I 
115TH CONGRESS 
1ST SESSION H. R. 2410 
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 
MAY 11, 2017 
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 demonstra-
tion program and to provide for sickle cell disease re-
search, surveillance, prevention, and treatment. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 
(a) SHORT TITLE.—This Act may be cited as the 
‘‘Sickle Cell Disease Research, Surveillance, Prevention, 
and Treatment Act of 2017’’. 
(b) TABLE OF CONTENTS.—The table of contents of 
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. 2. SICKLE CELL DISEASE RESEARCH. 
Part P of title III of the Public Health Service Act 
is amended by inserting after section 399V–6 (42 U.S.C. 
280g–17) the following: 
‘‘SEC. 399V–7. NATIONAL SICKLE CELL DISEASE RESEARCH, 
SURVEILLANCE, PREVENTION, AND TREAT-
MENT PROGRAM. 
‘‘(a) RESEARCH.—The Secretary may conduct or 
support research to expand the understanding of the cause 
of, and to find a cure for, sickle cell disease.’’. 
SEC. 3. SICKLE CELL DISEASE SURVEILLANCE. 
Section 399V–7 of the Public Health Service Act, as 
added by section 2, is amended by adding at the end the 
following: 
‘‘(b) SURVEILLANCE.— 
‘‘(1) GRANTS.—The Secretary may, for each 
fiscal year for which appropriations are available to 
carry out this subsection, make grants to not more 
than 20 States— 
‘‘(A) to conduct surveillance and maintain 
data on the prevalence and distribution of sickle 
cell disease and its associated health outcomes, 
complications, and treatments; 
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‘‘(B) to conduct public health initiatives 
with respect to sickle cell disease, including— 
‘‘(i) increasing efforts to improve ac-
cess to, and receipt of, high-quality sickle 
cell disease-related health care, including 
the use of treatments approved under sec-
tion 505 of the Federal Food, Drug, and 
Cosmetic Act or licensed under section 351 
of this Act; 
‘‘(ii) working with partners to improve 
health outcomes of people with sickle cell 
disease over the lifespan by promoting 
guidelines for sickle cell disease screening, 
prevention, and treatment, including man-
agement of sickle cell disease complica-
tions; 
‘‘(iii) providing support to community- 
based organizations and State and local 
health departments in conducting sickle 
cell disease education and training activi-
ties for patients, communities, and health 
care providers; and 
‘‘(iv) supporting and training State 
health departments and regional labora-
tories in comprehensive testing to identify 
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specific forms of sickle cell disease in peo-
ple of all ages; and 
‘‘(C) to identify and evaluate promising 
strategies for prevention and treatment of sickle 
cell disease complications, including through— 
‘‘(i) improving estimates of the na-
tional incidence and prevalence of sickle 
cell disease, including estimates about the 
specific types of sickle cell disease; 
‘‘(ii) identifying health disparities re-
lated to sickle cell disease; 
‘‘(iii) assessing the utilization of 
therapies and strategies to prevent com-
plications related to sickle cell disease; and 
‘‘(iv) evaluating the impact of genetic, 
environmental, behavioral, and other risk 
factors that may affect sickle cell disease 
health outcomes. 
‘‘(2) POPULATION INCLUDED.—The Secretary 
shall, to the extent practicable, award grants under 
this subsection to States across the United States so 
as to include data on the majority of the United 
States population with sickle cell disease. 
‘‘(3) APPLICATION.—To seek a grant under this 
subsection, a State shall submit an application to 
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the Secretary at such time, in such manner, and 
containing such information as the Secretary may 
require. 
‘‘(4) DEFINITIONS.—In this subsection: 
‘‘(A) The term ‘Secretary’ means the Sec-
retary of Health and Human Services, acting 
through the Director of the National Center on 
Birth Defects and Developmental Disabilities. 
‘‘(B) The term ‘State’ includes the 50 
States, the District of Columbia, the Common-
wealth of Puerto Rico, the United States Virgin 
Islands, the Commonwealth of the Northern 
Mariana Islands, American Samoa, Guam, the 
Federated States of Micronesia, the Republic of 
the Marshall Islands, and the Republic of 
Palau.’’. 
SEC. 4. SICKLE CELL DISEASE PREVENTION AND TREAT-
MENT. 
(a) REAUTHORIZATION.—Section 712(c) of the 
American Jobs Creation Act of 2004 (Public Law 108– 
357; 42 U.S.C. 300b–1 note) is amended— 
(1) by striking ‘‘Sickle Cell Disease’’ each place 
it appears and inserting ‘‘sickle cell disease’’; 
(2) in paragraph (1)(A), by striking ‘‘grants to 
up to 40 eligible entities for each fiscal year in which 
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the program is conducted under this section for the 
purpose of developing and establishing systemic 
mechanisms to improve the prevention and treat-
ment of Sickle Cell Disease’’ and inserting ‘‘grants 
to up to 25 eligible entities for each fiscal year in 
which the program is conducted under this section 
for the purpose of developing and establishing sys-
temic mechanisms to improve the prevention and 
treatment of sickle cell disease in populations with 
a high density of sickle cell disease patients’’; 
(3) in paragraph (1)(B)— 
(A) by striking clause (ii) (relating to pri-
ority); and 
(B) by striking ‘‘GRANT AWARD REQUIRE-
MENTS’’ and all that follows through ‘‘The Ad-
ministrator shall’’ and inserting ‘‘GEOGRAPHIC 
DIVERSITY.—The Administrator shall’’; 
(4) in paragraph (2), by adding the following 
new subparagraph at the end: 
‘‘(E) To expand, coordinate, and imple-
ment transition services for adolescents with 
sickle cell disease making the transition to adult 
health care.’’; and 
(5) in paragraph (6), by striking ‘‘$10,000,000 
for each of fiscal years 2005 through 2009’’ and in-
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serting ‘‘$4,455,000 for each of fiscal years 2018 
through 2022’’. 
(b) TECHNICAL CHANGES.—Subsection (c) of section 
712 of the American Jobs Creation Act of 2004 (Public 
Law 108–357; 42 U.S.C. 300b–1 note), as amended by 
subsection (a), is— 
(1) transferred to the Public Health Service Act 
(42 U.S.C. 201 et seq.); and 
(2) inserted at the end of section 399V–7 of 
such Act, as added and amended by sections 2 and 
3 of this Act. 
SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTI-
TIES. 
Section 399V–7 of the Public Health Service Act, as 
amended by section 4, is further amended by adding at 
the end the following: 
‘‘(d) COLLABORATION WITH COMMUNITY-BASED EN-
TITIES.—To be eligible to receive a grant or other assist-
ance under subsection (b) or (c), an entity must have in 
effect a collaborative agreement with a community-based 
organization with 5 or more years of experience in pro-
viding services to sickle cell disease patients.’’. 
Æ 
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