Sjogren's Syndrome Foundation testifies on Capitol Hill



On March 14, 2001, Sjogren’s syndrome patient Kim Vaughn and Dr. Stuart Kassan testified before the U.S. House of Representatives Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Kim Vaughn is a mother of two boys, model, and former Mrs. Georgia America. Sjogren’s Syndrome is a disease that “doesn’t show”. You wouldn’t be able to tell, by looking at Kim, that she has a debilitating disease. But she told congressional members that her pain and suffering are real, and this disease has not only affected her life, but it has affected the lives of every member of her family.

Dr. Stuart Kassan is a MD and clinical professor of medicine at the University of Colorado Health Sciences Center in Denver. And past chair of the Sjogren’s Syndrome Foundation’s Medical and Scientific Advisory Board. He provided the hard facts about Sjogren’s syndrome and discussed the opportunities at the National Institutes of Health (NIH) for research to help the 2 to 4 million Americans who have this disease. Most of those are women of middle age and older, although anyone can have Sjogren’s. It can cross all age, sex, racial and socioeconomic boundaries.

A first and important step by Congress was establishing the Autoimmune Diseases Coordinating Committee at the National Institutes of Health or NIH. This committee is especially important for a disease such as Sjogren's syndrome, which crosses many specialties and institutes. In fact, some aspect of Sjogren's research could legitimately be covered by almost every one of the institutes at NIH

Dr. Kassan asked the committee to encourage NIH to increase its attention to Sjogren’s syndrome. Sjogren's is considered one of the most prevalent autoimmune diseases, is an ideal scientific model, and yet over and over again it is ignored.

The Foundation is working to change the visibility of and attention for Sjogren's syndrome, and hopes after its testimony that committee members of the Subcommittee on Labor, Health and Human Services, Education and Related Agencies, will recognize the importance of this disease.

Finally, Dr, Kassan urged congressional members to consider research costs not just in dollars, but the human cost, the tremendous burden of disease on families, and especially the specific burden of a prevalent and devastating disease --Sjogren's syndrome.

WATCH for more information on www.sjogrens.org