SSF Urges More Attention to Sjogren's Syndrome

In written testimony submitted to the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, the Foundation described Sjögren’s syndrome, illustrated how it can affect lives, summarized current research efforts, and made five requests of Congress:

1. to encourage the National Institutes of Health (NIH) to recognize the need for Sjögren’s research and to support scientific workshops on Sjögren’s. According to researchers at NIH, the best way to increase interest for Sjögren’s research within the scientific community is to hold workshops with participants from related areas and on shared concerns.



2. to encourage the National Eye Institute (NEI) to pursue an epidemiology study on dry eye and Sjögren’s syndrome.



3. to help us ensure that the needs of the 4 million Americans with Sjögren’s syndrome are included in the implementation of the NIH Autoimmune Diseases Research Plan by supporting a registry of Sjögren’s syndrome, studies in epidemiology, and inclusion of Sjögren’s in the plan’s call for studies on genetics, basic research, clinical studies, and education.



4. to support the NIH Autoimmune Diseases Research Plan by providing the $400-450 million dollars a year needed to execute the plan, as described above.



5. to continue to support our request from the previous year that the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and National Institute of Allergy and Infectious Diseases (NIAID) include Sjögren’s as part of their mission and portfolio of grants.

The testimony explained that the Sjögren’s Syndrome Foundation funds initiatives that will increase the likelihood of more research, provides grants to private researchers, and has partnered and offered partnerships with NIH to increase interest in supporting Sjögren’s initiatives. We highlighted our success at developing the classification criteria on Sjögren’s and efforts to develop outcome measures based on these criteria and stated "our efforts - while significant - cannot bring about the major breakthroughs we need without federal help. That is why we are requesting that federal attention be directed toward research into the causes, treatments, and a cure for Sjögren’s syndrome."

Regarding the NIH Autoimmune Diseases Research Plan, we pointed out that "of the total amount (spent on research) for autoimmune disease, the majority has gone to just three autoimmune diseases: rheumatoid arthritis, juvenile diabetes, and multiple sclerosis," leaving little for the other 77 autoimmune disorders, including Sjögren’s, which is one of the most prevalent.

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