One morning during my last semester in college, I woke up with a strange rash on my face. When it didn’t go away after exhausting a tube of over-the-counter cortisone, my mother persuaded me to see a doctor. The diagnosis was lupus: a life-changing autoimmune disease in which the body literally attacks itself. The physical effects of the disease are cruel, including excruciating joint pain, organ damage, dramatic hair loss, and debilitating fatigue—most of which I have experienced again and again, often for long stretches, throughout my life. And while lupus can be managed, it has no cure.
For three decades, I kept this private and spoke of my condition only with my family and a handful of close friends. I had no intention of changing that until the coronavirus changed everything.
Millions of Americans find themselves vulnerable to COVID-19 because of underlying health challenges, but this pandemic has unearthed particularly deep fractures along our nation’s racial and gender fault lines. This is especially true of lupus. Roughly 1.5 million Americans live with lupus, and we are overwhelmingly female and disproportionately black or brown. For black women like me, lupus tends to take hold at a younger age with more serious, life-threatening consequences. For us, the coronavirus could very well be a death sentence.
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.
In addition, for years, racial bias has infected the way medical care is delivered to black patients, whether children or adults, from diagnosis to treatment. Research has supported the growing recognition that medical professionals have too often dismissed black patients’ reported symptoms, such as pregnancy complications and pain. The coronavirus is raising questions anew about such bias, amid stories about black women who have been turned away from hospitals despite displaying severe COVID-19 symptoms.
Because of these and other factors, medical professionals have been warning—for weeks—that the coronavirus would hit the black community especially hard. And now the experts’ worst fears are coming true.
One day, generations will recall with shame and outrage how the federal government foresaw but failed to prevent this unfolding human tragedy. While President Trump continues to make unfounded claims about hydroxychloroquine, others in positions of responsibility—doctors, hospital administrators, and state and local officials—can take steps to ensure access to vital medications for those who need them. For example, the Ohio and Nevada Boards of Pharmacy have limited how much hydroxychloroquine can be prescribed for certain cases—and banned pharmacists from selling it for preventive use.
Even if people with lupus can get hydroxychloroquine, the broader injustices revealed—and reinforced—by the pandemic will remain. For that reason, authorities need to collect more and better data about how the coronavirus is affecting communities of color. A range of other steps—from vastly expanding our mobile-clinic capacity, to targeted outreach, education, and testing—would also help overcome years of disinvestment and bias in the medical-delivery systems on which people of color depend.
These measures are not aspirational. They will save lives now—which is more than can be said for Trump’s false narratives about a miracle drug.