[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 2465 Engrossed in Senate (ES)]

<DOC>
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
115th CONGRESS
  2d Session
                                S. 2465

_______________________________________________________________________

                                 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.

            Passed the Senate October 11, 2018.

            Attest:

                                                             Secretary.
115th CONGRESS

  2d Session

                                S. 2465

_______________________________________________________________________

                                 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.