I 

113TH CONGRESS 

2D SESSION H. R. 5124 

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 HOUSE OF REPRESENTATIVES 

JULY 16, 2014 

Mr. DANNY K. DAVIS of Illinois (for himself and Mr. BURGESS) introduced 

the following bill; 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 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 2014’’. 

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. Sickle cell disease research. 

Sec. 3. Sickle cell disease surveillance. 

Sec. 4. Sickle cell disease prevention and treatment. 

Sec. 5. Collaboration with community-based entities. 

Sec. 6. Authorization of appropriations. 

1 SEC. 2. SICKLE CELL DISEASE RESEARCH. 

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

3 is amended by inserting after section 399V–5 (42 U.S.C. 

4 280g–16) the following: 

5 ‘‘SEC. 399V–6. NATIONAL SICKLE CELL DISEASE RESEARCH, 

6 SURVEILLANCE, PREVENTION, AND TREAT7 MENT PROGRAM. 

8 ‘‘(a) RESEARCH.—The Secretary may conduct or 

9 support research to expand the understanding of the cause 

10 of, and to find a cure for, sickle cell disease.’’. 

11 SEC. 3. SICKLE CELL DISEASE SURVEILLANCE. 

12 Section 399V–6 of the Public Health Service Act, as 

13 added by section 2, is amended by adding at the end the 

14 following: 

15 ‘‘(b) SURVEILLANCE.— 

16 ‘‘(1) GRANTS.—The Secretary shall, for each 

17 fiscal year for which appropriations are available to 

18 carry out this subsection, make grants to not more 

19 than 20 States— 

20 ‘‘(A) to conduct surveillance and maintain 

21 data on the prevalence and distribution of sickle 


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1 cell disease and its associated health outcomes, 

2 complications, and treatments; 

3 ‘‘(B) to conduct public health initiatives 

4 with respect to sickle cell disease, including— 

5 ‘‘(i) increasing efforts to improve ac6 cess to, and receipt of, high-quality sickle 

7 cell disease-related health care, including 

8 the use of proven treatments such as 

9 Hydroxyurea; 

10 ‘‘(ii) working with partners to improve 

11 health outcomes of people with sickle cell 

12 disease over the lifespan by promoting 

13 guidelines for sickle cell disease screening, 

14 prevention, and treatment, including man15 agement of sickle cell disease complica16 tions; 

17 ‘‘(iii) providing support to community18 based organizations and State and local 

19 health departments in conducting sickle 

20 cell disease education and training activi21 ties for patients, communities, and health 

22 care providers; and 

23 ‘‘(iv) supporting and training State 

24 health departments and regional labora25 tories in comprehensive testing to identify 


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1 specific forms of sickle cell disease in peo2 ple of all ages; and 

3 ‘‘(C) to identify and evaluate promising 

4 strategies for prevention and treatment of sickle 

5 cell disease complications, including through— 

6 ‘‘(i) improving estimates of the na7 tional incidence and prevalence of sickle 

8 cell disease, including estimates about the 

9 specific types of sickle cell disease; 

10 ‘‘(ii) identifying health disparities re11 lated to sickle cell disease; 

12 ‘‘(iii) assessing the utilization of 

13 therapies and strategies to prevent com14 plications related to sickle cell disease; and 

15 ‘‘(iv) evaluating the impact of genetic, 

16 environmental, behavioral, and other risk 

17 factors that may affect sickle cell disease 

18 health outcomes. 

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

20 shall, to the extent practicable, award grants under 

21 this subsection to States across the United States so 

22 as to include data on the majority of the United 

23 States population with sickle cell disease. 

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

25 subsection, a State shall submit an application to 


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1 the Secretary at such time, in such manner, and 

2 containing such information as the Secretary may 

3 require. 

4 ‘‘(4) DEFINITIONS.—In this subsection: 

5 ‘‘(A) The term ‘Secretary’ means the Sec6 retary of Health and Human Services, acting 

7 through the Director of the National Center on 

8 Birth Defects and Developmental Disabilities. 

9 ‘‘(B) The term ‘State’ includes the 50 

10 States, the District of Columbia, the Common11 wealth of Puerto Rico, the United States Virgin 

12 Islands, the Commonwealth of the Northern 

13 Mariana Islands, American Samoa, Guam, the 

14 Federated States of Micronesia, the Republic of 

15 the Marshall Islands, and the Republic of 

16 Palau.’’. 

17 SEC. 4. SICKLE CELL DISEASE PREVENTION AND TREAT18 MENT. 

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

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

21 357; 42 U.S.C. 300b–1 note) is amended— 

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

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

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

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

6 which the program is conducted under this section 

7 for the purpose of developing and establishing sys8 temic mechanisms to improve the prevention and 

9 treatment of sickle cell disease in populations with 

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

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 expand, coordinate, and imple21 ment transition services for adolescents with 

22 sickle cell disease making the transition to adult 

23 health care.’’; and 

24 (5) by striking paragraph (6). 

25 (b) TECHNICAL CHANGES.— 


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1 (1) Subsection (c) of section 712 of the Amer2 ican Jobs Creation Act of 2004 (Public Law 108– 

3 357; 42 U.S.C. 300b–1 note) is— 

4 (A) transferred to the Public Health Serv5 ice Act (42 U.S.C. 201 et seq.); and 

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

7 6 of such Act, as added and amended by sec8 tions 2 and 3 of this Act. 

9 (2) The table of contents in section 1(c) of the 

10 American Jobs Creation Act of 2004 (Public Law 

11 108–357) is amended by striking the item relating 

12 to section 712. 

13 SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTI14 TIES. 

15 Section 399V–6 of the Public Health Service Act, as 

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

17 the end the following: 

18 ‘‘(c) COLLABORATION WITH COMMUNITY-BASED EN19 TITIES.—To be eligible to receive a grant or other assist20 ance under subsection (a), (b), or (c), an entity must have 

21 in effect a collaborative agreement with a community22 based organization with 5 or more years of experience in 

23 providing services to sickle cell disease patients.’’. 


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1 SEC. 6. AUTHORIZATION OF APPROPRIATIONS. 

2 Section 399V–6 of the Public Health Service Act, as 

3 amended by section 5, is further amended by adding at 

4 the end the following: 

5 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

6 carry out this section, there are authorized to be appro7 priated $20,000,000 for each of fiscal years 2015 through 

8 2020.’’. 

Æ 


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