Govwatch

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1577 Introduced in House (IH)]

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119th CONGRESS
  2d Session
H. RES. 1577

 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.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                           September 24, 2026

  Mr. Davis of Illinois submitted the following resolution; which was 
      referred to the Committee on Oversight and Government Reform

_______________________________________________________________________

                               RESOLUTION

 
 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.

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 House of Representatives--
            (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.
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