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
PL 115-327 (S.2465), enacted 12/18/2018

132 STAT. 4468 
PUBLIC LAW 115–327—DEC. 18, 2018 
Public Law 115–327 
115th Congress 
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 re-
search, surveillance, prevention, and treatment. 
Be it enacted by the Senate and House of Representatives of 
the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Sickle Cell Disease and Other 
Heritable Blood Disorders Research, Surveillance, Prevention, and 
Treatment Act of 2018’’. 
SEC. 2. DATA COLLECTION ON CERTAIN BLOOD DISORDERS. 
Part A of title XI of the Public Health Service Act is amended 
by inserting after section 1105 (42 U.S.C. 300b–4) the following: 
‘‘SEC. 1106. SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD 
DISORDERS RESEARCH, SURVEILLANCE, PREVENTION, 
AND TREATMENT. 
‘‘(a) GRANTS.— 
‘‘(1) IN GENERAL.—The Secretary may award grants related 
to heritable blood disorders, including sickle cell disease, for 
one or more of the following purposes: 
‘‘(A) To collect and maintain data on such diseases 
and conditions, including subtypes as applicable, and their 
associated health outcomes and complications, including 
for the purpose of— 
‘‘(i) improving national incidence and prevalence 
data; 
‘‘(ii) identifying health disparities, including the 
geographic distribution, related to such diseases and 
conditions; 
‘‘(iii) assessing the utilization of therapies and 
strategies to prevent complications; and 
‘‘(iv) evaluating the effects of genetic, environ-
mental, behavioral, and other risk factors that may 
affect such individuals. 
‘‘(B) To conduct public health activities with respect 
to such conditions, which may include— 
‘‘(i) developing strategies to improve health out-
comes and access to quality health care for the 
screening for, and treatment and management of, such 
diseases and conditions, including through public-pri-
vate partnerships; 
Strategies. 
Evaluation. 
Assessment. 
42 USC 300b–5. 
Sickle Cell 
Disease and 
Other Heritable 
Blood Disorders 
Research, 
Surveillance, 
Prevention, and 
Treatment Act 
of 2018. 
42 USC 201 note. 
Dec. 18, 2018 
[S. 2465] 
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132 STAT. 4469 
PUBLIC LAW 115–327—DEC. 18, 2018 
‘‘(ii) 
providing 
support 
to 
community-based 
organizations and State and local health departments 
in conducting education and training activities for 
patients, communities, and health care providers con-
cerning such diseases and conditions; 
‘‘(iii) supporting State health departments and 
regional laboratories, including through training, in 
testing to identify such diseases and conditions, 
including specific forms of sickle cell disease, in individ-
uals of all ages; and 
‘‘(iv) the identification and evaluation of best prac-
tices for treatment of such diseases and conditions, 
and prevention and management of their related com-
plications. 
‘‘(2) POPULATION INCLUDED.—The Secretary shall, to the 
extent practicable, award grants under this subsection to 
eligible entities across the United States to improve data on 
the incidence and prevalence of heritable blood disorders, 
including sickle cell disease, and the geographic distribution 
of such diseases and conditions. 
‘‘(3) APPLICATION.—To seek a grant under this subsection, 
an eligible entity shall submit an application to the Secretary 
at such time, in such manner, and containing such information 
as the Secretary may require. 
‘‘(4) PRIORITY.—In awarding grants under this subsection, 
the Secretary may give priority, as appropriate, to eligible 
entities that have a relationship with a community-based 
organization that has experience in, or is capable of, providing 
services to individuals with heritable blood disorders, including 
sickle cell disease. 
‘‘(5) ELIGIBLE ENTITY.—In this subsection, the term ‘eligible 
entity’ includes the 50 States, the District of Columbia, the 
Commonwealth 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 Marshall Islands, the Republic of Palau, Indian 
tribes, a State or local health department, an institution of 
higher education, or a nonprofit entity with appropriate experi-
ence to conduct the activities under this subsection.’’. 
SEC. 3. SICKLE CELL DISEASE PREVENTION AND TREATMENT. 
(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 ‘‘shall conduct a dem-
onstration program by making grants to up to 40 eligible enti-
ties for each fiscal year in which the program is conducted 
under this section for the purpose of developing and estab-
lishing systemic mechanisms to improve the prevention and 
treatment of Sickle Cell Disease’’ and inserting ‘‘shall continue 
efforts, including by awarding grants, to develop or establish 
mechanisms to improve the treatment of sickle cell disease, 
and to improve the prevention and treatment of complications 
of sickle cell disease, in populations with a high proportion 
of individuals with sickle cell disease’’; 
Definition. 
Evaluation. 
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132 STAT. 4470 
PUBLIC LAW 115–327—DEC. 18, 2018 
LEGISLATIVE HISTORY—S. 2465 (H.R. 2410): 
HOUSE REPORTS: No. 115–354 (Comm. on Energy and Commerce) accompanying 
H.R. 2410. 
CONGRESSIONAL RECORD, Vol. 164 (2018): 
Oct. 11, considered and passed Senate. 
Dec. 11, considered and passed House. 
(3) in paragraph (1)(B)— 
(A) by striking clause (ii) (relating to priority); and 
(B) by striking ‘‘GRANT
AWARD
REQUIREMENTS’’ and 
all that follows through ‘‘The Administrator shall’’ and 
inserting ‘‘GEOGRAPHIC
DIVERSITY.—The Administrator 
shall’’; 
(4) in paragraph (2), by adding the following new subpara-
graph at the end: 
‘‘(E) To provide or coordinate 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 inserting ‘‘$4,455,000 
for each of fiscal years 2019 through 2023’’. 
(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.); 
(2) redesignated as subsection (b); and 
(3) inserted at the end of section 1106 of such Act, as 
added by section 2 of this Act. 
SEC. 4. SENSE OF THE SENATE. 
It is the Sense of the Senate that further research should 
be undertaken to expand the understanding of the causes of, and 
to find cures for, heritable blood disorders, including sickle cell 
disease. 
Approved December 18, 2018. 
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