§ 300b–5 — Sickle Cell Disease And Other Heritable Blood Disorders Research, Surveillance, Prevention, And Treatment

(1) The Secretary may award grants related to heritable blood disorders, including sickle cell disease, for one or more of the following purposes: (A) 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— (i) improving national incidence and prevalence data; (ii) identifying health disparities, including the geographic distribution, related to such diseases and conditions; (iii) assessing the utilization of therapies and strategies to prevent complications; and (iv) evaluating the effects of genetic, environmental, behavioral, and other risk factors that may affect such individuals. (B) To conduct public health activities with respect to such conditions, which may include— (i) developing strategies to improve health outcomes and access to quality health care for the screening for, and treatment and management of, such diseases and conditions, including through public-private partnerships; (ii) providing support to community-based organizations and State and local health departments in conducting education and training activities for patients, communities, and health care providers concerning such diseases and conditions; (iii) supporting State health departments and regional laboratories, including through training, in testing to identify such diseases and conditions, including specific forms of sickle cell disease, in individuals of all ages; and (iv) the identification and evaluation of best practices for treatment of such diseases and conditions, and prevention and management of their related complications. (2) 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. (3) 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. (4) 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. (5) 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. (A) 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— (i) the coordination of service delivery for individuals with sickle cell disease; (ii) genetic counseling and testing; (iii) bundling of technical services related to the prevention and treatment of sickle cell disease; (iv) training of health professionals; and (v) identifying and establishing other efforts related to the expansion and coordination of education, treatment, and continuity of care programs for individuals with sickle cell disease. (B) to eligible entities located in different regions of the United States. (2) 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: (A) To facilitate and coordinate the delivery of education, treatment, and continuity of care for individuals with sickle cell disease under— (i) the entity’s collaborative agreement with a community-based sickle cell disease organization or a nonprofit entity that works with individuals who have sickle cell disease; (ii) the sickle cell disease newborn screening program for the State in which the entity is located; and (iii) the maternal and child health program under title V of the Social Security Act (42 U.S.C. 701 et seq.) for the State in which the entity is located. (B) To train nursing and other health staff who provide care for individuals with sickle cell disease. (C) To enter into a partnership with adult or pediatric hematologists in the region and other regional experts in sickle cell disease at tertiary and academic health centers and State and county health offices. (D) To identify and secure resources for ensuring reimbursement under the medicaid program, State children’s health insurance program, and other health programs for the prevention and treatment of sickle cell disease. (E) To provide or coordinate services for adolescents with sickle cell disease making the transition to adult health care. (A) The Administrator shall enter into a contract with an entity to serve as the National Coordinating Center for the demonstration program conducted under this subsection. (B) The National Coordinating Center shall— (i) collect, coordinate, monitor, and distribute data, best practices, and findings regarding the activities funded under grants made to eligible entities under the demonstration program; (ii) develop a model protocol for eligible entities with respect to the prevention and treatment of sickle cell disease; (iii) develop educational materials regarding the prevention and treatment of sickle cell disease; and (iv) 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— (I) the number and type of health care resources utilized (such as emergency room visits, hospital visits, length of stay, and physician visits for individuals with sickle cell disease); and (II) the number of individuals that were tested and subsequently received genetic counseling for the sickle cell trait. (4) 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. (5) In this subsection: (A) The term “Administrator” means the Administrator of the Health Resources and Services Administration. (B) 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— (i) has a collaborative agreement with a community-based sickle cell disease organization or a nonprofit entity with experience in working with individuals who have sickle cell disease; and (ii) demonstrates to the Administrator that either the Federally-qualified health center, the nonprofit hospital or clinic, the university health center, the organization or entity described in clause (i), or the experts described in paragraph (2)(C), has at least 5 years of experience in working with individuals who have sickle cell disease. (C) 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)). (6) There is authorized to be appropriated to carry out this subsection, $4,455,000 for each of fiscal years 2019 through 2023.