This resolution recognizes the challenges posed by sickle cell trait and sickle cell disease and encourages relevant screening, research, and surveillance. Sickle cell disease is a group of inherited disorders that cause abnormally shaped red blood cells.
[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 672 Introduced in House (IH)]
<DOC>
118th CONGRESS
1st Session
H. RES. 672
Calling for sickle cell trait research, surveillance, and public
education and awareness, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
September 8, 2023
Ms. Lee of California (for herself and Mr. Davis of Illinois) submitted
the following resolution; which was referred to the Committee on Energy
and Commerce
_______________________________________________________________________
RESOLUTION
Calling for sickle cell trait research, surveillance, and public
education and awareness, and for other purposes.
Whereas sickle cell disease is the most common inherited blood disorder in the
United States, affecting approximately 100,000 people in the United
States;
Whereas more than 3,000,000 people in the United States have the sickle cell
trait, and many are unaware of their status;
Whereas, in 2010, the total number of babies born with sickle cell trait was
estimated to have exceeded 60,000, and the total United States incidence
estimate was 15.5 cases per 1,000 births;
Whereas sickle cell disease occurs in about 1 out of every 365 Black or African-
American births and 1 out of every 16,300 Hispanic-American births;
Whereas individuals who have sickle cell trait have a 50-percent chance of
passing on the abnormal sickle cell gene to future offspring and a 25-
percent chance of having future children with sickle cell disease if
both parents have the trait;
Whereas sickle cell disease can be identified before birth by testing a sample
of amniotic fluid or tissue from the placenta;
Whereas individuals with sickle cell trait have the same life expectancy as the
general population, but are at risk for certain conditions, including
blood in the urine, kidney cancer, complications with trauma to the eye,
and tissue death in the spleen at high altitudes, or may have a false
positive A1C test;
Whereas, during the 115th Congress, Public Law 115-327 reauthorized a sickle
cell disease prevention and treatment demonstration program and provided
for sickle cell research, surveillance, prevention, and treatment;
Whereas following the enactment of Public Law 115-327, the National Institutes
of Health launched the Cure Sickle Cell Initiative aimed at bringing
genetic therapies into first-in-human clinical trials within 5 years and
moving newly developed genetic therapies, including gene-editing
approaches, into clinical research;
Whereas communication of a screening result consistent with sickle cell trait
should always be accompanied by appropriate counseling on the
implications, provided by an individual with adequate training and
understanding of the information;
Whereas the limited research on the communication of sickle cell trait test
results to patients demonstrates that there is a high prevalence of
misleading information being communicated during counseling sessions for
sickle cell trait following newborn screening by clinicians; and
Whereas no studies have examined whether information on sickle cell trait test
results is being accurately transmitted to an individual, whether by a
family member or health care provider, prior to a person's reproductive
years: Now, therefore, be it
Resolved, That the House of Representatives--
(1) recognizes the importance of ensuring that people in
the United States can make informed decisions as a result of
awareness of their sickle cell trait status;
(2) recognizes the ongoing challenges in addressing health
outcomes among people with sickle cell trait and sickle cell
disease;
(3) recognizes the importance of the development of, and
access to, new treatments for sickle cell disease;
(4) encourages the medical community, in coordination with
State and Federal Government, to work to ensure that all
individuals are made aware of their sickle cell trait status by
developing a common strategy for dissemination of screening
results, education, and counseling to parents and families in
collaboration with all 50 States newborn screening programs;
(5) calls on the Department of Health and Human Services,
in collaboration with experts, to develop a surveillance and
public awareness campaign regarding the importance of knowing
one's sickle cell trait status and to gain knowledge on sickle
cell disease for all racial and ethnic groups in the United
States;
(6) commits to build on the progress of Public Law 115-327,
which reauthorized a sickle cell disease prevention and
treatment demonstration program and provided for sickle cell
research, surveillance, prevention, and treatment;
(7) calls on the Department of Health and Human Services to
expand access for screening and appropriate counseling for
carriers of sickle cell trait;
(8) calls on the Department of Health and Human Services to
support comprehensive patient care in sickle cell centers,
including coordination of care services between the Federal
Government, State governments, medical institutions, community
health workers, public and nonprofit entities, including
community-based organizations, and community health workers;
(9) commits to ensuring support for research that expands
our understanding of the health outcomes and other implications
of sickle cell trait and the health outcomes associated with
sickle cell disease; and
(10) 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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
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