Title: National Commission on Scleroderma and Fibrotic Diseases Act of 2019
Policy area: Health

Summary:
National Commission on Scleroderma and Fibrotic Diseases Act of 2019
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.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 2477 Introduced in Senate (IS)]

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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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``National Commission on Scleroderma 
and Fibrotic Diseases Act of 2019''.

SEC. 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.
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