Opinion | The Coronavirus Doesn’t Mean Lupus Patients Don’t Need Their Medications

On March 29, the Food and Drug Administration issued an emergency authorization for hydroxychloroquine to be used as a form of coronavirus treatment. The only silver lining is that it has led to two drug companies donating tens of millions of doses of both hydroxychloroquine and chloroquine to the Strategic National Stockpile for emergency and trial use. The Department of Health and Human Services is expected to receive more donations, and will hopefully grant more access to patients like me who rely on the drug on a daily basis.

And to help address the shortage of the medication in the meantime, various organizations have started campaigns demanding that elected officials protect the supply of the medicine for lupus patients.

I understand the urge to get the medication. But hydroxychloroquine isn’t an over-the-counter drug. The side effects are serious: severe cardiac toxicity, retinal damage, even permanent blindness. So far at least one man has died (his wife became critically ill) in the United States after taking a chloroquine phosphate product used to treat parasites in fish.

Since the F.D.A. granted the emergency approval, friends have sent me videos of people claiming to be doctors explaining how to take hydroxychloroquine to cure Covid-19. More terrified people are self-medicating and putting their lives at risk. Even President Jair Bolsonaro of Brazil got in trouble for uploading a video to Facebook, Instagram, Twitter and YouTube in which he says that hydroxychloroquine is an effective treatment for Covid-19. The companies said the videos violated their policies of disseminating misleading and harmful information to the public.

I’m not alone in my concern. Lupus patients all over the world are panicked about hydroxychloroquine shortages. There have been multiple reports of lupus patients not being able to fill their prescriptions. It’s not that we don’t want the medicine to work on coronavirus patients. To the contrary. If the medication were studied in proper drug trials and found to be effective, then enough of the drug could be manufactured for both lupus and Covid-19 patients. Hopefully, with the F.D.A. emergency approval, that can happen.

For now, I will wake up, make coffee, take my 10 morning pills, turn on CNN, hoping to see Governor Cuomo not President Trump, and pray to God I don’t get Covid-19 and that I can get my hydroxychloroquine filled. My daughter’s smile is so beautiful. I want to continue seeing it.

Olga Lucia Torres (@TheOlgaTorres) is a former defense attorney who teaches narrative medicine at CUNY School of Medicine and Columbia University.

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