 theme of World Sickle Cell Awareness 
Day, ‘‘Shine the Light on Sickle Cell’’ is an immediate 
call to action to improve the health and quality of life for 
individuals living with SCD and their families; 
Whereas, in 1972, Dr. Charles Whitten established the Sickle 
Cell Disease Association of America to improve research, 
education, and health care for sickle cell patients, which 
is now headquartered in Hanover, Maryland; 
Whereas, in 1972, Congress passed the National Sickle Cell 
Disease Control Act which, for the first time, provided 
authority to establish education, information, screening, 
testing, counseling, research, and treatment programs for 
sickle cell disease; 
Whereas SCD is a gene mutation that causes a single mis-
spelling in the DNA instructions for hemoglobin, a pro-
tein that aids in carrying oxygen in the blood, results in 
chronic complications related to anemia, stroke, infec-
tions, organ failure, tissue damage, intense periods of 
pain referred to as vaso-occulsive crises, and even pre-
mature death in persons living with the disease; 
Whereas sickle cell trait (SCT) occurs when a person inherits 
one copy of the sickle cell gene from one of his or her 
parents, and in the United States an estimated 
3,000,000 individuals have SCT with many unaware of 
their status; if both parents have SCT, there is a 25-per-
cent (or 1 in 4) chance that any child of theirs will have 
SCD; 
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•HRES 514 IH 
Whereas the prevalence of SCD in the United States affects 
approximately 100,000 individuals, 1 in every 365 Afri-
can-American births, and 1 in every 16,300 Hispanic- 
American births, with roughly 1 in 13 African-American 
babies born with sickle cell trait; 
Whereas the global imprint of SCD affects millions of people 
throughout the world; particularly among those persons 
whose ancestors came from sub-Saharan Africa; Spanish- 
speaking regions in the Western Hemisphere (South 
America, the Caribbean, and Central America); Saudi 
Arabia; India; and Mediterranean countries such as Tur-
key, Greece, and Italy; 
Whereas the variance related to disease prevalence of sickle 
cell trait ranges greatly by region, and there are levels re-
corded as high as 40 percent in certain areas of sub-Sa-
haran Africa, eastern Saudi Arabia, and central India; 
Whereas in countries that are poor in resources, more than 
90 percent of children with SCD do not live to see adult-
hood; 
Whereas approximately 1,000 children in Africa are born 
with SCD daily with more than half who will die before 
their fifth birthday; 
Whereas there is a high prevalence of SCD in India, most no-
tably within the central and western regions that results 
in nearly 20 percent of babies diagnosed with SCD dying 
by the age of two; 
Whereas, 16 years ago, in 2006, the World Health Assembly 
passed a resolution recognizing SCD as a public health 
priority with a call to action that each country implement 
measures to tackle the disease, and three years later, the 
United Nations adopted this same resolution in 2009; 
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•HRES 514 IH 
Whereas newborn screening for SCD is a crucial first step for 
families to obtain a timely diagnosis and the establish-
ment of comprehensive care, which in turn helps to de-
crease mortality and morbidity for higher survival rates 
in children; 
Whereas approved treatments for SCD remain few in number 
with only four Food and Drug Administration-approved 
therapies since 2017, and there is a robust SCD pipeline 
with over 40 therapies in development; 
Whereas considering the impact of this molecular disease that 
results in the suffering of patients as well as their fami-
lies living with SCD, there is an immediate need for life- 
saving therapeutics that can improve the duration and 
quality of patients lives; 
Whereas, in 2020, the National Academies of Science, Engi-
neering, and Medicine (NASEM) developed a comprehen-
sive Strategic Plan and Blueprint for Action to Address 
Sickle Cell Disease, which cited the need for new innova-
tive therapies as well as to address barriers that may im-
pact delivery and access to approved treatments; 
Whereas, in 2020, the Department of Health and Human 
Services, in partnership with the American Society of He-
matology and SickleInAfrica, in collaboration with the 
World Health Organization, hosted a webinar for a joint 
effort to strengthen SCD efforts during the coronavirus 
disease (COVID–19) pandemic and beyond; 
Whereas American Society of Hematology member and re-
cently deceased Kwaku Ohene-Frempong, M.D., Pro-
fessor Emeritus of Pediatrics at the Perelman School of 
Medicine at the University of Pennsylvania, who served 
on the Global Coalition on SCD, has been a leader in ad-
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•HRES 514 IH 
vancing the body of knowledge in SCD research, public 
health, and medicine, and is recognized as immeasurably 
benefitting thousands of children worldwide; 
Whereas there are emerging genetic therapy technologies, in-
cluding gene editing, that can modify a patient’s own 
hematopoietic stem cells with the goal of the patient 
being able to generate healthy red blood cells to prevent 
sickle cell crises; 
Whereas while hematopoietic stem cell transplantation (com-
monly known as ‘‘HSCT’’) is currently the only cure for 
SCD, and while advances in treating the associated com-
plications of SCD have occurred, more research is needed 
to find widely available treatments and cures to help indi-
viduals with SCD; and 
Whereas June 19, 2023, has been designated ‘‘World Sickle 
Cell Awareness Day’’ to increase public alertness across 
the United States and global community about sickle cell 
disease, the continued need for empirical research, early 
detection screenings for sickle cell disease trait carriers, 
novel effective treatments leading to a cure, and prevent-
ative-care programs with respect to complications from 
sickle cell anemia and conditions related to sickle cell dis-
ease: Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) supports the goals and ideals of World Sick-
le Cell Awareness Day; 
(2) commits to ensuring equitable access by 
shining the light among economic, racial, and ethnic 
groups to new treatments in order to improve health 
outcomes for those living with sickle cell disease; 
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•HRES 514 IH 
(3) calls on the Department of Health and 
Human Services to create global policy solutions 
aimed at providing support for the global community 
and at-home resources needed to provide access to 
newborn screening programs, therapeutic interven-
tions, and support services in partnership with local 
governments with the needed infrastructure for re-
search and treatment; 
(4) supports eliminating barriers to equitable 
access for innovative sickle cell disease therapies, in-
cluding cell, gene, and gene-editing therapies in the 
Medicare and Medicaid systems for patients who 
need them most; 
(5) encourages the people of the United States 
and globally to hold appropriate programs, events, 
and activities on Sickle Cell Awareness Day to raise 
public awareness of their sickle cell disease trait, 
preventative-care programs, treatments, and other 
patient services for those suffering from sickle cell 
disease, complications from sickle cell disease, and 
conditions related to sickle cell disease; and 
(6) encourages the President of the United 
States to form a Sickle Cell Disease Interagency 
Cabinet, which would be convened by the White 
House, bringing together departments and Federal 
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