Title: Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018
Policy area: Health

Summary:
Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018
This bill amends the Public Health Service Act to authorize the Department of Health and Human Services to award grants to government, educational, and nonprofit entities for the purpose of supporting data collection and public health activities regarding sickle cell disease.
Additionally, the bill reauthorizes through FY2022 and revises the sickle cell disease grant program for federally-qualified health centers, nonprofit hospitals or clinics, and university health centers.


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

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115th CONGRESS
  2d Session
                                S. 2465

  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 SENATE OF THE UNITED STATES

                           February 28, 2018

 Mr. Scott (for himself and Mr. Booker) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 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 
2018''.
    (b) Table of Contents.--The table of contents of this Act is as 
follows:

Sec. 1. Short title; table of contents.
Sec. 2. Sense of the Senate.
Sec. 3. Sickle cell disease surveillance.
Sec. 4. Sickle cell disease prevention and treatment.
Sec. 5. Collaboration with community-based entities.

SEC. 2. SENSE OF THE SENATE.

    It is the Sense of the Senate that further research should be 
undertaken to expand the understanding of the cause of, and to find a 
cure for, sickle cell disease.

SEC. 3. SICKLE CELL DISEASE SURVEILLANCE.

    Part P of title III of the Public Health Service Act is amended by 
inserting after section 399V-6 (42 U.S.C. 280g-17) the following:

``SEC. 399V-7. NATIONAL SICKLE CELL DISEASE SURVEILLANCE, PREVENTION, 
              AND TREATMENT PROGRAM.

    ``(a) Surveillance.--
            ``(1) Grants.--The Secretary may, for each fiscal year for 
        which appropriations are available to carry out this 
        subsection, make grants to not more than 20 eligible entities 
        for the following purposes:
                    ``(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 one or more 
                of the following:
                            ``(i) Increasing efforts to improve access 
                        to high-quality sickle cell disease-related 
                        health care, including the use of treatments 
                        approved under section 505 of the Federal Food, 
                        Drug, and Cosmetic Act or licensed under 
                        section 351 of this Act.
                            ``(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.
                            ``(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.
                    ``(C) To identify and evaluate promising strategies 
                for prevention and treatment of sickle cell disease 
                complications, including through one or more of the 
                following:
                            ``(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.
                            ``(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 
        eligible entities 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, 
        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) 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, a State health or public health department, an 
        institution of higher education, or a nonprofit entity.''.

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) 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 2018 through 2022''.
    (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 399V-7 of such Act, as 
        added by section 2 of this Act.

SEC. 5. COLLABORATION WITH COMMUNITY-BASED ENTITIES.

    Section 399V-7 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) or (b), an 
eligible entity must have in effect a collaborative agreement with a 
community-based organization with five or more years of experience in 
providing services to sickle cell disease patients.''.
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