Last spring, after years of digging for answers, I was diagnosed with systemic lupus erythematosus. My lupus triggers inflammation from the smallest blood vessels in my fingers to a stiff hot ache throughout my body to, for no reason my doctors can figure out, swelling in my chest and upper airway. But my charts say I have a mild form of the disease because it hasn’t gotten to my organs yet, and to keep it mild, to keep the inflammation out of my kidneys and lungs and heart, I take the antimalarial drug hydroxychloroquine. I’ve been on it seven months, and cautiously I say it’s working. My flares don’t knock me onto the couch for a day as much, and the freeing stretches between them are longer. The catch is that I’ll probably have to stay on HCQ for a really long time, maybe the rest of my life. There are risks, but so are pleurisy and kidney failure.
As the U.S. grapples to address the coronavirus, there’s an increase in research and approval in some countries of hydroxychloroquine as a treatment. There’s some good evidence, but also a whole lot of fast decision-making, panic, and misinformation. Like with toilet paper and hand sanitizer and basic food items that are being restocked every day, people have started hoarding HCQ for no good reason other than a false promise of a cure-all. Doctors and dentists are writing prescriptions for themselves and their family members, stockpiling enough of the drug to clear out pharmacy shelves.
Lupus and rheumatoid arthritis patients across the country are calling their pharmacies for a refill only to find there’s no HCQ left. They call other pharmacies only to hear the same thing—people are stocking up on the drug without it being approved by the FDA to treat COVID-19, despite what the president says in press conferences and in tweets. HCQ, against the inconclusive evidence of small-scale studies, has taken on an aura of immunity against the coronavirus, shoving aside those of us who live with autoimmunity every day.
I am angry. I’m angry at the otherwise healthy people for hoarding masks away from healthcare workers, at the people who are sitting at home with six months’ worth of necessities when low-income and elderly and at-risk people have none, at the people who have the choice but still defy social distancing and self-isolation because they only think about themselves. But when it comes to HCQ, I am terrified. I have nineteen pills left.
There’s always a chance things won’t be horrible, but I’m not planning for that right now. So here’s what would happen if I stop taking HCQ. I would go into a really bad flare, reversing all the benefits seven months of HCQ has built up in my system. The shock to my body might kick inflammation to my organs—kidneys, lungs, heart, brain. I would get very, very sick. And to mitigate this, I have a last-resort prescription of prednisone, which could stave off the flare at the expense of suppressing my immune system. I would be highly, highly at risk when it comes to the coronavirus.
Yesterday, I asked my rheumatologist to submit a request with Medicaid so I can get a 90-day supply of HCQ. My prescription is set to be filled in two days, and today I called my pharmacy asking if there was any way, any way at all I could get it filled sooner. “We have to wait for Medicaid to come through,” the pharmacist told me. “But I can put one bottle aside.” Her voice was assuring but tired. She told me their supply is decreasing, that doctors are sending in prescriptions that aren’t even filled out correctly. “We’re trying our best to keep these drugs for people like you who really need it,” she said.
This is a scary time, and I know it’s wired in our human brains to reach for easy answers when under intense stress. But right now, please take a step back. Don’t hoard anything, and especially don’t hoard HCQ, for the sake of me and for the millions of people in our country who are dependent on it to treat chronic autoimmune diseases. Don’t ask your doctor for a prescription of HCQ, and if you’re a doctor, don’t abuse your power.
Tell your friends. Tell your neighbors. Tell your family. Tell your congresspeople, your governor. Tell the president to stop tweeting about it. Thank your pharmacists.
Wash your hands. Stay home. And take care of one another.