In honor of Dry Eye Month, our focus this July is the Sjögren’s Foundation, an organization dedicated to supporting patients who live with Sjögren’s as well as educating physicians about and working toward developing treatments for the disease. I recently had the pleasure to speak with the organization’s President and CEO, Steven Taylor.

STEVEN TAYLOR,
PRESIDENT AND CEO, THE SJÖGREN'S FOUNDATION

Mr. Taylor, please tell us about your organization in terms of its history and direction.

The Sjögren’s Foundation was founded in 1983 by Elaine Harris, a patient who suffered from Sjögren’s and believed in providing support and education for other patients and their families. Today, it not only supports patients but also educates physicians and increases awareness of the disease. We have 66 chapters in the United States, and we offer many opportunities for people to get involved with the Foundation.

But most importantly, we focus on our vision: “To create a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren’s.” The Foundation’s mission is to 1) support Sjögren’s patients and their loved ones through education, resources, and services; 2) provide credible resources and education for healthcare professionals; 3) serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives; and 4) lead, encourage, and fund innovative research projects to better understand, diagnose, and treat Sjögren’s.

Sjögren’s Foundation also played an important role in building awareness of dry eye disease. The organization spearheaded the campaign to declare July Dry Eye Month and took the steps to have it written into the Congressional Record in 2005.

Tell us about any new developments in which Sjögren’s Foundation is involved.

Most recently, we changed our name from the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation and launched a new logo and new website at www.sjogrens.org . In medical terms, a syndrome is a collection of symptoms, signs (such as physical exam findings), and other abnormal test results. Sjögren’s is a specific autoimmune disease that causes specific problems and has characteristic lab results and biopsy findings. Because of this, we became the Sjögren’s Foundation on April 1, 2020.

We’ve also updated the International Classification of Diseases (ICD) coding for Sjögren’s to change how physicians document both appointments and the manifestations that patient experience. We’ve added seven subcategories and changed the main category to include Sjögren’s; these changes take effect in October 2020. We will also be updating our Sjögren’s clinical practice guidelines for physicians.

Finally, the organization has ongoing clinical trial work with major biopharmaceutical companies to develop a systemic therapy—a biologic that would treat the entire disease.

Tell us your vision for diagnosis and management of Sjögren’s in the short term (less than 5 years) and in the long term (20 years from now).

The Sjögren’s Foundation believes that eyecare providers are part of the first line of defense when it comes to diagnosing Sjögren’s; they’re critical in identifying patients who have dry eye disease along with other symptoms of fatigue, joint pain, dry mouth, etc.

The Foundation has a long-term focus on helping patients live with their dry eye from Sjögren’s and on developing more products that will help our patient population. A systemic therapy will help alleviate all of the symptoms; but, we will still need to keep eyecare providers updated and educated, because they see patients first and treat them over the long term. We know that 92% of our patients currently and regularly suffer from dry eye. Having eyecare providers serving in our leadership roles as well as on our medical board is critical long term to make a difference for all of our patients. CLS