```

[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[S. 1629 Reported in Senate (RS)]

                                                       Calendar No. 608

103d CONGRESS

  2d Session

                                S. 1629

                          [Report No. 103-364]

_______________________________________________________________________

                                 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.

_______________________________________________________________________

           September 13 (legislative day, September 12), 1994

                       Reported with an amendment

                                                       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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

-S-E-C-T-I-O-N -1-. -S-H-O-R-T -T-I-T-L-E-.

    -T-h-i-s -A-c-t -m-a-y -b-e -c-i-t-e-d -a-s -t-h-e -`-`-L-u-p-u-s 
-R-e-s-e-a-r-c-h -A-m-e-n-d-m-e-n-t-s -o-f -1-9-9-3-'-'-.

-S-E-C-. -2-. -F-I-N-D-I-N-G-S-.

    -T-h-e -C-o-n-g-r-e-s-s -f-i-n-d-s -t-h-a-t---
            -(-1-) -l-u-p-u-s -i-s -a -s-e-r-i-o-u-s-, -c-o-m-p-l-e-x-, 
        -i-n-f-l-a-m-m-a-t-o-r-y-, -a-u-t-o-i-m-m-u-n-e -d-i-s-e-a-s-e 
        -o-f -p-a-r-t-i-c-u-l-a-r -c-o-n-c-e-r-n -t-o -w-o-m-e-n-;
            -(-2-) -l-u-p-u-s -a-f-f-e-c-t-s -w-o-m-e-n -9 -t-i-m-e-s 
        -m-o-r-e -o-f-t-e-n -t-h-a-n -m-e-n-;
            -(-3-) -t-h-e-r-e -a-r-e -3 -m-a-i-n -t-y-p-e-s -o-f 
        -l-u-p-u-s-: -s-y-s-t-e-m-i-c -l-u-p-u-s-, -a -s-e-r-i-o-u-s 
        -f-o-r-m -o-f -t-h-e -d-i-s-e-a-s-e -t-h-a-t -a-f-f-e-c-t-s 
        -m-a-n-y -p-a-r-t-s -o-f -t-h-e -b-o-d-y-; -d-i-s-c-o-i-d 
        -l-u-p-u-s-, -a -f-o-r-m -o-f -t-h-e -d-i-s-e-a-s-e -t-h-a-t 
        -a-f-f-e-c-t-s -m-a-i-n-l-y -t-h-e -s-k-i-n-; -a-n-d -d-r-u-g--
        -i-n-d-u-c-e-d -l-u-p-u-s -c-a-u-s-e-d -b-y -c-e-r-t-a-i-n 
        -m-e-d-i-c-a-t-i-o-n-s-;
            -(-4-) -l-u-p-u-s -c-a-n -b-e -f-a-t-a-l -i-f -n-o-t 
        -d-e-t-e-c-t-e-d -a-n-d -t-r-e-a-t-e-d -e-a-r-l-y-;
            -(-5-) -t-h-e -d-i-s-e-a-s-e -c-a-n 
        -s-i-m-u-l-t-a-n-e-o-u-s-l-y -a-f-f-e-c-t -v-a-r-i-o-u-s 
        -a-r-e-a-s -o-f -t-h-e -b-o-d-y-, -s-u-c-h -a-s -t-h-e 
        -s-k-i-n-, -j-o-i-n-t-s-, -k-i-d-n-e-y-s-, -a-n-d -b-r-a-i-n-, 
        -a-n-d -c-a-n -b-e -d-i-f-f-i-c-u-l-t -t-o -d-i-a-g-n-o-s-e 
