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This section captures a floor statement or debate entry. It mentions legislation such as Expressing support for the designation of September 2026 as "Sickle Cell Disease Awareness Month" in order to educate communities across the United States about sickle cell disease and the need for research, early detection methods, effective treatments, and preventative care programs with respect to complications from sickle cell disease and conditions related to sickle cell disease..
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September 30, 2026
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Download official Senate Record PDFReturn to issue contextSEPTEMBER 2026 AS “SICKLE CELL DISEASE AWARENESS MONTH” IN ORDER TO EDUCATE COMMUNITIES ACROSS THE UNITED STATES ABOUT SICKLE CELL DISEASE
AND THE NEED FOR RESEARCH, EARLY DETECTION METHODS, EFFECTIVE
COMPLICATIONS FROM SICKLE CELL DISEASE AND CONDITIONS RELATED TO SICKLE
CELL DISEASE
Mr. SCOTT of South Carolina (for himself, Mr. Booker, Mr. Young, Ms. Smith, Mrs. Britt, Mr. Padilla, Mrs. Hyde-Smith, Ms. Warren, and Mr. Lankford) submitted the following resolution; which was considered and agreed to:
S. Res. 940
Whereas sickle cell disease (referred to in this preamble
as “SCD”) is an inherited blood disorder that is a major
health problem in the United States and worldwide;
Whereas SCD can result in multiple medical complications,
including anemia, jaundice, gallstones, strokes, restricted
blood flow, damaged tissue in the liver, spleen, and kidneys,
and death;
Whereas SCD causes acute and chronic episodes of severe
pain;
Whereas SCD affects an estimated 100,000 individuals in the
United States;
Whereas approximately 1,800 to 2,000 babies are born with
SCD each year in the United States, with the disease
occurring in approximately 1 in 365 newborn Black or African
American infants and 1 in 16,300 newborn Hispanic-American
infants, and can be found in individuals of Mediterranean,
Middle Eastern, Asian, and Indian origin;
Whereas more than 2,000,000 individuals in the United
States have the sickle cell trait and 1 in 13 Black or
African Americans carries the trait;
Whereas there is a 1 in 4 chance that a child born to
parents who both have the sickle cell trait will have the
disease;
Whereas the life expectancy of an individual with SCD in
the United States is often severely limited, with some
estimates showing a shortened life expectancy of more than 20
years;
Whereas sickle cell anemia is a common cause of childhood
stroke, and in 2019, fewer than half of children with sickle
cell anemia who were 2 to 16 years old received the
recommended screening for stroke;
Whereas, in 2019, only 2 in 5 children with sickle cell
anemia who were 2 to 9 years old used recommended medication
that can prevent sickle cell anemia complications;
Whereas, in 2020, the National Academies of Science,
Engineering, and Medicine developed a comprehensive strategic
plan and blueprint for action to address sickle cell disease,
which, among other things, cited the need for new innovative
therapies and promoting widespread patient access to approved
treatments;
Whereas, in 2023, hematopoietic stem cell transplantation
(commonly known as “HSCT”) 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, in 2023, the Food and Drug Administration approved
Casgevy and Lyfgenia, the first 2 cell-based gene therapies
to treat certain patients with SCD;
Whereas, on July 1, 2026, the Food and Drug Administration
expanded the approval of Casgevy to include certain patients
aged 2 years and older with SCD and recurrent vaso-occlusive
crises or transfusion-dependent b thalassemia;
Whereas more research is needed to find more treatments and
cures to help individuals with SCD;
Whereas the Centers for Medicare & Medicaid Services is
operating the cell and gene therapy access model to support
outcomes-based agreements between participating Medicaid
programs and manufacturers of gene therapies for SCD:
Whereas 32 States, the District of Columbia, and Puerto
Rico, representing approximately 84 percent of Medicaid
beneficiaries living with SCD, are participating in the cell
and gene therapy access model; and
Whereas September 2026 has been designated as “Sickle Cell
Disease Awareness Month” in order to educate communities
across the United States about SCD, including early detection
methods, effective treatments, and preventative care programs
with respect to complications from SCD and conditions related
to SCD: Now, therefore, be it
Resolved, That the Senate—
(1) supports the goals and ideals of Sickle Cell Disease
Awareness Month; and
(2) encourages the people of the United States to hold
appropriate programs, events, and activities during Sickle
Cell Disease Awareness Month to raise public awareness of the
sickle cell trait, preventative care programs, treatments,
and other patient services for those suffering from sickle
cell disease, complications from sickle cell disease, and
conditions related to sickle cell disease.