IV 

118TH CONGRESS 

1ST SESSION H. RES. 692 

Expressing support for the designation of September 2023 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 18, 2023 

Mr. DAVIS of Illinois (for himself, Mr. BURGESS, Ms. LEE of California, and 

Mr. CARTER of Georgia) submitted the following resolution; which was 

referred to the Committee on Energy and Commerce 

RESOLUTION 

Expressing support for the designation of September 2023 

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. 

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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•HRES 692 IH 

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 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 

43 years for a woman and 41 years for a man; 


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•HRES 692 IH 

Whereas, according to a 2018 study, the total economic burden on the United States health care system associated 

with SCD was $2,980,000,000 annually, of which 57 percent was attributed to hospital inpatient costs; 

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 emerging 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 and 

cures to help individuals with SCD; 

Whereas, for the past 50 years, 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 2023 has been designated as Sickle Cell 

Disease Awareness Month in order to educate communities across the United States about SCD, including 


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

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

1 Resolved, That the House of Representatives— 

2 (1) recognizes the important work of the Sickle 

3 Cell Disease Association of America as it celebrates 

4 its 50th year in raising awareness of sickle cell dis5 ease, supporting patients and families with the dis6 ease and working toward finding a cure for this dev7 astating disease; 

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

9 Disease Awareness Month’’; 

10 (3) commits to ensuring equitable access among 

11 economic, racial, and ethnic groups to new treat12 ments in order to improve health outcomes for those 

13 with sickle cell disease; 

14 (4) calls on the Department of Health and 

15 Human Services to create policy solutions aimed at 

16 eliminating barriers to equitable access for innova17 tive sickle cell disease therapies, including cell, gene, 

18 and gene-editing therapies, in the Medicaid and 

19 Medicare system for patients who need them most; 

20 (5) encourages the people of the United States 

21 to hold appropriate programs, events, and activities 


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1 during Sickle Cell Disease Awareness Month to raise 

2 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 (6) 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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1 (E) the Centers for Medicare & Medicaid 

2 Services; and 

3 (7) 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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