        -b-e-c-a-u-s-e -t-h-e -s-y-m-p-t-o-m-s -o-f -l-u-p-u-s -a-r-e 
        -s-i-m-i-l-a-r -t-o -t-h-o-s-e -o-f -m-a-n-y -o-t-h-e-r 
        -d-i-s-e-a-s-e-s-;
            -(-6-) -l-u-p-u-s -d-i-s-p-r-o-p-o-r-t-i-o-n-a-t-e-l-y 
        -a-f-f-e-c-t-s -A-f-r-i-c-a-n---A-m-e-r-i-c-a-n -w-o-m-e-n-, 
        -a-s -t-h-e -p-r-e-v-a-l-e-n-c-e -o-f -t-h-e -d-i-s-e-a-s-e 
        -a-m-o-n-g -s-u-c-h -w-o-m-e-n -i-s -3 -t-i-m-e-s -t-h-e 
        -p-r-e-v-a-l-e-n-c-e -a-m-o-n-g -w-h-i-t-e -w-o-m-e-n-, -a-n-d 
        -a-n -e-s-t-i-m-a-t-e-d -1 -i-n -2-5-0 -A-f-r-i-c-a-n--
        -A-m-e-r-i-c-a-n -w-o-m-e-n -b-e-t-w-e-e-n -t-h-e -a-g-e-s -o-f 
        -1-5 -a-n-d -6-5 -d-e-v-e-l-o-p-s -t-h-e -d-i-s-e-a-s-e-;
            -(-7-) -i-t -h-a-s -b-e-e-n -e-s-t-i-m-a-t-e-d -t-h-a-t 
        -o-v-e-r -5-0-0-,-0-0-0 -A-m-e-r-i-c-a-n-s -h-a-v-e -b-e-e-n 
        -d-i-a-g-n-o-s-e-d -w-i-t-h -t-h-e -d-i-s-e-a-s-e-, -a-n-d 
        -t-h-a-t -m-a-n-y -m-o-r-e -h-a-v-e -u-n-d-i-a-g-n-o-s-e-d 
        -c-a-s-e-s-;
            -(-8-) -c-u-r-r-e-n-t -t-r-e-a-t-m-e-n-t-s -f-o-r -t-h-e 
        -d-i-s-e-a-s-e -c-a-n -b-e -e-f-f-e-c-t-i-v-e-, -b-u-t -m-a-y 
        -l-e-a-d -t-o -d-a-m-a-g-i-n-g -s-i-d-e -e-f-f-e-c-t-s-; -a-n-d
            -(-9-) -m-a-n-y -v-i-c-t-i-m-s -o-f -t-h-e -d-i-s-e-a-s-e 
        -s-u-f-f-e-r -d-e-b-i-l-i-t-a-t-i-n-g -p-a-i-n -a-n-d 
        -f-a-t-i-g-u-e-, -m-a-k-i-n-g -i-t -d-i-f-f-i-c-u-l-t -t-o 
        -m-a-i-n-t-a-i-n -e-m-p-l-o-y-m-e-n-t -a-n-d -l-e-a-d 
        -n-o-r-m-a-l -l-i-v-e-s-.

-S-E-C-. -3-. -E-X-P-A-N-S-I-O-N -A-N-D -I-N-T-E-N-S-I-F-I-C-A-T-I-O-N 
              -O-F -A-C-T-I-V-I-T-I-E-S -R-E-G-A-R-D-I-N-G -L-U-P-U-S-.

    -S-u-b-p-a-r-t -4 -o-f -p-a-r-t -C -o-f -t-i-t-l-e -I-V -o-f -t-h-e 
-P-u-b-l-i-c -H-e-a-l-t-h -S-e-r-v-i-c-e -A-c-t -(-4-2 -U-.-S-.-C-. 
-2-8-5-d -e-t -s-e-q-.-) -i-s -a-m-e-n-d-e-d -b-y -i-n-s-e-r-t-i-n-g 
-a-f-t-e-r -s-e-c-t-i-o-n -4-4-1 -t-h-e -f-o-l-l-o-w-i-n-g -n-e-w 
-s-e-c-t-i-o-n-:

                             -`-`-l-u-p-u-s

    -`-`-S-e-c-. -4-4-1-A-. -(-a-) -I-n -G-e-n-e-r-a-l-.----T-h-e 
-D-i-r-e-c-t-o-r -o-f -t-h-e -I-n-s-t-i-t-u-t-e -s-h-a-l-l -e-x-p-a-n-d 
-a-n-d -i-n-t-e-n-s-i-f-y -r-e-s-e-a-r-c-h -a-n-d -r-e-l-a-t-e-d 
-a-c-t-i-v-i-t-i-e-s -o-f -t-h-e -I-n-s-t-i-t-u-t-e -w-i-t-h 
-r-e-s-p-e-c-t -t-o -l-u-p-u-s-.
