Page:United States Statutes at Large Volume 118.djvu/1590

 118 STAT. 1560 PUBLIC LAW 108–357—OCT. 22, 2004 that does not receive funds from the National Institutes of Health; or (II) Federally qualified health centers that intend to develop a partnership or other arrange ment with a comprehensive Sickle Cell Disease treatment center that does not receive funds from the National Institutes of Health. (2) ADDITIONAL REQUIREMENTS.—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 edu cation, 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 pro gram 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 chil dren’s health insurance program, and other health pro grams for the prevention and treatment of Sickle Cell Disease. (3) NATIONAL COORDINATING CENTER.— (A) ESTABLISHMENT.—The Administrator shall enter into a contract with an entity to serve as the National Coordinating Center for the demonstration program con ducted under this subsection. (B) ACTIVITIES DESCRIBED.—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 effective ness 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, Contracts.

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