Maria has not kissed or hugged her children since March 28. It was around then that she started to develop shortness of breath, chest pressure, and a scratchy throat. Maybe, she thought, it was strep, so she ventured to a local urgent care to get tested.
It came back negative.
Maria went home, where her chest pressure persisted into the night. It was too much, and she went to the emergency room at the hospital in metro Detroit where she works in nursing. There, she was told to assume that she had contracted SARS-CoV-2, the virus that causes COVID-19, and to go home. She burst into tears. “I told [the doctor] I have a young baby at home,” she said. “I need to know what my status is, if I should be quarantining. I need to know what I need to do. So they swabbed me, just to be nice, I guess.” (Maria asked that her name be changed because of fear of employer retaliation.)
The swab grazed the inside of Maria’s nose. She told the clinician administering the test that she’d heard this procedure was painful. This didn’t hurt. She questioned if she was being tested properly. But the clinician reassured Maria that everything was fine.
Four days later, her results came back negative, which was enough for her employer to insist she come back to work. Within two weeks, Maria’s shortness of breath had disappeared, but she started to experience diarrhea, nausea, vomiting, and chills in its place. Soon, she lost her ability to smell. But, still, no fever. So her employer wasn’t hearing her out when she asked for time off.
Six days after the loss of smell presented itself, a friend of Maria’s encouraged her to visit her local health department for a test. It was a completely different experience. The test used to identify the presence of the coronavirus is unpleasant at best. A six-inch swab is inserted deep into the cavity between the nose and mouth where it is rotated several times for about 15 seconds. This time, Maria said, it was distressing.
On April 18, her test came back positive.
Maria’s situation—facing resistance and uncertainty about access to care and testing, even while working an essential and risky job—is a study in how the Black community is being pummeled by the coronavirus. Data from across the country show that Black Americans are more likely to contract COVID-19 and are disproportionately dying, often younger, from complications of the virus. In conversations with Slate, multiple Black women described their frustrations about them, or someone they loved, not being able to receive a test for COVID-19 even though they were frightfully sick. One woman lost her stepmother. Another was almost discouraged by a paramedic from going to the hospital even though she was gasping for breath.
The medical catastrophe of the pandemic has met the slow-motion disaster of everyday health disparities. Inadequate testing has been a marquee issue throughout the crisis, and that failure is exacerbated in Black neighborhoods where a lack of testing sites is inflamed by residential segregation. Black folks are overrepresented among populations that cannot practice proper physical distancing, that live in densely populated areas or multigenerational homes, work an “essential” job, suffer from food apartheid, or have an illness that worsens outcomes should they contract the coronavirus. They are also more likely to be poor, which can further cause disparate health outcomes.
But this doesn’t have to be fatal. There are initiatives that could be taken up on a local, state, and federal level to mitigate the impact and increase the possibility that people who are infected survive. Several experts mentioned four planks that could, and should, be addressed: reducing exposure, adequate testing and contract tracing, getting reliable information out to Black communities and combating the flow of medical advice through the grapevine, and forming a coordinated response to address preexisting inequities. The first two are the most amenable to policy and could be accelerated initiatives.
“We live shorter, sicker lives, and we die prematurely,” said Shawnita Sealy-Jefferson, a social epidemiologist at Ohio State University. “That is tied to the history of this group in this country.”
Black folks have been in this country for just over 400 years and more than 85 percent of that history came before the civil rights era, setting the patterns for the poor health and inadequate medical care experienced by Black Americans. Black patients are often underprescribed pain medication or not offered an opportunity to join experimental drug trials that could aid in managing their illness. Or, like Maria, they’re refused certain medical procedures or more likely to be candidates for destructive ones.
Individual Black patients, generally, may not be able to concretely prove that their concerns were dismissed because of their race, but they often have a hunch that they weren’t treated the way they should have been following an experience with a physician.
If something were done about this, Sealy-Jefferson said, the impact of the coronavirus could potentially be mitigated.
“If we are serious about decreasing the disparities by race and ethnicity and class and multiple systems of oppression, if we are committed to doing something about the ways in which these systems have been set up to disproportionately impact communities, we have to do something about racism. That is the fundamental cause of the disparities in health that we’ve seen.”
From the beginning, Sophia Caldwell’s experience at Mizell Memorial Hospital in Opp, Alabama, was unsettling. She took the seven-minute trip to the emergency room from her home in Elba early on the morning of April 23. She had chills and a high fever—another worried addition to the wheezing and shortness of breath that began the day before, a stark progression from what had been a little cough on April 21.
Caldwell was initially treated outside in the parking lot, which didn’t sit right with her, before being wheeled into a narrow hospital hallway for chest X-rays. The doctors and the technician barely acknowledged her, she said, much less explained what they thought was going on. They simply looked at her scans, said they’d seen all they needed to see, and sent her back to her car.
