Title: A resolution supporting the goals and ideals of World Sickle Cell Awareness Day.
Policy area: International Affairs

Summary:
This resolution supports the goals and ideals of World Sickle Cell Awareness Day.
The resolution also commits to ensuring equitable access to new sickle cell disease (SCD) treatments by shining the light among all economic, racial, and ethnic groups to improve health outcomes for those living with SCD.
Finally, the resolution encourages the people of the United States and the world to hold appropriate programs, events, and activities on 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 related to SCD.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 683 Introduced in Senate (IS)]

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117th CONGRESS
  2d Session
S. RES. 683

  Supporting the goals and ideals of World Sickle Cell Awareness Day.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             June 16, 2022

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

_______________________________________________________________________

                               RESOLUTION


 
  Supporting the goals and ideals of World Sickle Cell Awareness Day.

Whereas sickle cell disease (referred to in this preamble as ``SCD'') is a 
        genetically inherited condition present at birth that involves a group 
        of red blood cell disorders and is a major health problem in the United 
        States and worldwide;
Whereas the 2022 theme of World Sickle Cell Awareness Day, ``Shine the Light on 
        Sickle Cell'', is an immediate call to action to improve the health and 
        quality of life for individuals living with SCD and their families;
Whereas, in 1972, Dr. Charles Whitten established the Sickle Cell Disease 
        Association of America, which is now headquartered in Hanover, Maryland, 
        to improve research, education, and healthcare for SCD patients;
Whereas, in 1972, Congress passed the National Sickle Cell Anemia Control Act 
        (Public Law 92-294; 86 Stat. 136), which provided authority to establish 
        education, information, screening, testing, counseling, research, and 
        treatment programs for SCD patients;
Whereas SCD is a genetic mutation that causes a single misspelling in the DNA 
        instructions for hemoglobin, a protein that aids in carrying oxygen in 
        the blood, which may result in chronic complications related to anemia, 
        stroke, infections, organ failure, tissue damage, intense periods of 
        pain referred to as vaso-occlusive crisis, and premature death;
Whereas sickle cell trait (referred to in this preamble as ``SCT'') occurs when 
        an individual inherits one copy of the sickle cell gene from one parent, 
        and when both parents have SCT, there is a 25 percent chance that any of 
        their children will have SCD;
Whereas there are an estimated 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 365 African-American births and 1 out of 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 people throughout the world, especially 
        individuals of genetic descent from sub-Saharan regions of Africa, South 
        America, the Caribbean, Central America, Saudi Arabia, India, Turkey, 
        Greece, and Italy;
Whereas the prevalence of SCT varies greatly by region, with rates as high as 40 
        percent in certain regions of sub-Saharan Africa, eastern Saudi Arabia, 
        and central India;
Whereas, in many countries that are poor in resources, more than 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 half 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 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 that each country implement measures to tackle the 
        disease;
Whereas screening newborns for SCD is a crucial first step for families to 
        obtain a timely diagnosis and comprehensive care and to decrease the 
        mortality rate of children with SCD;
Whereas approved treatments for SCD are limited, with the Food and Drug 
        Administration approving only 4 SCD therapies since 2017, but 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 of 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 Sickle in Africa 
        Consortium and in collaboration with the World Health Organization, 
        hosted a webinar for a joint effort to strengthen efforts to combat SCD 
        during the coronavirus disease (commonly known as ``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 served on the Global Coalition 
        on SCD, has been 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 gene editing, 
        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 while 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, 2022, has been designated as ``World Sickle Cell 
        Awareness Day'' to increase public alertness across the United States 
        and global community about SCD, there remains a continued need for 
        empirical research, early detection screenings for SCD trait carriers, 
        novel effective treatments leading to a cure, and preventative care 
        programs with respect to complications from sickle cell anemia and 
        conditions related 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 those 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 and the domestic resources needed to 
        provide access to newborn screening programs, therapeutic 
        interventions, and support services in partnership with local 
        governments;
            (4) supports eliminating barriers to equitable access for 
        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 
        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 related to SCD; and
            (6) urges that the options to be considered to combat SCD 
        not only address access to potential future curative 
        treatments, 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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