[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 2465 Reported in Senate (RS)]
<DOC>
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.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
<DELETED>SECTION 1. SHORT TITLE; TABLE OF CONTENTS.</DELETED>
<DELETED> (a) Short Title.--This Act may be cited as the ``Sickle
Cell Disease Research, Surveillance, Prevention, and Treatment Act of
2018''.</DELETED>
<DELETED> (b) Table of Contents.--The table of contents of this Act
is as follows:</DELETED>
<DELETED>Sec. 1. Short title; table of contents.
<DELETED>Sec. 2. Sense of the Senate.
<DELETED>Sec. 3. Sickle cell disease surveillance.
<DELETED>Sec. 4. Sickle cell disease prevention and treatment.
<DELETED>Sec. 5. Collaboration with community-based entities.
<DELETED>SEC. 2. SENSE OF THE SENATE.</DELETED>
<DELETED> It is the Sense of the Senate that further research should
be undertaken to expand the understanding of the cause of, and to find
a cure for, sickle cell disease.</DELETED>
<DELETED>SEC. 3. SICKLE CELL DISEASE SURVEILLANCE.</DELETED>
<DELETED> 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:</DELETED>
<DELETED>``SEC. 399V-7. NATIONAL SICKLE CELL DISEASE SURVEILLANCE,
PREVENTION, AND TREATMENT PROGRAM.</DELETED>
<DELETED> ``(a) Surveillance.--</DELETED>
<DELETED> ``(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 eligible entities
for the following purposes:</DELETED>
<DELETED> ``(A) To conduct surveillance and maintain
data on the prevalence and distribution of sickle cell
disease and its associated health outcomes,
complications, and treatments.</DELETED>
<DELETED> ``(B) To conduct public health initiatives
with respect to sickle cell disease, including one or
more of the following:</DELETED>
<DELETED> ``(i) Increasing efforts to
improve access to high-quality sickle cell
disease-related health care, including the use
of treatments approved under section 505 of the
Federal Food, Drug, and Cosmetic Act or
licensed under section 351 of this
Act.</DELETED>
<DELETED> ``(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 management
of sickle cell disease complications.</DELETED>
<DELETED> ``(iii) Providing support to
community-based organizations and State and
local health departments in conducting sickle
cell disease education and training activities
for patients, communities, and health care
providers.</DELETED>
<DELETED> ``(iv) Supporting and training
State health departments and regional
laboratories in comprehensive testing to
identify specific forms of sickle cell disease
in people of all ages.</DELETED>
<DELETED> ``(C) To identify and evaluate promising
strategies for prevention and treatment of sickle cell
disease complications, including through one or more of
the following:</DELETED>
<DELETED> ``(i) Improving estimates of the
national incidence and prevalence of sickle
cell disease, including estimates about the
specific types of sickle cell
disease.</DELETED>
<DELETED> ``(ii) Identifying health
disparities related to sickle cell
disease.</DELETED>
<DELETED> ``(iii) Assessing the utilization
of therapies and strategies to prevent
complications related to sickle cell
disease.</DELETED>
<DELETED> ``(iv) Evaluating the impact of
genetic, environmental, behavioral, and other
risk factors that may affect sickle cell
disease health outcomes.</DELETED>
<DELETED> ``(2) Population included.--The Secretary shall,
to the extent practicable, award grants under this subsection
to eligible entities across the United States so as to include
data on the majority of the United States population with
sickle cell disease.</DELETED>
<DELETED> ``(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.</DELETED>
<DELETED> ``(4) 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, a State health or public health department, an
institution of higher education, or a nonprofit
entity.''.</DELETED>
<DELETED>SEC. 4. SICKLE CELL DISEASE PREVENTION AND
TREATMENT.</DELETED>
<DELETED> (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--</DELETED>
<DELETED> (1) by striking ``Sickle Cell Disease'' each place
it appears and inserting ``sickle cell disease'';</DELETED>
<DELETED> (2) in paragraph (1)(A), by striking ``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
``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 systemic mechanisms to
improve the prevention and treatment of sickle cell disease in
populations with a high density of sickle cell disease
patients'';</DELETED>
<DELETED> (3) in paragraph (1)(B)--</DELETED>
<DELETED> (A) by striking clause (ii) (relating to
priority); and</DELETED>
<DELETED> (B) by striking ``Grant award
requirements'' and all that follows through ``The
Administrator shall'' and inserting ``Geographic
diversity.--The Administrator shall'';</DELETED>
<DELETED> (4) in paragraph (2), by adding the following new
subparagraph at the end:</DELETED>
<DELETED> ``(E) To expand, coordinate, and implement
transition services for adolescents with sickle cell
disease making the transition to adult health care.'';
and</DELETED>
<DELETED> (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 2018 through
2022''.</DELETED>
<DELETED> (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--</DELETED>
<DELETED> (1) transferred to the Public Health Service Act
(42 U.S.C. 201 et seq.);</DELETED>
<DELETED> (2) redesignated as subsection (b); and</DELETED>
<DELETED> (3) inserted at the end of section 399V-7 of such
Act, as added by section 2 of this Act.</DELETED>
<DELETED>SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTITIES.</DELETED>
<DELETED> Section 399V-7 of the Public Health Service Act, as
amended by section 3, is further amended by adding at the end the
following:</DELETED>
<DELETED> ``(c) Collaboration With Community-Based Entities.--To be
eligible to receive a grant or other assistance under subsection (a) or
(b), an eligible entity must have in effect a collaborative agreement
with a community-based organization with five or more years of
experience in providing services to sickle cell disease
patients.''.</DELETED>
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.
Calendar No. 553
115th CONGRESS
2d Session
S. 2465
_______________________________________________________________________
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.
_______________________________________________________________________
August 15, 2018
Reported with an amendment