    -`-`-(-b-) -C-o-o-r-d-i-n-a-t-i-o-n -W-i-t-h -O-t-h-e-r 
-I-n-s-t-i-t-u-t-e-s-.----T-h-e -D-i-r-e-c-t-o-r -o-f -t-h-e 
-I-n-s-t-i-t-u-t-e -s-h-a-l-l -c-o-o-r-d-i-n-a-t-e -t-h-e 
-a-c-t-i-v-i-t-i-e-s -o-f -t-h-e -D-i-r-e-c-t-o-r -u-n-d-e-r 
-s-u-b-s-e-c-t-i-o-n -(-a-) -w-i-t-h -s-i-m-i-l-a-r 
-a-c-t-i-v-i-t-i-e-s -c-o-n-d-u-c-t-e-d -b-y -t-h-e -o-t-h-e-r 
-n-a-t-i-o-n-a-l -r-e-s-e-a-r-c-h -i-n-s-t-i-t-u-t-e-s -a-n-d 
-a-g-e-n-c-i-e-s -o-f -t-h-e -N-a-t-i-o-n-a-l -I-n-s-t-i-t-u-t-e-s -o-f 
-H-e-a-l-t-h -t-o -t-h-e -e-x-t-e-n-t -t-h-a-t -s-u-c-h 
-I-n-s-t-i-t-u-t-e-s -a-n-d -a-g-e-n-c-i-e-s -h-a-v-e 
-r-e-s-p-o-n-s-i-b-i-l-i-t-i-e-s -t-h-a-t -a-r-e -r-e-l-a-t-e-d -t-o 
-l-u-p-u-s-.
    -`-`-(-c-) -P-r-o-g-r-a-m-s -f-o-r -L-u-p-u-s-.----I-n 
-c-a-r-r-y-i-n-g -o-u-t -s-u-b-s-e-c-t-i-o-n -(-a-)-, -t-h-e 
-D-i-r-e-c-t-o-r -o-f -t-h-e -I-n-s-t-i-t-u-t-e -s-h-a-l-l 
-c-o-n-d-u-c-t -o-r -s-u-p-p-o-r-t -r-e-s-e-a-r-c-h -t-o -e-x-p-a-n-d 
-t-h-e -u-n-d-e-r-s-t-a-n-d-i-n-g -o-f -t-h-e -c-a-u-s-e-s -o-f-, 
-a-n-d -t-o -f-i-n-d -a -c-u-r-e -f-o-r-, -l-u-p-u-s-. 
-A-c-t-i-v-i-t-i-e-s -u-n-d-e-r -s-u-c-h -s-u-b-s-e-c-t-i-o-n 
-s-h-a-l-l -i-n-c-l-u-d-e -r-e-s-e-a-r-c-h -t-o -d-e-t-e-r-m-i-n-e 
-t-h-e -r-e-a-s-o-n-s -u-n-d-e-r-l-y-i-n-g -t-h-e -e-l-e-v-a-t-e-d 
-p-r-e-v-a-l-e-n-c-e -o-f -t-h-e -d-i-s-e-a-s-e -a-m-o-n-g 
-A-f-r-i-c-a-n---A-m-e-r-i-c-a-n -a-n-d -o-t-h-e-r -w-o-m-e-n-. 
-A-c-t-i-v-i-t-i-e-s -u-n-d-e-r -s-u-c-h -s-u-b-s-e-c-t-i-o-n 
-s-h-a-l-l -p-r-o-v-i-d-e -f-o-r -a-n -e-x-p-a-n-s-i-o-n -a-n-d 
-i-n-t-e-n-s-i-f-i-c-a-t-i-o-n -o-f -t-h-e -c-o-n-d-u-c-t -a-n-d 
-s-u-p-p-o-r-t -o-f---
            -`-`-(-1-) -b-a-s-i-c -r-e-s-e-a-r-c-h -c-o-n-c-e-r-n-i-n-g 
        -t-h-e -e-t-i-o-l-o-g-y -a-n-d -c-a-u-s-e-s -o-f -l-u-p-u-s-;
            -`-`-(-2-) -e-p-i-d-e-m-i-o-l-o-g-i-c-a-l -s-t-u-d-i-e-s 
        -t-o -a-d-d-r-e-s-s -t-h-e -f-r-e-q-u-e-n-c-y -a-n-d 
        -n-a-t-u-r-a-l -h-i-s-t-o-r-y -o-f -t-h-e -d-i-s-e-a-s-e -a-n-d 
        -t-h-e -d-i-f-f-e-r-e-n-c-e-s -a-m-o-n-g -t-h-e -s-e-x-e-s 
        -a-n-d -a-m-o-n-g -r-a-c-i-a-l -a-n-d -e-t-h-n-i-c -g-r-o-u-p-s 
        -w-i-t-h -r-e-s-p-e-c-t -t-o -t-h-e -d-i-s-e-a-s-e-;
            -`-`-(-3-) -t-h-e -d-e-v-e-l-o-p-m-e-n-t -o-f 
        -i-m-p-r-o-v-e-d -s-c-r-e-e-n-i-n-g -t-e-c-h-n-i-q-u-e-s-;
            -`-`-(-4-) -c-l-i-n-i-c-a-l -r-e-s-e-a-r-c-h -f-o-r -t-h-e 
        -d-e-v-e-l-o-p-m-e-n-t -a-n-d -e-v-a-l-u-a-t-i-o-n -o-f -n-e-w 
        -t-r-e-a-t-m-e-n-t-s-, -i-n-c-l-u-d-i-n-g -n-e-w 
        -b-i-o-l-o-g-i-c-a-l -a-g-e-n-t-s-; -a-n-d
            -`-`-(-5-) -i-n-f-o-r-m-a-t-i-o-n -a-n-d -e-d-u-c-a-t-i-o-n 
        -p-r-o-g-r-a-m-s -f-o-r -h-e-a-l-t-h -c-a-r-e 
        -p-r-o-f-e-s-s-i-o-n-a-l-s -a-n-d -t-h-e -p-u-b-l-i-c-.
