National Oral Health Testimony

The Sjögren's Syndrome Foundation is pleased to offer comments on the Surgeon General’s National Oral Health "Call to Action." The Sjögren's Syndrome Foundation, a not-for-profit voluntary health agency, strives to make a difference in the lives of people with Sjögren's syndrome and their families. We deliver support and education for these people and raise both public and medical professional awareness about this chronic, serious autoimmune disease.

"Sjögren's syndrome, a multi-system chronic inflammatory disease of the exocrine glands, imposes a significant impact on oral health" (Ibtisam Al-Hashimi, DDS, PhD, October 2001 Texas Dental Journal). Sjögren's occurs when white blood cells attack and destroy the body’s moisture-producing glands, causing decreased production of saliva and tears. The reduction of saliva can cause difficulty swallowing and chewing; mouth sores; increased dental caries, periodontal disease, and opportunistic infections; and gastrointestinal disorders. As many as 4,000,000 Americans, 90% of them women, suffer from this disease, in which the natural protective mechanisms of saliva are greatly reduced. Sjögren's patients require frequent dental visits and may need special dental care at home.

We strongly agree with the Surgeon General’s statement that all Americans can benefit from the development of a National Oral Health Plan, and we pledge our support to helping make this a reality. We also agree with the majority of the major findings of the May 2000, "Oral Health in America: A Report of the Surgeon General," but take exception to the statement that "safe and effective measures exist to prevent the most common dental diseases – dental caries and periodontal diseases." While this may be true for the general population, it is not the case for people with Sjögren's, one of the most common autoimmune diseases.

The Sjögren's Syndrome Foundation stands ready to offer assistance with two of the seven action elements:

• Change perceptions regarding oral health and disease so that oral health becomes an accepted component of general health



• Strengthen and expand oral health research and education capacity

Change Perceptions

Public
Every year approximately 300,000 people seek information from the Sjögren's Syndrome Foundation. We provide information about Sjögren's, including the oral health implications, both on our website and in written materials sent in response to queries. This information includes strong statements about the systemic nature of this disease and how the xerostomia ("dry mouth") associated with Sjögren's affects general health. We are preparing special pamphlets on the oral health complications of Sjögren's syndrome and will be pleased to work with staff from the Health and Human Services (HHS) and the National Institute of Dental and Craniofacial Research (NIDCR) to ensure that the Surgeon General’s messages are included. We recognize that "health literacy" is a significant issue with the development of these materials and plan to seek assistance in this matter. Advice from HHS is most welcome.

Additionally, we are planning a series of regional seminars to educate patients and their families about Sjögren's syndrome and treatments. We will be pleased to incorporate HHS messages in these programs.

Health Providers
The Sjögren's Syndrome Foundation is strengthening its liaison activities with professional societies representing dentists, dental technicians, and dental educators and will communicate about the need to strengthen the dental school curriculum and continuing medical education programs to ensure that interdisciplinary and comprehensive care are included. We would be pleased to discuss ways to coordinate our message with any delivered by HHS or other organizations that submit comments on this plan.

Policymakers
Sjögren's syndrome patients have much higher than average oral health care expenses, for visits to dentists’ offices, restorative dentistry, prescription products, and non-prescription saliva substitutes and mouth gels. The Sjögren's Syndrome Foundation has placed on its policy agenda efforts to ensure that oral health services are included in comprehensive health programs, including Medicare and Medicaid, and that dental insurance programs provide reimbursement for this care. We also intend to seek clarification from the Internal Revenue service whether products prescribed by dentists and physicians that are available "over the counter" can be considered deductible medical expenses.

Strengthen Oral Health Research and Education

The Sjögren's Syndrome Foundation offers an award for "Excellence in Research" for poster presentations on Sjögren's syndrome research at professional meetings and commits that at least one will be offered at a dental meeting. In our announcements about this award, we will encourage presentations that strengthen the dental community’s understanding of the systemic nature of Sjögren's syndrome and the need for dental professionals to work as part of a comprehensive health care team. We also provide stipends to dental and medical school students interested in conducting Sjogren's related research under the guidance of a mentor and can commit that we will encourage the submission of applications from students.

We have joined with other health agencies and professional associations in encouraging policy makers to increase the federal investment in basic research. We plan to continue making this declaration and will begin in the next few years to sharpen our message about the need for both research and treatment by interdisciplinary groups. Specifically, we will continue advocating for funding for a registry of Sjögren's patients and a multi-center study of diagnostic criteria as well as diagnostic markers for disease susceptibility. These last two points will assist this action plan by helping promote understanding of the interaction of a genetically-based disease with environmental and behavioral variables.

Conclusion

The Sjögren's Syndrome Foundation applauds the Surgeon General for the formulation of the National Oral Health "Call to Action." We concur that it initiates the important public policy goal of establishing a vision and strategies to promote oral health and general health. We encourage the federal government to fund a registry of Sjögren's patients and multi-center studies of the diagnostic criteria as well as diagnostic markers for disease susceptibility.

As a voluntary health agency serving the needs of one of the largest populations affected by systemic disease characterized by oral health symptoms, we offer our assistance, as an example of a public-private partnership, to help

• change perceptions regarding oral health and disease and



• strengthen and expand oral health research and education capacity

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