[Congressional Record Volume 148, Number 113 (Tuesday, September 10, 2002)]
[House]
[Pages H6146-H6147]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
EXPRESSING THE SENSE OF CONGRESS REGARDING SCLERODERMA
Mr. FOSSELLA. Mr. Speaker, I move to suspend the rules and agree to
the concurrent resolution (H. Con. Res. 320) expressing the sense of
Congress regarding Scleroderma, as amended.
The Clerk read as follows:
H. Con. Res. 320
Whereas scleroderma is a debilitating and potentially fatal
autoimmune disease with a broad range of symptoms which may
be either localized or systemic;
Whereas scleroderma may attack vital internal organs,
including the heart, esophagus, lungs, and kidneys, and may
do so without causing any external symptoms;
Whereas more than 300,000 people in the United States
suffer from scleroderma;
Whereas the symptoms of scleroderma include hardening and
thickening of the skin, swelling, disfigurement of the hands,
spasms of blood vessels causing severe discomfort in the
fingers and toes, weight loss, joint pain, difficulty
swallowing, extreme fatigue, and ulcerations on the
fingertips which are slow to heal;
Whereas people with advanced scleroderma may be unable to
perform even the simplest tasks;
Whereas 80 percent of the people suffering from scleroderma
are women between the ages of 25 and 55;
Whereas scleroderma is the 5th leading cause of death among
all autoimmune diseases for women who are 65 years old or
younger;
Whereas the wide range of symptoms and localized and
systemic variations of scleroderma make it difficult to
diagnose;
Whereas the average diagnosis of scleroderma is made 5
years after the onset of symptoms;
Whereas the cause of scleroderma is still unknown and there
is no known cure; and
Whereas the estimated annual direct and indirect costs of
scleroderma in the United States are $1,500,000,000: Now,
therefore, be it
Resolved by the House of Representatives (the Senate
concurring)
That it is the sense of the Congress that--
(1) private organizations and health care providers should
be recognized for their efforts to promote awareness of and
research on scleroderma;
(2) the people of the United States, including the medical
community, should make themselves aware of the symptoms of
scleroderma and contribute to the fight against scleroderma;
(3) the National Institutes of Health should continue to
take a leadership role in research efforts regarding the
fight against scleroderma and should allow for broad
dissemination of the information learned from such research;
and
(4) the Centers for Disease Control and Prevention should
consider additional methods to improve disease surveillance
of scleroderma.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New
York (Mr. Fossella) and the gentleman from Ohio (Mr. Brown) each will
control 20 minutes.
The Chair recognizes the gentleman from New York (Mr. Fossella).
General Leave
Mr. FOSSELLA. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days within which to revise and extend their
remarks and include extraneous matter on House Concurrent Resolution
320.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from New York?
There was no objection.
Mr. FOSSELLA. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I am pleased that the House is considering today House
Concurrent Resolution 320, introduced by the gentleman from Illinois
(Mr. Gutierrez) to raise awareness about a terrible disease,
Scleroderma. House Concurrent Resolution 320 was reported favorably by
the Committee on Energy and Commerce last week, and I encourage my
colleagues to express their support for the resolution on the floor
today.
Over 100,000 Americans are affected by Scleroderma, a chronic
connective tissue disease that is debilitating and potentially fatal.
Scleroderma is actually a symptom of a group of rare diseases that
involve the abnormal growth of connective tissue.
Scleroderma is derived from the Greek word sclerosis, literally
meaning hard skin. The symptoms include hardening and thickening of the
skin, swelling and disfigurement of the hands, weight loss, joint pain,
difficulty swallowing, as well as extreme fatigue.
With this wide range of symptoms, scleroderma is often difficult to
diagnose. For some patients, these diseases cause hard, tight skin; for
others, the problem is much greater, affecting blood vessels and
internal organs like the heart, lungs, and kidneys.
{time} 1230
Scleroderma affects people of all races and ethnic groups, men, women
and children. For some Americans affected by scleroderma, recovery
comes with time. For many others, there is no treatment that controls
or stops the progression effectively. While scientists at the National
Institute of Arthritis and Musculoskeletal and Skin Diseases continue
to learn more about scleroderma, unfortunately, they do not know
exactly what causes scleroderma, and there is still no cure.
The resolution before us today recognizes the work of private
organizations and health care providers to raise awareness about
scleroderma and encourages Americans to learn more about scleroderma.
The resolution encourages the National Institutes of Health to continue
to play a leadership role in discovering new treatments and
disseminating information learned from their research. Finally, the
resolution encourages the Centers for Disease Control and Prevention to
consider how to improve disease surveillance of autoimmune diseases,
including scleroderma.
Mr. Speaker, I encourage my colleagues to support the resolution.
