106TH CONGRESS

2D SESSION H. R. 762

AN ACT

To amend the Public Health Service Act to provide

for research and services with respect to lupus.

106TH CONGRESS

2D SESSION H. R. 762

AN ACT

To amend the Public Health Service Act to provide for

research and services with respect to lupus.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,
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1 SECTION 1. SHORT TITLE.

2 This Act may be cited as the ‘‘Lupus Research and

3 Care Amendments of 2000’’.

4 SEC. 2. FINDINGS.

5 The Congress finds that—

6 (1) lupus is a serious, complex, inflammatory,

7 autoimmune disease of particular concern to women;

8 (2) lupus affects women nine times more often

9 than men;

10 (3) there are three main types of lupus: sys11 temic lupus, a serious form of the disease that af12 fects many parts of the body; discoid lupus, a form

13 of the disease that affects mainly the skin; and

14 drug-induced lupus caused by certain medications;

15 (4) lupus can be fatal if not detected and treat16 ed early;

17 (5) the disease can simultaneously affect var18 ious areas of the body, such as the skin, joints, kid19 neys, and brain, and can be difficult to diagnose be20 cause the symptoms of lupus are similar to those of

21 many other diseases;

22 (6) lupus disproportionately affects African23 American women, as the prevalence of the disease

24 among such women is three times the prevalence

25 among white women, and an estimated 1 in 250 Af-
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1 rican-American women between the ages of 15 and

2 65 develops the disease;

3 (7) it has been estimated that between

4 1,400,000 and 2,000,000 Americans have been diag5 nosed with the disease, and that many more have

6 undiagnosed cases;

7 (8) current treatments for the disease can be

8 effective, but may lead to damaging side effects;

9 (9) many victims of the disease suffer debili10 tating pain and fatigue, making it difficult to main11 tain employment and lead normal lives; and

12 (10) in fiscal year 1996, the amount allocated

13 by the National Institutes of Health for research on

14 lupus was $33,000,000, which is less than one-half

15 of 1 percent of the budget for such Institutes.

16 TITLE I—RESEARCH ON LUPUS

17 SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVI18 TIES.

19 Subpart 4 of part C of title IV of the Public Health

20 Service Act (42 U.S.C. 285d et seq.) is amended by insert21 ing after section 441 the following section:

22 ‘‘LUPUS

23 ‘‘SEC. 441A. (a) IN GENERAL.—The Director of the

24 Institute shall expand and intensify research and related

25 activities of the Institute with respect to lupus.
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1 ‘‘(b) COORDINATION WITH OTHER INSTITUTES.—

2 The Director of the Institute shall coordinate the activities

3 of the Director under subsection (a) with similar activities

4 conducted by the other national research institutes and

5 agencies of the National Institutes of Health to the extent

6 that such Institutes and agencies have responsibilities that

7 are related to lupus.

8 ‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub9 section (a), the Director of the Institute shall conduct or

10 support research to expand the understanding of the

11 causes of, and to find a cure for, lupus. Activities under

12 such subsection shall include conducting and supporting

13 the following:

14 ‘‘(1) Research to determine the reasons under15 lying the elevated prevalence of lupus in women, in16 cluding African-American women.

17 ‘‘(2) Basic research concerning the etiology and

18 causes of the disease.

19 ‘‘(3) Epidemiological studies to address the fre20 quency and natural history of the disease and the

21 differences among the sexes and among racial and

22 ethnic groups with respect to the disease.

23 ‘‘(4) The development of improved diagnostic

24 techniques.
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1 ‘‘(5) Clinical research for the development and

2 evaluation of new treatments, including new biologi3 cal agents.

4 ‘‘(6) Information and education programs for

5 health care professionals and the public.

6 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For the

7 purpose of carrying out this section, there are authorized

8 to be appropriated such sums as may be necessary for

9 each of the fiscal years 2001 through 2003.’’.

