•HRES 1304 IH 
Whereas sickle cell disease (referred to in this preamble as 
‘‘SCD’’) is a group of inherited red blood cell disorders, 
a genetic condition present at birth, and a major health 
problem in the United States and worldwide; 
Whereas the 2024 theme of World Sickle Cell Awareness 
Day, ‘‘Hope Through Progress: Advancing Sickle Cell 
Care Globally’’, is an immediate call to bring voices to-
gether to improve the health and quality of life for indi-
viduals living with SCD and their families; 
Whereas, in 1972, Dr. Charles Whitten cofounded the Sickle 
Cell Disease Association of America to improve research, 
education, and health care for SCD patients and which 
is now headquartered in Hanover, Maryland; 
Whereas, in 1972, Congress passed the National Sickle Cell 
Anemia Control Act (Public Law 92–294; 86 Stat. 136), 
which, for the first time, provided authority to establish 
education, information, screening, testing, counseling, re-
search, and treatment programs for SCD; 
Whereas sickle cell trait (referred to in this preamble as 
‘‘SCT’’) 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, and can 
result in chronic complications, including anemia, stroke, 
infections, organ failure, tissue damage, intense periods 
of pain referred to as vaso-occulsive crises, and even pre-
mature death in individuals living with SCD; 
Whereas SCT occurs when an individual inherits 1 copy of 
the sickle cell gene from 1 parent, and, although most in-
dividuals who have SCT live normal lives, when both par-
ents have SCT, there is a 25-percent chance that any of 
their children will have SCD; 
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•HRES 1304 IH 
Whereas there are an estimated 1,000,000 to 3,000,000 indi-
viduals with SCT in the United States, with many un-
aware of their status; 
Whereas an estimated 100,000 individuals have SCD in the 
United States, with 1 out of every 365 African-American 
births and 1 out of every 16,300 Hispanic-American 
births resulting in SCD, and nearly 1 out of 13 African- 
American babies are born with SCT; 
Whereas SCD affects millions of individuals throughout the 
world, especially individuals of genetic descent from cer-
tain countries in sub-Saharan Africa, South and Central 
America, the Caribbean, South Asia, the Middle East, 
and the Mediterranean basin; 
Whereas the variance relating to the prevalence of SCT 
ranges greatly by region and demography, with overall 
rates as high as 40 percent in parts of sub-Saharan Afri-
ca and among newborns in parts of India; 
Whereas, in many countries that are poor in resources, 90 
percent of children with SCD do not live to see adult-
hood; 
Whereas, approximately 1,000 children in Africa are born 
with SCD each day, more than one half of whom will die 
before their fifth birthday; 
Whereas the high prevalence of SCD in the central and west-
ern regions of India results in approximately 20 percent 
of babies diagnosed with SCD in parts of the western re-
gion dying before the age of 2; 
Whereas, in 2006, the World Health Assembly passed a reso-
lution, adopted by the United Nations in 2009, recog-
nizing SCD as a public health priority with a call to ac-
tion for each country to implement measures to tackle 
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•HRES 1304 IH 
the disease, and in 2010, the World Health Assembly 
passed a resolution relating to preventing and managing 
birth defects, including SCD; 
Whereas screening newborns for SCD is a crucial first step 
for families to obtain a timely diagnosis, to obtain com-
prehensive care, and to decrease the mortality rate for 
children with respect to SCD; 
Whereas approved treatments for SCD are limited, with the 
Food and Drug Administration approving only 4 SCD 
therapies since 2017, but, as of the date of adoption of 
this resolution, there are more than 40 SCD therapies in 
development; 
Whereas there is an immediate need for lifesaving thera-
peutics that can improve the duration and quality of life 
for individuals with SCD; 
Whereas, in 2020, the National Academies of Sciences, Engi-
neering, and Medicine developed a comprehensive stra-
tegic plan and blueprint for action to address SCD, which 
highlights the need to develop new innovative therapies 
and to address barriers to the equitable access of ap-
proved treatments; 
Whereas, in 2020, the Department of Health and Human 
Services, in partnership with the American Society of He-
matology and the SickleInAfrica Consortium, and in col-
laboration with the World Health Organization, hosted a 
webinar for a joint effort to strengthen efforts to combat 
SCD during the COVID–19 pandemic and beyond; 
Whereas the late Kwaku Ohene-Frempong, M.D., Professor 
Emeritus of Pediatrics at the Perelman School of Medi-
cine at the University of Pennsylvania, an American Soci-
ety of Hematology member who founded and served as a 
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•HRES 1304 IH 
member of the Global Sickle Cell Disease Network, was 
a leader in advancing the body of knowledge in SCD re-
search, public health, and medicine and is recognized as 
immeasurably benefitting thousands of children world-
wide; 
Whereas there are emerging genetic therapy technologies, in-
cluding 2 therapies approved by the Food and Drug Ad-
ministration in December of 2023, that can modify a pa-
tient’s own hematopoietic stem cells to enable them to 
generate healthy red blood cells to prevent sickle cell cri-
ses; 
Whereas hematopoietic stem cell transplantation (commonly 
known as ‘‘HSCT’’) is currently the only cure for SCD, 
and while advancements in treatment for complications 
associated with SCD have been made, more research is 
needed to find widely available and accessible treatments 
and cures to help individuals with SCD; and 
Whereas, although June 19, 2024, has been designated as 
‘‘World Sickle Cell Awareness Day’’ to increase public 
awareness across the United States and global commu-
nity about SCD, there remains a continued need for em-
pirical research, early detection screenings, novel effective 
treatments leading to a cure, and preventative care pro-
grams with respect to complications from sickle cell ane-
mia and conditions relating to SCD: 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 to new 
sickle cell disease (referred to in this resolution as 
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•HRES 1304 IH 
‘‘SCD’’) treatments by shining the light among all 
economic, racial, and ethnic groups to improve 
health outcomes for individuals living with SCD; 
(3) 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 and, in partnership with local 
governments, the domestic resources needed to pro-
vide access to newborn screening programs, thera-
peutic interventions, and support services with re-
spect to SCD; 
(4) supports eliminating barriers to equitable 
access to innovative SCD therapies, including cell, 
gene, and gene-editing therapies in the Medicare and 
Medicaid systems for the most vulnerable patients; 
(5) encourages the people of the United States 
and the world to hold appropriate programs, events, 
and activities on World Sickle Cell Awareness Day 
to raise public awareness of SCD traits, preventa-
tive-care programs, treatments, and other patient 
services for those suffering from SCD, complications 
from SCD, and conditions relating to SCD; 
(6) encourages the President to form a Sickle 
Cell Disease Interagency Group, which should in-
clude the Department of Health and Human Serv-
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