I
106TH CONGRESS
1ST SESSION
H. R. 762
To amend the Public Health Service Act to provide for research and services
with respect to lupus.
IN THE HOUSE OF REPRESENTATIVES
FEBRUARY 12, 1999
Mrs. MEEK of Florida (for herself, Ms. ROS-LEHTINEN, Ms. PELOSI, Mr.
COOK, Mr. CLAY, Mrs. THURMAN, Ms. JACKSON-LEE of Texas, Mr.
BONIOR, Mr. MEEKS of New York, Mr. GOODE, Mr. PASTOR, Mr.
DEFAZIO, Mrs. MINK of Hawaii, Mr. HOLDEN, Mr. QUINN, Mr. SHOWS,
Ms. KILPATRICK, Mr. GREEN of Texas, Mr. FILNER, Mr. BLAGOJEVICH,
Mr. SERRANO, Mr. MORAN of Kansas, and Mr. BALDACCI) introduced the
following bill; which was referred to the Committee on Commerce
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 Representa-
tives 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-in-
duced lupus caused by certain medications;
(4) lupus can be fatal if not detected and treat-
ed early;
(5) the disease can simultaneously affect var-
ious areas of the body, such as the skin, joints, kid-
neys, and brain, and can be difficult to diagnose be-
cause 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 de-
velops the disease;
(7) it has been estimated that between
1,400,000 and 2,000,000 Americans have been diag-
nosed 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 debilitat-
ing 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 1⁄2 of 1
percent of the budget for such Institutes.
TITLE I—RESEARCH ON LUPUS
SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVI-
TIES.
Subpart 4 of part C of title IV of the Public Health
Service Act (42 U.S.C. 285d et seq.) is amended by insert-
ing 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 sub-
section (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 under-
lying the elevated prevalence of lupus in women, in-
cluding African-American women.
‘‘(2) Basic research concerning the etiology and
causes of the disease.
‘‘(3) Epidemiological studies to address the fre-
quency 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 biologi-
cal 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, oper-
ation, and coordination of effective and cost-efficient sys-
tems for the delivery of essential services to individuals
with lupus and their families.
(b) RECIPIENTS OF GRANTS.—A grant under sub-
section (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, ambula-
tory 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 Sec-
retary may authorize for projects under subsection (a) in-
clude the following:
(1) Delivering or enhancing outpatient, ambula-
tory, 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 man-
agement services that prevent unnecessary hos-
pitalization or that expedite discharge, as medically
appropriate, from inpatient facilities of individuals
with lupus.
(3) Improving the quality, availability, and or-
ganization of health care and support services (in-
cluding transportation services, attendant care,
homemaker services, and day or respite care) for in-
dividuals with lupus and their families.
(4) Providing assistance to assure the continu-
ity 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 in-
come less than or equal to 100 percent of the
official poverty line, the applicant will not im-
pose a charge.
(B) In the case of an individual with an in-
come 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 per-
cent of the annual gross income of the individ-
ual involved.
(C) In the case of an individual with an in-
come 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 per-
cent of the annual gross income of the individ-
ual.
(D) In the case of an individual with an in-
come greater than 300 percent of the official
poverty line, the applicant will not impose
charges for any calendar year exceeding 10 per-
cent of the annual gross income of the individ-
ual.
(4) With respect to compliance with the agree-
ment made under paragraph (3), a grantee under
section 201(a) may, in the case of individuals sub-
ject to a charge for purposes of such paragraph—
(A) assess the amount of the charge in the
discretion of the grantee, including imposing
only a nominal charge for the provision of serv-
ices; and
(B) take into consideration the medical ex-
penses of individuals in assessing the amount of
the charge, subject to such provisions.
(5) The limitations established in paragraph (3)
regarding the imposition of charges for services ap-
plies 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 re-
spect to such services—
(A) under any State compensation pro-
gram, under an insurance policy, or under any
Federal or State health benefits program; or
(B) by an entity that provides health serv-
ices 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 as-
sist 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 Sec-
retary in accordance with section 673(2) of the Om-
nibus 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 $75,000,000 for fiscal year
2000, and such sums as may be necessary for each of the
fiscal years 2001 through 2004.
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