[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[S. Con. Res. 33 Introduced in Senate (IS)]







108th CONGRESS
  1st Session
S. CON. RES. 33

      Expressing the sense of the Congress regarding scleroderma.


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                   IN THE SENATE OF THE UNITED STATES

                             April 7, 2003

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

_______________________________________________________________________

                                 A BILL


 
      Expressing the sense of the Congress regarding scleroderma.

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 of 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 Senate (the House of Representatives 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.
                                 <all>