[115th Congress Public Law 327]
[From the U.S. Government Publishing Office]



[[Page 4467]]

   SICKLE CELL DISEASE AND OTHER HERITABLE BLOOD DISORDERS RESEARCH, 
           SURVEILLANCE, PREVENTION, AND TREATMENT ACT OF 2018

[[Page 132 STAT. 4468]]

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. <<NOTE: Dec. 18, 2018 -  [S. 2465]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Sickle Cell 
Disease and Other Heritable Blood Disorders Research, Surveillance, 
Prevention, and Treatment Act of 2018. 42 USC 201 note.>> 
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. <<NOTE: 42 USC 300b-5.>>  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) <<NOTE: Assessment.>>  assessing the 
                      utilization of therapies and strategies to prevent 
                      complications; and
                          ``(iv) <<NOTE: Evaluation.>>  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) <<NOTE: Strategies.>>  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 132 STAT. 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) <<NOTE: Evaluation.>>  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) <<NOTE: Definition.>>  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'';

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            (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.

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