I 
114TH CONGRESS 
1ST SESSION H. R. 3666 
To coordinate and advance fibrosis research activities at the National 
Institutes of Health, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
OCTOBER 1, 2015 
Mr. KING of New York (for himself, Mrs. CAPPS, Mr. RANGEL, Ms. NORTON, 
and Mr. CROWLEY) introduced the following bill; which was referred to 
the Committee on Energy and Commerce 
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 Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Scleroderma and Fi-
brosis Research Enhancement Act of 2015’’. 
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. 
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(2) About 100,000 Americans have systemic 
sclerosis, which causes fibrosis (very similar to scar-
ring where excess connective tissue is created). The 
symptoms of scleroderma vary greatly for each per-
son, 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 af-
fected. 
(3) Nearly 45 percent of all deaths in the devel-
oped 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 applica-
ble 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 Na-
tional Institutes of Health currently support re-
search 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, collabo-
rative, and systematic approach to studying fibrosis. 
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SEC. 3. NATIONAL COMMISSION ON SCLERODERMA AND FI-
BROSIS RESEARCH. 
(a) ESTABLISHMENT.—Not later than 1 year after 
the date of enactment of this Act, the Director of the Na-
tional Institute of Arthritis and Musculoskeletal and Skin 
Diseases, acting jointly with the Director of the National 
Institutes of Health, shall establish a National Commis-
sion 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 the 
Congress a long-term plan on opportunities and 
challenges in scleroderma and fibrosis research. 
(2) RECOMMENDATIONS ON RESEARCH OPPOR-
TUNITIES.—The plan under paragraph (1) shall in-
clude recommendations on relevant research oppor-
tunities over the next decade, including— 
(A) a comprehensive research plan which 
prioritizes fibrosis research opportunities that 
have cross-cutting value and require coordina-
tion across multiple institutes and centers of 
the National Institutes of Health; 
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(B) topic-specific research recommenda-
tions 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 es-
tablish working groups— 
(1) to consider the various organs and systems 
impacted by fibrotic illness; and 
(2) to formulate the topic-specific research rec-
ommendations under subsection (b)(2)(B). 
(d) MEMBERSHIP.—The Commission shall be com-
posed of— 
(1) the Director of the National Institute of Ar-
thritis and Musculoskeletal and Skin Diseases (or 
the Director’s representative); 
(2) a representative of the Office of the Direc-
tor of the National Institutes of Health who can pro-
vide input on program coordination across the insti-
tutes and centers of the National Institutes of 
Health; 
(3) staff from institutes and centers of the Na-
tional Institutes of Health, as determined appro-
priate; and 
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(4) non-Federal medical experts and patient ad-
vocates 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 in-
stitutes and centers of the National Institutes of 
Health as appropriate to oversee and assist with 
such implementation; and 
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(3) report, as needed, to the advisory council of 
the National Institute of Arthritis and Musculo-
skeletal 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 Fibro-
sis Research under section 3; and 
(2) patient advocates and extramural research-
ers who can provide meaningful input on the rec-
ommendations and research opportunities identified 
in the long-range plan under section 3(b), particu-
larly individuals who are serving or have served on 
the National Commission on Scleroderma and Fibro-
sis Research under section 3. 
(d) MEETINGS.—The Director of the National Insti-
tute 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 
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Research under section 3, the Director of the National In-
stitute of Arthritis and Musculoskeletal and Skin Diseases 
shall submit to the Congress a report on implementation 
of the long-range plan under section 3(b). 
Æ 
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