Autoimmune disorders remain poorly understood. The general theory is that our bodies came into contact with a virus or bacteria that sent our immune systems into overdrive to combat infection, but our systems got confused and attacked healthy tissue, instead. There are no cures, only the medications that keep us going.
I have taken hydroxychloroquine for 14 years, since I was diagnosed at 26 with Sjogren’s syndrome, a systemic disease that causes dry eyes, dry mouth, crushing fatigue and joint pain. Sjogren’s can also damage a patient’s kidneys, liver, lungs, nerves, skin and joints.
In White House briefings last week, President Trump touted hydroxychloroquine as a game-changer and talked up its anecdotal promise as a treatment for covid-19. After I heard my medication mentioned on the news, I rushed to obtain a 90-day supply. A sympathetic pharmacist told me, “You’re exactly the person I want to get this medication to” — before breaking the news that pills are on back order and that I wasn’t authorized for a 90-day supply even with 11 monthly refills on file.
After hours on the phone with multiple pharmacies, my health insurer and my rheumatologist’s office, I received approval for a three-month supply of “maintenance medication” from a mail-order pharmacy. Already, the expected delivery date has been pushed back two days. I’ll believe the shipment when I see it.
Media reports indicate that patients nationwide are having difficulty filling prescriptions as hospitals stock up amid an uptick in doctors and dentists taking it prophylactically and prescribing it to friends and relatives who aren’t yet sick. As of Monday, pharmacy boards in only six states (Texas, Idaho, Ohio, Nevada, Louisiana and North Carolina) had tightened controls on prescribing. The covid-19 hot spots of New York, Washington state and California have not instituted such measures. Meanwhile, stories of fatal self-poisonings and overdoses have emerged.
I saw the toilet paper shortage coming and stocked up. But I never expected a drug shortage that endangers my life and those of other Americans who depend on this medication to modulate our raging immune systems. Autoimmune patients face potentially higher risks of complications from covid-19; we can also get sick from a “flare” if we go off our medication, which may further increase our risk of infection.
If the chronically ill get sicker, we’ll crowd the health-care system. Autoimmune patients are disproportionately women. We’re your sisters, daughters, mothers and grandmothers. We are family caregivers, health-care workers, social workers, teachers, and child-care and elder-care providers.
If we go down, everyone goes down.
“Don’t get sick,” I tell myself each morning. But I’m already sick. While I wait for my pills, I’ll do what I can to “stay safe and healthy,” as if I can control runs on sanitizer, zinc lozenges and hydroxychloroquine. I’m trying to stay ahead of the next shortage and ensure I don’t run out of vitamins, cough and cold medicine, or nutritious food. I mostly stay home, and when I have to go out, I make sure to keep six feet away from people. I wear a mask at the supermarket. I don’t hug my partner anymore and chide him when he touches his face to minimize his risk of getting sick. And I wait for my pills to arrive.
A team of researchers identified 69 medications in use that could offer viable treatments for covid-19. Clinical trials should tell us more, and it would be wonderful, of course, if a game-changing treatment were discovered among the store of currently prescribed medicines.
But patients already taking these medications need to be protected so they don’t lose access to the next “it” drug if hydroxychloroquine’s promise doesn’t pan out. Removing barriers to obtaining refills would help ensure that established patients have a sufficient supply. Prescribers who abuse their privileges should face the harshest professional repercussions, and all states should regulate access immediately.
As ripple effects of the pandemic extend, this unnecessary shortage illustrates the sort of needless death, illness and suffering that could result from missteps in public messaging. I refuse to be collateral damage of poor policy and rumor. Long ago I lost my ability to produce tears and saliva, mundane bodily functions most people take for granted. Those of us with misfiring immune systems will need help if we are to survive this pandemic.
Public officials and medical providers must not forsake evidence-based science and inadvertently sacrifice the health of many Americans amid pandemic panic. Listen to trusted health leaders such as Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases who has offered important correctives to the president’s optimism about potential treatments.
“It’s not going to kill anybody,” Trump said about the upside of trying hydroxychloroquine on coronavirus patients. But for those with grave autoimmune diseases, not having access to this medication might be fatal.