10 TITLE II—DELIVERY OF

11 SERVICES REGARDING LUPUS

12 SEC. 201. ESTABLISHMENT OF PROGRAM OF GRANTS.

13 (a) IN GENERAL.—The Secretary of Health and

14 Human Services shall in accordance with this title make

15 grants to provide for projects for the establishment, oper16 ation, and coordination of effective and cost-efficient sys17 tems for the delivery of essential services to individuals

18 with lupus and their families.

19 (b) RECIPIENTS OF GRANTS.—A grant under sub20 section (a) may be made to an entity only if the entity

21 is a public or nonprofit private entity, which may include

22 a State or local government; a public or nonprofit private

23 hospital, community-based organization, hospice, ambula24 tory care facility, community health center, migrant health
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1 center, or homeless health center; or other appropriate

2 public or nonprofit private entity.

3 (c) CERTAIN ACTIVITIES.—To the extent practicable

4 and appropriate, the Secretary shall ensure that projects

5 under subsection (a) provide services for the diagnosis and

6 disease management of lupus. Activities that the Secretary

7 may authorize for such projects may also include the fol8 lowing:

9 (1) Delivering or enhancing outpatient, ambula10 tory, and home-based health and support services,

11 including case management and comprehensive

12 treatment services, for individuals with lupus; and

13 delivering or enhancing support services for their

14 families.

15 (2) Delivering or enhancing inpatient care man16 agement services that prevent unnecessary hos17 pitalization or that expedite discharge, as medically

18 appropriate, from inpatient facilities of individuals

19 with lupus.

20 (3) Improving the quality, availability, and or21 ganization of health care and support services (in22 cluding transportation services, attendant care,

23 homemaker services, day or respite care, and pro24 viding counseling on financial assistance and insur-
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1 ance) for individuals with lupus and support services

2 for their families.

3 (d) INTEGRATION WITH OTHER PROGRAMS.—To the

4 extent practicable and appropriate, the Secretary shall in5 tegrate the program under this title with other grant pro6 grams carried out by the Secretary, including the program

7 under section 330 of the Public Health Service Act.

8 SEC. 202. CERTAIN REQUIREMENTS.

9 A grant may be made under section 201 only if the

10 applicant involved makes the following agreements:

11 (1) Not more than 5 percent of the grant will

12 be used for administration, accounting, reporting,

13 and program oversight functions.

14 (2) The grant will be used to supplement and

15 not supplant funds from other sources related to the

16 treatment of lupus.

17 (3) The applicant will abide by any limitations

18 deemed appropriate by the Secretary on any charges

19 to individuals receiving services pursuant to the

20 grant. As deemed appropriate by the Secretary, such

21 limitations on charges may vary based on the finan22 cial circumstances of the individual receiving serv23 ices.

24 (4) The grant will not be expended to make

25 payment for services authorized under section
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1 201(a) to the extent that payment has been made,

2 or can reasonably be expected to be made, with re3 spect to such services—

4 (A) under any State compensation pro5 gram, under an insurance policy, or under any

6 Federal or State health benefits program; or

7 (B) by an entity that provides health serv8 ices on a prepaid basis.

9 (5) The applicant will, at each site at which the

10 applicant provides services under section 201(a),

11 post a conspicuous notice informing individuals who

12 receive the services of any Federal policies that

13 apply to the applicant with respect to the imposition

14 of charges on such individuals.

15 SEC. 203. TECHNICAL ASSISTANCE.

16 The Secretary may provide technical assistance to as17 sist entities in complying with the requirements of this

18 title in order to make such entities eligible to receive

19 grants under section 201.

20 SEC. 204. DEFINITIONS.

21 For purposes of this title:

22 (1) The term ‘‘official poverty line’’ means the

23 poverty line established by the Director of the Office

24 of Management and Budget and revised by the Sec-
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1 retary in accordance with section 673(2) of the Om2 nibus Budget Reconciliation Act of 1981.

3 (2) The term ‘‘Secretary’’ means the Secretary

4 of Health and Human Services.

5 SEC. 205. AUTHORIZATION OF APPROPRIATIONS.

6 For the purpose of carrying out this title, there are

7 authorized to be appropriated such sums as may be nec8 essary for each of the fiscal years 2001 through 2003.

Passed the House of Representatives October 10,

2000.

Attest:

Clerk.