115TH CONGRESS 

2D SESSION S. 2465 

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 research, surveillance, prevention, and treatment. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 
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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Sickle Cell Disease 

3 and Other Heritable Blood Disorders Research, Surveil4 lance, Prevention, and Treatment Act of 2018’’. 

5 SEC. 2. DATA COLLECTION ON CERTAIN BLOOD DIS6 ORDERS. 

7 Part A of title XI of the Public Health Service Act 

8 is amended by inserting after section 1105 (42 U.S.C. 

9 300b–4) the following: 

10 ‘‘SEC. 1106. SICKLE CELL DISEASE AND OTHER HERITABLE 

11 BLOOD DISORDERS RESEARCH, SURVEIL12 LANCE, PREVENTION, AND TREATMENT. 

13 ‘‘(a) GRANTS.— 

14 ‘‘(1) IN GENERAL.—The Secretary may award 

15 grants related to heritable blood disorders, including 

16 sickle cell disease, for one or more of the following 

17 purposes: 

18 ‘‘(A) To collect and maintain data on such 

19 diseases and conditions, including subtypes as 

20 applicable, and their associated health outcomes 

21 and complications, including for the purpose 

22 of— 

23 ‘‘(i) improving national incidence and 

24 prevalence data; 
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1 ‘‘(ii) identifying health disparities, in2 cluding the geographic distribution, related 

3 to such diseases and conditions; 

4 ‘‘(iii) assessing the utilization of 

5 therapies and strategies to prevent com6 plications; and 

7 ‘‘(iv) evaluating the effects of genetic, 

8 environmental, behavioral, and other risk 

9 factors that may affect such individuals. 

10 ‘‘(B) To conduct public health activities 

11 with respect to such conditions, which may in12 clude— 

13 ‘‘(i) developing strategies to improve 

14 health outcomes and access to quality 

15 health care for the screening for, and 

16 treatment and management of, such dis17 eases and conditions, including through 

18 public-private partnerships; 

19 ‘‘(ii) providing support to community20 based organizations and State and local 

21 health departments in conducting edu22 cation and training activities for patients, 

23 communities, and health care providers 

24 concerning such diseases and conditions; 
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1 ‘‘(iii) supporting State health depart2 ments and regional laboratories, including 

3 through training, in testing to identify 

4 such diseases and conditions, including 

5 specific forms of sickle cell disease, in indi6 viduals of all ages; and 

7 ‘‘(iv) the identification and evaluation 

8 of best practices for treatment of such dis9 eases and conditions, and prevention and 

10 management of their related complications. 

11 ‘‘(2) POPULATION INCLUDED.—The Secretary 

12 shall, to the extent practicable, award grants under 

13 this subsection to eligible entities across the United 

14 States to improve data on the incidence and preva15 lence of heritable blood disorders, including sickle 

16 cell disease, and the geographic distribution of such 

17 diseases and conditions. 

18 ‘‘(3) APPLICATION.—To seek a grant under this 

19 subsection, an eligible entity shall submit an applica20 tion to the Secretary at such time, in such manner, 

21 and containing such information as the Secretary 

22 may require. 

23 ‘‘(4) PRIORITY.—In awarding grants under this 

24 subsection, the Secretary may give priority, as ap25 propriate, to eligible entities that have a relationship 
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1 with a community-based organization that has expe2 rience in, or is capable of, providing services to indi3 viduals with heritable blood disorders, including sick4 le cell disease. 

5 ‘‘(5) ELIGIBLE ENTITY.—In this subsection, the 

6 term ‘eligible entity’ includes the 50 States, the Dis7 trict of Columbia, the Commonwealth of Puerto 

8 Rico, the United States Virgin Islands, the Com9 monwealth of the Northern Mariana Islands, Amer10 ican Samoa, Guam, the Federated States of Micro11 nesia, the Republic of Marshall Islands, the Republic 

12 of Palau, Indian tribes, a State or local health de13 partment, an institution of higher education, or a 

14 nonprofit entity with appropriate experience to con15 duct the activities under this subsection.’’. 

16 SEC. 3. SICKLE CELL DISEASE PREVENTION AND TREAT17 MENT. 

18 (a) REAUTHORIZATION.—Section 712(c) of the 

19 American Jobs Creation Act of 2004 (Public Law 108– 

20 357; 42 U.S.C. 300b–1 note) is amended— 

21 (1) by striking ‘‘Sickle Cell Disease’’ each place 

22 it appears and inserting ‘‘sickle cell disease’’; 

23 (2) in paragraph (1)(A), by striking ‘‘shall con24 duct a demonstration program by making grants to 

25 up to 40 eligible entities for each fiscal year in which 
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1 the program is conducted under this section for the 

2 purpose of developing and establishing systemic 

3 mechanisms to improve the prevention and treat4 ment of Sickle Cell Disease’’ and inserting ‘‘shall 

5 continue efforts, including by awarding grants, to 

6 develop or establish mechanisms to improve the 

7 treatment of sickle cell disease, and to improve the 

8 prevention and treatment of complications of sickle 

9 cell disease, in populations with a high proportion of 

10 individuals with sickle cell disease’’; 

11 (3) in paragraph (1)(B)— 

12 (A) by striking clause (ii) (relating to pri13 ority); and 

14 (B) by striking ‘‘GRANT AWARD REQUIRE15 MENTS’’ and all that follows through ‘‘The Ad16 ministrator shall’’ and inserting ‘‘GEOGRAPHIC

17 DIVERSITY.—The Administrator shall’’; 

18 (4) in paragraph (2), by adding the following 

19 new subparagraph at the end: 

20 ‘‘(E) To provide or coordinate services for 

21 adolescents with sickle cell disease making the 

22 transition to adult health care.’’; and 

23 (5) in paragraph (6), by striking ‘‘$10,000,000 

24 for each of fiscal years 2005 through 2009’’ and in-
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1 serting ‘‘$4,455,000 for each of fiscal years 2019 

2 through 2023’’. 

3 (b) TECHNICAL CHANGES.—Subsection (c) of section 

4 712 of the American Jobs Creation Act of 2004 (Public 

5 Law 108–357; 42 U.S.C. 300b–1 note), as amended by 

6 subsection (a), is— 

7 (1) transferred to the Public Health Service Act 

8 (42 U.S.C. 201 et seq.); 

9 (2) redesignated as subsection (b); and 

10 (3) inserted at the end of section 1106 of such 

11 Act, as added by section 2 of this Act. 

12 SEC. 4. SENSE OF THE SENATE. 

13 It is the Sense of the Senate that further research 

14 should be undertaken to expand the understanding of the 

15 causes of, and to find cures for, heritable blood disorders, 

16 including sickle cell disease. 

Passed the Senate October 11, 2018. 

Attest: 

Secretary. 
115TH CONGRESS 

2D SESSION S. 2465 

AN ACT 

To amend the Public Health Service Act to reaution, and treatment. sickle cell disease research, surveillance, preven- ment demonstration program and to provide for thorize a sickle cell disease prevention and treat-