Calendar No. 608

103D CONGRESS

2D SESSION S. 1629

[Report No. 103–364]

A BILL

To amend the Public Health Service Act to provide

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

SEPTEMBER 13 (legislative day, SEPTEMBER 12), 1994

Reported with an amendment
II

Calendar No. 608

103D CONGRESS

2D SESSION S. 1629

[Report No. 103–364]

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, Mr. SIMON, Mr. INOUYE, and Mr.

JOHNSTON) introduced the following bill; which was read twice and referred to the Committee on Labor and Human Resources

SEPTEMBER 13 (legislative day, SEPTEMBER 12), 1994

Reported by Mr. KENNEDY, with an amendment

[Strike out all after the enacting clause and insert the part printed in italic]

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,
2

•S 1629 RS

1 SECTION 1. SHORT TITLE.

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

3 Amendments of 1993’’.

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 9 times more often

9 than men;

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

11 lupus, a serious form of the disease that affects

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

13 disease that affects mainly the skin; and drug-in14 duced lupus caused by certain medications;

15 (4) lupus can be fatal if not detected and

16 treated 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 3 times the prevalence among

25 white women, and an estimated 1 in 250 African-
3

•S 1629 RS

1 American women between the ages of 15 and 65 de2 velops the disease;

3 (7) it has been estimated that over 500,000

4 Americans have been diagnosed with the disease,

5 and that many more have undiagnosed cases;

6 (8) current treatments for the disease can be

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

8 (9) many victims of the disease suffer debilitat9 ing pain and fatigue, making it difficult to maintain

10 employment and lead normal lives.

11 SEC. 3. EXPANSION AND INTENSIFICATION OF ACTIVITIES

12 REGARDING LUPUS.

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 new section:

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.
4

•S 1629 RS

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 research to determine the

6 reasons underlying the elevated prevalence of the disease

7 among African-American and other women. Activities

8 under such subsection shall provide for an expansion and

9 intensification of the conduct and support of—

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

11 causes of lupus;

12 ‘‘(2) 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 ‘‘(3) the development of improved screening

17 techniques;

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

19 evaluation of new treatments, including new biologi20 cal agents; and

21 ‘‘(5) 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 $20,000,000 for fiscal year 1994, and
5

•S 1629 RS

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

2 1994 through 1996. The authorization of appropriations

3 established in the preceding sentence is in addition to any

4 other authorization of appropriations that is available for

5 such purpose.’’.

6 SECTION 1. SHORT TITLE.

7 This Act may be cited as the ‘‘Lupus Research Amend8 ments of 1994’’.

9 SEC. 2. EXPANSION AND INTENSIFICATION OF ACTIVITIES

10 REGARDING LUPUS.

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

12 Service Act (42 U.S.C. 285d et seq.) is amended by insert13 ing after section 441 the following new section:

14 ‘‘LUPUS

15 ‘‘SEC. 441A. (a) IN GENERAL.—The Director of the In16 stitute shall conduct lupus research and related activities.

17 ‘‘(b) COORDINATION WITH OTHER INSTITUTES.—The

18 Director of the Institute shall coordinate the activities of

19 the Director under subsection (a) with similar activities

20 conducted by the other national research institutes and

21 agencies of the National Institutes of Health to the extent

22 that such Institutes and agencies have responsibilities that

23 are related to lupus.

24 ‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub25 section (a), the Director of the Institute shall conduct or

26 support research to expand the understanding of the causes
6

•S 1629 RS

1 of, and to find a cure for, lupus. Activities under such sub2 section shall provide for the conduct and support of—

3 ‘‘(1) research to determine the reasons for the ele4 vated prevalence of the disease in women, including

5 African American women;

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

7 causes of lupus;

8 ‘‘(3) epidemiological studies to address the fre9 quency and natural history of the disease and the dif10 ferences among the sexes and among racial and ethnic

11 groups with respect to the disease;

12 ‘‘(4) the development of improved diagnostic

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; and

19 ‘‘(7) other relevant activities.’’.