IV 

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; 


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•HRES 672 IH 

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 inVerDate Sep 11 2014 01:04 Sep 09, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\HR672.IH HR672

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•HRES 672 IH 

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 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 

1 Resolved, That the House of Representatives— 

2 (1) recognizes the importance of ensuring that 

3 people in the United States can make informed deci4 sions as a result of awareness of their sickle cell 

5 trait status; 

6 (2) recognizes the ongoing challenges in ad7 dressing health outcomes among people with sickle 

8 cell trait and sickle cell disease; 

9 (3) recognizes the importance of the develop10 ment of, and access to, new treatments for sickle cell 

11 disease; 

12 (4) encourages the medical community, in co13 ordination with State and Federal Government, to 

14 work to ensure that all individuals are made aware 

15 of their sickle cell trait status by developing a com16 mon strategy for dissemination of screening results, 


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•HRES 672 IH 

1 education, and counseling to parents and families in 

2 collaboration with all 50 States newborn screening 

3 programs; 

4 (5) calls on the Department of Health and 

5 Human Services, in collaboration with experts, to 

6 develop a surveillance and public awareness cam7 paign regarding the importance of knowing one’s 

8 sickle cell trait status and to gain knowledge on 

9 sickle cell disease for all racial and ethnic groups in 

10 the United States; 

11 (6) commits to build on the progress of Public 

12 Law 115–327, which reauthorized a sickle cell dis13 ease prevention and treatment demonstration pro14 gram and provided for sickle cell research, surveil15 lance, prevention, and treatment; 

16 (7) calls on the Department of Health and 

17 Human Services to expand access for screening and 

18 appropriate counseling for carriers of sickle cell 

19 trait; 

20 (8) calls on the Department of Health and 

21 Human Services to support comprehensive patient 

22 care in sickle cell centers, including coordination of 

23 care services between the Federal Government, State 

24 governments, medical institutions, community health 

25 workers, public and nonprofit entities, including 


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•HRES 672 IH 

1 community-based organizations, and community 

2 health workers; 

3 (9) commits to ensuring support for research 

4 that expands our understanding of the health out5 comes and other implications of sickle cell trait and 

6 the health outcomes associated with sickle cell dis7 ease; and 

8 (10) commits to ensuring equitable access 

9 among economic, racial, and ethnic groups to new 

10 treatments in order to improve health outcomes for 

11 those with sickle cell disease. 

Æ 


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