I was 20-something and in my first professional job 17 years ago when I began to experience symptoms of lupus — the pain and swelling in my joints, the crushing fatigue, the low-grade fevers, the hair loss, the rash across my cheeks, and the painful breathing caused by pleurisy. It was a challenge to wash my hair or even open a bottle of water.
I was young and healthy and had neglected to find a primary care provider in the six months I had been living in a new city. I was busy with work and dismissive of the slowly emerging symptoms. When the pain became too much to ignore one night, I went to an urgent care clinic. They ran some tests, and I finally got a primary care doctor. It took awhile to get the diagnosis, and in the meantime, my doctor deduced I was suffering from some type of inflammatory illness and began to treat me with steroids, which helped. An extensive work-up at the Mayo Clinic led to the diagnosis of systemic lupus erythematous, and I was started on a drug they said would relieve my pain and protect my organs. I was diagnosed early in the disease, before organ damage, and this medication was supposed to safeguard against that outcome. It did. My symptoms vanished and I was back to feeling like my old self. Any doubts I may have had that it was the medication that relieved my symptoms disappeared when, two years later, an attempt to lower the dose resulted in a five-day hospitalization due to an infection, inflammation and concern for heart-valve damage.
The drug that helped me was called hydroxychloroquine, that anti-malaria drug with which the whole world is quickly becoming familiar. President Donald Trump said in a news conference last week that it was a “game-changer” in the fight against the coronavirus, and he repeated the assertion on Saturday in a tweet, promoting its use with azithromycin.
Hydroxychloroquine is a medication commonly used to treat lupus and rheumatoid arthritis and has been shown to be efficacious in off-label treatment of other autoimmune diseases, preventing organ failure, progression of disease and possibly even death in some patients.
When anecdotal news hit the airwaves that it potentially offered some benefit for COVID-19 patients, there was a sudden spike in interest and, according to media and first-person pharmacist reports, a spike in prescriptions as well. The troubling aspect is that many of these prescriptions didn’t represent use in a hospital setting, nor for clinical trials, but rather for speculative personal use due to fear of COVID-19.
I can understand that fear. In the midst of a global pandemic that has upended our lives and threatened our livelihoods, cherished routines and everyday interactions, anxiety is widespread. It’s a normal response to the uncertainty in the world right now. It’s understandable to want to cling to promising strides in our battle against this public health menace. But panicked and impulsive use of untested medications carries its own consequences, including potentially dangerous side effects. An Arizona man and his wife tried to self-medicate, drinking a solution including fish tank cleaner with the same active ingredient. The man died and his wife became critically ill. Hydroxychloroquine even as manufactured for humans has not yet been fully vetted as a treatment option for the coronavirus, yet the benefits have been touted widely, possibly even exaggerated, without any attention given to the potential detrimental effects, some of which are already well-documented from previous, unrelated trials.
This irresponsible lack of balance in introducing the medication to the public has led to a much greater demand than is warranted; a purchasing organization for 4,000 U.S. hospitals reported that the hospitals ordered 16,000 bottles of hydroxychloroquine — more than twice the usual amount — in the first half of March. Consequently, there’s a shortage (I won’t need a refill for another three weeks), despite no peer-reviewed clinical evidence of its efficacy in treating this illness.
I’m a doctor, but my specialty is psychiatry, not rheumatology. I am speaking only for myself as a lupus patient with a physician’s knowledge of medicine when I offer these cautions. Further, I welcome the research. I hope it’s proved that hydroxychloroquine is as therapeutic for COVID-19 as it is for lupus. Gov. Andrew Cuomo of New York, which has the greatest concentration of the coronavirus in the United States, announced the immediate start of clinical trials to test the drug’s value in treating COVID-19.
But in the meantime, people should be aware that experimental use doesn’t come without risks, and increased prescriptions for a theoretical prophylactic benefit endangers the national supply, jeopardizing the health of patients, like me, who need this medication to survive.
Kayla Behbahani is an associate psychiatrist at Brigham and Women’s Hospital and an instructor in psychiatry at Harvard Medical School. She wrote this article for the Washington Post.