Don’t Thank Me for My Sacrifice

After nearly two years of struggling through a lupus flare, I can’t get my hands on hydroxychloroquine, a drug that helps keep me alive.

Image description: The author’s collection of pill bottles, including hydroxychloroquine

Thank you for your “sacrifice,” a woman with SLE (Systemic Lupus Erythematosus) was told by her doctor after attempting to get a routine prescription refill last March. Her story was reported in a Buzzfeed News article. Reading it sent me into a panic. That’s because the medication she needed was hydroxychloroquine, the same one I’ve taken almost every day of my life since being diagnosed with SLE, aka lupus, over a decade ago. It’s an antimalarial drug that doctors give to patients with lupus and other rheumatic diseases because it helps suppress immune systems that attack healthy organs.

Closing my laptop on the article, I rushed to my kitchen table and tore open the packages of meds I received from Kaiser a few days earlier. I didn’t open them immediately because I trusted my health care providers. I was also in a whirlwind of finishing instruction for one academic term and moving all my materials online for the start of another one. Plus, I hadn’t received a message like the one embedded in the Buzzfeed article. In fact, I had no communication of any kind — not from my specialist, primary care physician or pharmacist. All I got were messages from Kaiser telling me to do such things as “eat well” and “keep that human connection.” None of these were helpful to me when I rummaged through the delivery — my lupus takes a lot of medication to contain — discovering that I was missing the hydroxychloroquine. I tried telling myself that there would be another delivery, but I also checked every single one of my containers, gathering up every pill and then counting them with fingers sweaty from nerves.

And that was how I learned from a Buzzfeed article that I might be in danger of having to survive without a medication that’s key to the management of my disease.

Just five days earlier everything looked rosier. I woke up to a story of Trump pronouncing hydroxychloroquine, and chloroquine, as “game changer[s]” in the treatment of COVID-19. Though normally mistrustful of his statements, which I get in second-hand snippets, I welcomed the news with cautious enthusiasm, assuming he was relaying recommendations by medical experts. Maybe that’s why I haven’t gotten sick, I…