[Congressional Record Volume 168, Number 103 (Thursday, June 16, 2022)]
[Senate]
[Page S3007]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 683--SUPPORTING THE GOALS AND IDEALS OF WORLD SICKLE 
                           CELL AWARENESS DAY

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

                              S. Res. 683

       Whereas sickle cell disease (referred to in this preamble a 
     ``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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