[115th Congress Public Law 327]
[From the U.S. Government Publishing Office]
[[Page 4467]]
SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD DISORDERS RESEARCH,
SURVEILLANCE, PREVENTION, AND TREATMENT ACT OF 2018
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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 research, surveillance, prevention, and
treatment. <<NOTE: Dec. 18, 2018 - [S. 2465]>>
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled, <<NOTE: Sickle Cell
Disease and Other Heritable Blood Disorders Research, Surveillance,
Prevention, and Treatment Act of 2018. 42 USC 201 note.>>
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. <<NOTE: 42 USC 300b-5.>> 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) <<NOTE: Assessment.>> assessing the
utilization of therapies and strategies to prevent
complications; and
``(iv) <<NOTE: Evaluation.>> evaluating the
effects of genetic, environmental, 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) <<NOTE: Strategies.>> developing
strategies to improve health outcomes and access
to quality health care for the screening for, and
treatment and management of, such diseases and
conditions, including through public-private
partnerships;
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``(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 concerning 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 individuals of all ages; and
``(iv) <<NOTE: Evaluation.>> the
identification and evaluation of best practices
for treatment of such diseases and conditions, and
prevention and management of their related
complications.
``(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) <<NOTE: Definition.>> 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 experience 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
demonstration program by making grants to up to 40 eligible
entities for each fiscal year in which the program is conducted
under this section for the purpose of developing and
establishing 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'';
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(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
subparagraph 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.
LEGISLATIVE HISTORY--S. 2465 (H.R. 2410):
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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.
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