II 

111TH CONGRESS 

1ST SESSION S. 1545 

To expand the research and awareness activities of the National Institute 

of Arthritis and Musculoskeletal and Skin Diseases and the Centers 

for Disease Control and Prevention with respect to scleroderma, and 

for other purposes. 

IN THE SENATE OF THE UNITED STATES 

JULY 30, 2009 

Mrs. GILLIBRAND introduced the following bill; which was read twice and 

referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To expand the research and awareness activities of the National Institute of Arthritis and Musculoskeletal and Skin 

Diseases and the Centers for Disease Control and Prevention with respect to scleroderma, 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 ‘‘Scleroderma Research 

5 and Awareness Act’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds as follows: 


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1 (1) Scleroderma is a chronic, disabling and 

2 often fatal autoimmune disease in which the body’s 

3 soft tissues contract and harden due to an over4 production of collagen. 

5 (2) Scleroderma causes damage to one or more 

6 of the body’s organ systems, including the skin, 

7 heart, lungs, kidneys, gastrointestinal tract, and 

8 blood vessels. 

9 (3) It is estimated that 300,000 people in the 

10 United States suffer from scleroderma, 80 percent of 

11 whom are women often diagnosed during their child 

12 bearing years. 

13 (4) Choctaw Native Americans, African-Ameri14 cans, and Hispanics are disproportionately affected 

15 by scleroderma and tend to exhibit more rapidly pro16 gressing and severe cases of the disease. 

17 (5) The causes of scleroderma are unknown. 

18 (6) Scleroderma is associated with many other 

19 conditions including pulmonary hypertension, 

20 gastroparesis, Raynaud’s phenomenon, Sjo ̈gren’s 

21 Syndrome and lupus. 

22 (7) The estimated total annual economic impact 

23 of scleroderma in the United States is in excess of 

24 $1,500,000,000. 


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1 (8) Annual Federal support for scleroderma re2 search at the National Institutes of Health is cur3 rently estimated at $20,000,000. 

4 SEC. 3. NATIONAL INSTITUTE OF ARTHRITIS AND MUS5 CULOSKELETAL AND SKIN DISEASES; 

6 SCLERODERMA RESEARCH EXPANSION. 

7 (a) IN GENERAL.—The Director of The National In8 stitute of Arthritis and Musculoskeletal and Skin Diseases 

9 shall expand, intensify, and coordinate the activities of the 

10 Institute with respect to scleroderma, with particular em11 phasis on the following areas: 

12 (1) Research focused on the etiology of 

13 scleroderma and the development of new treatment 

14 options. 

15 (2) Clinical research to evaluate new treatments 

16 options. 

17 (3) Basic research on the relationship between 

18 scleroderma and secondary conditions such as pul19 monary hypertension, gastroparesis, Raynaud’s phe20 nomenon, Sjo ̈gren’s Syndrome (and other diseases as 

21 determined by the Director). 

22 (4) Establishment of scleroderma patient reg23 istries, including family and childhood onset reg24 istries. 


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1 (5) Support for training of new clinicians and 

2 investigators with expertise in scleroderma. 

3 (b) BIENNIAL REPORTS.—As a part of the biennial 

4 report made under section 403 of the Public Health Serv5 ice Act (42 U.S.C. 283), the Secretary shall include infor6 mation on the status of scleroderma research at the Na7 tional Institutes of Health. 

8 (c) AUTHORIZATION OF APPROPRIATIONS.— 

9 (1) IN GENERAL.—For the purpose of carrying 

10 out subsection (a), there are authorized to be appro11 priated $25,000,000 in fiscal year 2010, 

12 $30,000,000 in fiscal year 2011, and $35,000,000 in 

13 fiscal year 2012. 

14 (2) RESERVATIONS.—Of the amounts author15 ized to be appropriated under paragraph (1), not 

16 more than 15 percent shall be reserved for the train17 ing of qualified health professionals in biomedical re18 search focused on scleroderma. 

19 SEC. 4. PROMOTING PUBLIC AWARENESS OF 

20 SCLERODERMA. 

21 (a) IN GENERAL.—The Secretary, acting through the 

22 Director of the Centers for Disease Control and Preven23 tion, shall carry out an educational campaign to increase 

24 public awareness of scleroderma. Print, video, and WebVerDate Nov 24 2008 00:27 Aug 01, 2009 Jkt 079200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1545.IS S1545

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1 based materials distributed under this program may in2 clude— 

3 (1) basic information on scleroderma and its 

4 symptoms; 

5 (2) information on the incidence and prevalence 

6 of scleroderma; 

7 (3) diseases and conditions affiliated with 

8 scleroderma; or 

9 (4) the importance of early diagnosis and treat10 ment. 

11 (b) DISSEMINATION OF INFORMATION.—The Sec12 retary is encouraged to disseminate information under 

13 subsection (a) through a cooperative agreement with a na14 tional nonprofit entity with expertise in scleroderma. 

15 (c) REPORT TO CONGRESS.—Not later than Sep16 tember 30, 2010, the Secretary shall report to the Com17 mittee on Energy and Commerce of the House of Rep18 resentatives, the Committee on Health, Education, Labor, 

19 and Pensions of the Senate, and the Committee on Appro20 priations of the House of Representatives and the Senate 

21 on the status of activities under this section. 

22 (d) AUTHORIZATION OF APPROPRIATIONS.—For the 

23 purpose of carrying out this section, there is authorized 


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1 to be appropriated $2,500,000 for each of fiscal years 

2 2010, 2011, and 2012. 

Æ 


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