IB
Union Calendar No. 570
106TH CONGRESS
2D SESSION
H. R. 762
[Report No. 106–950]
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
OCTOBER 10, 2000
Additional sponsors: Mrs. MALONEY of New York, Mr. GEJDENSON, Mr.
FROST, Mr. ROMERO-BARCELO´, Mrs. CLAYTON, Mr. HALL of Ohio, Mr.
MCGOVERN, Mr. ACKERMAN, Mr. UPTON, Mr. STARK, Mr. GUTIERREZ,
Mrs. MORELLA, Mr. MORAN of Virginia, Mr. DELAHUNT, Mr. SANDLIN,
Mr. DIXON, Mr. FORD, Ms. MILLENDER-MCDONALD, Mr. WAXMAN, Mr.
TOWNS, Ms. SLAUGHTER, Mr. FRANK of Massachusetts, Mr. DAVIS of Il-
linois, Mr. WEXLER, Mr. RANGEL, Mr. FOLEY, Mr. WYNN, Mr. WALSH,
Mr. PAYNE, Ms. LOFGREN, Mr. LEWIS of Georgia, Mr. LATOURETTE,
Mr. MCHUGH, Mr. BENTSEN, Mr. HAYWORTH, Ms. KAPTUR, Mr.
BISHOP, Mrs. LOWEY, Mr. NADLER, Mr. COYNE, Mrs. JONES of Ohio,
Mr. RAHALL, Ms. WATERS, Mr. DIAZ-BALART, Mrs. CHRISTENSEN, Ms.
RIVERS, Ms. BROWN of Florida, Ms. ROYBAL-ALARD, Mr. LIPINSKI, Mr.
MENENDEZ, Mr. HASTINGS of Florida, Mr. NEAL of Massachusetts, Mr.
FALEOMAVAEGA, Mr. HILLIARD, Mr. RUSH, Mr. BOEHLERT, Mr. WATT
of North Carolina, Mrs. KELLY, Mr. PRICE of North Carolina, Mr.
DEUTSCH, Mr. ETHERIDGE, Mr. HINCHEY, Mr. JEFFERSON, Mr.
GRAHAM, Mr. MOLLOHAN, Mr. MATSUI, Mr. THOMPSON of Mississippi,
Mr. BRADY
of Pennsylvania, Mr. WEINER, Ms. MCKINNEY, Mr.
CUMINGS, Mr. BORSKI, Mr. ENGLISH, Mr. VENTO, Mr. ANDREWS, Mr.
LANTOS, Mr. OBERSTAR, Ms. WOOLSEY, Mr. JACKSON of Illinois, Mr.
ROTHMAN, Mrs. CAPPS, Mr. CONYERS, Mr. MARTINEZ, Mr. MOORE, Mr.
KUCINICH, Mr. HOUGHTON, Mr. COSTELLO, Mr. LUCAS of Oklahoma,
Mr. GOODLING, Mr. DAVIS of Virginia, Mr. CAPUANO, Mr. OLVER, Mr.
STUPAK, Ms. EDDIE BERNICE JOHNSON of Texas, Mr. KING, Mr. INS-
LEE, Mr. KILDEE, Mr. CLEMENT, Mr. LARSON, Mr. BOUCHER, Mr.
HOEFFEL, Mr. MASCARA, Mr. PALLONE, Mr. WOLF, Ms. PRYCE of Ohio,
Ms. VELA´ZQUEZ, Mr. GONZALEZ, Mr. LAMPSON, Ms. NORTON, Mr.
BERRY, Mrs. JOHNSON of Connecticut, Mr. WU, Mr. SCOTT, Mr. ENGEL,
Mr. KENNEDY of Rhode Island, Ms. CARSON, Mr. MCNULTY, Mr.
LAHOOD, Mrs. MCCARTHY of New York, Mr. CLYBURN, Mr. SHAW, Ms.
LEE, Mr. LEWIS of California, Mr. OWENS, Ms. SCHAKOWSKY, Mr.
FATTAH, Mr. FARR of California, Mr. SMITH of New Jersey, Mr.
SAXTON, Mr. REYES, Mr. HOLT, Mr. PASCRELL, Mr. WISE, Mr. ALLEN,
Mr. BARRETT of Wisconsin, Mr. GILCHREST, Mr. OSE, Ms. STABENOW,
Mr. MCDERMOTT, Mr. SHERWOOD, Mr. MCCARTHY of Missouri, Mr. LA-
FALCE, Mr. MALONEY of Connecticut, Mr. SPRATT, Mr. GILMAN, Mr.
