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 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. 


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•HRES 1495 IH 

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 occurring in approximately 1 in 365 newborn African-American infants and 1 in 16,300 newborn Hispanic-American 

infants, and SCD can be found in individuals of Mediterranean, 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 carries 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 Caucasian 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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•HRES 1495 IH 

Whereas, according to a 2022 publication, the average lifetime 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, Engineering, and Medicine developed a comprehensive Strategic 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, including 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 currently 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 communities across the United States about SCD, including 

early detection methods, effective treatments, and preventative care programs with respect to complications 

from SCD and conditions related to SCD: Now, therefore, be it 


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•HRES 1495 IH 

1 Resolved, That the House of Representatives— 

2 (1) recognizes the important work of the Sickle 

3 Cell Disease Association of America in raising 

4 awareness of sickle cell disease, supporting patients 

5 and families with the disease, and working toward 

6 finding a cure for this devastating disease; 

7 (2) supports the goals and ideals of ‘‘Sickle Cell 

8 Disease Awareness Month’’; 

9 (3) commits to ensuring equitable access among 

10 economic, racial, and ethnic groups to new treat11 ments in order to improve health outcomes for those 

12 with sickle cell disease; 

13 (4) calls on the Department of Health and 

14 Human Services to create policy solutions aimed at 

15 eliminating barriers to equitable access for special16 ized treatment and innovative sickle cell disease 

17 therapies, including cell, gene, and gene-editing 

18 therapies, in the Medicaid and Medicare system for 

19 patients who need them most; 

20 (5) calls on the National Institutes of Health to 

21 increase funding for research on treatments and 

22 cures for sickle cell disease; 

23 (6) encourages the people of the United States 

24 to hold appropriate programs, events, and activities 


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•HRES 1495 IH 

1 during ‘‘Sickle Cell Disease Awareness Month’’ to 

2 raise public awareness of— 

3 (A) sickle cell disease trait; 

4 (B) preventative care programs, treat5 ments, and other patient services for those suf6 fering from sickle cell disease; 

7 (C) complications from sickle cell disease; 

8 and 

9 (D) conditions related to sickle cell disease; 

10 (7) encourages the President of the United 

11 States to form a Sickle Cell Disease Interagency 

12 Cabinet, which would be convened by the White 

13 House, to begin working toward policies that will 

14 support equitable and appropriate access to innova15 tive sickle cell disease therapies, by bringing together 

16 departments and agencies across the Federal Gov17 ernment to address sickle cell disease on multiple 

18 fronts, including— 

19 (A) the Department of Health and Human 

20 Services; 

21 (B) the Department of Veterans Affairs; 

22 (C) the National Institutes of Health; 

23 (D) the Food and Drug Administration; 

24 and 


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•HRES 1495 IH 

1 (E) the Centers for Medicare & Medicaid 

2 Services; and 

3 (8) urges that the options to be considered by 

4 the Sickle Cell Disease Interagency Cabinet not only 

5 address access to potential future curative treat6 ments, but also address the bias that those with 

7 sickle cell disease continue to face within the United 

8 States health care system. 

Æ 


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