Pharmacists have reported an uptick in requests for hydroxychloroquine, an anti-malarial drug that’s believed to treat COVID-19. Experts suspect that doctors and dentists may be writing prescriptions for themselves or loved ones who would otherwise have no need for the drug – a scary prospect for those of us who rely on hydroxychloroquine to treat a chronic health condition.
I’ve been on hydroxychloroquine since 2014 for undifferentiated connective tissue disease (UCTD), an autoimmune disorder that, when untreated, made it difficult for me to function. (And, my symptoms were mild compared to two family members whose illnesses are more severe than mine.) The medication makes me nauseous and dizzy every day, and because there’s a small risk of irreversible damage to the retina with long-term use, I see an ophthalmologist for a special retinal exam every couple years. Still, my rheumatologist believed hydroxychloroquine was the best option for me because it tends to cause the fewest side effects – and it helps so much, it’s worth the risk.
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I’m even more worried for folks whose autoimmune diseases are so serious that a flare-up could require hospitalization.
As I write this, hydroxychloroquine is being tested for its efficacy in treating COVID-19 and is not yet considered a treatment for the virus. Of course, I hope it can help bring an end to this devastating pandemic, but in the meantime, anyone on hydroxychloroquine for an autoimmune disease like lupus or rheumatoid arthritis is understandably concerned that they’ll be able to unable to get a refill, with the medication already on back order for months at some pharmacies. I run out of medicine on April 12. I hope I’ll be able to refill my prescription then, but even the thought of not being able to worries me.
I don’t want to go back to the physical and emotional pain I experienced before I got treatment. I’m concerned that it would affect my ability to work and parent my girls, but I’m even more worried for folks whose autoimmune diseases are so serious that a flare-up could require hospitalization. I’m also lucky not to be immunocompromised. Some of the other medications for autoimmune disorders suppress the immune system, putting patients at even greater risk for viruses like COVID-19 – these are the last folks we want running from pharmacy to pharmacy to get their prescription right now.
Autoimmune disorders are more common in women and people of color. I can’t help but think this is one of the many ways COVID-19 will affect people differently based on their identity. With so many losing loved ones and livelihoods during this pandemic, these concerns might seem small – but they weigh heavily on people like me. It feels good to share that weight with you. That way, we don’t have to carry it alone.
