[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2410 Introduced in House (IH)]
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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 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; 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:
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 TREATMENT 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;
``(B) to conduct public health initiatives with
respect to sickle cell disease, including--
``(i) increasing efforts to improve access
to, and receipt of, 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;
``(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;
``(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; and
``(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; and
``(C) to identify and evaluate promising strategies
for prevention and treatment of sickle cell disease
complications, including through--
``(i) improving estimates of the national
incidence and prevalence of sickle cell
disease, including estimates about the specific
types of sickle cell disease;
``(ii) identifying health disparities
related to sickle cell disease;
``(iii) assessing the utilization of
therapies and strategies to prevent
complications 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 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 Secretary 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 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 the
Marshall Islands, and the Republic of Palau.''.
SEC. 4. 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 ``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'';
(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 expand, coordinate, and implement
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 inserting ``$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 ENTITIES.
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 Entities.--To be eligible
to receive a grant or other assistance 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 providing
services to sickle cell disease patients.''.
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