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SECTION 1. SHORT TITLE.

This Act may be cited as the ''Lupus Research and Care Amendments
of 1997''.

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, which is less than /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 section:

''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 $50,000,000
for fiscal year 1998, and such sums as may be necessary for each of the
fiscal years 1999 and 2000.''.

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 assure the continuity of health
insurance coverage for individuals with lupus.

SEC. 202. CERTAIN 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.

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 $50,000,000 for fiscal year 1998, and such sums as may
be necessary for each of the fiscal years 1999 through 2002.
TABLE OF CONTENTS:
Title I: Research on Lupus
Title II: Delivery of Services Regarding Lupus
Lupus Research and Care Amendments of 1997 -
Title I: Research on Lupus
- Amends the Public Health Service Act to require the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases to expand and intensify research and related activities of the Institute with respect to lupus.
Requires the Director to: (1) coordinate such activities with similar activities conducted by other national research institutes and agencies of the National Institutes of Health; and (2) conduct or support research to expand the understanding of the causes of, and to find a cure for, lupus, including research to determine the reasons underlying the elevated prevalence of the disease among African-American and other women.
Authorizes appropriations.
Title II: Delivery of Services Regarding Lupus
- Mandates grants 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. Regulates fees imposed by grantees on service recipients. Authorizes technical assistance. Authorizes appropriations.