II 

Calendar No. 553 

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, Mr. BOOKER, Mr. JONES, Mr. CASSIDY, Ms. STABENOW, Ms. WARREN, and Mr. BROWN) introduced the following bill; which 

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

Labor, and Pensions 

AUGUST 15, 2018 

Reported by Mr. ALEXANDER, with an amendment 

[Strike out all after the enacting clause and insert the part printed in italic] 

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, 


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1 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

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

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

4 and Treatment Act of 2018’’. 

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

6 this Act is as follows: 

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. 

7 SEC. 2. SENSE OF THE SENATE. 

8 It is the Sense of the Senate that further research 

9 should be undertaken to expand the understanding of the 

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

11 SEC. 3. SICKLE CELL DISEASE SURVEILLANCE. 

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

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

14 280g–17) the following: 

15 ‘‘SEC. 399V–7. NATIONAL SICKLE CELL DISEASE SURVEIL16 LANCE, PREVENTION, AND TREATMENT PRO17 GRAM. 

18 ‘‘(a) SURVEILLANCE.— 

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

20 fiscal year for which appropriations are available to 

21 carry out this subsection, make grants to not more 

22 than 20 eligible entities for the following purposes: 


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1 ‘‘(A) To conduct surveillance and maintain 

2 data on the prevalence and distribution of sickle 

3 cell disease and its associated health outcomes, 

4 complications, and treatments. 

5 ‘‘(B) To conduct public health initiatives 

6 with respect to sickle cell disease, including one 

7 or more of the following: 

8 ‘‘(i) Increasing efforts to improve ac9 cess to high-quality sickle cell disease-re10 lated health care, including the use of 

11 treatments approved under section 505 of 

12 the Federal Food, Drug, and Cosmetic Act 

13 or licensed under section 351 of this Act. 

14 ‘‘(ii) Working with partners to im15 prove health outcomes of people with sickle 

16 cell disease over the lifespan by promoting 

17 guidelines for sickle cell disease screening, 

18 prevention, and treatment, including man19 agement of sickle cell disease complica20 tions. 

21 ‘‘(iii) Providing support to commu22 nity-based organizations and State and 

23 local health departments in conducting 

24 sickle cell disease education and training 


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1 activities for patients, communities, and 

2 health care providers. 

3 ‘‘(iv) Supporting and training State 

4 health departments and regional labora5 tories in comprehensive testing to identify 

6 specific forms of sickle cell disease in peo7 ple of all ages. 

8 ‘‘(C) To identify and evaluate promising 

9 strategies for prevention and treatment of sickle 

10 cell disease complications, including through 

11 one or more of the following: 

12 ‘‘(i) Improving estimates of the na13 tional incidence and prevalence of sickle 

14 cell disease, including estimates about the 

15 specific types of sickle cell disease. 

16 ‘‘(ii) Identifying health disparities re17 lated to sickle cell disease. 

18 ‘‘(iii) Assessing the utilization of 

19 therapies and strategies to prevent com20 plications related to sickle cell disease. 

21 ‘‘(iv) Evaluating the impact of ge22 netic, environmental, behavioral, and other 

23 risk factors that may affect sickle cell dis24 ease health outcomes. 


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

2 shall, to the extent practicable, award grants under 

3 this subsection to eligible entities across the United 

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

5 United States population with sickle cell disease. 

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

7 subsection, an eligible entity shall submit an applica8 tion to the Secretary at such time, in such manner, 

9 and containing such information as the Secretary 

10 may require. 

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

12 term ‘eligible entity’ includes the 50 States, the Dis13 trict of Columbia, the Commonwealth of Puerto 

14 Rico, the United States Virgin Islands, the Com15 monwealth of the Northern Mariana Islands, Amer16 ican Samoa, Guam, the Federated States of Micro17 nesia, the Republic of Marshall Islands, the Republic 

18 of Palau, a State health or public health depart19 ment, an institution of higher education, or a non20 profit entity.’’. 

