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.

[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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