,i #aacth ,,congress #b;d ,session ,h4 ,r4 #eabd ,,in ,,the ,,house ,,of ,,representatives ,july #af1 #bjad ,mr4 ,danny ,k4 ,davis of ,illinois 7for himself and ,mr4 ,burgess7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to amend the ,public ,health ,service ,act to reauthorize a sickle cell disease prevention and treatment demonstration program and to provide for sickle cell disease research1 surveillance1 prevention1 and treatment4 #a4 ,short title2 table of contents 7a7 ,short title ,this ,act may be cited as the ,sickle ,cell ,disease ,research1 ,surveillance1 ,prevention1 and ,treatment ,act of #bjad4 7b7 ,table of contents ,the table of contents of this ,act is as follows3 ,sec4 #a4 ,short title2 table of contents4 ,sec4 #b4 ,sickle cell disease research4 ,sec4 #c4 ,sickle cell disease surveillance4 ,sec4 #d4 ,sickle cell disease prevention and treatment4 ,sec4 #e4 ,collaboration with community-based entities4 ,sec4 #f4 ,authorization of appropriations4 #b4 ,sickle cell disease research ,part ,p of title ,,iii of the ,public ,health ,service ,act is amended by inserting after section #cii,v-#e 7#db ,u4,s4,c4 #bhj;g-#af7 the following3 #cii,v-#f4 ,national ,sickle ,cell ,disease ,research1 ,surveillance1 ,prevention1 and ,treatment ,program 7a7 ,research ,the ,secretary may conduct or support research to expand the understanding of the cause of1 and to find a cure for1 sickle cell disease4 4 #c4 ,sickle cell disease surveillance ,section #cii,v-#f of the ,public ,health ,service ,act1 as added by section #b1 is amended by adding at the end the following3 7b7 ,surveillance 7#a7 ,grants ,the ,secretary shall1 for each fiscal year for which appropriations are available to carry out this subsection1 make grants to not more than #bj ,states-- 7,a7 to conduct surveillance and maintain data on the prevalence and distribution of sickle cell disease and its associated health outcomes1 complications1 and treatments2 7,b7 to conduct public health initiatives with respect to sickle cell disease1 including-- 7i7 increasing efforts to improve access to1 and receipt of1 high-quality sickle cell disease-related health care1 including the use of proven treatments such as ,hydroxyurea2 7ii7 working with partners to improve health outcomes of people with sickle cell disease over the lifespan by promoting guidelines for sickle cell disease screening1 prevention1 and treatment1 including management of sickle cell disease complications2 7iii7 providing support to community-based organizations and ,state and local health departments in conducting sickle cell disease education and training activities for patients1 communities1 and health care providers2 and 7iv7 supporting and training ,state health departments and regional laboratories in comprehensive testing to identify specific forms of sickle cell disease in people of all ages2 and 7,c7 to identify and evaluate promising strategies for prevention and treatment of sickle cell disease complications1 including through-- 7i7 improving estimates of the national incidence and prevalence of sickle cell disease1 including estimates about the specific types of sickle cell disease2 7ii7 identifying health disparities related to sickle cell disease2 7iii7 assessing the utilization of therapies and strategies to prevent complications related to sickle cell disease2 and 7iv7 evaluating the impact of genetic1 environmental1 behavioral1 and other risk factors that may affect sickle cell disease health outcomes4 7#b7 ,population included ,the ,secretary shall1 to the extent practicable1 award grants under this subsection to ,states across the ,united ,states so as to include data on the majority of the ,united ,states population with sickle cell disease4 7#c7 ,application ,to seek a grant under this subsection1 a ,state shall submit an application to the ,secretary at such time1 in such manner1 and containing such information as the ,secretary may require4 7#d7 ,definitions ,in this subsection3 7,a7 ,the term ,secretary means the ,secretary of ,health and ,human ,services1 acting through the ,director of the ,national ,center on ,birth ,defects and ,developmental ,disabilities4 7,b7 ,the term ,state includes the #ej ,states1 the ,district of ,columbia1 the ,commonwealth of ,puerto ,rico1 the ,united ,states ,virgin ,islands1 the ,commonwealth of the ,northern ,mariana ,islands1 ,american ,samoa1 ,guam1 the ,federated ,states of ,micronesia1 the ,republic of the ,marshall ,islands1 and the ,republic of ,palau4 4 #d4 ,sickle cell disease prevention and treatment 7a7 ,reauthorization ,section #gab7;c7 of the ,american ,jobs ,creation ,act of #bjjd 7,public ,law #ajh-ceg2 #db ,u4,s4,c4 #cjj;b-#a note7 is amended-- 7#a7 by striking ,sickle ,cell ,disease each place it appears and inserting sickle cell disease2 7#b7 in paragraph 7#a77;,a71 by striking grants to up to #dj eligible entities for each fiscal year in which the program is conducted under this section for the purpose of developing and establishing systemic mechanisms to improve the prevention and treatment of ,sickle ,cell ,disease and inserting grants to up to #be eligible entities for each fiscal year in which the program is conducted under this section for the purpose of developing and establishing systemic mechanisms to improve the prevention and treatment of sickle cell disease in populations with a high density of sickle cell disease patients2 7#c7 in paragraph 7#a77;,b7-- 7,a7 by striking clause 7ii7 7relating to priority72 and 7,b7 by striking ,grant award requirements and all that follows through ,the ,administrator shall and inserting ,geographic diversity4--,the ,administrator shall2 7#d7 in paragraph 7#b71 by adding the following new subparagraph at the end3 7,e7 ,to expand1 coordinate1 and implement transition services for adolescents with sickle cell disease making the transition to adult health care4 2 and 7#e7 by striking paragraph 7#f74 7b7 ,technical changes 7#a7 ,subsection 7c7 of section #gab of the ,american ,jobs ,creation ,act of #bjjd 7,public ,law #ajh-ceg2 #db ,u4,s4,c4 #cjj;b-#a note7 is-- 7,a7 transferred to the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bja et seq472 and 7,b7 inserted at the end of section #cii,v-#f of such ,act1 as added and amended by sections #b and #c of this ,act4 7#b7 ,the table of contents in section #a7;c7 of the ,american ,jobs ,creation ,act of #bjjd 7,public ,law #ajh-ceg7 is amended by striking the item relating to section #gab4 #e4 ,collaboration with community-based entities ,section #cii,v-#f of the ,public ,health ,service ,act1 as amended by section #c1 is further amended by adding at the end the following3 7c7 ,collaboration with community-,based entities ,to be eligible to receive a grant or other assistance under subsection 7a71 7b71 or 7c71 an entity must have in effect a collaborative agreement with a community-based organization with #e or more years of experience in providing services to sickle cell disease patients4 4 #f4 ,authorization of appropriations ,section #cii,v-#f of the ,public ,health ,service ,act1 as amended by section #e1 is further amended by adding at the end the following3 7d7 ,authorization of appropriations ,to carry out this section1 there are authorized to be appropriated #bj1jjj1jjj for each of fiscal years #bjae through #bjbj4 4