IV 
116TH CONGRESS 
1ST SESSION 
H. RES. 606 
Calling for sickle cell trait research, surveillance, and public education and 
awareness, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
SEPTEMBER 27, 2019 
Ms. LEE of California (for herself, Mr. BURGESS, Mr. DANNY K. DAVIS of 
Illinois, Mr. SERRANO, Ms. SEWELL of Alabama, Ms. JACKSON LEE, Ms. 
NORTON, Mr. BROWN of Maryland, Mr. COHEN, Ms. TLAIB, Mr. DAVID 
SCOTT of Georgia, and Ms. FUDGE) 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 approxi-
mately 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; 
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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-per-
cent chance of passing on the abnormal sickle cell gene 
to future offspring and 25-percent chance of having fu-
ture 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 pla-
centa; 
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 re-
authorized a sickle cell disease prevention and treatment 
demonstration program and provided for sickle cell re-
search, 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 five 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 appro-
priate counseling on the implications, provided by an in-
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dividual 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 com-
municated 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 trans-
mitted 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 deci-
sions as a result of awareness of their sickle cell 
trait status; 
(2) recognizes the ongoing challenges in ad-
dressing health outcomes among people with sickle 
cell trait and sickle cell disease; 
(3) recognizes the importance of the develop-
ment of, and access to, new treatments for sickle cell 
disease; 
(4) encourages the medical community, in co-
ordination with State and Federal government, to 
work to ensure that all individuals are made aware 
of their sickle cell trait status by developing a com-
mon strategy for dissemination of screening results, 
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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 cam-
paign 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 dis-
ease prevention and treatment demonstration pro-
gram and provided for sickle cell research, surveil-
lance, 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) commits to ensuring support for research 
that expands our understanding of the health out-
comes and other implications of sickle cell trait and 
the health outcomes associated with sickle cell dis-
ease; and 
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(9) commits to ensuring equitable access among 
economic, racial, and ethnic groups to new treat-
ments in order to improve health outcomes for those 
with sickle cell disease. 
Æ 
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