I

104TH CONGRESS

1ST SESSION H. R. 835

To amend the Public Health Service Act to provide for expanding and intensifying activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases with respect to lupus.

IN THE HOUSE OF REPRESENTATIVES

FEBRUARY 6, 1995

Mrs. MEEK of Florida introduced the following bill; which was referred to the

Committee on Commerce

A BILL

To amend the Public Health Service Act to provide for

expanding and intensifying activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases 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

5 Amendments of 1995’’.

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 over 500,000

24 Americans have been diagnosed with the disease,

25 and that many more have undiagnosed cases;
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1 (8) current treatments for the disease can be

2 effective, but may lead to damaging side effects; and

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

5 employment and lead normal lives.

6 SEC. 3. EXPANSION AND INTENSIFICATION OF ACTIVITIES

7 REGARDING LUPUS.

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

9 Service Act (42 U.S.C. 285d et seq.) is amended by insert10 ing after section 441 the following section:

11 ‘‘LUPUS

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

13 Institute shall expand and intensify research and related

14 activities of the Institute with respect to lupus.

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

16 The Director of the Institute shall coordinate the activities

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

18 conducted by the other national research institutes and

19 agencies of the National Institutes of Health to the extent

20 that such Institutes and agencies have responsibilities that

21 are related to lupus.

22 ‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub23 section (a), the Director of the Institute shall conduct or

24 support research to expand the understanding of the

25 causes of, and to find a cure for, lupus. Activities under
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1 such subsection shall include conducting and supporting

2 the following:

3 ‘‘(1) Research to determine the reasons under4 lying the elevated prevalence of lupus in women, in5 cluding African-American women.

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

7 causes of the disease.

8 ‘‘(3) Epidemiological studies to address the fre9 quency and natural history of the disease and the

10 differences among the sexes and among racial and

11 ethnic groups with respect to the disease.

12 ‘‘(4) The development of improved screening

13 techniques.

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

15 evaluation of new treatments, including new biologi16 cal agents.

17 ‘‘(6) Information and education programs for

18 health care professionals and the public.

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

20 purpose of carrying out this section, there are authorized

21 to be appropriated $20,000,000 for fiscal year 1995, and

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

23 1996 and 1997. The authorization of appropriations es24 tablished in the preceding sentence is in addition to any
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1 other authorization of appropriations that is available for

2 such purpose.’’.

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