II

105TH CONGRESS

2D SESSION S. 2101

To amend the Public Health Service Act to provide for research and services

with respect to lupus.

IN THE SENATE OF THE UNITED STATES

MAY 20, 1998

Mr. BENNETT (for himself, Ms. MOSELEY-BRAUN, and Mr. SHELBY) introduced the following bill; which was read twice and referred to the Committee on Labor and Human Resources

A BILL

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,

3 SECTION 1. SHORT TITLE.

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

5 Care Amendments of 1998’’.

6 SEC. 2. FINDINGS.

7 The Congress finds that—

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

9 autoimmune disease of particular concern to women;
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1 (2) lupus affects women 9 times more often

2 than men;

3 (3) there are 3 main types of lupus: systemic

4 lupus, a serious form of the disease that affects

5 many parts of the body; discoid lupus, a form of the

6 disease that affects mainly the skin; and drug-in7 duced lupus caused by certain medications;

8 (4) lupus can be fatal if not detected and treat9 ed early;

10 (5) the disease can simultaneously affect var11 ious areas of the body, such as the skin, joints, kid12 neys, and brain, and can be difficult to diagnose be13 cause the symptoms of lupus are similar to those of

14 many other diseases;

15 (6) lupus disproportionately affects African16 American women, as the prevalence of the disease

17 among such women is 3 times the prevalence among

18 white women, and an estimated 1 in 250 African19 American women between the ages of 15 and 65 de20 velops the disease;

21 (7) it has been estimated that between

22 1,400,000 and 2,000,000 Americans have been diag23 nosed with the disease, and that many more have

24 undiagnosed cases;
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1 (8) current treatments for the disease can be

2 effective, but may lead to damaging side effects;

3 (9) many victims of the disease suffer debilitat4 ing pain and fatigue, making it difficult to maintain

5 employment and lead normal lives; and

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

7 by the National Institutes of Health for research on

lupus was $33,000,000, less than 1 8 ⁄2 of 1 percent of

9 the budget for such Institutes.

10 TITLE I—RESEARCH ON LUPUS

11 SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVI12 TIES.

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

14 Service Act (42 U.S.C. 285d et seq.) is amended by insert15 ing after section 441 the following:

16 ‘‘LUPUS

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

18 Institute shall expand and intensify research and related

19 activities of the Institute with respect to lupus.

20 ‘‘(b) COORDINATION WITH OTHER INSTITUTES.—

21 The Director of the Institute shall coordinate the activities

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

23 conducted by the other national research institutes and

24 agencies of the National Institutes of Health to the extent

25 that such Institutes and agencies have responsibilities that

26 are related to lupus.
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1 ‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub2 section (a), the Director of the Institute shall conduct or

3 support research to expand the understanding of the

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

5 such subsection shall include conducting and supporting

6 the following:

7 ‘‘(1) Research to determine the reasons under8 lying the elevated prevalence of lupus in women, in9 cluding African-American women.

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

11 causes of the disease.

12 ‘‘(3) Epidemiological studies to address the fre13 quency and natural history of the disease and the

14 differences among the sexes and among racial and

15 ethnic groups with respect to the disease.

16 ‘‘(4) The development of improved screening

17 techniques.

18 ‘‘(5) Clinical research for the development and

19 evaluation of new treatments, including new biologi20 cal agents.

21 ‘‘(6) Information and education programs for

22 health care professionals and the public.

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

24 purpose of carrying out this section, there are authorized

25 to be appropriated $45,000,000 for fiscal year 1999, and
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1 such sums as may be necessary for each of the fiscal years

2 2000 and 2001.’’.

3 TITLE II—DELIVERY OF

4 SERVICES REGARDING LUPUS

5 SEC. 201. ESTABLISHMENT OF PROGRAM OF GRANTS.

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

7 Human Services shall in accordance with this title make

8 grants to provide for projects for the establishment, oper9 ation, and coordination of effective and cost-efficient sys10 tems for the delivery of essential services to individuals

11 with lupus and their families.

12 (b) RECIPIENTS OF GRANTS.—A grant under sub13 section (a) may be made to an entity only if the entity

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

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

16 hospital, community-based organization, hospice, ambula17 tory care facility, community health center, or other ap18 propriate public or nonprofit private entity.

19 (c) CERTAIN ACTIVITIES.—Activities that the Sec20 retary may authorize for projects under subsection (a) in21 clude the following:

22 (1) Delivering or enhancing outpatient, ambula23 tory, and home-based health and support services,

24 including case management and comprehensive

25 treatment services, for individuals with lupus; and
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1 delivering or enhancing support services for their

2 families.

3 (2) Delivering or enhancing inpatient care man4 agement services that prevent unnecessary hos5 pitalization or that expedite discharge, as medically

6 appropriate, from inpatient facilities of individuals

7 with lupus.

8 (3) Improving the quality, availability, and or9 ganization of health care and support services (in10 cluding transportation services, attendant care,

11 homemaker services, and day or respite care) for in12 dividuals with lupus and their families.

13 (4) Providing assistance to ensure the continu14 ity of health insurance coverage for individuals with

15 lupus.

16 SEC. 202. GRANT REQUIREMENTS.

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

18 applicant involved makes the following agreements:

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

20 be used for administration, accounting, reporting,

21 and program oversight functions.

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

23 not supplant funds from other sources related to the

24 treatment of lupus.
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1 (3) With respect to the imposition of charges

2 for the provision of services under the grant:

3 (A) In the case of an individual with an in4 come less than or equal to 100 percent of the

5 official poverty line, the applicant will not im6 pose a charge.

7 (B) In the case of an individual with an in8 come greater than 100 percent of the official

9 poverty line and not exceeding 200 percent of

10 such poverty line, the applicant will not impose

11 charges for any calendar year exceeding 5 per12 cent of the annual gross income of the individ13 ual involved.

14 (C) In the case of an individual with an in15 come greater than 200 percent of the official

16 poverty line and not exceeding 300 percent of

17 such poverty line, the applicant will not impose

18 charges for any calendar year exceeding 7 per19 cent of the annual gross income of the individ20 ual.

21 (D) In the case of an individual with an in22 come greater than 300 percent of the official

23 poverty line, the applicant will not impose

24 charges for any calendar year exceeding 10 per-
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1 cent of the annual gross income of the individ2 ual.

3 SEC. 203. TECHNICAL ASSISTANCE.

4 The Secretary may provide technical assistance to as5 sist entities in complying with the requirements of this

6 title in order to make such entities eligible to receive

7 grants under section 201.

8 SEC. 204. DEFINITIONS.

9 For purposes of this title:

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

11 poverty line established by the Director of the Office

12 of Management and Budget and revised by the Sec13 retary in accordance with section 673(2) of the Om14 nibus Budget Reconciliation Act of 1981.

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

16 of Health and Human Services.

17 SEC. 205. AUTHORIZATION OF APPROPRIATIONS.

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

19 authorized to be appropriated $40,000,000 for fiscal year

20 1999, and such sums as may be necessary for each of the

21 fiscal years 2000 through 2003.

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