IV 

118TH CONGRESS 

1ST SESSION H. RES. 514 

Expressing support for the designation of June 19, 2023, as ‘‘World Sickle 

Cell Awareness Day’’ in order to increase public alertness across the 

United States and global community about sickle cell disease, the continued need for empirical research, early detection screenings for sickle 

cell trait carriers, novel effective treatments leading to a cure, and 

preventative care programs with respect to complications from sickle 

cell anemia and conditions related to sickle cell disease. 

IN THE HOUSE OF REPRESENTATIVES 

JUNE 15, 2023 

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

Mr. BILIRAKIS) submitted the following resolution; which was referred to 

the Committee on Energy and Commerce 

RESOLUTION 

Expressing support for the designation of June 19, 2023, 

as ‘‘World Sickle Cell Awareness Day’’ in order to increase public alertness across the United States and global community about sickle cell disease, the continued 

need for empirical research, early detection screenings 

for sickle cell trait carriers, novel effective treatments 

leading to a cure, and preventative care programs with 

respect to complications from sickle cell anemia and conditions related to sickle cell disease. 

Whereas sickle cell disease (referred to in this preamble as 

‘‘SCD’’) is defined as a group of inherited red blood cell 


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•HRES 514 IH 

disorders that is a genetic condition present at birth and 

is a major health problem in the United States and 

worldwide; 

Whereas the 2023 theme of World Sickle Cell Awareness 

Day, ‘‘Shine the Light on Sickle Cell’’ is an immediate 

call to action to improve the health and quality of life for 

individuals living with SCD and their families; 

Whereas, in 1972, Dr. Charles Whitten established the Sickle 

Cell Disease Association of America to improve research, 

education, and health care for sickle cell patients, which 

is now headquartered in Hanover, Maryland; 

Whereas, in 1972, Congress passed the National Sickle Cell 

Disease Control Act which, for the first time, provided 

authority to establish education, information, screening, 

testing, counseling, research, and treatment programs for 

sickle cell disease; 

Whereas SCD is a gene mutation that causes a single misspelling in the DNA instructions for hemoglobin, a protein that aids in carrying oxygen in the blood, results in 

chronic complications related to anemia, stroke, infections, organ failure, tissue damage, intense periods of 

pain referred to as vaso-occulsive crises, and even premature death in persons living with the disease; 

Whereas sickle cell trait (SCT) occurs when a person inherits 

one copy of the sickle cell gene from one of his or her 

parents, and in the United States an estimated 

3,000,000 individuals have SCT with many unaware of 

their status; if both parents have SCT, there is a 25-percent (or 1 in 4) chance that any child of theirs will have 

SCD; 


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•HRES 514 IH 

Whereas the prevalence of SCD in the United States affects 

approximately 100,000 individuals, 1 in every 365 African-American births, and 1 in every 16,300 HispanicAmerican births, with roughly 1 in 13 African-American 

babies born with sickle cell trait; 

Whereas the global imprint of SCD affects millions of people 

throughout the world; particularly among those persons 

whose ancestors came from sub-Saharan Africa; Spanishspeaking regions in the Western Hemisphere (South 

America, the Caribbean, and Central America); Saudi 

Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy; 

Whereas the variance related to disease prevalence of sickle 

cell trait ranges greatly by region, and there are levels recorded as high as 40 percent in certain areas of sub-Saharan Africa, eastern Saudi Arabia, and central India; 

Whereas in countries that are poor in resources, more than 

90 percent of children with SCD do not live to see adulthood; 

Whereas approximately 1,000 children in Africa are born 

with SCD daily with more than half who will die before 

their fifth birthday; 

Whereas there is a high prevalence of SCD in India, most notably within the central and western regions that results 

in nearly 20 percent of babies diagnosed with SCD dying 

by the age of two; 

Whereas, 16 years ago, in 2006, the World Health Assembly 

passed a resolution recognizing SCD as a public health 

priority with a call to action that each country implement 

measures to tackle the disease, and three years later, the 

United Nations adopted this same resolution in 2009; 


