[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.

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