[Congressional Record (Bound Edition), Volume 148 (2002), Part 9]
[Senate]
[Pages 11714-11715]
[From the U.S. Government Publishing Office, www.gpo.gov]




  SENATE CONCURRENT RESOLUTION 126--EXPRESSING THE SENSE OF CONGRESS 
                         REGARDING SCLERODERMA

  Mr. REID (for himself, Mr. Craig, Mrs. Feinstein, and Ms. Stabenow) 
submitted the following concurrent resolution; which was referred to 
the Committee on Health, Education, Labor, and Pensions:

                            S. Con. Res. 126

       Whereas Scleroderma is a debilitating and potentially fatal 
     autoimmune disease with a broad range of symptoms that 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;

[[Page 11715]]

       Whereas Scleroderma is the fifth 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;
       Whereas Federal funding for Scleroderma research is less 
     than for other diseases of similar prevalence; 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 Senate (the House of Representatives 
     concurring), That it is the sense of Congress that--
       (1) private organizations and health care providers should 
     be recognized for their efforts to promote awareness and 
     research of Scleroderma;
       (2) the people of the United States should make themselves 
     aware of the symptoms of Scleroderma and contribute to the 
     fight against Scleroderma;
       (3) the Federal Government should promote awareness 
     regarding Scleroderma, adequately fund research projects 
     regarding Scleroderma within the fiscal budget, and 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 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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