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.

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 1999’’.

6 SEC. 2. FINDINGS.

7 The Congress finds that—
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1 (1) lupus is a serious, complex, inflammatory,

2 autoimmune disease of particular concern to women;

3 (2) lupus affects women 9 times more often

4 than men;

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

6 lupus, a serious form of the disease that affects

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

8 disease that affects mainly the skin; and drug-in9 duced lupus caused by certain medications;

10 (4) lupus can be fatal if not detected and treat11 ed early;

12 (5) the disease can simultaneously affect var13 ious areas of the body, such as the skin, joints, kid14 neys, and brain, and can be difficult to diagnose be15 cause the symptoms of lupus are similar to those of

16 many other diseases;

17 (6) lupus disproportionately affects African18 American women, as the prevalence of the disease

19 among such women is 3 times the prevalence among

20 white women, and an estimated 1 in 250 African21 American women between the ages of 15 and 65 de22 velops the disease;

23 (7) it has been estimated that between

24 1,400,000 and 2,000,000 Americans have been diag-
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1 nosed with the disease, and that many more have

2 undiagnosed cases;

3 (8) current treatments for the disease can be

4 effective, but may lead to damaging side effects;

5 (9) many victims of the disease suffer debilitat6 ing pain and fatigue, making it difficult to maintain

7 employment and lead normal lives; and

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

9 by the National Institutes of Health for research on

lupus was $33,000,000, which is less than 1 10 ⁄2 of 1

11 percent of the budget for such Institutes.

12 TITLE I—RESEARCH ON LUPUS

13 SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVI14 TIES.

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

16 Service Act (42 U.S.C. 285d et seq.) is amended by insert17 ing after section 441 the following section:

18 ‘‘LUPUS

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

20 Institute shall expand and intensify research and related

21 activities of the Institute with respect to lupus.

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

23 The Director of the Institute shall coordinate the activities

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

25 conducted by the other national research institutes and

26 agencies of the National Institutes of Health to the extent
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1 that such Institutes and agencies have responsibilities that

2 are related to lupus.

3 ‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub4 section (a), the Director of the Institute shall conduct or

5 support research to expand the understanding of the

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

7 such subsection shall include conducting and supporting

8 the following:

9 ‘‘(1) Research to determine the reasons under10 lying the elevated prevalence of lupus in women, in11 cluding African-American women.

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

13 causes of the disease.

14 ‘‘(3) Epidemiological studies to address the fre15 quency and natural history of the disease and the

16 differences among the sexes and among racial and

17 ethnic groups with respect to the disease.

18 ‘‘(4) The development of improved screening

19 techniques.

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

21 evaluation of new treatments, including new biologi22 cal agents.

23 ‘‘(6) Information and education programs for

24 health care professionals and the public.
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1 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For the

2 purpose of carrying out this section, there are authorized

3 to be appropriated $75,000,000 for fiscal year 2000, and

4 such sums as may be necessary for each of the fiscal years

5 2001 and 2002.’’.

6 TITLE II—DELIVERY OF

7 SERVICES REGARDING LUPUS

8 SEC. 201. ESTABLISHMENT OF PROGRAM OF GRANTS.

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

10 Human Services shall in accordance with this title make

11 grants to provide for projects for the establishment, oper12 ation, and coordination of effective and cost-efficient sys13 tems for the delivery of essential services to individuals

14 with lupus and their families.

15 (b) RECIPIENTS OF GRANTS.—A grant under sub16 section (a) may be made to an entity only if the entity

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

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

19 hospital, community-based organization, hospice, ambula20 tory care facility, community health center, migrant health

21 center, or homeless health center; or other appropriate

22 public or nonprofit private entity.

23 (c) CERTAIN ACTIVITIES.—Activities that the Sec24 retary may authorize for projects under subsection (a) in25 clude the following:
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1 (1) Delivering or enhancing outpatient, ambula2 tory, and home-based health and support services,

3 including case management and comprehensive

4 treatment services, for individuals with lupus; and

5 delivering or enhancing support services for their

6 families.

