107th Congress

Scleroderma

H. Con. Res. 320

Background

Derived from the Greek words "sklerosis," meaning hardness, and "derma," meaning skin, scleroderma literally means hard skin. Though it is often referred to as if it were a single disease, scleroderma is really a symptom of a group of diseases that involve the abnormal growth of connective tissue, which supports the skin and internal organs. It is sometimes used as an umbrella term for these disorders. In some forms of scleroderma, hard, tight skin is the extent of this abnormal process. In other forms, however, the problem goes much deeper, affecting blood vessels and internal organs, such as the heart, lungs, and kidneys.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases is the lead Institute at the National Institutes of Health (NIH) that supports scleroderma research.

Provisions of the Legislation/Impact on NIH

H. Con. Res. 320 was introduced on February 2, 2002, by Representative Luis V. Gutierrez (D-IL). This legislation expressed the Sense of Congress regarding scleroderma, called on NIH to continue to play a leadership role in scleroderma research efforts, and allowed for broad dissemination of the information learned from the research.

S. Con. Res. 126 was introduced on June 27, 2002, by Senator Harry Reid (D-NV). This legislation expressed the Sense of Congress regarding scleroderma and called on NIH to continue to play a leadership role in the fight against scleroderma by carrying out the following activities:

H. Con. Res. 320 also called for 1) private organizations and health care providers to be recognized for promoting scleroderma awareness and research, 2) greater awareness of the symptoms of scleroderma and contributions to the fight against it, and 3) the Centers for Disease Control and Prevention (CDC) to consider additional methods of improving scleroderma disease surveillance.

• Working more closely with private organizations and researchers to find a cure for scleroderma
• Funding research projects on scleroderma conducted by private organizations and researchers
• Holding a scleroderma symposium to bring together distinguished scientists and clinicians from across the United States to determine the most important priorities in scleroderma research
• Supporting the formation of small work groups composed of experts from diverse but related scientific fields to study scleroderma
• Conducting more genetic, environmental, and clinical research on scleroderma
• Training more basic and clinical scientists to carry out such research
• Providing for better dissemination of the information learned from such research.

S. Con. Res. 126 also called for 1) private organizations and health care providers to be recognized for promoting scleroderma awareness and research, 2) greater awareness of the symptoms of scleroderma and contributions to the fight against it, 3) the Government to promote scleroderma awareness, adequately fund scleroderma research projects, and continue to consider ways to improve the quality of health care services for scleroderma patients, and 4) CDC to give priority to establishing a national epidemiologic study to better track and gather information about scleroderma.

Status and Outlook

H. Con. Res. 320 was introduced on February 2, 2002, and was referred to the House Energy and Commerce Committee. The resolution was marked up, amended, and reported out of the House Energy and Commerce Committee on September 5. The House passed the resolution by a vote of 369 to 2 on September 10, and it was referred to the Senate Health, Labor, Education and Pensions Committee on September 11.

S. Con. Res. 126 was introduced on June 27, 2002, and was referred to the Senate Health, Education, Labor and Pensions Committee.

There was no further action on this legislation during the 107th Congress.