[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 738 Introduced in Senate (IS)]
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118th CONGRESS
2d Session
S. RES. 738
Expressing support for the designation of June 19, 2024, 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.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
June 18, 2024
Mr. Booker (for himself, Mr. Brown, Ms. Klobuchar, and Mr. Van Hollen)
submitted the following resolution; which was referred to the Committee
on Foreign Relations
_______________________________________________________________________
RESOLUTION
Expressing support for the designation of June 19, 2024, 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.
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 2024 theme of World Sickle Cell Awareness Day, ``Hope Through
Progress: Advancing Sickle Cell Care Globally'', is an immediate call to
bring voices together to improve the health and quality of life for
individuals living with SCD and their families;
Whereas, in 1972, Dr. Charles Whitten cofounded 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 can
result 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, although most individuals who have SCT live normal
lives, when both parents have SCT, there is a 25 percent chance that any
of their children will have SCD;
Whereas there are an estimated 1,000,000 to 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 certain countries in sub-Saharan
Africa, South and Central America, the Caribbean, South Asia, the Middle
East, and the Mediterranean basin;
Whereas the variance relating to the prevalence of SCT ranges greatly by region
and demography, with overall rates as high as 40 percent in parts of
sub-Saharan Africa and among newborns in parts of India;
Whereas, in many countries that are poor in resources, 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
parts of the western region 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, and in 2010, the World Health Assembly passed a resolution
relating to preventing and managing birth defects, including SCD;
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 2 therapies
approved by the Food and Drug Administration in December of 2023, 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 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, 2024, 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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