III 

117TH CONGRESS 

2D SESSION S. RES. 683 

Supporting the goals and ideals of World Sickle Cell Awareness Day. 

IN THE SENATE OF THE UNITED STATES 

JUNE 16, 2022 

Mr. BOOKER (for himself, Mr. BROWN, and Mr. VAN HOLLEN) submitted the 

following resolution; which was referred to the Committee on Foreign Relations 

RESOLUTION 

Supporting the goals and ideals of World Sickle Cell 

Awareness Day. 

Whereas sickle cell disease (referred to in this preamble as 

‘‘SCD’’) is a genetically inherited condition present at 

birth that involves a group of red blood cell disorders and 

is a major health problem in the United States and 

worldwide; 

Whereas the 2022 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, which is now 

headquartered in Hanover, Maryland, to improve research, education, and healthcare for SCD patients; 


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•SRES 683 IS 

Whereas, in 1972, Congress passed the National Sickle Cell 

Anemia Control Act (Public Law 92–294; 86 Stat. 136), 

which provided authority to establish education, information, screening, testing, counseling, research, and treatment programs for SCD patients; 

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

result in chronic complications related to anemia, stroke, 

infections, organ failure, tissue damage, intense periods 

of pain referred to as vaso-occlusive crisis, and premature 

death; 

Whereas sickle cell trait (referred to in this preamble as 

‘‘SCT’’) occurs when an individual inherits one copy of 

the sickle cell gene from one parent, and when both parents have SCT, there is a 25 percent chance that any of 

their children will have SCD; 

Whereas there are an estimated 3,000,000 individuals with 

SCT in the United States, with many unaware of their 

status; 

Whereas an estimated 100,000 individuals have SCD in the 

United States, with 1 out of 365 African-American births 

and 1 out of 16,300 Hispanic-American births resulting 

in SCD, and nearly 1 out of 13 African-American babies 

are born with SCT; 

Whereas SCD affects millions of people throughout the world, 

especially individuals of genetic descent from sub-Saharan regions of Africa, South America, the Caribbean, 

Central America, Saudi Arabia, India, Turkey, Greece, 

and Italy; 


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Whereas the prevalence of SCT varies greatly by region, with 

rates as high as 40 percent in certain regions of sub-Saharan Africa, eastern Saudi Arabia, and central India; 

Whereas, in many 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 each day, more than half of whom will die before their fifth birthday; 

Whereas the high prevalence of SCD in the central and western regions of India results in approximately 20 percent 

of babies diagnosed with SCD dying before the age of 2; 

Whereas, in 2006, the World Health Assembly passed a resolution, adopted by the United Nations in 2009, recognizing SCD as a public health priority with a call to action that each country implement measures to tackle the 

disease; 

Whereas screening newborns for SCD is a crucial first step 

for families to obtain a timely diagnosis and comprehensive care and to decrease the mortality rate of children 

with SCD; 

Whereas approved treatments for SCD are limited, with the 

Food and Drug Administration approving only 4 SCD 

therapies since 2017, but there are more than 40 SCD 

therapies in development; 

Whereas there is an immediate need for lifesaving therapeutics that can improve the duration and quality of life 

of individuals with SCD; 

Whereas, in 2020, the National Academies of Sciences, Engineering, and Medicine developed a comprehensive strategic plan and blueprint for action to address SCD, which 


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•SRES 683 IS 

highlights the need to develop new innovative therapies 

and to address barriers to the equitable access of approved treatments; 

Whereas, in 2020, the Department of Health and Human 

Services, in partnership with the American Society of Hematology and the Sickle in Africa Consortium and in collaboration with the World Health Organization, hosted a 

webinar for a joint effort to strengthen efforts to combat 

SCD during the coronavirus disease (commonly known as 

‘‘COVID–19’’) pandemic and beyond; 

Whereas the late Kwaku Ohene-Frempong, M.D., Professor 

Emeritus of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania, an American Society of Hematology member who served on the Global Coalition on SCD, has been a leader in advancing 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 to enable them 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 advancements in treatment for complications associated with SCD have been made, more research is needed to find widely available and accessible 

treatments and cures to help individuals with SCD; and 

Whereas, although June 19, 2022, has been designated as 

‘‘World Sickle Cell Awareness Day’’ to increase public 

alertness across the United States and global community 


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•SRES 683 IS 

about SCD, there remains a continued need for empirical 

research, early detection screenings for SCD 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 SCD: 

Now, therefore, be it 

1 Resolved, That the Senate— 

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

4 (2) commits to ensuring equitable access to new 

5 sickle cell disease (referred to in this resolution as 

6 ‘‘SCD’’) treatments by shining the light among all 

7 economic, racial, and ethnic groups to improve 

8 health outcomes for those living with SCD; 

9 (3) calls on the Department of Health and 

10 Human Services to create global policy solutions 

11 aimed at providing support for the global community 

12 and the domestic resources needed to provide access 

13 to newborn screening programs, therapeutic inter14 ventions, and support services in partnership with 

15 local governments; 

16 (4) supports eliminating barriers to equitable 

17 access for innovative SCD therapies, including cell, 

18 gene, and gene-editing therapies in the Medicare and 

19 Medicaid systems for the most vulnerable patients; 

20 (5) encourages the people of the United States 

21 and the world to hold appropriate programs, events, 


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•SRES 683 IS 

1 and activities on Sickle Cell Awareness Day to raise 

2 public awareness of SCD traits, preventative care 

3 programs, treatments, and other patient services for 

4 those suffering from SCD, complications from SCD, 

5 and conditions related to SCD; and 

6 (6) urges that the options to be considered to 

7 combat SCD not only address access to potential fu8 ture curative treatments, but also address the bias 

9 that the population most affected by SCD continues 

10 to face within the United States and global 

11 healthcare systems. 

Æ 


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