Since mid-March, and after nudges from red-pilled Elon Musk and Oracle CTO Larry Ellison, Trump has been hawking the antimalarial drug hydroxychloroquine (sold under the brand name Plaquenil) as a coronavirus miracle cure despite little concrete evidence to support his claims. He is right about one thing, though. For many people with systemic lupus and rheumatoid arthritis, hydroxychloroquine is truly miraculous.
It has been for me. I’m one of those “with architecture primed for ruin,” in the words of poet Fady Joudah. Three and a half years ago, I was diagnosed with systemic lupus while teaching literature and creative writing in Kofu, Japan. The immune system of a person with lupus turns against her, attacking internal organs, joints, and/or skin; the disease is named after a rash common among its victims, said to resemble a wolf’s face.
In my case, having ignored severe joint pain, fatigue, and hair loss for nearly a year, I was so sick by the time I sought treatment that I had to be hospitalized for three weeks. Necrotic lymph nodes had fanned a 104-degree fever, which took that whole time to break. Meanwhile, inflammation around my lungs turned breathing into a contact sport—each deep inhale felt like fracturing a rib. My heartbeat was erratic, my liver was failing, and I dropped twenty-five pounds. Even after my doctor sent me home, it was several weeks before I could get out of bed without my husband’s help and another month before I could walk more than one block.
Hydroxychloroquine not only saved my life but helped me thrive. Initially, I was placed on far more punitive drugs: Prednisone and Cellcept, a chemotherapy drug also used after transplants to discourage organ rejection. (A recent New Yorker profile revealed that Dr. Anthony Fauci, this moment’s voice of reason, was instrumental in initiating the practice of treating diseases like lupus with low doses of chemotherapy drugs.) These medications beat my immune system into submission but took their toll, leaving me susceptible to bone loss, high blood pressure, and any and all infections. Initially, my Japanese doctor was reluctant to switch me over to hydroxychloroquine, thinking it might not be strong enough to tame the savage beast inside me. But four months into my recovery, we tried it, and even after he phased me off Prednisone, my lupus activity remained stable. It has stayed that way for the past three years. I’m asymptomatic and feel great. I teach at two universities and am physically active. Sometimes I’m tired, but one doctor kindly assured me that’s just what it’s like to be in one’s 40s.
Over the past two months, however, and like millions of others with autoimmune diseases, I’ve had to face the prospect of a near future without my savior. I now live on Vancouver Island in British Columbia, and when I first heard Trump touting hydroxychloroquine in March, I immediately called my Canadian rheumatologist to ask if I should be prepared for shortages. A smart man with an enviable immunity, thanks to his birth, to the contagious insanity of American politics, he told me to ignore Trump and take a walk among the hyacinths instead.
I was right to worry, though. On April 1, The Hill and other publications reported that the FDA was already noting shortages of hydroxychloroquine, and the Lupus Foundation of America began calling on patients and advocates to write to their government representatives for help as the hashtag #WithoutMyHCQ trended.
The irony of this attack on lupus patients’ drug stores is crueler than most. People with lupus have already been stripped of their most fundamental protection: their own immune system. By the nature of our disease, we are at the mercy of our own bodies. We’re vulnerability incarnate, uncertainty embodied. Self-destruction with a backbone and a soul.
That our ranks overflow with women of color feels, like our distinctive “butterfly” rash that sweeps the cheeks and in between, just too on-the-nose. Ninety percent of America’s 1.5 million lupus patients are women, and the disease is estimated to be two to three times more prevalent among people of color. (Indeed, if you google “lupus,” one of the first prompts is “Can white people get lupus?”) Among black and Hispanic women ages 15-24, systemic lupus is the fifth-leading cause of death in the United States.
Women of color tend to have a harsher disease course than Caucasians like me and worse outcomes, and some have faced racial bias from their health care providers to boot. In Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, Maya Dusenbery records the story of an African American professor with lupus who was only able to access much-needed pain medication once she started using her title on hospital forms. Her race made her a junkie in the eyes of ER staff; her doctorate transformed her back into a woman in pain and in need of care. No one has ever questioned my pain in that way.
