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 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 by 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 more research is needed to find more treatments and cures to help individuals with SCD;

Whereas the Centers for Medicare & Medicaid Services has introduced an innovative cell and gene therapy access model for interested States and United States territories, where it will support administration and outcomes-based contracts with drug manufacturers for Medicaid beneficiaries to receive these life-saving breakthroughs; and

Whereas September 2025 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