42 U.S.C. § 300b–5 — Sickle cell disease and other heritable blood disorders research, surveillance, prevention, and treatment

(a) Grants: (1) In general — the Secretary may award grants related to heritable blood disorders, including sickle cell disease, for: (A) collecting and maintaining data on these diseases and their outcomes and complications, to (i) improve national data on how common they are, (ii) find health disparities, including geographic patterns, (iii) study how well prevention therapies and strategies are used, and (iv) evaluate genetic, environmental, behavioral, and other risk factors; and (B) public health activities, which may include (i) building strategies — including public-private partnerships — to improve outcomes and access to screening, treatment, and management; (ii) supporting community groups and state/local health departments with education and training for patients, communities, and providers; (iii) supporting state health departments and regional labs, including training, in testing for these diseases, including specific forms of sickle cell disease, in people of all ages; and (iv) identifying and evaluating best practices for treating these diseases and their complications. (2) Population included — the Secretary must, as much as practical, award these grants across the country to improve data on how common these disorders are and where they occur. (3) Application — an eligible entity applies to the Secretary following whatever process the Secretary requires. (4) Priority — the Secretary may prioritize applicants connected to a community organization experienced in serving people with these disorders. (5) Eligible entity — this includes the 50 states, D.C., Puerto Rico, the U.S. Virgin Islands, the Northern Mariana Islands, American Samoa, Guam, the Federated States of Micronesia, the Republic of the Marshall Islands, the Republic of Palau, Indian tribes, state or local health departments, colleges and universities, or qualified nonprofits. (b) Demonstration program for the development and establishment of systemic mechanisms for the prevention and treatment of sickle cell disease: (1) Authority to conduct demonstration program — (A) In general: the Administrator, through the Bureau of Primary Health Care and the Maternal and Child Health Bureau, must keep working — including by awarding grants — to build ways to improve sickle cell disease treatment and complication prevention in populations with many sickle cell patients, through (i) coordinating care delivery, (ii) genetic counseling and testing, (iii) bundling technical treatment services, (iv) training health professionals, and (v) other efforts to expand and coordinate education, treatment, and continuity of care. (B) Geographic diversity — the Administrator must, as much as practical, spread these grants across different U.S. regions. (2) Additional requirements — a grantee must also: (A) coordinate education, treatment, and continuity of care through (i) its agreement with a community sickle cell organization or nonprofit, (ii) the state's sickle cell newborn screening program, and (iii) the state's Title V maternal and child health program; (B) train nursing and other staff who care for sickle cell patients; (C) partner with regional adult and pediatric hematologists and other sickle cell experts at academic health centers and state/county health offices; (D) work to secure Medicaid, CHIP, and other insurance reimbursement for sickle cell treatment and complication care; and (E) help teenagers with sickle cell disease transition to adult health care. (3) National coordinating center — (A) Establishment: the Administrator must fund, or contract with, an entity to serve as the National Coordinating Center for this demonstration program. (B) Activities: that Center must (i) collect, coordinate, monitor, and share data, best practices, and findings from the grantees; (ii) develop a model treatment protocol; (iii) develop educational materials; and (iv) send Congress a final report recommending how effective the program was, including measures like (I) health care resource use (ER visits, hospital stays, physician visits), and (II) how many people were tested and then counseled for the sickle cell trait. (4) Application — an eligible entity applies to the Administrator following whatever process the Administrator requires. (5) Definitions — (A) "Administrator" means the Administrator of the Health Resources and Services Administration. (B) "Eligible entity" means a federally-qualified health center, nonprofit hospital or clinic, or university health center providing primary care, that (i) has an agreement with a community sickle cell organization or experienced nonprofit, and (ii) shows at least 5 years of experience working with sickle cell patients — either itself, through that partner organization, or through the experts described in paragraph (2)(C). (C) "Federally-qualified health center" has the meaning given in the Social Security Act. (6) Authorization of appropriations — Congress authorized $8,205,000 for each of fiscal years 2026 through 2030 to carry out this subsection.