National Commission on Scleroderma and Fibrotic Diseases Act of 2019

Bill: 116-s-2477
Sponsor: full_name: Sen. Gillibrand, Kirsten E. [D-NY]
Introduced: 2019-09-12
Policy area: Health
Subjects: Advisory bodies

Congressional oversight

Government studies and investigations

Health programs administration and funding

Health promotion and preventive care

Medical research

Medical tests and diagnostic methods

Musculoskeletal and skin diseases

Organ and tissue donation and transplantation

Research administration and funding

Research and development
Latest action: action_date: 2019-09-12
text: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

Summaries:
action_date: 2019-09-12
action_desc: Introduced in Senate
text: <p><b>National Commission on Scleroderma and Fibrotic Diseases Act of </b><b>2019</b></p> <p>This bill temporarily establishes a National Commission on Fibrotic Diseases within the National Institutes of Health that must recommend improvements regarding fibrosis and fibrotic disease research.</p>

tv_txt: II 116th CONGRESS 1st Session S. 2477 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. Short Title This Act may be cited as the National Commission on Scleroderma and Fibrotic Diseases Act of 2019 . 2. National commission on fibrotic diseases research (a) Establishment There is hereby established, within the National Institutes of Health (referred to in this section as NIH ), 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 NIH-supported research activities related to fibrosis and fibrotic diseases, which may include scleroderma as a prototypical condition that can cause fibrosis in various organs. (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 the designees of such directors: (i) National Institute of Arthritis and Musculoskeletal and Skin Diseases. (ii) National Heart, Lung, and Blood Institute. (iii) National Institute of Diabetes and Digestive and Kidney Diseases. (iv) National Human Genome Research Institute. (v) Any other national research institutes or national centers with an active fibrotic disease research portfolio. (vi) Twelve additional voting members appointed under paragraph (2). (2) Additional members The Commission shall include additional voting members, as may be 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 and 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 at least 3 times a year, with the first meeting occurring not later than April 1, 2021. (5) Vacancies A vacancy on the Commission shall be filled in the same manner as the original appointment. (c) Responsibilities The duties of the Commission are the following: (1) To study the incidence, duration, and mortality rates of fibrotic diseases as described in subsection (a). (2) To evaluate facilities and resources for the diagnosis, prevention, and treatment of fibrotic diseases described in subsection (a). (3) To develop 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) a comprehensive research plan, which prioritizes fibrosis opportunities that have cross-cutting value and require coordination across multiple national research institutes and national 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. (4) To make recommendations, as appropriate, to the Director of NIH and Congress with respect to the study, evaluation, and long-range plan described in the preceding paragraphs of this subsection. (d) Operating plan Not later than 90 days after its first meeting, the Commission shall submit to the Director of NIH and the Congress an operating plan for carrying out the duties of the Commission as described in subsection (c). Such operating plan may include— (1) a list of specific activities that the Commission plans to conduct for purposes of carrying out the duties described in each of the paragraphs in subsection (c); (2) a plan for completing the activities; (3) 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; (4) an explanation of involvement and coordination of national research institutes and national centers needed to conduct such activities; (5) a budget for conducting such activities; and (6) 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 recommendation required by subsection (c). (f) Sunset The Commission shall terminate 60 days after submitting its final report, but not later than September 30, 2023.