Town Halls and COVID-19 updates
Updated: May 13, 2020
Many patients are finding the Sjogren’s Foundation (SF) Town Halls to be very helpful. To listen live, sign up with this link:.
To listen later, Town Hall recordings are available.
I highly recommend the upcoming May 19th Town Hall, featuring Kathy Hammitt. Kathy is a true Sjogren’s hero: without her leadership and unique skill set, we would not have the Clinical Practice Guidelines (CPGs). The SF ends up doing the heavy lifting that the ACR will not do.
Kathy has also been instrumental in collaborating the researchers. Because of this work, a number of drug trials are underway. Much of this goes on behind the scenes. The Town Hall will help you understand how important this is to patients.
It is obvious to patients that research is needed to find better treatments. Less obvious is the secondary benefit of having a new, effective medication for Sjogren's. Breakthrough disease treatments typically spark a flurry of medical education events. This in turn increases the interest and awareness around the disease. With Sjogren’s, this is desperately needed. Most Sjogren’s patients have a hard time finding clinicians who are engaged and up to date with Sjogren’s.
Highlights from the COVID-19 Town Hall with Steve Taylor, Sjogren's Foundation CEO, 4-27-20
1. There are no studies (yet) about COVID-19 in Sjogren’s patients. It is not known if the underlying immune dysfunction in Sjogren’s changes the susceptibility to or the severity of infection. Patients who take immune suppressants or who have other known risk factors should assume they are at increased risk.
2. Because Sjogren’s is a chronic systemic illness, all patients are encouraged to take precautions, especially social (physical) distancing, handwashing, and wearing masks.
3. It has not been determined yet if hydroxychloroquine (HCQ, aka Plaquenil) impacts COVID-19. HCQ is not an immune suppressant. The current recommendation is to continue taking it if you are on it. Thankfully, the drug shortage for HCQ has improved.
4. If you end up hospitalized or ill from COVID-19, be sure you or a family member tells your doctors (who are often unfamiliar with Sjogren’s) these key things:
· You have Sjogren’s. It is a serious systemic disease. · Lung involvement is common in Sjogren’s. This may increase the risk for complications.
While this was not discussed in the Town Hall, I recommend packing a “GO BAG” for the hospital. You probably don’t want to pack last minute if you become very ill. Be sure to include these items:
1. Advanced Health Care Directive- discuss this with your loved ones, especially about how you feel about being put on a ventilator.
2. List of current medications. Include your name, DOB, health plan ID, and when the list was last updated.
3. Short list of major medical conditions and complications. Even if your medical history is in the EHR, it can be good to have a brief list on a summary page.
4. Several weeks of supplies that the hospital may not have, including artificial tears, oral moisturizers, and medications that may not be in stock.