Title: Calling for sickle-cell trait research, surveillance, and public education and awareness.
Policy area: Health

Summary:
Recognizes the challenges in addressing health outcomes among people with sickle-cell trait and sickle-cell disease. (Sickle-cell disease refers to blood disorders resulting from abnormal red blood cells.)
Encourages the medical community to make individuals aware of their sickle-cell trait status.
Urges the Department of Health and Human Services to develop a public awareness campaign regarding the importance of individuals knowing their sickle-cell trait status and to expand access for screening and counseling.
Commits to supporting research on sickle-cell trait and sickle-cell disease.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 539 Introduced in House (IH)]

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115th CONGRESS
  1st Session
H. RES. 539

   Calling for sickle-cell trait research, surveillance, and public 
                        education and awareness.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           September 26, 2017

 Ms. Lee (for herself, Mr. Burgess, Ms. Norton, Ms. Wilson of Florida, 
Mrs. Watson Coleman, Mr. Grijalva, Mr. Evans, Mr. Hastings, Ms. Jackson 
  Lee, Mr. Ellison, Mr. Meeks, and Mr. Payne) 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.

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 African Americans (1 in 12) and Hispanic Americans (1 in 100) are most 
        at risk for carrying the sickle-cell trait, and the trait has been found 
        in persons of Greek, Italian, East Indian, Saudi Arabian, Asian, Syrian, 
        Turkish, Cypriot, Sicilian, and Caucasian origin;
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 according to a 2007 study in the American Journal of Medical Genetics, 
        all States have been required to screen for sickle-cell disease/trait 
        since 2006; however, most States lack a protocol for disseminating 
        results of trait status, with parents being notified only 37 percent of 
        the time;
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;
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 healthcare provider, prior to a person's reproductive 
        years; and
Whereas Congress 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: Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) recognizes the ongoing challenges in addressing health 
        outcomes among people with sickle-cell trait and sickle-cell 
        disease;
            (2) encourages the medical community, in coordination with 
        the 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;
            (3) 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;
            (4) calls on the Department of Health and Human Services to 
        expand access for screening and appropriate counseling for 
        carriers of sickle-cell trait; and
            (5) 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.
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