[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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