Mr. Speaker, I reserve the balance of my time.
Mr. BROWN of Ohio. Mr. Speaker, I yield myself 2 minutes.
Mr. Speaker, we are considering an important resolution today
sponsored by my colleague, the gentleman from Illinois (Mr. Gutierrez).
I am pleased to be a co-sponsor of this legislation, which is intended
to raise the profile of scleroderma, a debilitating auto-immune disease
that affects around a third of a million Americans every year.
Diagnosis can be difficult in the early stages. Many symptoms of
scleroderma are common to or may overlap those of other diseases. The
disease is highly individualized. While scleroderma can show mild
symptoms in some, it can also deliver a more life-threatening prognosis
in others.
Scleroderma can show symptoms on the surface as in a skin rash or
disguise itself by affecting the organs, the muscles or blood vessels.
Diagnosis can require consultation with rheumatologists and
dermatologists, in addition to blood studies and specialized tests
depending on which organs are actually affected.
The Committee on Energy and Commerce last week passed this resolution
unanimously. I urge my colleagues to support it.
Mr. GUTIERREZ. Mr. Speaker, I am grateful that my bill, the Support
Scleroderma Research bill (H. Con. Res. 320) has been scheduled to be
considered in the suspension calendar today. The speed with which this
bipartisan bill has traveled from the committee mark-up to Floor
consideration is a testament to the importance of this bi-partisan and
non-controversial measure.
Seleroderma is a chronic, often progressive autoimmune disease in
which the body's immune system attacks its own tissues. The disease can
manifest itself in two forms: localized scleroderma, affecting the skin
and underlying tissue and systemic scleroderma, also known as systemic
sclerosis, a potentially life-threatening disease that attacks internal
organs including the lungs, heart, kidneys, esophagus and
gastrointestinal tract.
The wide range of symptoms and localized and systemic variations of
the disease make it especially hard to diagnose. In fact, the average
diagnosis is made five years after the onset of symptoms. Once
diagnosed, however, people with this incurable disease can only look
forward to symptomatic relief.
[[Page H6147]]
More than 300,000 Americans suffer from sclerodema. More than 80
percent of them are women between the ages of 25 and 65 years old.
Scleroderma is the 5th leading cause of death among all autoimmune
diseases for women under 65 years of age. The estimated annual direct
and indirect costs of scleroderma in the United States are
$1,500,000,000. In spite of these statistic and figures, we still don't
know what causes scleroderma and we have yet to find a cure for it.
My bill seeks to move a step closer to finding a cure by bringing
awareness to scleroderma and expressing our solid support for Federal
efforts to fight this disease. As marked up last Thursday by the full
Energy and Commerce Committee, this bill, among other things, expresses
the sense of Congress that the National Institutes of Health (NIH)
should continue to take a leadership role in research efforts regarding
the fight against scleroderma and should allow for broad dissemination
of the information learned from such research. The also believe that
the Centers for Disease Control can, should, and must play a role
regarding methods to improve disease surveillance of scleroderma.
Ideally, I believe that NIH should continue to play a leadership role
in the fight of scleroderma by working more closely with private
organizations and researchers and by funding research projects
regarding scleroderma conducted by private organizations and
researchers. I also urge NIH to hold a scleroderma symposium to bring
together distinguished scientists and clinicians from across the U.S.
to determine the most important priorities in scleroderma research and
to support the formation of small workgroups composed of experts from
diverse but related scientific fields to study this disease.
I would like to thank Chairman Tauzin and Ranking Member Dingell for
their strong support for this resolution and their fast scheduling of
it. I would also like to thank my colleague on the other side of the
aisle, Congressman Christopher Smith of New Jersey, who has been a
consistent and strong supporter of all initiatives on behalf of finding
a cure for scleroderma, including an increase in Federal funding for
research on scleroderma as being conducted by the National Institutes
of Arthritis and Musculoskeletal Skin Disease. I would also like to
recognize the hard work of my Legislative Assistant, Annie Grace Toro,
on behalf of this bill.
Finally, I would like to thank the Scleroderma Foundation and the
Scleroderma Research Foundation for their dedication and hard work on
behalf of all individuals suffering from scleroderma.
Mr. BROWN of Ohio. Mr. Speaker, I yield back the balance of my time.
Mr. FOSSELLA. Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore (Mr. Quinn). The question is on the motion
offered by the gentleman from New York (Mr. Fossella) that the House
suspend the rules and agree to the concurrent resolution, H. Con. Res.
320, as amended.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of
those present have voted in the affirmative.
Mr. FOSSELLA. Mr. Speaker, on that I demand the yeas and nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the
Chair's prior announcement, further proceedings on this motion will be
postponed.
____________________