II 

115TH CONGRESS 

2D SESSION S. 2465 

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. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 28, 2018 

Mr. SCOTT (for himself and Mr. BOOKER) introduced the following bill; which 

was read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

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 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, 

3 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

4 (a) SHORT TITLE.—This Act may be cited as the 

5 ‘‘Sickle Cell Disease Research, Surveillance, Prevention, 

6 and Treatment Act of 2018’’. 

7 (b) TABLE OF CONTENTS.—The table of contents of 

8 this Act is as follows: 


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Sec. 1. Short title; table of contents. 

Sec. 2. Sense of the Senate. 

Sec. 3. Sickle cell disease surveillance. 

Sec. 4. Sickle cell disease prevention and treatment. 

Sec. 5. Collaboration with community-based entities. 

1 SEC. 2. SENSE OF THE SENATE. 

2 It is the Sense of the Senate that further research 

3 should be undertaken to expand the understanding of the 

4 cause of, and to find a cure for, sickle cell disease. 

5 SEC. 3. SICKLE CELL DISEASE SURVEILLANCE. 

6 Part P of title III of the Public Health Service Act 

7 is amended by inserting after section 399V–6 (42 U.S.C. 

8 280g–17) the following: 

9 ‘‘SEC. 399V–7. NATIONAL SICKLE CELL DISEASE SURVEIL10 LANCE, PREVENTION, AND TREATMENT PRO11 GRAM. 

12 ‘‘(a) SURVEILLANCE.— 

13 ‘‘(1) GRANTS.—The Secretary may, for each 

14 fiscal year for which appropriations are available to 

15 carry out this subsection, make grants to not more 

16 than 20 eligible entities for the following purposes: 

17 ‘‘(A) To conduct surveillance and maintain 

18 data on the prevalence and distribution of sickle 

19 cell disease and its associated health outcomes, 

20 complications, and treatments. 

21 ‘‘(B) To conduct public health initiatives 

22 with respect to sickle cell disease, including one 

23 or more of the following: 


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1 ‘‘(i) Increasing efforts to improve ac2 cess to high-quality sickle cell disease-re3 lated health care, including the use of 

4 treatments approved under section 505 of 

5 the Federal Food, Drug, and Cosmetic Act 

6 or licensed under section 351 of this Act. 

7 ‘‘(ii) Working with partners to im8 prove health outcomes of people with sickle 

9 cell disease over the lifespan by promoting 

10 guidelines for sickle cell disease screening, 

11 prevention, and treatment, including man12 agement of sickle cell disease complica13 tions. 

14 ‘‘(iii) Providing support to commu15 nity-based organizations and State and 

16 local health departments in conducting 

17 sickle cell disease education and training 

18 activities for patients, communities, and 

19 health care providers. 

20 ‘‘(iv) Supporting and training State 

21 health departments and regional labora22 tories in comprehensive testing to identify 

23 specific forms of sickle cell disease in peo24 ple of all ages. 


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1 ‘‘(C) To identify and evaluate promising 

2 strategies for prevention and treatment of sickle 

3 cell disease complications, including through 

4 one or more of the following: 

5 ‘‘(i) Improving estimates of the na6 tional incidence and prevalence of sickle 

7 cell disease, including estimates about the 

8 specific types of sickle cell disease. 

9 ‘‘(ii) Identifying health disparities re10 lated to sickle cell disease. 

11 ‘‘(iii) Assessing the utilization of 

12 therapies and strategies to prevent com13 plications related to sickle cell disease. 

14 ‘‘(iv) Evaluating the impact of ge15 netic, environmental, behavioral, and other 

16 risk factors that may affect sickle cell dis17 ease health outcomes. 

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

19 shall, to the extent practicable, award grants under 

20 this subsection to eligible entities across the United 

21 States so as to include data on the majority of the 

22 United States population with sickle cell disease. 

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

24 subsection, an eligible entity shall submit an applica25 tion to the Secretary at such time, in such manner, 


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1 and containing such information as the Secretary 

2 may require. 

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

4 term ‘eligible entity’ includes the 50 States, the Dis5 trict of Columbia, the Commonwealth of Puerto 

6 Rico, the United States Virgin Islands, the Com7 monwealth of the Northern Mariana Islands, Amer8 ican Samoa, Guam, the Federated States of Micro9 nesia, the Republic of Marshall Islands, the Republic 

10 of Palau, a State health or public health depart11 ment, an institution of higher education, or a non12 profit entity.’’. 

13 SEC. 4. SICKLE CELL DISEASE PREVENTION AND TREAT14 MENT. 

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

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

17 357; 42 U.S.C. 300b–1 note) is amended— 

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

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

20 (2) in paragraph (1)(A), by striking ‘‘grants to 

21 up to 40 eligible entities for each fiscal year in which 

22 the program is conducted under this section for the 

23 purpose of developing and establishing systemic 

24 mechanisms to improve the prevention and treat25 ment of Sickle Cell Disease’’ and inserting ‘‘grants 


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1 to up to 25 eligible entities for each fiscal year in 

2 which the program is conducted under this section 

3 for the purpose of developing and establishing sys4 temic mechanisms to improve the prevention and 

5 treatment of sickle cell disease in populations with 

6 a high density of sickle cell disease patients’’; 

7 (3) in paragraph (1)(B)— 

8 (A) by striking clause (ii) (relating to pri9 ority); and 

10 (B) by striking ‘‘GRANT AWARD REQUIRE11 MENTS’’ and all that follows through ‘‘The Ad12 ministrator shall’’ and inserting ‘‘GEOGRAPHIC

13 DIVERSITY.—The Administrator shall’’; 

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

15 new subparagraph at the end: 

16 ‘‘(E) To expand, coordinate, and imple17 ment transition services for adolescents with 

18 sickle cell disease making the transition to adult 

19 health care.’’; and 

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

21 for each of fiscal years 2005 through 2009’’ and in22 serting ‘‘$4,455,000 for each of fiscal years 2018 

23 through 2022’’. 

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

25 712 of the American Jobs Creation Act of 2004 (Public 


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

2 subsection (a), is— 

3 (1) transferred to the Public Health Service Act 

4 (42 U.S.C. 201 et seq.); 

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

6 (3) inserted at the end of section 399V–7 of 

7 such Act, as added by section 2 of this Act. 

8 SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTI9 TIES. 

10 Section 399V–7 of the Public Health Service Act, as 

11 amended by section 3, is further amended by adding at 

12 the end the following: 

13 ‘‘(c) COLLABORATION WITH COMMUNITY-BASED EN14 TITIES.—To be eligible to receive a grant or other assist15 ance under subsection (a) or (b), an eligible entity must 

16 have in effect a collaborative agreement with a commu17 nity-based organization with five or more years of experi18 ence in providing services to sickle cell disease patients.’’. 

Æ 


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