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This section captures a floor statement or debate entry. It mentions legislation such as Expressing support for the designation of June 19, 2026, 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., committees such as Committee on Foreign Relations.
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June 18, 2026
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Download official Senate Record PDFReturn to issue context19, 2026, 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,
CURE, AND PREVENTATIVE CARE PROGRAMS WITH RESPECT TO COMPLICATIONS FROM
SICKLE CELL ANEMIA AND CONDITIONS RELATING TO SICKLE CELL DISEASE
Mr. BOOKER (for himself and Mr. Van Hollen) submitted the following resolution; which was referred to the Committee on Foreign Relations:
S. Res. 780
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 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 and 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; 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 Senate—
(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 Institute 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
biases that the populations most affected by SCD continue to
face within the United States and global healthcare systems.