IV 
117TH CONGRESS 
2D SESSION 
H. RES. 1330 
Expressing support for the designation of September 2022 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 2, 2022 
Mr. DANNY K. DAVIS of Illinois (for himself, Mr. BURGESS, Ms. LEE of Cali-
fornia, and Mr. OWENS) submitted the following resolution; which was re-
ferred to the Committee on Energy and Commerce 
RESOLUTION 
Expressing support for the designation of September 2022 
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. 
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; 
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Whereas SCD results from an individual having two copies 
of a sickle cell gene, one 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, which 
often result in lengthy hospital stays; 
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 occurring in 
approximately 1 in 365 newborn African-American in-
fants and 1 in 16,300 newborn Hispanic-American in-
fants, and SCD can be found in individuals of Mediterra-
nean, 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 
43 years for a woman and 41 years for a man; 
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Whereas, according to a 2018 study, the total economic bur-
den on the United States health care system associated 
with SCD was $2,980,000,000 annually, of which 57 per-
cent was attributed to hospital inpatient costs; 
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 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 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 and 
cures to help individuals with SCD; and 
Whereas September 2022 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 
Resolved, That the House of Representatives— 
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(1) supports the goals and ideals of ‘‘Sickle Cell 
Disease Awareness Month’’; 
(2) 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; 
(3) calls on the Department of Health and 
Human Services to create policy solutions aimed at 
eliminating barriers to equitable access for innova-
tive sickle cell disease therapies, including cell, gene, 
and gene-editing therapies, in the Medicaid and 
Medicare system for patients who need them most; 
(4) encourages the people of the United States 
to hold appropriate programs, events, and activities 
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; 
(5) encourages the President of the United 
States to form a Sickle Cell Disease Interagency 
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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 
(E) the Centers for Medicare & Medicaid 
Services; and 
(6) 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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