[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 2465 Enrolled Bill (ENR)]
S.2465
One Hundred Fifteenth Congress
of the
United States of America
AT THE SECOND SESSION
Begun and held at the City of Washington on Wednesday,
the third day of January, two thousand and eighteen
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.
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,
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) 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;
``(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) 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) 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'';
(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.
Speaker of the House of Representatives.
Vice President of the United States and
President of the Senate.