[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2408 Introduced in House (IH)]
111th CONGRESS
1st Session
H. R. 2408
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 HOUSE OF REPRESENTATIVES
May 14, 2009
Mrs. Capps (for herself, Mr. Ehlers, Mr. Hinchey, Mr. Massa, Mr.
McGovern, Mr. Moore of Kansas, Mr. Murphy of Connecticut, Ms. Linda T.
Sanchez of California, Mr. Stearns, and Mr. Tonko) introduced the
following bill; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
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 2010, $30,000,000 in fiscal year 2011, and
$35,000,000 in fiscal year 2012.
(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, 2010, the
Secretary shall report to the Committee on Energy and Commerce of the
House of Representatives, the Committee on Health, Education, Labor,
and Pensions of the Senate, and the Committee on Appropriations of the
House of Representatives and the Senate 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 2010, 2011, and 2012.
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