IV 
118TH CONGRESS 
2D SESSION 
H. RES. 1495 
Expressing support for the designation of September 2024 as ‘‘Sickle Cell 
Disease Awareness Month’’ in order to educate communities across the 
United States about sickle cell disease and the need for research, early 
detection methods, effective treatments, and preventative care programs 
with respect to complications from sickle cell disease and conditions 
related to sickle cell disease. 
IN THE HOUSE OF REPRESENTATIVES 
SEPTEMBER 24, 2024 
Mr. DAVIS of Illinois (for himself, Mr. BURGESS, Ms. LEE of California, Ms. 
SEWELL, Ms. TLAIB, Ms. KELLY of Illinois, Ms. NORTON, Mr. JOHNSON 
of Georgia, Ms. BARRAGA´N, Ms. WILLIAMS of Georgia, Mr. CLEAVER, 
Ms. PLASKETT, Ms. BUSH, Ms. CLARKE of New York, Mr. BISHOP of 
Georgia, Mr. KENNEDY, Mr. CARSON, Mr. SOTO, Mr. AMO, and Ms. 
ADAMS) submitted the following resolution; which was referred to the 
Committee on Energy and Commerce 
RESOLUTION 
Expressing support for the designation of September 2024 
as ‘‘Sickle Cell Disease Awareness Month’’ in order to 
educate communities across the United States about sick-
le cell disease and the need for research, early detection 
methods, effective treatments, and preventative care pro-
grams with respect to complications from sickle cell dis-
ease and conditions related to sickle cell disease. 
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Whereas sickle cell disease (referred to in this preamble as 
‘‘SCD’’) is an inherited blood disorder that is a major 
health problem in the United States and worldwide; 
Whereas SCD results from an individual having 2 copies of 
a sickle cell gene, 1 inherited from each biological parent; 
Whereas SCD results in the production of abnormally shaped 
red blood cells; 
Whereas SCD causes episodes of considerable pain in the 
arms, legs, chest, and abdomen of an individual; 
Whereas SCD affects an estimated 100,000 individuals in the 
United States; 
Whereas, approximately 2,000 babies are born with SCD 
each year in the United States, with the disease occur-
ring in approximately 1 in 365 newborn African-Amer-
ican infants and 1 in 16,300 newborn Hispanic-American 
infants, and SCD can be found in individuals of Medi-
terranean, Middle Eastern, Asian, and Indian origin; 
Whereas more than 3,000,000 individuals in the United 
States have a single copy of the sickle cell gene, referred 
to as sickle cell trait, and 1 in 13 African Americans car-
ries the trait; 
Whereas sickle cell trait is found in 100,000,000 people 
worldwide, and affects people of African, Middle Eastern, 
South Asian, Hispanic, and southern European Cauca-
sian descent; 
Whereas there is a 1 in 4 chance that a child born to parents 
who both have the sickle cell trait will have the disease; 
Whereas the life expectancy of an individual with SCD in the 
United States is often severely limited to an average of 
55 years for a woman and 49 years for a man; 
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Whereas, according to a 2022 publication, the average life-
time cost for individuals most severely impacted by SCD 
ranges between $4,200,000 to $6,200,000 per patient; 
Whereas, in 2020, the National Academies of Sciences, Engi-
neering, and Medicine developed a comprehensive Stra-
tegic Plan and Blueprint for Action to Address Sickle 
Cell Disease, which cited the need for new innovative 
therapies as well as to address barriers that may impact 
delivery and access to approved treatments; 
Whereas there are approved 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 crisis; 
Whereas, while hematopoietic stem cell transplantation is cur-
rently the only cure for SCD and advances in treating 
the associated complications of SCD have occurred, more 
research is needed to find widely available treatments to 
help individuals with SCD; 
Whereas the Sickle Cell Disease Association of America has 
been the national voice for SCD, working with more than 
50 community-based organizations and affiliates serving 
over 500,000 children, adults, and caregivers impacted by 
SCD; and 
Whereas September 2024 has been designated as ‘‘Sickle Cell 
Disease Awareness Month’’ in order to educate commu-
nities across the United States about SCD, including 
early detection methods, effective treatments, and pre-
ventative care programs with respect to complications 
from SCD and conditions related to SCD: Now, there-
fore, be it 
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Resolved, That the House of Representatives— 
(1) recognizes the important work of the Sickle 
Cell Disease Association of America in raising 
awareness of sickle cell disease, supporting patients 
and families with the disease, and working toward 
finding a cure for this devastating disease; 
(2) supports the goals and ideals of ‘‘Sickle Cell 
Disease Awareness Month’’; 
(3) commits to ensuring equitable access among 
economic, racial, and ethnic groups to new treat-
ments in order to improve health outcomes for those 
with sickle cell disease; 
(4) calls on the Department of Health and 
Human Services to create policy solutions aimed at 
eliminating barriers to equitable access for special-
ized treatment and innovative sickle cell disease 
therapies, including cell, gene, and gene-editing 
therapies, in the Medicaid and Medicare system for 
patients who need them most; 
(5) calls on the National Institutes of Health to 
increase funding for research on treatments and 
cures for sickle cell disease; 
(6) encourages the people of the United States 
to hold appropriate programs, events, and activities 
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during ‘‘Sickle Cell Disease Awareness Month’’ to 
raise public awareness of— 
(A) sickle cell disease trait; 
(B) preventative care programs, treat-
ments, and other patient services for those suf-
fering from sickle cell disease; 
(C) complications from sickle cell disease; 
and 
(D) conditions related to sickle cell disease; 
(7) encourages the President of the United 
States to form a Sickle Cell Disease Interagency 
Cabinet, which would be convened by the White 
House, to begin working toward policies that will 
support equitable and appropriate access to innova-
tive sickle cell disease therapies, by bringing together 
departments and agencies across the Federal Gov-
ernment to address sickle cell disease on multiple 
fronts, including— 
(A) the Department of Health and Human 
Services; 
(B) the Department of Veterans Affairs; 
(C) the National Institutes of Health; 
(D) the Food and Drug Administration; 
and 
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(E) the Centers for Medicare & Medicaid 
Services; and 
(8) urges that the options to be considered by 
the Sickle Cell Disease Interagency Cabinet not only 
address access to potential future curative treat-
ments, but also address the bias that those with 
sickle cell disease continue to face within the United 
States health care system. 
Æ 
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