[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 1163 Introduced in Senate (IS)]







106th CONGRESS
  1st Session
                                S. 1163

  To amend the Public Health Service Act to provide for research and 
                    services with respect to lupus.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              May 27, 1999

Mr. Bennett (for himself, Mrs. Murray, Mr. Schumer, and Mr. Torricelli) 
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 provide for research and 
                    services with respect to lupus.

    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 ``Lupus Research and Care Amendments 
of 1999''.

SEC. 2. FINDINGS.

    The Congress finds that--
            (1) lupus is a serious, complex, inflammatory, autoimmune 
        disease of particular concern to women;
            (2) lupus affects women 9 times more often than men;
            (3) there are 3 main types of lupus: systemic lupus, a 
        serious form of the disease that affects many parts of the 
        body; discoid lupus, a form of the disease that affects mainly 
        the skin; and drug-induced lupus caused by certain medications;
            (4) lupus can be fatal if not detected and treated early;
            (5) the disease can simultaneously affect various areas of 
        the body, such as the skin, joints, kidneys, and brain, and can 
        be difficult to diagnose because the symptoms of lupus are 
        similar to those of many other diseases;
            (6) lupus disproportionately affects African-American 
        women, as the prevalence of the disease among such women is 3 
        times the prevalence among white women, and an estimated 1 in 
        250 African-American women between the ages of 15 and 65 
        develops the disease;
            (7) it has been estimated that between 1,400,000 and 
        2,000,000 Americans have been diagnosed with the disease, and 
        that many more have undiagnosed cases;
            (8) current treatments for the disease can be effective, 
        but may lead to damaging side effects;
            (9) many victims of the disease suffer debilitating pain 
        and fatigue, making it difficult to maintain employment and 
        lead normal lives; and
            (10) in fiscal year 1996, the amount allocated by the 
        National Institutes of Health for research on lupus was 
        $33,000,000, less than \1/2\ of 1 percent of the budget for 
        such Institutes.

                       TITLE I--RESEARCH ON LUPUS

SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVITIES.

    Subpart 4 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285d et seq.) is amended by inserting after section 441 the 
following:

                                ``lupus

    ``Sec. 441A. (a) In General.--The Director of the Institute shall 
expand and intensify research and related activities of the Institute 
with respect to lupus.
    ``(b) Coordination With Other Institutes.--The Director of the 
Institute shall coordinate the activities of the Director under 
subsection (a) with similar activities conducted by the other national 
research institutes and agencies of the National Institutes of Health 
to the extent that such Institutes and agencies have responsibilities 
that are related to lupus.
    ``(c) Programs for Lupus.--In carrying out subsection (a), the 
Director of the Institute shall conduct or support research to expand 
the understanding of the causes of, and to find a cure for, lupus. 
Activities under such subsection shall include conducting and 
supporting the following:
            ``(1) Research to determine the reasons underlying the 
        elevated prevalence of lupus in women, including African-
        American women.
            ``(2) Basic research concerning the etiology and causes of 
        the disease.
            ``(3) Epidemiological studies to address the frequency and 
        natural history of the disease and the differences among the 
        sexes and among racial and ethnic groups with respect to the 
        disease.
            ``(4) The development of improved screening techniques.
            ``(5) Clinical research for the development and evaluation 
        of new treatments, including new biological agents.
            ``(6) Information and education programs for health care 
        professionals and the public.
    ``(d) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $75,000,000 
for fiscal year 2000, and such sums as may be necessary for each of the 
fiscal years 2001 and 2002.''.

             TITLE II--DELIVERY OF SERVICES REGARDING LUPUS

SEC. 201. ESTABLISHMENT OF PROGRAM OF GRANTS.

