[Congressional Record (Bound Edition), Volume 149 (2003), Part 7]
[Senate]
[Page 8611]
[From the U.S. Government Publishing Office, www.gpo.gov]




 SENATE CONCURRENT RESOLUTION 33--EXPRESSING THE SENSE OF THE CONGRESS 
                         REGARDING SCLERODERMA

  Mr. CRAIG (for himself and Mr. Reid) submitted the following 
concurrent resolution; which was referred to the Committee on Health, 
Education, Labor, and Pensions:

       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 Federal Government has a responsibility to promote 
     awareness regarding scleroderma, to adequately fund research 
     projects regarding scleroderma, and to continue to consider 
     ways to improve the quality of health care services provided 
     for scleroderma patients, including making prescription 
     medication more affordable;
       (4) the National Institutes of Health should continue to 
     play a leadership role in the fight against scleroderma by--
       (A) working more closely with private organizations and 
     researchers to find a cure for scleroderma;
       (B) funding research projects regarding scleroderma 
     conducted by private organizations and researchers;
       (C) holding a scleroderma symposium which would bring 
     together distinguished scientists and clinicians from across 
     the United States to determine the most important priorities 
     in scleroderma research;
       (D) supporting the formation of small workgroups composed 
     of experts from diverse but related scientific fields to 
     study scleroderma;
       (E) conducting more genetic, environmental, and clinical 
     research regarding scleroderma;
       (F) training more basic and clinical scientists to carry 
     out such research; and
       (G) providing for better dissemination of the information 
     learned from such research; and
       (5) the Centers for Disease Control and Prevention should 
     give priority consideration to the establishment of a 
     national epidemiological study to better track the incidence 
     of scleroderma and to gather information about the disease 
     that could lead to a cure.

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