[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. 1239 Introduced in Senate (IS)]

113th CONGRESS
  1st Session
                                S. 1239

    To expand the research and awareness activities of the National 
 Institute of Arthritis and Musculoskeletal and Skin Diseases and the 
Centers for Disease Control and Prevention with respect to scleroderma, 
                        and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             June 27, 2013

Mrs. Gillibrand introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
    To expand the research and awareness activities of the National 
 Institute of Arthritis and Musculoskeletal and Skin Diseases and the 
Centers for Disease Control and Prevention with respect to scleroderma, 
                        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 Research and Awareness 
Act''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Scleroderma is a chronic, disabling and often fatal 
        autoimmune disease in which the body's soft tissues contract 
        and harden due to an overproduction of collagen.
            (2) Scleroderma causes damage to one or more of the body's 
        organ systems, including the skin, heart, lungs, kidneys, 
        gastrointestinal tract, and blood vessels.
            (3) It is estimated that 300,000 people in the United 
        States suffer from scleroderma, 80 percent of whom are women 
        often diagnosed during their child bearing years.
            (4) Choctaw Native Americans, African-Americans, and 
        Hispanics are disproportionately affected by scleroderma and 
        tend to exhibit more rapidly progressing and severe cases of 
        the disease.
            (5) The causes of scleroderma are unknown.
            (6) Scleroderma is associated with many other conditions 
        including pulmonary hypertension, gastroparesis, Raynaud's 
        phenomenon, Sjogren's Syndrome and lupus.
            (7) The estimated total annual economic impact of 
        scleroderma in the United States is in excess of 
        $1,500,000,000.
            (8) Annual Federal support for scleroderma research at the 
        National Institutes of Health is currently estimated at 
        $20,000,000.

SEC. 3. NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN 
              DISEASES; SCLERODERMA RESEARCH EXPANSION.

    (a) In General.--The Director of The National Institute of 
Arthritis and Musculoskeletal and Skin Diseases shall expand, 
intensify, and coordinate the activities of the Institute with respect 
to scleroderma, with particular emphasis on the following areas:
            (1) Research focused on the etiology of scleroderma and the 
        development of new treatment options.
            (2) Clinical research to evaluate new treatments options.
            (3) Basic research on the relationship between scleroderma 
        and secondary conditions such as pulmonary hypertension, 
        gastroparesis, Raynaud's phenomenon, Sjogren's Syndrome (and 
        other diseases as determined by the Director).
            (4) Establishment of scleroderma patient registries, 
        including family and childhood onset registries.
            (5) Support for training of new clinicians and 
        investigators with expertise in scleroderma.
    (b) Biennial Reports.--As a part of the biennial report made under 
section 403 of the Public Health Service Act (42 U.S.C. 283), the 
Secretary shall include information on the status of scleroderma 
research at the National Institutes of Health.
    (c) Authorization of Appropriations.--
            (1) In general.--For the purpose of carrying out subsection 
        (a), there are authorized to be appropriated $25,000,000 in 
        fiscal year 2014, $30,000,000 in fiscal year 2015, and 
        $35,000,000 in fiscal year 2016.
            (2) Reservations.--Of the amounts authorized to be 
        appropriated under paragraph (1), not more than 15 percent 
        shall be reserved for the training of qualified health 
        professionals in biomedical research focused on scleroderma.

SEC. 4. PROMOTING PUBLIC AWARENESS OF SCLERODERMA.

    (a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall carry out an 
educational campaign to increase public awareness of scleroderma. 
Print, video, and Web-based materials distributed under this program 
may include--
            (1) basic information on scleroderma and its symptoms;
            (2) information on the incidence and prevalence of 
        scleroderma;
            (3) diseases and conditions affiliated with scleroderma; or
            (4) the importance of early diagnosis and treatment.
    (b) Dissemination of Information.--The Secretary is encouraged to 
disseminate information under subsection (a) through a cooperative 
agreement with a national nonprofit entity with expertise in 
scleroderma.
    (c) Report to Congress.--Not later than September 30, 2013, the 
Secretary shall report to the Committees on Health, Education, Labor, 
and Pensions and Appropriations of the Senate and the Committees on 
Energy and Commerce and Appropriations of the House of Representatives 
on the status of activities under this section.
    (d) Authorization of Appropriations.--For the purpose of carrying 
out this section, there is authorized to be appropriated $2,500,000 for 
each of fiscal years 2014, 2015, and 2016.
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