Home > 106th Congressional Bills > H.R. 763 (ih) To make chapter 12 of title 11, United States Code, permanent, and for other purposes. [Introduced in House] ...H.R. 763 (ih) To make chapter 12 of title 11, United States Code, permanent, and for other purposes. [Introduced in House] ...
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.
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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 Illinois, 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. Inslee, Mr. Kildee, Mr. Clement, Mr. Larson, Mr. Boucher, Mr.
Hoeffel, Mr. Mascara, Mr. Pallone, Mr. Wolf, Ms. Pryce of Ohio, Ms.
Velazquez, 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.
LaFalce, Mr. Maloney of Connecticut, Mr. Spratt, Mr. Gilman, Mr. Ney,
Mr. Doyle, Mr. Skelton, Mr. Murtha, Mr. Bilbray, Ms. Danner, Mr. Brown
of Ohio, Mr. Evans, Mr. Sanders, Mr. Berman, Mr. Boswell, Mr. Roemer,
Mr. Isakson, Mr. Rodriguez, Mr. Gary Miller of California, Mr. Klink,
Mrs. Tauscher, Mrs. Emerson, Mr. Moakley, Mr. Crowley, Mrs. Napolitano,
Mr. Bartlett of Maryland, Mr. Dreier, Mr. Dicks, Mr. Phelps, Ms.
Sanchez, Mr. McIntyre, 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. Kanjorski, 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.
Strickland, 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 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 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
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 \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 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 diagnostic 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 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 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.--To the extent practicable and appropriate,
the Secretary shall ensure that projects under subsection (a) provide
services for the diagnosis and disease management of lupus. Activities
that the Secretary may authorize for such projects may also 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, 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 integrate the program under this title
with other grant programs 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 treatment 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 financial circumstances of the individual receiving
services.
(4) 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.
(5) 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 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 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 such sums as may be necessary 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
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