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 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 606 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 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 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 appropriate counseling on the implications, provided by an inVerDate Sep 11 2014 23:09 Sep 27, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\HR606.IH HR606

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•HRES 606 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 606 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) commits to ensuring support for research 

21 that expands our understanding of the health out22 comes and other implications of sickle cell trait and 

23 the health outcomes associated with sickle cell dis24 ease; and 


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•HRES 606 IH 

1 (9) commits to ensuring equitable access among 

2 economic, racial, and ethnic groups to new treat3 ments in order to improve health outcomes for those 

4 with sickle cell disease. 

Æ 


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