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That the House of Representatives— 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; recognizes the ongoing challenges in addressing health outcomes among people with sickle cell trait and sickle cell disease; recognizes the importance of the development of, and access to, new treatments for sickle cell disease; 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; 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; 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; calls on the Department of Health and Human Services to expand access for screening and appropriate counseling for carriers of sickle cell trait; 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 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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