II 

116TH CONGRESS 

1ST SESSION S. 2477 

To establish a National Commission on Fibrotic Diseases. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 12, 2019 

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

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

A BILL 

To establish a National Commission on Fibrotic Diseases. 

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 ‘‘National Commission 

5 on Scleroderma and Fibrotic Diseases Act of 2019’’. 

6 SEC. 2. NATIONAL COMMISSION ON FIBROTIC DISEASES 

7 RESEARCH. 

8 (a) ESTABLISHMENT.—There is hereby established, 

9 within the National Institutes of Health (referred to in 

10 this section as ‘‘NIH’’), a National Commission on Fi11 brotic Diseases (referred to in this section as the ‘‘Com12 mission’’) to evaluate and make recommendations regardVerDate Sep 11 2014 01:14 Sep 13, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S2477.IS S2477

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1 ing improvements to the coordination and advancement of 

2 NIH-supported research activities related to fibrosis and 

3 fibrotic diseases, which may include scleroderma as a 

4 prototypical condition that can cause fibrosis in various 

5 organs. 

6 (b) MEMBERSHIP.— 

7 (1) IN GENERAL.—The Commission shall be 

8 composed of the following voting members: 

9 (A) The Director of NIH, or the designee 

10 of such director. 

11 (B) The Directors of the following Insti12 tutes, or the designees of such directors: 

13 (i) National Institute of Arthritis and 

14 Musculoskeletal and Skin Diseases. 

15 (ii) National Heart, Lung, and Blood 

16 Institute. 

17 (iii) National Institute of Diabetes 

18 and Digestive and Kidney Diseases. 

19 (iv) National Human Genome Re20 search Institute. 

21 (v) Any other national research insti22 tutes or national centers with an active fi23 brotic disease research portfolio. 

24 (vi) Twelve additional voting members 

25 appointed under paragraph (2). 


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1 (2) ADDITIONAL MEMBERS.—The Commission 

2 shall include additional voting members, as may be 

3 appointed by the Director of NIH, with expertise in 

4 the prevention, care, and epidemiology of any of the 

5 diseases and complications described in subsection 

6 (a), including one or more such members from each 

7 of the following categories: 

8 (A) Leading scientists or physicians with 

9 research expertise in the conditions described in 

10 subsection (a). 

11 (B) Patient and advocates with a perspec12 tive on the conditions described in subsection 

13 (a). 

14 (3) CHAIRPERSON.—The members of the Com15 mission shall select a chairperson from the members 

16 appointed under paragraph (2). 

17 (4) MEETINGS.—The Commission shall meet at 

18 least 3 times a year, with the first meeting occurring 

19 not later than April 1, 2021. 

20 (5) VACANCIES.—A vacancy on the Commission 

21 shall be filled in the same manner as the original ap22 pointment. 

23 (c) RESPONSIBILITIES.—The duties of the Commis24 sion are the following: 


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1 (1) To study the incidence, duration, and mor2 tality rates of fibrotic diseases as described in sub3 section (a). 

4 (2) To evaluate facilities and resources for the 

5 diagnosis, prevention, and treatment of fibrotic dis6 eases described in subsection (a). 

7 (3) To develop a long-range plan for the use 

8 and organization of national resources to effectively 

9 advance research and effectively deal with fibrotic 

10 diseases as described in subsection (a), including— 

11 (A) a comprehensive research plan, which 

12 prioritizes fibrosis opportunities that have 

13 cross-cutting value and require coordination 

14 across multiple national research institutes and 

15 national centers; 

16 (B) topic-specific research recommenda17 tions for each organ or system as impacted by 

18 fibrotic diseases described in subsection (a); and 

19 (C) an overview of common themes and 

20 specific steps for implementation. 

21 (4) To make recommendations, as appropriate, 

22 to the Director of NIH and Congress with respect 

23 to the study, evaluation, and long-range plan de24 scribed in the preceding paragraphs of this sub25 section. 


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1 (d) OPERATING PLAN.—Not later than 90 days after 

2 its first meeting, the Commission shall submit to the Di3 rector of NIH and the Congress an operating plan for car4 rying out the duties of the Commission as described in 

5 subsection (c). Such operating plan may include— 

6 (1) a list of specific activities that the Commis7 sion plans to conduct for purposes of carrying out 

8 the duties described in each of the paragraphs in 

9 subsection (c); 

10 (2) a plan for completing the activities; 

11 (3) a list of members of the Commission and 

12 other individuals who are not members of the Com13 mission who will need to be involved to conduct such 

14 activities; 

15 (4) an explanation of involvement and coordina16 tion of national research institutes and national cen17 ters needed to conduct such activities; 

18 (5) a budget for conducting such activities; and 

19 (6) other information that the Commission de20 termines appropriate. 

21 (e) FINAL REPORT.—Not later than 2 years after the 

22 date of the Commission’s first meeting, the Commission 

23 shall submit to the Director of NIH and Congress a final 

24 report containing all of the findings and recommendation 

25 required by subsection (c). 


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1 (f) SUNSET.—The Commission shall terminate 60 

2 days after submitting its final report, but not later than 

3 September 30, 2023. 

Æ 


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