21 SEC. 4. SICKLE CELL DISEASE PREVENTION AND TREAT22 MENT. 

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

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

25 357; 42 U.S.C. 300b–1 note) is amended— 


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

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

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

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

5 the program is conducted under this section for the 

6 purpose of developing and establishing systemic 

7 mechanisms to improve the prevention and treat8 ment of Sickle Cell Disease’’ and inserting ‘‘grants 

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

10 which the program is conducted under this section 

11 for the purpose of developing and establishing sys12 temic mechanisms to improve the prevention and 

13 treatment of sickle cell disease in populations with 

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

15 (3) in paragraph (1)(B)— 

16 (A) by striking clause (ii) (relating to pri17 ority); and 

18 (B) by striking ‘‘GRANT AWARD REQUIRE19 MENTS’’ and all that follows through ‘‘The Ad20 ministrator shall’’ and inserting ‘‘GEOGRAPHIC

21 DIVERSITY.—The Administrator shall’’; 

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

23 new subparagraph at the end: 

24 ‘‘(E) To expand, coordinate, and imple25 ment transition services for adolescents with 


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1 sickle cell disease making the transition to adult 

2 health care.’’; and 

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

4 for each of fiscal years 2005 through 2009’’ and in5 serting ‘‘$4,455,000 for each of fiscal years 2018 

6 through 2022’’. 

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

8 712 of the American Jobs Creation Act of 2004 (Public 

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

10 subsection (a), is— 

11 (1) transferred to the Public Health Service Act 

12 (42 U.S.C. 201 et seq.); 

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

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

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

16 SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTI17 TIES. 

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

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

20 the end the following: 

21 ‘‘(c) COLLABORATION WITH COMMUNITY-BASED EN22 TITIES.—To be eligible to receive a grant or other assist23 ance under subsection (a) or (b), an eligible entity must 

24 have in effect a collaborative agreement with a commuVerDate Sep 11 2014 21:48 Aug 15, 2018 Jkt 079200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6401 E:\BILLS\S2465.RS S2465

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1 nity-based organization with five or more years of experi2 ence in providing services to sickle cell disease patients.’’. 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Disease and 

5 Other Heritable Blood Disorders Research, Surveillance, 

6 Prevention, and Treatment Act of 2018’’. 

7 SEC. 2. DATA COLLECTION ON CERTAIN BLOOD DIS8 ORDERS. 

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

10 is amended by inserting after section 1105 (42 U.S.C. 300b11 4) the following: 

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

13 BLOOD DISORDERS RESEARCH, SURVEIL14 LANCE, PREVENTION, AND TREATMENT. 

15 ‘‘(a) GRANTS.— 

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

17 grants related to heritable blood disorders, including 

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

19 purposes: 

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

21 diseases and conditions, including subtypes as 

22 applicable, and their associated health outcomes 

23 and complications, including for the purpose 

24 of— 


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1 ‘‘(i) improving national incidence and 

2 prevalence data; 

3 ‘‘(ii) identifying health disparities, in4 cluding the geographic distribution, related 

5 to such diseases and conditions; 

6 ‘‘(iii) assessing the utilization of thera7 pies and strategies to prevent complications; 

8 and 

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

10 environmental, behavioral, and other risk 

11 factors that may affect such individuals. 

12 ‘‘(B) To conduct public health activities 

13 with respect to such conditions, which may in14 clude— 

15 ‘‘(i) developing strategies to improve 

16 health outcomes and access to quality health 

17 care for the screening for, and treatment 

18 and management of, such diseases and con19 ditions, including through public-private 

20 partnerships; 

21 ‘‘(ii) providing support to community22 based organizations and State and local 

23 health departments in conducting education 

24 and training activities for patients, commuVerDate Sep 11 2014 21:48 Aug 15, 2018 Jkt 079200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6203 E:\BILLS\S2465.RS S2465

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1 nities, and health care providers concerning 

2 such diseases and conditions; 

3 ‘‘(iii) supporting State health depart4 ments and regional laboratories, including 

5 through training, in testing to identify such 

6 diseases and conditions, including specific 

7 forms of sickle cell disease, in individuals of 

8 all ages; and 

9 ‘‘(iv) the identification and evaluation 

10 of best practices for treatment of such dis11 eases and conditions, and prevention and 

12 management of their related complications. 

