II

103D CONGRESS

1ST SESSION S. 1629

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, and for other purposes.

IN THE SENATE OF THE UNITED STATES

NOVEMBER 5 (legislative day, NOVEMBER 2), 1993

Ms. MOSELEY-BRAUN (for herself, Ms. MIKULSKI, Mr. KENNEDY, Mr. LEVIN,

Mrs. MURRAY, Mr. REID, Mr. SHELBY, and Mr. SIMON) 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

expanding and intensifying activities of the National Institute of Arthritis and Musculoskeletal and Skin Diseases with respect to lupus, and for other purposes.

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 1993’’.

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

11 treated 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 new 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

26 such subsection shall include research to determine the
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1 reasons underlying the elevated prevalence of the disease

2 among African-American and other women. Activities

3 under such subsection shall provide for an expansion and

4 intensification of the conduct and support of—

5 ‘‘(1) basic research concerning the etiology and

6 causes of lupus;

7 ‘‘(2) epidemiological studies to address the fre8 quency and natural history of the disease and the

9 differences among the sexes and among racial and

10 ethnic groups with respect to the disease;

11 ‘‘(3) the development of improved screening

12 techniques;

13 ‘‘(4) clinical research for the development and

14 evaluation of new treatments, including new biologi15 cal agents; and

16 ‘‘(5) information and education programs for

17 health care professionals and the public.

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

19 purpose of carrying out this section, there are authorized

20 to be appropriated $20,000,000 for fiscal year 1994, and

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

22 1994 through 1996. The authorization of appropriations

23 established in the preceding sentence is in addition to any

24 other authorization of appropriations that is available for

25 such purpose.’’.
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