    (a) In General.--The Secretary of Health and Human Services shall 
in accordance with this title make grants to provide for projects for 
the establishment, operation, and coordination of effective and cost-
efficient systems for the delivery of essential services to individuals 
with lupus and their families.
    (b) Recipients of Grants.--A grant under subsection (a) may be made 
to an entity only if the entity is a public or nonprofit private 
entity, which may include a State or local government; a public or 
nonprofit private hospital, community-based organization, hospice, 
ambulatory care facility, community health center, migrant health 
center, or homeless health center, or other appropriate public or 
nonprofit private entity.
    (c) Certain Activities.--Activities that the Secretary may 
authorize for projects under subsection (a) include the following:
            (1) Delivering or enhancing outpatient, ambulatory, and 
        home-based health and support services, including case 
        management and comprehensive treatment services, for 
individuals with lupus; and delivering or enhancing support services 
for their families.
            (2) Delivering or enhancing inpatient care management 
        services that prevent unnecessary hospitalization or that 
        expedite discharge, as medically appropriate, from inpatient 
        facilities of individuals with lupus.
            (3) Improving the quality, availability, and organization 
        of health care and support services (including transportation 
        services, attendant care, homemaker services, and day or 
        respite care) for individuals with lupus and their families.
            (4) Providing assistance to ensure the continuity of health 
        insurance coverage for individuals with lupus.

SEC. 202. GRANT REQUIREMENTS.

    A grant may be made under section 201 only if the applicant 
involved makes the following agreements:
            (1) Not more than 5 percent of the grant will be used for 
        administration, accounting, reporting, and program oversight 
        functions.
            (2) The grant will be used to supplement and not supplant 
        funds from other sources related to the treatment of lupus.
            (3) With respect to the imposition of charges for the 
        provision of services under the grant:
                    (A) In the case of an individual with an income 
                less than or equal to 100 percent of the official 
                poverty line, the applicant will not impose a charge.
                    (B) In the case of an individual with an income 
                greater than 100 percent of the official poverty line 
                and not exceeding 200 percent of such poverty line, the 
                applicant will not impose charges for any calendar year 
                exceeding 5 percent of the annual gross income of the 
                individual involved.
                    (C) In the case of an individual with an income 
                greater than 200 percent of the official poverty line 
                and not exceeding 300 percent of such poverty line, the 
                applicant will not impose charges for any calendar year 
                exceeding 7 percent of the annual gross income of the 
                individual.
                    (D) In the case of an individual with an income 
                greater than 300 percent of the official poverty line, 
                the applicant will not impose charges for any calendar 
                year exceeding 10 percent of the annual gross income of 
                the individual.
            (4) With respect to compliance with the agreement made 
        under paragraph (3), the applicant may, in the case of 
        individuals subject to a charge for purposes of such 
        paragraph--
                    (A) assess the amount of the charge in the 
                discretion of the applicant, including imposing only a 
                nominal charge for the provision of services; and
                    (B) take into consideration the medical expenses of 
                individuals in assessing the amount of the charge, 
                subject to such paragraph.
            (5) The limitations established under paragraph (3) 
        regarding the imposition of charges for services applies to the 
        annual aggregate of charges imposed for such services, without 
        regard to whether they are characterized as enrollment fees, 
        premiums, deductibles, cost sharing, copayments, coinsurance, 
        or other charges.
            (6) The grant will not be expended to make payment for 
        services authorized under section 201(a) to the extent that 
        payment has been made, or can reasonably be expected to be 
        made, with respect to such services--
                    (A) under any State compensation program, under an 
                insurance policy, or under any Federal or State health 
                benefits program; or
                    (B) by an entity that provides health services on a 
                prepaid basis.
            (7) The applicant will, at each site at which the applicant 
        provides services under section 201(a), post a conspicuous 
        notice informing individuals who receive the services of the 
        policies that apply to the applicant pursuant to paragraphs (3) 
        through (6).

SEC. 203. TECHNICAL ASSISTANCE.

    The Secretary may provide technical assistance to assist entities 
in complying with the requirements of this title in order to make such 
entities eligible to receive grants under section 201.

SEC. 204. DEFINITIONS.

    For purposes of this title:
            (1) The term ``official poverty line'' means the poverty 
        line established by the Director of the Office of Management 
        and Budget and revised by the Secretary in accordance with 
        section 673(2) of the Omnibus Budget Reconciliation Act of 
        1981.
            (2) The term ``Secretary'' means the Secretary of Health 
        and Human Services.

SEC. 205. AUTHORIZATION OF APPROPRIATIONS.

    For the purpose of carrying out this title, there are authorized to 
be appropriated $40,000,000 for fiscal year 2000, and such sums as may 
be necessary for each of the fiscal years 2001 through 2004.
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