[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1495 Introduced in House (IH)]
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118th CONGRESS
2d Session
H. RES. 1495
Expressing support for the designation of September 2024 as ``Sickle
Cell Disease Awareness Month'' in order to educate communities across
the United States about sickle cell disease and the need for research,
early detection methods, effective treatments, and preventative care
programs with respect to complications from sickle cell disease and
conditions related to sickle cell disease.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
September 24, 2024
Mr. Davis of Illinois (for himself, Mr. Burgess, Ms. Lee of California,
Ms. Sewell, Ms. Tlaib, Ms. Kelly of Illinois, Ms. Norton, Mr. Johnson
of Georgia, Ms. Barragan, Ms. Williams of Georgia, Mr. Cleaver, Ms.
Plaskett, Ms. Bush, Ms. Clarke of New York, Mr. Bishop of Georgia, Mr.
Kennedy, Mr. Carson, Mr. Soto, Mr. Amo, and Ms. Adams) submitted the
following resolution; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
RESOLUTION
Expressing support for the designation of September 2024 as ``Sickle
Cell Disease Awareness Month'' in order to educate communities across
the United States about sickle cell disease and the need for research,
early detection methods, effective treatments, and preventative care
programs with respect to complications from sickle cell disease and
conditions related to sickle cell disease.
Whereas sickle cell disease (referred to in this preamble as ``SCD'') is an
inherited blood disorder that is a major health problem in the United
States and worldwide;
Whereas SCD results from an individual having 2 copies of a sickle cell gene, 1
inherited from each biological parent;
Whereas SCD results in the production of abnormally shaped red blood cells;
Whereas SCD causes episodes of considerable pain in the arms, legs, chest, and
abdomen of an individual;
Whereas SCD affects an estimated 100,000 individuals in the United States;
Whereas, approximately 2,000 babies are born with SCD each year in the United
States, with the disease occurring in approximately 1 in 365 newborn
African-American infants and 1 in 16,300 newborn Hispanic-American
infants, and SCD can be found in individuals of Mediterranean, Middle
Eastern, Asian, and Indian origin;
Whereas more than 3,000,000 individuals in the United States have a single copy
of the sickle cell gene, referred to as sickle cell trait, and 1 in 13
African Americans carries the trait;
Whereas sickle cell trait is found in 100,000,000 people worldwide, and affects
people of African, Middle Eastern, South Asian, Hispanic, and southern
European Caucasian descent;
Whereas there is a 1 in 4 chance that a child born to parents who both have the
sickle cell trait will have the disease;
Whereas the life expectancy of an individual with SCD in the United States is
often severely limited to an average of 55 years for a woman and 49
years for a man;
Whereas, according to a 2022 publication, the average lifetime cost for
individuals most severely impacted by SCD ranges between $4,200,000 to
$6,200,000 per patient;
Whereas, in 2020, the National Academies of Sciences, Engineering, and Medicine
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 there are approved 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 crisis;
Whereas, while hematopoietic stem cell transplantation is currently the only
cure for SCD and advances in treating the associated complications of
SCD have occurred, more research is needed to find widely available
treatments to help individuals with SCD;
Whereas the Sickle Cell Disease Association of America has been the national
voice for SCD, working with more than 50 community-based organizations
and affiliates serving over 500,000 children, adults, and caregivers
impacted by SCD; and
Whereas September 2024 has been designated as ``Sickle Cell Disease Awareness
Month'' in order to educate communities across the United States about
SCD, including early detection methods, effective treatments, and
preventative care programs with respect to complications from SCD and
conditions related to SCD: Now, therefore, be it
Resolved, That the House of Representatives--
(1) recognizes the important work of the Sickle Cell
Disease Association of America in raising awareness of sickle
cell disease, supporting patients and families with the
disease, and working toward finding a cure for this devastating
disease;
(2) supports the goals and ideals of ``Sickle Cell Disease
Awareness Month'';
(3) commits to ensuring equitable access among economic,
racial, and ethnic groups to new treatments in order to improve
health outcomes for those with sickle cell disease;
(4) calls on the Department of Health and Human Services to
create policy solutions aimed at eliminating barriers to
equitable access for specialized treatment and innovative
sickle cell disease therapies, including cell, gene, and gene-
editing therapies, in the Medicaid and Medicare system for
patients who need them most;
(5) calls on the National Institutes of Health to increase
funding for research on treatments and cures for sickle cell
disease;
(6) encourages the people of the United States to hold
appropriate programs, events, and activities during ``Sickle
Cell Disease Awareness Month'' to raise public awareness of--
(A) sickle cell disease trait;
(B) preventative care programs, treatments, and
other patient services for those suffering from sickle
cell disease;
(C) complications from sickle cell disease; and
(D) conditions related to sickle cell disease;
(7) encourages the President of the United States to form a
Sickle Cell Disease Interagency Cabinet, which would be
convened by the White House, to begin working toward policies
that will support equitable and appropriate access to
innovative sickle cell disease therapies, by bringing together
departments and agencies across the Federal Government to
address sickle cell disease on multiple fronts, including--
(A) the Department of Health and Human Services;
(B) the Department of Veterans Affairs;
(C) the National Institutes of Health;
(D) the Food and Drug Administration; and
(E) the Centers for Medicare & Medicaid Services;
and
(8) urges that the options to be considered by the Sickle
Cell Disease Interagency Cabinet not only address access to
potential future curative treatments, but also address the bias
that those with sickle cell disease continue to face within the
United States health care system.
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