```

[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5124 Introduced in House (IH)]

113th CONGRESS
  2d Session
                                H. R. 5124

  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

                             July 16, 2014

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 
2014''.
    (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. 6. Authorization of appropriations.

SEC. 2. SICKLE CELL DISEASE RESEARCH.

    Part P of title III of the Public Health Service Act is amended by 
inserting after section 399V-5 (42 U.S.C. 280g-16) the following:

``SEC. 399V-6. 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-6 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 shall, 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 proven treatments such as Hydroxyurea;
                            ``(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) by striking paragraph (6).
    (b) Technical Changes.--
            (1) Subsection (c) of section 712 of the American Jobs 
        Creation Act of 2004 (Public Law 108-357; 42 U.S.C. 300b-1 
        note) is--
                    (A) transferred to the Public Health Service Act 
                (42 U.S.C. 201 et seq.); and
                    (B) inserted at the end of section 399V-6 of such 
                Act, as added and amended by sections 2 and 3 of this 
                Act.
            (2) The table of contents in section 1(c) of the American 
        Jobs Creation Act of 2004 (Public Law 108-357) is amended by 
        striking the item relating to section 712.

SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTITIES.

    Section 399V-6 of the Public Health Service Act, as amended by 
section 3, is further amended by adding at the end the following:
    ``(c) Collaboration With Community-Based Entities.--To be eligible 
to receive a grant or other assistance under subsection (a), (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.''.

SEC. 6. AUTHORIZATION OF APPROPRIATIONS.

    Section 399V-6 of the Public Health Service Act, as amended by 
section 5, is further amended by adding at the end the following:
    ``(d) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $20,000,000 for each of fiscal 
years 2015 through 2020.''.
                                 <all>
```