[Congressional Record Volume 169, Number 105 (Thursday, June 15, 2023)]
[Senate]
[Pages S2125-S2126]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 SENATE RESOLUTION 255--EXPRESSING SUPPORT FOR THE DESIGNATION OF JUNE 
 19, 2023, 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

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

                              S. Res. 255

       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 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 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 results 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, 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 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 sub-
     Saharan regions of Africa, South America, the Caribbean, 
     Central America, Saudi Arabia, India, Turkey, Greece, and 
     Italy;
       Whereas the variance relating to disease prevalence of SCT 
     ranges 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 \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 those regions 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;
       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 gene editing, that can modify a patient's own 
     hematopoietic stem cells to enable them to

[[Page S2126]]

     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, 2023, 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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