II 115th CONGRESS 2d Session S. 3267 IN THE SENATE OF THE UNITED STATES July 25, 2018 Mrs. Gillibrand (for herself and Mr. Schumer ) 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. Short title This Act may be cited as the National Commission on Scleroderma and Fibrotic Diseases Act of 2018 . 2. National Commission on Fibrotic Diseases (a) Establishment There is established, within the National Institutes of Health, a National Commission on Fibrotic Diseases (referred to in this section as the Commission ) to evaluate and make recommendations regarding improvements to the coordination and advancement of research activities related to fibrosis and fibrotic diseases, which may include scleroderma as a prototypical condition that can cause fibrosis in various organs, supported by the National Institutes of Health. (b) Membership (1) In general The Commission shall be composed of the following voting members: (A) The Director of NIH, or the designee of such director. (B) The Directors of the following Institutes, or their designees: (i) The National Institute of Arthritis and Musculoskeletal and Skin Diseases. (ii) The National Heart, Lung, and Blood Institute. (iii) The National Institute of Diabetes and Digestive and Kidney Diseases. (iv) The National Human Genome Research Institute. (v) Any other national research institute or center with an active fibrotic disease research portfolio. (C) Twelve additional voting members appointed under paragraph (2). (2) Additional members The Commission shall include voting members, appointed by the Director of NIH, with expertise in the prevention, care, and epidemiology of any of the diseases and complications described in subsection (a), including one or more such members from each of the following categories: (A) Leading scientists or physicians with research expertise in the conditions described in subsection (a). (B) Patient advocates with a perspective on the conditions described in subsection (a). (3) Chairperson The members of the Commission shall select a chairperson from the members appointed under paragraph (2). (4) Meetings The Commission shall meet 3 times per year. (5) Vacancies A vacancy on the Commission shall be filled in the same manner as the original appointments. (c) Responsibilities The Commission shall evaluate and make recommendations, as appropriate, to the Director of NIH and Congress regarding— (1) the incidence, duration, and mortality rates of fibrotic diseases as described in subsection (a); (2) facilities and resources for the diagnosis, prevision, and treatment of fibrotic diseases described in subsection (a); and (3) a long-range plan for the use and organization of national resources to effectively advance research and effectively deal with fibrotic diseases as described in subsection (a), including— (A) comprehensive research plan, which prioritizes fibrosis opportunities that have cross-cutting value and require coordination across multiple national research institutes and centers; (B) topic-specific research recommendations for each organ or system as impacted by fibrotic diseases described in subsection (a); and (C) an overview of common themes and specific steps for implementation. (d) Operating plan Not later than 90 days after its first meeting the Commission shall— (1) submit to the Director of NIH and Congress an operating plan for carrying out the activities of the Commission as described in subsection (c). Such operating plan may include— (A) a list of specific activities that the Commission plans to conduct for purposes of carrying out the duties described in each of paragraphs (1) through (3) of subsection (c); (B) a plan for completing such activities; (C) a list of members of the Commission and other individuals who are not members of the Commission who will need to be involved to conduct such activities; (D) an explanation of involvement and coordination among the institutes and centers of the National Institutes of Health that is needed to conduct such activities; (E) a budget for conducting such activities; and (F) other information that the Commission determines appropriate. (e) Final report Not later than 2 years after the date of the Commission’s first meeting, the Commission shall submit to the Director of NIH and Congress a final report containing all of the findings and recommendations required under subsection (c). (f) Sunset The Commission shall terminate 60 days after submitting its final report, and not later than the end of fiscal year 2022.