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[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.
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