IV 116th CONGRESS 1st Session H. RES. 606 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

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.