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•HRES 514 IH 

Whereas newborn screening for SCD is a crucial first step for 

families to obtain a timely diagnosis and the establishment of comprehensive care, which in turn helps to decrease mortality and morbidity for higher survival rates 

in children; 

Whereas approved treatments for SCD remain few in number 

with only four Food and Drug Administration-approved 

therapies since 2017, and there is a robust SCD pipeline 

with over 40 therapies in development; 

Whereas considering the impact of this molecular disease that 

results in the suffering of patients as well as their families living with SCD, there is an immediate need for lifesaving therapeutics that can improve the duration and 

quality of patients lives; 

Whereas, in 2020, the National Academies of Science, Engineering, and Medicine (NASEM) 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, in 2020, the Department of Health and Human 

Services, in partnership with the American Society of Hematology and SickleInAfrica, in collaboration with the 

World Health Organization, hosted a webinar for a joint 

effort to strengthen SCD efforts during the coronavirus 

disease (COVID–19) pandemic and beyond; 

Whereas American Society of Hematology member and recently deceased Kwaku Ohene-Frempong, M.D., Professor Emeritus of Pediatrics at the Perelman School of 

Medicine at the University of Pennsylvania, who served 

on the Global Coalition on SCD, has been a leader in adVerDate Sep 11 2014 21:57 Jul 12, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6300 E:\BILLS\HR514.IH HR514

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vancing the body of knowledge in SCD research, public 

health, and medicine, and is recognized as immeasurably 

benefitting thousands of children worldwide; 

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 crises; 

Whereas while hematopoietic stem cell transplantation (commonly known as ‘‘HSCT’’) is currently the only cure for 

SCD, and while 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 June 19, 2023, has been designated ‘‘World Sickle 

Cell Awareness Day’’ to increase public alertness across 

the United States and global community about sickle cell 

disease, the continued need for empirical research, early 

detection screenings for sickle cell disease trait carriers, 

novel effective treatments leading to a cure, and preventative-care programs with respect to complications from 

sickle cell anemia and conditions related to sickle cell disease: Now, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the goals and ideals of World Sick3 le Cell Awareness Day; 

4 (2) commits to ensuring equitable access by 

5 shining the light among economic, racial, and ethnic 

6 groups to new treatments in order to improve health 

7 outcomes for those living with sickle cell disease; 


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1 (3) calls on the Department of Health and 

2 Human Services to create global policy solutions 

3 aimed at providing support for the global community 

4 and at-home resources needed to provide access to 

5 newborn screening programs, therapeutic interven6 tions, and support services in partnership with local 

7 governments with the needed infrastructure for re8 search and treatment; 

9 (4) supports eliminating barriers to equitable 

10 access for innovative sickle cell disease therapies, in11 cluding cell, gene, and gene-editing therapies in the 

12 Medicare and Medicaid systems for patients who 

13 need them most; 

14 (5) encourages the people of the United States 

15 and globally to hold appropriate programs, events, 

16 and activities on Sickle Cell Awareness Day to raise 

17 public awareness of their sickle cell disease trait, 

18 preventative-care programs, treatments, and other 

19 patient services for those suffering from sickle cell 

20 disease, complications from sickle cell disease, and 

21 conditions related to sickle cell disease; and 

22 (6) encourages the President of the United 

23 States to form a Sickle Cell Disease Interagency 

24 Cabinet, which would be convened by the White 

25 House, bringing together departments and Federal 


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1 agencies across Government to address sickle cell 

2 disease on multiple fronts, which would include, but 

3 are not limited to, the Department of Health and 

4 Human Services, Department of Veterans Affairs, 

5 National Institutes of Health, Food and Drug Ad6 ministration, and Centers for Medicare & Medicaid 

7 Services to begin working toward policies that will 

8 support equitable and appropriate access to innova9 tive SCD therapies, and in this regard, the House 

10 of Representatives urges that the options to be con11 sidered not only address access to potential future 

12 curative treatments, but also address the bias that 

13 this population continues to face within both the 

14 United States and global health care systems. 

Æ 


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