7 (2) Delivering or enhancing inpatient care man8 agement services that prevent unnecessary hos9 pitalization or that expedite discharge, as medically

10 appropriate, from inpatient facilities of individuals

11 with lupus.

12 (3) Improving the quality, availability, and or13 ganization of health care and support services (in14 cluding transportation services, attendant care,

15 homemaker services, and day or respite care) for in16 dividuals with lupus and their families.

17 (4) Providing assistance to assure the continu18 ity of health insurance coverage for individuals with

19 lupus.

20 SEC. 202. CERTAIN REQUIREMENTS.

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

22 applicant involved makes the following agreements:

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

24 be used for administration, accounting, reporting,

25 and program oversight functions.
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1 (2) The grant will be used to supplement and

2 not supplant funds from other sources related to the

3 treatment of lupus.

4 (3) With respect to the imposition of charges

5 for the provision of services under the grant:

6 (A) In the case of an individual with an in7 come less than or equal to 100 percent of the

8 official poverty line, the applicant will not im9 pose a charge.

10 (B) In the case of an individual with an in11 come greater than 100 percent of the official

12 poverty line and not exceeding 200 percent of

13 such poverty line, the applicant will not impose

14 charges for any calendar year exceeding 5 per15 cent of the annual gross income of the individ16 ual involved.

17 (C) In the case of an individual with an in18 come greater than 200 percent of the official

19 poverty line and not exceeding 300 percent of

20 such poverty line, the applicant will not impose

21 charges for any calendar year exceeding 7 per22 cent of the annual gross income of the individ23 ual.

24 (D) In the case of an individual with an in25 come greater than 300 percent of the official
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1 poverty line, the applicant will not impose

2 charges for any calendar year exceeding 10 per3 cent of the annual gross income of the individ4 ual.

5 (4) With respect to compliance with the agree6 ment made under paragraph (3), a grantee under

7 section 201(a) may, in the case of individuals sub8 ject to a charge for purposes of such paragraph—

9 (A) assess the amount of the charge in the

10 discretion of the grantee, including imposing

11 only a nominal charge for the provision of serv12 ices; and

13 (B) take into consideration the medical ex14 penses of individuals in assessing the amount of

15 the charge, subject to such provisions.

16 (5) The limitations established in paragraph (3)

17 regarding the imposition of charges for services ap18 plies to the annual aggregate of charges imposed for

19 such services, without regard to whether they are

20 characterized as enrollment fees, premiums,

21 deductibles, cost sharing, copayments, coinsurance,

22 or other charges.

23 (6) The grant will not be expended to make

24 payment for services authorized under section

25 201(a) to the extent that payment has been made,
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1 or can reasonably be expected to be made, with re2 spect to such services—

3 (A) under any State compensation pro4 gram, under an insurance policy, or under any

5 Federal or State health benefits program; or

6 (B) by an entity that provides health serv7 ices on a prepaid basis.

8 (7) The applicant will, at each site at which the

9 applicant provides services under section 201(a),

10 post a conspicuous notice informing individuals who

11 receive the services of the policies that apply to the

12 applicant pursuant to paragraphs (3) through (6).

13 SEC. 203. TECHNICAL ASSISTANCE.

14 The Secretary may provide technical assistance to as15 sist entities in complying with the requirements of this

16 title in order to make such entities eligible to receive

17 grants under section 201.

18 SEC. 204. DEFINITIONS.

19 For purposes of this title:

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

21 poverty line established by the Director of the Office

22 of Management and Budget and revised by the Sec23 retary in accordance with section 673(2) of the Om24 nibus Budget Reconciliation Act of 1981.
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1 (2) The term ‘‘Secretary’’ means the Secretary

2 of Health and Human Services.

3 SEC. 205. AUTHORIZATION OF APPROPRIATIONS.

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

5 authorized to be appropriated $75,000,000 for fiscal year

6 2000, and such sums as may be necessary for each of the

7 fiscal years 2001 through 2004.

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