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

Summary:
This resolution 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.) The resolution also (1) encourages the medical community to make individuals aware of their sickle cell trait status, (2) 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, and (3) commits to ensuring equitable access to new treatments and supporting research on sickle cell trait and sickle cell disease.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 606 Introduced in House (IH)]

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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;
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 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) 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
            (9) 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.
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