    [United States Statutes at Large, Volume 132, 115th Congress, 2nd Session]
    [From the U.S. Government Publishing Office, www.gpo.gov]

    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. <>

    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;

    [[Page 4469]]

    ``(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'';

    [[Page 4470]]

    (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):
    ---------------------------------------------------------------------------

    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.