[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1176 Introduced in House (IH)]
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117th CONGRESS
2d Session
H. RES. 1176
Expressing support for the designation of June 19, 2022, 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, 2022
Mr. Danny K. Davis of Illinois (for himself, Mr. Burgess, Ms. Lee of
California, Ms. Sewell, Mr. Butterfield, Mr. Owens, 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, 2022, 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 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 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, 2022, 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.
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