NEY, Mr. DOYLE, Mr. SKELTON, Mr. MURTHA, Mr. BILBRAY, Ms. DAN-
NER, Mr. BROWN of Ohio, Mr. EVANS, Mr. SANDERS, Mr. BERMAN, Mr.
BOSWELL, Mr. ROEMER, Mr. ISAKSON, Mr. RODRIGUEZ, Mr. GARY MIL-
LER of California, Mr. KLINK, Mrs. TAUSCHER, Mrs. EMERSON, Mr.
MOAKLEY, Mr. CROWLEY, Mrs. NAPOLITANO, Mr. BARTLETT of Mary-
land, Mr. DREIER, Mr. DICKS, Mr. PHELPS, Ms. SANCHEZ, Mr. MCIN-
TYRE, Mr. SHERMAN, Mr. ORTIZ, Mr. YOUNG
of Alaska, Mr.
ABERCROBMIE, Mr. SWEENEY, Mrs. CHENOWETH-HAGE, Mr. BARCIA,
Ms. BERKLEY, Mr. BURTON of Indiana, Mr. GEPHARDT, Mr. MEEHAN,
Ms. BALDWIN, Mr. SCHAFFER, Mr. FORBES, Mr. BLUNT, Mr.
MCINTOSH, Mr. PETERSON of Minnesota, Mr. SPENCE, Mr. KLECZKA,
Ms. ESHOO, Mr. HINOJOSA, Mrs. ROUKEMA, Mr. JOHN, Mr. THOMPSON
of California, Mr. DICKEY, Mr. GEORGE MILLER of California, Mr. KAN-
JORSKI, Mr. BAIRD, Mr. EWING, Mr. HALL of Texas, Mr. YOUNG of
Florida, Mr. DEAL of Georgia, Mr. CALVERT, Mr. HORN, Mr. TURNER,
Mr. CRAMER, Mr. SISISKY, Mr. JENKINS, Mr. DUNCAN, Mr. COOKSEY,
Mr. SMITH of Washington, Mr. VISCLOSKY, Mrs. FOWLER, Mr. STRICK-
LAND, Mr. GORDON, Mr. REYNOLDS, Mr. FRANKS of New Jersey, Ms.
HOOLEY of Oregon, Mr. GALLEGLY, Mr. TOOMEY, and Mr. LOBIONDO
OCTOBER 10, 2000
Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed in italic]
[For text of introduced bill, see copy of bill as introduced on February 12, 1999]
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 2000’’.
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 devel-
ops 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 ef-
fective, but may lead to damaging side effects;
(9) many victims of the disease suffer debili-
tating pain and fatigue, making it difficult to main-
tain 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 per-
cent 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 In-
stitute shall expand and intensify research and related ac-
tivities 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 sub-
section shall include conducting and supporting the fol-
lowing:
‘‘(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 dif-
ferences among the sexes and among racial and ethnic
groups with respect to the disease.
‘‘(4) The development of improved diagnostic
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 such sums as may be necessary for each
of the fiscal years 2001 through 2003.’’.
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
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, home-
maker services, day or respite care, and providing
counseling on financial assistance and insurance) for
individuals with lupus and support services for their
families.
(d) INTEGRATION WITH OTHER PROGRAMS.—To the
extent practicable and appropriate, the Secretary shall inte-
grate the program under this title with other grant pro-
grams carried out by the Secretary, including the program
under section 330 of the Public Health Service Act.
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 treat-
ment of lupus.
(3) The applicant will abide by any limitations
deemed appropriate by the Secretary on any charges
to individuals receiving services pursuant to the
grant. As deemed appropriate by the Secretary, such
limitations on charges may vary based on the finan-
cial circumstances of the individual receiving services.
(4) The grant will not be expended to make pay-
ment for services authorized under section 201(a) to
the extent that payment has been made, or can rea-
sonably be expected to be made, with respect 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.
(5) The applicant will, at each site at which the
applicant provides services under section 201(a), post
a conspicuous notice informing individuals who re-
ceive the services of any Federal policies that apply
to the applicant with respect to the imposition of
charges on such individuals.
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 Omni-
bus 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 such sums as may be nec-
essary for each of the fiscal years 2001 through 2003.
Union Calendar No. 570
106TH CONGRESS
2D SESSION
H. R. 762
[Report No. 106–950]
A BILL
To amend the Public Health Service Act to provide
for research and services with respect to lupus.
OCTOBER 10, 2000
Reported with an amendment, committed to the Com-
mittee of the Whole House on the State of the Union,
and ordered to be printed