National Commission on Scleroderma and Fibrotic Diseases Act of 2019

I 116TH CONGRESS 1ST SESSION H. R. 3446 To establish a National Commission on Fibrotic Diseases. IN THE HOUSE OF REPRESENTATIVES JUNE 24, 2019 Mr. KING of New York (for himself, Mr. ENGEL, Mr. THOMPSON of Mis- sissippi, Mr. FITZPATRICK, Ms. JAYAPAL, Miss RICE of New York, Mr. CLAY, Mr. LEVIN of Michigan, and Mrs. BEATTY) introduced the fol- lowing bill; which was referred to the Committee on Energy and Com- merce A BILL To establish a National Commission on Fibrotic Diseases. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘National Commission 4 on Scleroderma and Fibrotic Diseases Act of 2019’’. 5 SEC. 2. NATIONAL COMMISSION ON FIBROTIC DISEASES 6 RESEARCH. 7 (a) ESTABLISHMENT.—There is hereby established, 8 within the National Institutes of Health (in this section 9 referred to as ‘‘NIH’’), a National Commission on Fibrotic 10 VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS 2 •HR 3446 IH Diseases (in this section referred to as the ‘‘Commission’’) 1 to evaluate and make recommendations regarding im- 2 provements to the coordination and advancement of NIH- 3 supported research activities related to fibrosis and fi- 4 brotic diseases, which may include scleroderma as a 5 prototypical condition that can cause fibrosis in various 6 organs. 7 (b) MEMBERSHIP.— 8 (1) IN GENERAL.—The Commission shall be 9 composed of the following voting members: 10 (A) The Director of NIH, or the designee 11 of such director. 12 (B) The Directors of the following Insti- 13 tutes, or the designees of such directors: 14 (i) National Institute of Arthritis and 15 Musculoskeletal and Skin Diseases. 16 (ii) National Heart, Lung, and Blood 17 Institute. 18 (iii) National Institute of Diabetes 19 and Digestive, and Kidney Diseases. 20 (iv) National Human Genome Re- 21 search Institute. 22 (v) Any other Institutes or Centers 23 with an active fibrotic disease research 24 portfolio. 25 VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS 3 •HR 3446 IH (vi) Twelve additional voting members 1 appointed under paragraph (2). 2 (2) ADDITIONAL MEMBERS.—The Commission 3 shall include additional voting members, as may be 4 appointed by the Director of NIH, with expertise in 5 the prevention, care, and epidemiology of any of the 6 diseases and complications described in subsection 7 (a), including one or more such members from each 8 of the following categories: 9 (A) Leading scientists or physicians with 10 research expertise in the conditions described in 11 subsection (a). 12 (B) Patient and advocates with a perspec- 13 tive on the conditions described in subsection 14 (a). 15 (3) CHAIRPERSON.—The members of the Com- 16 mission shall select a chairperson from the members 17 appointed under paragraph (2). 18 (4) MEETINGS.—The Commission shall meet at 19 least three times a year, with the first meeting oc- 20 curring not later than April 1, 2021. 21 (5) VACANCIES.—A vacancy on the Commission 22 shall be filled in the same manner as the original ap- 23 pointments. 24 VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS 4 •HR 3446 IH (c) RESPONSIBILITIES.—The duties of the Commis- 1 sion are the following: 2 (1) To study the incidence, duration, and mor- 3 tality rates of fibrotic diseases as described in sub- 4 section (a). 5 (2) To evaluate facilities and resources for the 6 diagnosis, prevision, and treatment of fibrotic dis- 7 eases described in subsection (a). 8 (3) To develop a long-range plan for the use 9 and organization of national resources to effectively 10 advance research and effectively deal with fibrotic 11 diseases as described in subsection (a), including— 12 (A) a comprehensive research plan, which 13 prioritizes fibrosis opportunities that have 14 cross-cutting value and require coordination 15 across multiple Institutes and Centers; 16 (B) topic-specific research recommenda- 17 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 de- 24 VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS 5 •HR 3446 IH scribed in the preceding paragraphs of this sub- 1 section. 2 (d) OPERATING PLAN.—Not later than 90 days after 3 its first meeting, the Commission shall submit to the Di- 4 rector of NIH and the Congress an operating plan for car- 5 rying out the duties of the Commission as described in 6 subsection (c). Such operating plan may include— 7 (1) a list of specific activities that the Commis- 8 sion plans to conduct for purposes of carrying out 9 the duties described in each of the paragraphs in 10 subsection (c); 11 (2) a plan for completing the activities; 12 (3) a list of members of the Commission and 13 other individuals who are not members of the Com- 14 mission who will need to be involved to conduct such 15 activities; 16 (4) an explanation of NIH Institute and Center 17 involvement and coordination needed to conduct 18 such activities; 19 (5) a budget for conducting such activities; and 20 (6) other information that the Commission 21 deems appropriate. 22 (e) FINAL REPORT.—Not later than 2 years after the 23 date of the Commission’s first meeting, the Commission 24 shall submit to the Director of NIH and the Congress a 25 VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS 6 •HR 3446 IH final report containing all of the findings and rec- 1 ommendation required by subsection (c). 2 (f) SUNSET.—The Commission shall terminate 60 3 days after submitting its final report, but not later than 4 September 30, 2023. 5 Æ VerDate Sep 11 2014 00:06 Jun 29, 2019 Jkt 089200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6301 E:\BILLS\H3446.IH H3446 pamtmann on DSKBFK8HB2PROD with BILLS