[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. 3431 Introduced in Senate (IS)]

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114th CONGRESS
  2d Session
                                S. 3431

To coordinate and advance fibrosis research activities at the National 
             Institutes of Health, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 28, 2016

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 coordinate and advance fibrosis research activities at the National 
             Institutes of Health, and for other purposes.

    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 ``Scleroderma and Fibrosis Research 
Enhancement Act of 2016''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) Scleroderma, or systemic sclerosis, is a chronic and 
        potentially fatal rheumatic autoimmune disease of the 
        connective tissue.
            (2) About 100,000 Americans have systemic sclerosis, which 
        causes fibrosis (very similar to scarring where excess 
        connective tissue is created). The symptoms of scleroderma vary 
        greatly for each person, and the effects of scleroderma can 
        range from very mild to life-threatening. The seriousness of 
        scleroderma depends on the parts of the body that are affected 
        and the extent to which they are affected.
            (3) Nearly 45 percent of all deaths in the developed world 
        are attributed to some type of chronic fibroproliferative 
        disease. As scleroderma impacts multiple organ systems, 
        systemic sclerosis can be considered as a prototypical disease 
        for study, and any insights into its causes are likely to be 
        applicable more broadly to other forms of organ fibrosis and 
        fibrotic illnesses (such as pulmonary fibrosis and liver 
        fibrosis).
            (4) Various institutes and centers of the National 
        Institutes of Health currently support research into forms of 
        fibrotic illness, but there is little coordination and limited 
        cross-cutting opportunity between these research portfolios. 
        Much scientific progress will be gained by taking a broad, 
        collaborative, and systematic approach to studying fibrosis.

SEC. 3. NATIONAL COMMISSION ON SCLERODERMA AND FIBROSIS RESEARCH.

    (a) Establishment.--Not later than 1 year after the date of 
enactment of this Act, the Director of the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases, acting jointly with 
the Director of the National Institutes of Health, shall establish a 
National Commission on Scleroderma and Fibrosis Research (in this 
section referred to as the ``Commission'') to develop the long-term 
plan under subsection (b).
    (b) Long-Term Plan.--
            (1) In general.--Not later than 18 months after the date of 
        establishment of the Commission, the Commission shall develop 
        and submit to Congress a long-term plan on opportunities and 
        challenges in scleroderma and fibrosis research.
            (2) Recommendations on research opportunities.--The plan 
        under paragraph (1) shall include recommendations on relevant 
        research opportunities over the next decade, including--
                    (A) a comprehensive research plan which prioritizes 
                fibrosis research opportunities that have cross-cutting 
                value and require coordination across multiple 
                institutes and centers of the National Institutes of 
                Health;
                    (B) topic-specific research recommendations for 
                each organ or system; and
                    (C) an overview of common themes and specific steps 
                for implementation of scleroderma and fibrosis 
                research.
    (c) Working Groups.--The Commission shall establish working 
groups--
            (1) to consider the various organs and systems impacted by 
        fibrotic illness; and
            (2) to formulate the topic-specific research 
        recommendations under subsection (b)(2)(B).
    (d) Membership.--The Commission shall be composed of--
            (1) the Director of the National Institute of Arthritis and 
        Musculoskeletal and Skin Diseases (or the Director's 
        representative);
            (2) a representative of the Office of the Director of the 
        National Institutes of Health who can provide input on program 
        coordination across the institutes and centers of the National 
        Institutes of Health;
            (3) staff from institutes and centers of the National 
        Institutes of Health, as determined appropriate; and
            (4) non-Federal medical experts and patient advocates 
        representing the various manifestations of scleroderma and 
        fibrosis, as determined necessary to form effective working 
        groups under subsection (c).
    (e) Termination.--The Commission shall terminate not later than 2 
years after the date of its establishment.

SEC. 4. SCLERODERMA AND FIBROSIS WORKING GROUP.

    (a) Establishment.--Not later than 180 days after the development 
and dissemination of the long-term plan under section 3(b), the 
Director of the National Institute of Arthritis and Musculoskeletal and 
Skins Diseases shall create a working group, to be known as the 
Scleroderma and Fibrosis Working Group (in this section referred to as 
the ``Working Group'').
    (b) Responsibilities.--The Working Group shall--
            (1) oversee and assist with the implementation of the 
        recommendations and research opportunities identified in the 
        long-term plan under section 3(b);
            (2) coordinate with the Office of the Director of the 
        National Institutes of Health and the various institutes and 
        centers of the National Institutes of Health as appropriate to 
        oversee and assist with such implementation; and
            (3) report, as needed, to the advisory council of the 
        National Institute of Arthritis and Musculoskeletal and Skin 
        Diseases.
    (c) Membership.--The Working Group shall be composed of--
            (1) representatives of the institutes and centers at the 
        National Institutes of Health with active or planned research 
        projects in scleroderma or fibrosis, particularly staff who are 
        serving or have served on the National Commission on 
        Scleroderma and Fibrosis Research under section 3; and
            (2) patient advocates and extramural researchers who can 
        provide meaningful input on the recommendations and research 
        opportunities identified in the long-range plan under section 
        3(b), particularly individuals who are serving or have served 
        on the National Commission on Scleroderma and Fibrosis Research 
        under section 3.
    (d) Meetings.--The Director of the National Institute of Arthritis 
and Musculoskeletal and Skin Diseases shall convene the Working Group 
for a meeting at least 3 times each year.

SEC. 5. REPORT TO CONGRESS.

    Not later than 2 years after the date of establishment of the 
National Commission on Scleroderma and Fibrosis Research under section 
3, the Director of the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases shall submit to Congress a report on 
implementation of the long-range plan under section 3(b).
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