National Oral Health Plan: Call to Action
Kim Vaughn Testimony 03.21.02
My name is Kim Vaughn, and I'm here today on behalf of the Sjögren's Syndrome Foundation.
I have Sjögren's syndrome - one of the most prevalent autoimmune diseases and one for which there are few treatments but devastating consequences for those of us who live with the disease.
I want to address the topic of strengthening and expanding oral health research and education, actions which will lead to improved care.
Why research?
The lives of 4 million Americans are affected by Sjögren's syndrome. We struggle every day with major quality of life issues. While Sjögren's can affect any part of the body, major targets are the moisture-producing glands, resulting in dryness everywhere and especially the mouth and eyes. A lack of saliva leads to rampant caries, loss of teeth, oral pain and infections, and hoarseness. This affects our nutrition, ability to chew, swallow, and digest food, sleep, talk, and travel. We are 44 times more likely than others to develop non-Hodgkins lymphomas that are mucosa-associated and often start in the salivary glands.
This disease was named over a hundred years ago, yet the first drugs developed for Sjogren's only came onto the market recently. These help increase the flow of saliva, but we need to learn so much more so we can treat the cause.
Why education?
Too many oral health specialists are unaware of Sjögren's syndrome, lack the knowledge to treat patients properly, and do not seem to understand the connection between oral health and overall health. Many dentists miss the opportunity to diagnose Sjögren's patients and provide early treatment. Did you know that it takes more than 6 years on average to obtain a correct diagnosis when someone has Sjögren's?
There are treatments to prevent many of the devastating oral complications of Sjögren's syndrome, but we count on our dentists and other health specialists to recognize those complications and provide us with knowledgeable help.
We must improve care:
Expenses can be overwhelming for families, even with insurance; Insurers often don’t allow for the dramatic increase in dental visits and treatments for someone with Sjögren's. Dentures don't work in a dry mouth, dental implants are expensive and labor-intensive, and that's if someone has access to the procedure. The Sjögren's Syndrome Foundation will be working to help ensure that patients have access to affordable oral health. We ask for your assistance in this goal.
The Sjögren's Syndrome Foundation is doing its part to educate doctors, support patients, and encourage research. We extend our offer in partnership with Health & Human Services to improve research and education opportunities for the many Americans who suffer from Sjögren's syndrome. In addition to needed research in basic science and clinical studies, we encourage allocation of federal resources for two key areas:
- Creation of a registry for Sjögren's syndrome patients, so we can learn from the genetic and natural history information that would be gathered
- Funding of a multi-center study of diagnostic criteria - The Sjögren's Syndrome Foundation has developed the first set of internationally-agreed-upon criteria for Sjögren's syndrome. Now it needs to be tested. Without a standard for Sjögren's, research cannot move forward.
With your help and inclusion of the needs of those with Sjögren's syndrome in the National Oral Health Plan's Call to Action, we will make a difference in the lives of 4 million Americans and their families. The Sjögren's Syndrome Foundation is ready and willing to join with HHS to help make that difference. Thank you.
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