H.Res. 1371

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1371 Introduced in House (IH)]

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119th CONGRESS
2d Session
H. RES. 1371

Expressing support for a ``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, 2026

Mr. Davis of Illinois (for himself and Mr. Dunn of Florida) submitted 
the following resolution; which was referred to the Committee on Energy 
and Commerce

_______________________________________________________________________

RESOLUTION

Expressing support for a ``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.

Whereas the 2026 theme of ``World Sickle Cell Awareness Day'', ``Closing the 
Survival Gap: Equity in Sickle Cell Disease'', is an immediate call to 
close the survival gap and push towards a universal cure;
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 for individuals living with SCD, 
including anemia, stroke, infections, organ failure, tissue damage, 
intense periods of pain referred to as vaso-occulsive crises, and even 
premature death;
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;
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 approximately 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 
African-American 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, Saudi Arabia, India, 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 
Africa;
Whereas approximately 1,000 children in Africa are born with SCD each day, 50 to 
80 percent of whom will die before their fifth birthday;
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 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, in 2023, hematopoietic stem cell transplantation (commonly known as 
``HSCT'' or bone marrow transplant) was the only cure for SCD, and the 
Food and Drug Administration has since approved 2 gene therapies that 
have been demonstrated to cure SCD;
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 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 the hematopoietic stem cells of a patient to enable them to 
generate healthy red blood cells to prevent sickle cell crises;
Whereas hematopoietic stem cell transplantation (commonly known as ``HSCT'' or 
bone marrow transplant) 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, 2026, 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
Resolved, That the House of Representatives--
(1) supports the goals and ideals of ``World Sickle Cell 
Awareness Day'';
(2) commits to ensuring equitable access to new sickle cell 
disease (referred to in this resolution as ``SCD'') treatments 
by shining the light among all economic, racial, and ethnic 
groups to improve health outcomes for individuals living with 
SCD;
(3) calls on the Department of Health and Human Services to 
create global policy solutions aimed at providing support for 
the global community with respect to SCD and, in partnership 
with local governments, the domestic resources needed to 
provide access to newborn screening programs, therapeutic 
interventions, and support services with respect to SCD;
(4) supports eliminating barriers to equitable access to 
innovative SCD therapies, including cell, gene, and gene-
editing therapies in the Medicare and Medicaid systems for the 
most vulnerable patients;
(5) encourages the people of the United States and the 
world to hold appropriate programs, events, and activities on 
``World Sickle Cell Awareness Day'' to raise public awareness 
of SCD traits, preventative-care programs, treatments, and 
other patient services for those suffering from SCD, 
complications from SCD, and conditions relating to SCD;
(6) encourages the President to form a Sickle Cell Disease 
Interagency Group, which should include the Department of 
Health and Human Services, the Department of Veterans Affairs, 
the National Institutes of Health, the Food and Drug 
Administration, and the Centers for Medicare & Medicaid 
Services, to work toward policies that will support equitable 
and appropriate access to innovative SCD therapies; and
(7) with respect to the policies described in paragraph 
(6), urges the interagency group described in that paragraph to 
consider options that not only address access to potential 
future curative treatments for SCD, but also address the bias 
that the population most affected by SCD continues to face 
within the United States and global healthcare systems.
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