Sickle cell disease and other heritable blood disorders research, surveillance, prevention, and treatment

The Secretary may award grants related to heritable blood disorders, including sickle cell disease, for one or more of the following purposes: To collect and maintain data on such diseases and conditions, including subtypes as applicable, and their associated health outcomes and complications, including for the purpose of— To conduct public health activities with respect to such conditions, which may include— The Secretary shall, to the extent practicable, award grants under this subsection to eligible entities across the United States to improve data on the incidence and prevalence of heritable blood disorders, including sickle cell disease, and the geographic distribution of such diseases and conditions. To seek a grant under this subsection, an eligible entity shall submit an application to the Secretary at such time, in such manner, and containing such information as the Secretary may require. In awarding grants under this subsection, the Secretary may give priority, as appropriate, to eligible entities that have a relationship with a community-based organization that has experience in, or is capable of, providing services to individuals with heritable blood disorders, including sickle cell disease. In this subsection, the term “eligible entity” includes the 50 States, the District of Columbia, the Commonwealth of Puerto Rico, the United States Virgin Islands, the Commonwealth of the Northern Mariana Islands, American Samoa, Guam, the Federated States of Micronesia, the Republic of Marshall 11 So in original. Probably should be preceded by “the”. Islands, the Republic of Palau, Indian tribes, a State or local health department, an institution of higher education, or a nonprofit entity with appropriate experience to conduct the activities under this subsection. The Administrator, through the Bureau of Primary Health Care and the Maternal and Child Health Bureau, shall continue efforts, including by awarding grants, to develop or establish mechanisms to improve the treatment of sickle cell disease, and to improve the prevention and treatment of complications of sickle cell disease, in populations with a high proportion of individuals with sickle cell disease, including through— The Administrator shall, to the extent practicable, award grants under this section 22 So in original. Probably should be “this subsection”. to eligible entities located in different regions of the United States. An eligible entity awarded a grant under this subsection shall use funds made available under the grant to carry out, in addition to the activities described in paragraph (1)(A), the following activities: To facilitate and coordinate the delivery of education, treatment, and continuity of care for individuals with sickle cell disease under— The Administrator shall make a grant to, or enter into a contract or cooperative agreement with, an entity to serve as the National Coordinating Center for the demonstration program conducted under this subsection. The National Coordinating Center shall— prepare and submit to Congress a final report that includes recommendations regarding the effectiveness of the demonstration program conducted under this subsection and such direct outcome measures as— An eligible entity desiring a grant under this subsection shall submit an application to the Administrator at such time, in such manner, and containing such information as the Administrator may require. In this subsection: The term “Administrator” means the Administrator of the Health Resources and Services Administration. The term “eligible entity” means a Federally-qualified health center, a nonprofit hospital or clinic, or a university health center that provides primary health care, that— The term “Federally-qualified health center” has the meaning given that term in section 1905(l)(2)(B) of the Social Security Act (42 U.S.C. 1396d(l)(2)(B)). There is authorized to be appropriated to carry out this subsection, $8,205,000 for each of fiscal years 2026 through 2030.