• Sarah Schafer, MD

Medical and scientific initiatives

Updated: May 21, 2021

The key to better care!

I encourage everyone to listen to the May 19, 2020, Sjogren’s Foundation Town Hall presentation by Kathy Hammitt and Steve Taylor. These Sjogren’s Foundation (SF) projects lay out a vital pathway to better Sjogren’s care. Much of this work would normally be done by a professional society such as the American College of Rheumatology (ACR). The SF stepped up to the plate because Rheumatology leadership, especially the ACR, has consistently fallen short when it comes to Sjogren’s.

It is hard to grasp how labor-intensive these projects are. They require a high level of knowledge about Sjogren’s and research methods. Kathy Hammitt and the SF team, including numerous volunteer clinical experts, have done an amazing job pulling all of this together.

Sjogren’s is still misunderstood by many clinicians to be a nuisance dryness disease, despite overwhelming evidence that it is a serious, and occasionally life-threatening, multi-system disease.

Five key areas will help bring Sjogren’s care into the 21st century.

1. better tests for diagnosis and disease monitoring;

2. new treatments that address the systemic nature of Sjogren’s;

3. Clinical Practice Guidelines (CPGs) that standardize patient care;

4. updated ICD-10 codes that reflect the reality of Sjogren’s as a systemic disease;

5. clinician education that reflects current understanding of Sjogren's as a serious, systemic disease. Medical education about Sjogren's remains woefully inadequate.

The SF addresses these key areas, each involving an impressive array of projects. They work with the NIH, international scientific groups, pharmaceutical companies, and academic researchers to promote and standardize research. Patients can support these efforts by enrolling in studies as well as by providing financial support to the Foundation. Breakthroughs in testing and/or treatments are critical. When clinicians have better tools, they tend to pay much more attention to a disease.

The fifth key area, Clinician Education, is a place where patients can have a tremendous impact right now. I know from Smart Patients that many of us have inspired our own clinicians, especially PCPs, to learn about Sjogren’s.

577 views0 comments