#aaeth ,,congress #b;d ,session ,s4 #bdfe ,,an ,,act ,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 title ,this ,act may be cited as the ,sickle ,cell ,disease and ,other ,heritable ,blood ,disorders ,research1 ,surveillance1 ,prevention1 and ,treatment ,act of #bjah4 #b4 ,data collection on certain blood disorders ,part ,a of title ,,xi of the ,public ,health ,service ,act is amended by inserting after section #aaje 7#db ,u4,s4,c4 #cjj;b-#d7 the following3 #aajf4 ,sickle cell disease and other heritable blood disorders research1 surveillance1 prevention1 and treatment 7a7 ,grants 7#a7 ,in general ,the ,secretary may award grants related to heritable blood disorders1 including sickle cell disease1 for one or more of the following purposes3 7,a7 ,to collect and maintain data on such diseases and conditions1 including subtypes as applicable1 and their associated health outcomes and complications1 including for the purpose of-- 7i7 improving national incidence and prevalence data2 7ii7 identifying health disparities1 including the geographic distribution1 related to such diseases and conditions2 7iii7 assessing the utilization of therapies and strategies to prevent complications2 and 7iv7 evaluating the effects of genetic1 environmental1 behavioral1 and other risk factors that may affect such individuals4 7,b7 ,to conduct public health activities with respect to such conditions1 which may include-- 7i7 developing strategies to improve health outcomes and access to quality health care for the screening for1 and treatment and management of1 such diseases and conditions1 including through public-private partnerships2 7ii7 providing support to community-based organizations and ,state and local health departments in conducting education and training activities for patients1 communities1 and health care providers concerning such diseases and conditions2 7iii7 supporting ,state health departments and regional laboratories1 including through training1 in testing to identify such diseases and conditions1 including specific forms of sickle cell disease1 in individuals of all ages2 and 7iv7 the identification and evaluation of best practices for treatment of such diseases and conditions1 and prevention and management of their related complications4 7#b7 ,population included ,the ,secretary shall1 to the extent practicable1 award grants under this subsection to eligible entities across the ,united ,states to improve data on the incidence and prevalence of heritable blood disorders1 including sickle cell disease1 and the geographic distribution of such diseases and conditions4 7#c7 ,application ,to seek a grant under this subsection1 an eligible entity shall submit an application to the ,secretary at such time1 in such manner1 and containing such information as the ,secretary may require4 7#d7 ,priority ,in awarding grants under this subsection1 the ,secretary may give priority1 as appropriate1 to eligible entities that have a relationship with a community-based organization that has experience in1 or is capable of1 providing services to individuals with heritable blood disorders1 including sickle cell disease4 7#e7 ,eligible entity ,in this subsection1 the term eligible entity 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 ,marshall ,islands1 the ,republic of ,palau1 ,indian tribes1 a ,state or local health department1 an institution of higher education1 or a nonprofit entity with appropriate experience to conduct the activities under this subsection4 4 #c4 ,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 shall conduct a demonstration program by making 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 shall continue efforts1 including by awarding grants1 to develop or establish mechanisms to improve the treatment of sickle cell disease1 and to improve the prevention and treatment of complications of sickle cell disease1 in populations with a high proportion of individuals with sickle cell disease2 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 provide or coordinate services for adolescents with sickle cell disease making the transition to adult health care4 2 and 7#e7 in paragraph 7#f71 by striking #aj1jjj1jjj for each of fiscal years #bjje through #bjji and inserting #d1dee1jjj for each of fiscal years #bjai through #bjbc4 7b7 ,technical changes ,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 note71 as amended by subsection 7a71 is-- 7#a7 transferred to the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bja et seq472 7#b7 redesignated as subsection 7b72 and 7#c7 inserted at the end of section #aajf of such ,act1 as added by section #b of this ,act4 #d4 ,sense of the ,senate ,it is the ,sense of the ,senate that further research should be undertaken to expand the understanding of the causes of1 and to find cures for1 heritable blood disorders1 including sickle cell disease4 ,passed the ,senate ,october #aa1 #bjah4,secretary