IV 

118TH CONGRESS 

2D SESSION H. RES. 1304 

Expressing support for the designation of June 19, 2024, as ‘‘World Sickle 

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

United States and global community about sickle cell disease and the 

continued need for empirical research, early detection screenings, novel 

effective treatments leading to a cure, and preventative care programs 

with respect to complications from sickle cell anemia and conditions 

relating to sickle cell disease. 

IN THE HOUSE OF REPRESENTATIVES 

JUNE 18, 2024 

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

CARTER of Georgia, Mr. BLUMENAUER, Mr. THANEDAR, Ms. WILD, Mr. 

JACKSON of Illinois, Mr. JOHNSON of Georgia, Ms. CROCKETT, Ms. 

ADAMS, Mrs. RAMIREZ, Mr. DAVIS of North Carolina, Mr. CARSON, Ms. 

JACKSON LEE, Mr. GRIJALVA, Ms. NORTON, and Mr. GARAMENDI) submitted the following resolution; which was referred to the Committee on 

Energy and Commerce 

RESOLUTION 

Expressing support for the designation of June 19, 2024, 

as ‘‘World Sickle Cell Awareness Day’’ in order to increase public awareness across the United States and 

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

screenings, novel effective treatments leading to a cure, 

and preventative care programs with respect to complications from sickle cell anemia and conditions relating to 

sickle cell disease. 


kjohnson on DSK7ZCZBW3PROD with $$_JOB
2 

•HRES 1304 IH 

Whereas sickle cell disease (referred to in this preamble as 

‘‘SCD’’) is a group of inherited red blood cell disorders, 

a genetic condition present at birth, and a major health 

problem in the United States and worldwide; 

Whereas the 2024 theme of World Sickle Cell Awareness 

Day, ‘‘Hope Through Progress: Advancing Sickle Cell 

Care Globally’’, is an immediate call to bring voices together to improve the health and quality of life for individuals living with SCD and their families; 

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

Cell Disease Association of America to improve research, 

education, and health care for SCD patients and which 

is now headquartered in Hanover, Maryland; 

Whereas, in 1972, Congress passed the National Sickle Cell 

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

which, for the first time, provided authority to establish 

education, information, screening, testing, counseling, research, and treatment programs for SCD; 

Whereas sickle cell trait (referred to in this preamble as 

‘‘SCT’’) 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, and can 

result in chronic complications, including anemia, stroke, 

infections, organ failure, tissue damage, intense periods 

of pain referred to as vaso-occulsive crises, and even premature death in individuals living with SCD; 

Whereas SCT occurs when an individual inherits 1 copy of 

the sickle cell gene from 1 parent, and, although most individuals who have SCT live normal lives, when both parents have SCT, there is a 25-percent chance that any of 

their children will have SCD; 


kjohnson on DSK7ZCZBW3PROD with $$_JOB
3 

•HRES 1304 IH 

Whereas there are an estimated 1,000,000 to 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 every 365 African-American 

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

births resulting in SCD, and nearly 1 out of 13 AfricanAmerican babies are born with SCT; 

Whereas SCD affects millions of individuals throughout the 

world, especially individuals of genetic descent from certain countries in sub-Saharan Africa, South and Central 

America, the Caribbean, South Asia, the Middle East, 

and the Mediterranean basin; 

Whereas the variance relating to the prevalence of SCT 

ranges greatly by region and demography, with overall 

rates as high as 40 percent in parts of sub-Saharan Africa and among newborns in parts of India; 

Whereas, in many countries that are poor in resources, 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 one 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 in parts of the western region 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 for each country to implement measures to tackle 


kjohnson on DSK7ZCZBW3PROD with $$_JOB
4 

•HRES 1304 IH 

the disease, and in 2010, the World Health Assembly 

passed a resolution relating to preventing and managing 

birth defects, including SCD; 

Whereas screening newborns for SCD is a crucial first step 

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

children with respect to SCD; 

Whereas approved treatments for SCD are limited, with the 

Food and Drug Administration approving only 4 SCD 

therapies since 2017, but, as of the date of adoption of 

this resolution, 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 

for 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 

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 SickleInAfrica Consortium, and in collaboration with the World Health Organization, hosted a 

webinar for a joint effort to strengthen efforts to combat 

SCD during the 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 founded and served as a 


kjohnson on DSK7ZCZBW3PROD with $$_JOB
5 

•HRES 1304 IH 

member of the Global Sickle Cell Disease Network, was 

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 2 therapies approved by the Food and Drug Administration in December of 2023, 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 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, 2024, has been designated as 

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

awareness across the United States and global community about SCD, there remains a continued need for empirical research, early detection screenings, novel effective 

treatments leading to a cure, and preventative care programs with respect to complications from sickle cell anemia and conditions relating to SCD: 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 to new 

5 sickle cell disease (referred to in this resolution as 


kjohnson on DSK7ZCZBW3PROD with $$_JOB
6 

•HRES 1304 IH 

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

2 economic, racial, and ethnic groups to improve 

3 health outcomes for individuals living with SCD; 

4 (3) calls on the Department of Health and 

5 Human Services to create global policy solutions 

6 aimed at providing support for the global community 

7 with respect to SCD and, in partnership with local 

8 governments, the domestic resources needed to pro9 vide access to newborn screening programs, thera10 peutic interventions, and support services with re11 spect to SCD; 

12 (4) supports eliminating barriers to equitable 

13 access to innovative SCD therapies, including cell, 

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

15 Medicaid systems for the most vulnerable patients; 

16 (5) encourages the people of the United States 

17 and the world to hold appropriate programs, events, 

18 and activities on World Sickle Cell Awareness Day 

19 to raise public awareness of SCD traits, preventa20 tive-care programs, treatments, and other patient 

21 services for those suffering from SCD, complications 

22 from SCD, and conditions relating to SCD; 

23 (6) encourages the President to form a Sickle 

24 Cell Disease Interagency Group, which should in25 clude the Department of Health and Human ServVerDate Sep 11 2014 04:33 Jun 19, 2024 Jkt 049200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\HR1304.IH HR1304

kjohnson on DSK7ZCZBW3PROD with $$_JOB
7 

•HRES 1304 IH 

1 ices, the Department of Veterans Affairs, the Na2 tional Institutes of Health, the Food and Drug Ad3 ministration, and the Centers for Medicare & Med4 icaid Services, to work toward policies that will sup5 port equitable and appropriate access to innovative 

6 SCD therapies; and 

7 (7) with respect to the policies described in 

8 paragraph (6), urges the interagency group de9 scribed in that paragraph to consider options that 

10 not only address access to potential future curative 

11 treatments for SCD, but also address the bias that 

12 the population most affected by SCD continues to 

13 face within the United States and global health care 

14 systems. 

Æ 


kjohnson on DSK7ZCZBW3PROD with $$_JOB