Trump’s promulgation of a hydroxychloroquine cure for the novel coronavirus is likely to worsen these imbalances in outcomes and treatment even as COVID-19 is decimating African American communities across the United States. In fact, depraved metrics are already designating some unlucky women as offerings for political gods. Near the end of March, a 45-year-old female lupus sufferer from the Los Angeles area received a letter from Kaiser Permanente explaining that they would no longer be refilling her hydroxychloroquine prescription as the medicine was being earmarked for COVID-19 victims. The letter thanked her, saying “your sacrifice may actually save lives,” as if the medication weren’t already preserving her own. That statement was sick with lies, for a sacrifice is something you willingly make, and for good reason. This decision to rob her of her needed medication was, at its root, a betrayal of a human being for the sake of political spin. No one is paying attention to the death toll from lupus, but the Trump administration knows reelection depends on curbing the current pandemic and its consequences. So the lupus patient is left behind, the proverbial tree—or wolf—falling in the forest.
Still, it does not feel like a coincidence that so many of us who are now supposed to “sacrifice” ourselves are women, and so many women of color. I wonder if Trump ever voiced the word “lupus” before recent press conferences, and I’d be amazed if he knew much about its cohort. But I wouldn’t be surprised if someone in his administration has figured out that lupus patients are a particularly disenfranchised population. Our protests should not trouble them much.
So lupus patients who rely on hydroxychloroquine are now in danger on two fronts. First, disruption to supply will make us vulnerable to flares; even going two weeks without the drug raises that risk significantly. In turn, flares will decrease our resistance to the coronavirus. People like me who are able to keep disease activity stable while on hydroxychloroquine must often go on harsher medications like Prednisone and Cellcept during flares, which compromise our immune system more severely than the milder hydroxychloroquine.
This is only one of several dark truths behind Trump’s you-have-nothing-to-lose-by-taking-it lie: There is a cost to real women, to vulnerable and frightened bodies. We have only been made more vulnerable since his government and others began hoarding the drug supply. On April 4, Trump announced that the U.S. had secured 29 million tablets. Private citizens have started to follow suit in snatching it up. San Diego physician Jennings Staley, who was arrested in April for flogging “the COVID-19 Concierge Medicine Pack,” had smuggled a tank of the drug out of China.
Governments and shady doctors are going to such lengths even though there is no conclusive evidence that hydroxychloroquine does treat COVID-19 effectively. More studies are needed, and anecdotes cannot substitute for double-blinded, randomized controlled trials. Nevertheless, on May 18, Trump announced that he was taking a pill a day of “the hydroxy” because, you know, fuck science (and syllables).
Even if clinical trials do prove its ability to prevent or mitigate the effects of COVID-19—and I very much hope they do—hydroxychloroquine will have to be prescribed carefully because it can have serious side effects. (Nancy Pelosi was quick to remind Trump that his obesity placed him in a high-risk pool for them.) Recently, a Brazilian drug trial that used high doses of hydroxychloroquine to treat COVID-19 had to be stopped after several test subjects developed abnormal heart rates, and some coronavirus patients at a VA hospital in the U.S. died faster when treated with it. Because of this danger, the FDA warned against the use of hydroxychloroquine outside of hospital settings on April 24. Taking it without a prescription is yet more perilous; in the past month or two, people in the United States and Nigeria have accidentally poisoned themselves with various forms of chloroquine. For now, I’m tolerating hydroxychloroquine, but once a year I must get my eyes checked because of the risk for retinal toxicity while on the drug. If I’m not careful, the medication that saves my body could destroy my eyes.
Recent events suggest that Trump and his court have been blinded by the drug and its hope-in-a-bottle. I do get that we all need hope right now. But we also need to remember that a largely marginalized population is sharing that hope and clinging to that bottle for dear life.
Here in British Columbia, pharmacists will now only dispense a one-month supply of the drug and won’t fill prescriptions early. I think that’s fair, though nerve-racking. In early May, I got my first one-month refill. When I asked my pharmacist if I’d be able to refill the prescription again when I ran out in 30 days, he looked me in the eyes and said, “I don’t know.”
That’s also fair. After all, COVID-19 has ushered in a new normal in which all of us, not just lupus patients, are uncertainty embodied. But the bodies of lupus patients should not be forced to lose the little certainty they have due to false promises and political spin.