Q: What are you telling patients or parents about the potential risks of COVID-19 or symptoms to watch for? What are their chief concerns, including access to care for medications?
From a parent’s or teenage patient’s point of view, the fact that they’re on immunosuppressant drugs to control their disease makes them scared right now. Parents are worried that if they go outside to run errands, such as a trip to the grocery store, they will bring disease back into their homes. There’s a lot of fear and uncertainty. What we have been telling people is that if your child has a fever, body aches, loss of taste or smell, cough, or any respiratory or gastrointestinal distress, call your doctor to discuss immediately.
Access to medications is also a concern. When all the press came out about hydroxychloroquine, we started getting a lot of calls from families that pharmacies were having shortages of the drug. Children with lupus could only get a one to two-week supply at a time. Another big worry is that this type of shortage could happen with biologics, such as tocilizumab and others being studied as possible COVID-19 treatments. Also, I had a parent tell me the alcohol swabs they use to clean the skin prior to weekly methotrexate injections was out of stock at many stores. We have been encouraging families to fill their prescriptions in a timely manner to avoid running out of medications.
Q: How are the pandemic and social distancing affecting you and your family personally?
During these times, all of us have to adjust to a new normal. I am planning my shopping in advance to reduce the number of outings. I am also doing more shopping online and conserving the supplies I have.
Susan Bernstein is a freelance journalist based in Atlanta.
