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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 514 Introduced in House (IH)]

<DOC>

118th CONGRESS
  1st Session
H. RES. 514

  Expressing support for the designation of June 19, 2023, as ``World 
   Sickle Cell Awareness Day'' in order to increase public alertness 
    across the United States and global community about sickle cell 
  disease, the continued need for empirical research, early detection 
 screenings for sickle cell 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 sickle 
                             cell disease.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                             June 15, 2023

Mr. Davis of Illinois (for himself, Mr. Burgess, Ms. Lee of California, 
   and Mr. Bilirakis) submitted the following resolution; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION

 
  Expressing support for the designation of June 19, 2023, as ``World 
   Sickle Cell Awareness Day'' in order to increase public alertness 
    across the United States and global community about sickle cell 
  disease, the continued need for empirical research, early detection 
 screenings for sickle cell 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 sickle 
                             cell disease.

Whereas sickle cell disease (referred to in this preamble as ``SCD'') is defined 
        as a group of inherited red blood cell disorders that is a genetic 
        condition present at birth and is a major health problem in the United 
        States and worldwide;
Whereas the 2023 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 to improve research, education, and health care 
        for sickle cell patients, which is now headquartered in Hanover, 
        Maryland;
Whereas, in 1972, Congress passed the National Sickle Cell Disease Control Act 
        which, for the first time, provided authority to establish education, 
        information, screening, testing, counseling, research, and treatment 
        programs for sickle cell disease;
Whereas SCD 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, results in chronic complications related to anemia, stroke, 
        infections, organ failure, tissue damage, intense periods of pain 
        referred to as vaso-occulsive crises, and even premature death in 
        persons living with the disease;
Whereas sickle cell trait (SCT) occurs when a person inherits one copy of the 
        sickle cell gene from one of his or her parents, and in the United 
        States an estimated 3,000,000 individuals have SCT with many unaware of 
        their status; if both parents have SCT, there is a 25-percent (or 1 in 
        4) chance that any child of theirs will have SCD;
Whereas the prevalence of SCD in the United States affects approximately 100,000 
        individuals, 1 in every 365 African-American births, and 1 in every 
        16,300 Hispanic-American births, with roughly 1 in 13 African-American 
        babies born with sickle cell trait;
Whereas the global imprint of SCD affects millions of people throughout the 
        world; particularly among those persons whose ancestors came from sub-
        Saharan Africa; Spanish-speaking regions in the Western Hemisphere 
        (South America, the Caribbean, and Central America); Saudi Arabia; 
        India; and Mediterranean countries such as Turkey, Greece, and Italy;
Whereas the variance related to disease prevalence of sickle cell trait ranges 
        greatly by region, and there are levels recorded as high as 40 percent 
        in certain areas of sub-Saharan Africa, eastern Saudi Arabia, and 
        central India;
Whereas in 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 daily with more 
        than half who will die before their fifth birthday;
Whereas there is a high prevalence of SCD in India, most notably within the 
        central and western regions that results in nearly 20 percent of babies 
        diagnosed with SCD dying by the age of two;
Whereas, 16 years ago, in 2006, the World Health Assembly passed a resolution 
        recognizing SCD as a public health priority with a call to action that 
        each country implement measures to tackle the disease, and three years 
        later, the United Nations adopted this same resolution in 2009;
Whereas newborn screening for SCD is a crucial first step for families to obtain 
        a timely diagnosis and the establishment of comprehensive care, which in 
        turn helps to decrease mortality and morbidity for higher survival rates 
        in children;
Whereas approved treatments for SCD remain few in number with only four Food and 
        Drug Administration-approved therapies since 2017, and there is a robust 
        SCD pipeline with over 40 therapies in development;
Whereas considering the impact of this molecular disease that results in the 
        suffering of patients as well as their families living with SCD, there 
        is an immediate need for life-saving therapeutics that can improve the 
        duration and quality of patients lives;
Whereas, in 2020, the National Academies of Science, Engineering, and Medicine 
        (NASEM) developed a comprehensive Strategic Plan and Blueprint for 
        Action to Address Sickle Cell Disease, which cited the need for new 
        innovative therapies as well as to address barriers that may impact 
        delivery and access to approved treatments;
Whereas, in 2020, the Department of Health and Human Services, in partnership 
        with the American Society of Hematology and SickleInAfrica, in 
        collaboration with the World Health Organization, hosted a webinar for a 
        joint effort to strengthen SCD efforts during the coronavirus disease 
        (COVID-19) pandemic and beyond;
Whereas American Society of Hematology member and recently deceased Kwaku Ohene-
        Frempong, M.D., Professor Emeritus of Pediatrics at the Perelman School 
        of Medicine at the University of Pennsylvania, 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 with the goal 
        of the patient being able 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 advances in 
        treating the associated complications of SCD have occurred, more 
        research is needed to find widely available treatments and cures to help 
        individuals with SCD; and
Whereas June 19, 2023, has been designated ``World Sickle Cell Awareness Day'' 
        to increase public alertness across the United States and global 
        community about sickle cell disease, the continued need for empirical 
        research, early detection screenings for sickle cell disease 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 sickle cell disease: 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 by shining the 
        light among economic, racial, and ethnic groups to new 
        treatments in order to improve health outcomes for those living 
        with sickle cell disease;
            (3) calls on the Department of Health and Human Services to 
        create global policy solutions aimed at providing support for 
        the global community and at-home resources needed to provide 
        access to newborn screening programs, therapeutic 
        interventions, and support services in partnership with local 
        governments with the needed infrastructure for research and 
        treatment;
            (4) supports eliminating barriers to equitable access for 
        innovative sickle cell disease therapies, including cell, gene, 
        and gene-editing therapies in the Medicare and Medicaid systems 
        for patients who need them most;
            (5) encourages the people of the United States and globally 
        to hold appropriate programs, events, and activities on Sickle 
        Cell Awareness Day to raise public awareness of their sickle 
        cell disease 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; and
            (6) encourages the President of the United States to form a 
        Sickle Cell Disease Interagency Cabinet, which would be 
        convened by the White House, bringing together departments and 
        Federal agencies across Government to address sickle cell 
        disease on multiple fronts, which would include, but are not 
        limited to, the Department of Health and Human Services, 
        Department of Veterans Affairs, National Institutes of Health, 
        Food and Drug Administration, and Centers for Medicare & 
        Medicaid Services to begin working toward policies that will 
        support equitable and appropriate access to innovative SCD 
        therapies, and in this regard, the House of Representatives 
        urges that the options to be considered not only address access 
        to potential future curative treatments, but also address the 
        bias that this population continues to face within both the 
        United States and global health care systems.
                                 <all>
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