[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 738 Introduced in Senate (IS)]

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118th CONGRESS
  2d Session
S. RES. 738

  Expressing support for the designation of June 19, 2024, 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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             June 18, 2024

Mr. Booker (for himself, Mr. Brown, Ms. Klobuchar, and Mr. Van Hollen) 
submitted the following resolution; which was referred to the Committee 
                          on Foreign Relations

_______________________________________________________________________

                               RESOLUTION


 
  Expressing support for the designation of June 19, 2024, 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.

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 2024 theme of World Sickle Cell Awareness Day, ``Hope Through 
        Progress: Advancing Sickle Cell Care Globally'', is an immediate call to 
        bring voices together to improve the health and quality of life for 
        individuals living with SCD and their families;
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, including anemia, stroke, infections, 
        organ failure, tissue damage, intense periods of pain referred to as 
        vaso-occulsive crises, and even premature death in individuals living 
        with SCD;
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 an estimated 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, the Caribbean, South Asia, the Middle 
        East, 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 
        sub-Saharan Africa and among newborns in parts of India;
Whereas, in many countries that are poor in resources, 90 percent of children 
        with SCD do not live to see adulthood;
Whereas approximately 1,000 children in Africa are born with SCD each day, more 
        than \1/2\ of whom will die before their fifth birthday;
Whereas the high prevalence of SCD in the central and western regions of India 
        results in approximately 20 percent of babies diagnosed with SCD in 
        parts of the western region dying before the age of 2;
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 approved treatments for SCD are limited, with the Food and Drug 
        Administration approving only 4 SCD therapies since 2017, but, as of the 
        date of adoption of this resolution, there are more than 40 SCD 
        therapies in development;
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 a patient's own hematopoietic stem cells to enable them to 
        generate healthy red blood cells to prevent sickle cell crises;
Whereas hematopoietic stem cell transplantation (commonly known as ``HSCT'') 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, 2024, 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 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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