Worse still, the pandemic is amplifying the inequities of the health system in tragic ways. For instance: when the president of the United States decided to hype—as a coronavirus treatment—the primary medication used for controlling lupus, he put an already disadvantaged group of patients in even greater jeopardy.
Not long ago, Donald Trump started talking and tweeting about hydroxychloroquine, which I have taken for most of my adult life, as if it were a miracle drug—a “game changer” for treating COVID-19, the president insists. Immediately, thousands of people began hoarding it, causing shortages that have resulted in lupus patients—and their doctors—struggling to get the supply they need. The more Trump pushed the unproven remedy from the White House podium, the more I wondered: Did he not care that the Food and Drug Administration hadn’t approved the drug for COVID-19? Was he that desperate to contain a crisis of his own making?
Trump has even said that people should consider taking hydroxychloroquine preventively. Talking about the drug during a recent briefing, he asked again and again: “What do you have to lose?” But for a president to casually invite Americans to self-medicate is harmful and potentially deadly. And if the supply shortages continue, those of us whose well-being depends on the drug have plenty to lose.
Even on a good day, lupus extracts a physical and emotional toll. There is always the looming possibility that a flare-up could leave you bedridden and racked with pain, and often the only relief comes from this essential medication. Unnecessary shortages caused by false medical narratives peddled from the nation’s highest office not only create fear and anxiety in those who desperately need hydroxychloroquine, but also engender false hopes in those who hoard the drug but might derive no benefit at all from it.
Experts such as Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, have urged caution, pointing out that hydroxychloroquine is unproven against coronavirus and that there’s “only anecdotal evidence” it can be effective. The experience in other countries has been negative to neutral at best. Yet the U.S. government is stockpiling 29 million doses of the drug anyway—and not out of concern for patients with lupus.
Having spent my career as a civil-rights advocate, I’m acutely aware that the people most affected by the hydroxychloroquine drug shortages live in communities or belong to demographic groups that are among the most vulnerable, even in the absence of a pandemic. Black Americans suffer higher rates of not only lupus but a host of other chronic conditions such as diabetes, asthma, and hypertension, making them more susceptible to the coronavirus. This is compounded by structural inequalities that have denied too many black people access to adequate health insurance, employment, housing, and transportation—all keys to high-quality health care in this country.