    -`-`-(-d-) -A-u-t-h-o-r-i-z-a-t-i-o-n -o-f 
-A-p-p-r-o-p-r-i-a-t-i-o-n-s-.----F-o-r -t-h-e -p-u-r-p-o-s-e -o-f 
-c-a-r-r-y-i-n-g -o-u-t -t-h-i-s -s-e-c-t-i-o-n-, -t-h-e-r-e -a-r-e 
-a-u-t-h-o-r-i-z-e-d -t-o -b-e -a-p-p-r-o-p-r-i-a-t-e-d 
-$-2-0-,-0-0-0-,-0-0-0 -f-o-r -f-i-s-c-a-l -y-e-a-r -1-9-9-4-, -a-n-d 
-s-u-c-h -s-u-m-s -a-s -m-a-y -b-e -n-e-c-e-s-s-a-r-y -f-o-r -e-a-c-h 
-o-f -t-h-e -f-i-s-c-a-l -y-e-a-r-s -1-9-9-4 -t-h-r-o-u-g-h -1-9-9-6-. 
-T-h-e -a-u-t-h-o-r-i-z-a-t-i-o-n -o-f -a-p-p-r-o-p-r-i-a-t-i-o-n-s 
-e-s-t-a-b-l-i-s-h-e-d -i-n -t-h-e -p-r-e-c-e-d-i-n-g -s-e-n-t-e-n-c-e 
-i-s -i-n -a-d-d-i-t-i-o-n -t-o -a-n-y -o-t-h-e-r 
-a-u-t-h-o-r-i-z-a-t-i-o-n -o-f -a-p-p-r-o-p-r-i-a-t-i-o-n-s -t-h-a-t 
-i-s -a-v-a-i-l-a-b-l-e -f-o-r -s-u-c-h -p-u-r-p-o-s-e-.-'-'-.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Lupus Research Amendments of 1994''.

SEC. 2. EXPANSION AND INTENSIFICATION OF ACTIVITIES REGARDING LUPUS.

    Subpart 4 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285d et seq.) is amended by inserting after section 441 the 
following new section:

                                ``lupus

    ``Sec. 441A. (a) In General.--The Director of the Institute shall 
conduct lupus research and related activities.
    ``(b) Coordination With Other Institutes.--The Director of the 
Institute shall coordinate the activities of the Director under 
subsection (a) with similar activities conducted by the other national 
research institutes and agencies of the National Institutes of Health 
to the extent that such Institutes and agencies have responsibilities 
that are related to lupus.
    ``(c) Programs for Lupus.--In carrying out subsection (a), the 
Director of the Institute shall conduct or support research to expand 
the understanding of the causes of, and to find a cure for, lupus. 
Activities under such subsection shall provide for the conduct and 
support of--
            ``(1) research to determine the reasons for the elevated 
        prevalence of the disease in women, including African American 
        women;
            ``(2) basic research concerning the etiology and causes of 
        lupus;
            ``(3) epidemiological studies to address the frequency and 
        natural history of the disease and the differences among the 
        sexes and among racial and ethnic groups with respect to the 
        disease;
            ``(4) the development of improved diagnostic techniques;
            ``(5) clinical research for the development and evaluation 
        of new treatments, including new biological agents;
            ``(6) information and education programs for health care 
        professionals and the public; and
            ``(7) other relevant activities.''.
```