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

14 shall, to the extent practicable, award grants under 

15 this subsection to eligible entities across the United 

16 States to improve data on the incidence and preva17 lence of heritable blood disorders, including sickle cell 

18 disease, and the geographic distribution of such dis19 eases and conditions. 

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

21 subsection, an eligible entity shall submit an applica22 tion to the Secretary at such time, in such manner, 

23 and containing such information as the Secretary 

24 may require. 


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

2 subsection, the Secretary may give priority, as appro3 priate, to eligible entities that have a relationship 

4 with a community-based organization that has expe5 rience in, or is capable of, providing services to indi6 viduals with heritable blood disorders, including sickle 

7 cell disease. 

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

9 term ‘eligible entity’ includes the 50 States, the Dis10 trict of Columbia, the Commonwealth of Puerto Rico, 

11 the United States Virgin Islands, the Commonwealth 

12 of the Northern Mariana Islands, American Samoa, 

13 Guam, the Federated States of Micronesia, the Repub14 lic of Marshall Islands, the Republic of Palau, Indian 

15 tribes, a State or local health department, an institu16 tion of higher education, or a nonprofit entity with 

17 appropriate experience to conduct the activities under 

18 this subsection.’’. 

19 SEC. 3. SICKLE CELL DISEASE PREVENTION AND TREAT20 MENT. 

21 (a) REAUTHORIZATION.—Section 712(c) of the Amer22 ican Jobs Creation Act of 2004 (Public Law 108–357; 42 

23 U.S.C. 300b–1 note) is amended— 

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

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


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1 (2) in paragraph (1)(A), by striking ‘‘shall con2 duct a demonstration program by making grants to 

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

4 the program is conducted under this section for the 

5 purpose of developing and establishing systemic mech6 anisms to improve the prevention and treatment of 

7 Sickle Cell Disease’’ and inserting ‘‘shall continue ef8 forts, including by awarding grants, to develop or es9 tablish mechanisms to improve the treatment of sickle 

10 cell disease, and to improve the prevention and treat11 ment of complications of sickle cell disease, in popu12 lations with a high proportion of individuals with 

13 sickle cell disease’’; 

14 (3) in paragraph (1)(B)— 

15 (A) by striking clause (ii) (relating to pri16 ority); and 

17 (B) by striking ‘‘GRANT AWARD REQUIRE18 MENTS’’ and all that follows through ‘‘The Ad19 ministrator shall’’ and inserting ‘‘GEOGRAPHIC

20 DIVERSITY.—The Administrator shall’’; 

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

22 new subparagraph at the end: 

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

24 adolescents with sickle cell disease making the 

25 transition to adult health care.’’; and 


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

2 for each of fiscal years 2005 through 2009’’ and in3 serting ‘‘$4,455,000 for each of fiscal years 2019 

4 through 2023’’. 

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

6 712 of the American Jobs Creation Act of 2004 (Public Law 

7 108-357; 42 U.S.C. 300b-1 note), as amended by subsection 

8 (a), is— 

9 (1) transferred to the Public Health Service Act 

10 (42 U.S.C. 201 et seq.); 

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

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

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

14 SEC. 4. SENSE OF THE SENATE. 

15 It is the Sense of the Senate that further research 

16 should be undertaken to expand the understanding of the 

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

18 including sickle cell disease. 


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Calendar No. 553 

115TH CONGRESS 

2D SESSION S. 2465 

A BILL 

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 treatAUGUST 15, 2018 

Reported with an amendment 


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