“Neither one said anything was in my lungs,” said Caldwell. “He sent me back to my car and then he told me that I had bronchitis. He said, ‘Step back outside and then we’ll discuss some things.’ ”
Mizell has not responded to requests for comment.
Caldwell, a certified nursing assistant of 17 years who has worked in nursing homes, was insistent that whatever she was feeling wasn’t bronchitis. “I told my husband that I wasn’t crazy. I said ‘This is not bronchitis. I’ve got all the classic symptoms of COVID,’ ” she said. “I know what bronchitis does.”
The clinicians didn’t listen. Caldwell wasn’t tested for the coronavirus, despite her symptoms and tests for flu and strep coming back negative. She was prescribed Norco to treat the cough and told to get some Delsym to suppress it. The doctor also wrote her a prescription for a Z-Pak. She took a double dose from the Z-Pak while sitting in the hospital parking lot, and then she took another double when she got her prescription filled later that day.
But her symptoms worsened. On Sunday morning, she woke up shaky. “My legs didn’t want to carry me,” said Caldwell. She went to an urgent care clinic in Troy, 45 minutes away, bypassing Mizell since she didn’t want to risk being dismissed a second time. On the ride over, Caldwell was terrified. Not once was she able to catch her breath.
“I honestly think if I had gone to bed on the 26th,” she said, “I would have been dead on the 27th.”
Her experience in Troy was completely different. She was allowed into the urgent care clinic, and the staff didn’t act as if they were afraid to touch her. Caldwell learned that her airways were indeed restricted, and doctors asked if she wanted to be tested for the coronavirus. She begged them to do so.
Her test came back positive two days later on April 28.
“When I got there, urgent care treated me like somebody,” said Caldwell. “You treated like just something horrible down at Opp. I can understand their fear, but they gotta understand that we’re the sick ones. We need to be made to feel comfortable, too.”
During the 1700s and 1800s, enslavers did anything they could to put off allowing a physician to assess the health of an enslaved African. Often, they accused sick people of “malingering,” or feigning an illness in order to get out of work. But in the event that a doctor was paged, they operated as enthusiastic agents of the systemic mistreatment of the enslaved. In Medical Apartheid, Harriet Washington recounts an instance where a physician began his evaluation of an enslaved man with “remembering simulation was a characteristic of his race.” Doctors, Washington explained, would share notes detailing ploys used to get enslaved Africans back into the fields as quickly as possible. Violent medical tactics or blatant physical abuse were cited as most effective.
Malingering became a maxim of medical racism, and the clinical experimentation to which enslaved Africans were subjected aided in building the institution of Western medicine. The legacy of that abuse is a primary cause of iatrophobia, the fear and disdain many Black folks still have toward medical institutions, according to Washington. Poor health outcomes were treated as a deficiency inherent to Black people instead of the result of economic disparity, poor housing, abhorrent work conditions, and extreme levels of stress. Clinical beliefs formulated during enslavement are why physicians still believe that Black patients are more difficult to deal with, feel less pain, have thicker skin, or exaggerate symptoms—beliefs that provided a convenient excuse for the continuation of enslavement. Political institutions have allowed for the severe socioeconomic gaps between Black Americans and their white peers to persist so Black populations remain at higher risk of being in poor health and increased risk of mortality.
During the coronavirus pandemic, these factors collided and resulted in a painfully high infection rate: 27 percent of cases based on incomplete data from the Centers for Disease Control and Prevention, within a demographic that makes up just over 13 percent of the U.S. population.
Sealy-Jefferson, the social epidemiologist, stressed the importance of telling the truth about this history in order to put forth any viable solutions. “It’s not about behavior, it’s not about some genetic susceptibility to poor health and mortality,” she said. “A lot of published research, even in 2020, is based in eugenics, this false narrative that genetics predispose people to poor health.”
A number of stories that focus on the disproportionate number of Black folks contracting COVID-19 have leaned into the notion that there’s something wrong with Black people—whether it be admonishing them about food choices or not properly distancing. U.S. Surgeon General Jerome Adams chided Black Americans, and others of color, singling them out in a call to “avoid alcohol, tobacco, and drugs” for their “abuela,” “granddaddy,” Big Mama,” and “Pop-Pop.”
Not as much energy has been dedicated to addressing white Americans or the root cause of any health disparities.
“If we don’t tell the truth about how racism is structuring our society and how racism is privileging some people and disadvantages other people, we aren’t going to make any headway into mitigating disparity,” said Sealy-Jefferson. “Health providers who took an oath to do no harm, should take that seriously and understand all of the ways the implicit biases are playing out in their care.”
Around the time she got sick, Maria’s hospital started to receive its first COVID-positive patients. It was early in the upward swing of Michigan’s infections and the hospital was still tinkering with the procedures. Maria said she and her colleagues were not wearing proper personal protective equipment. They were given surgical masks instead of the N95s the CDC recommends when caring for patients infected with the coronavirus, which were being reused for six days then cleaned under a UV light. Maria and others started questioning whether staff should be masking in the hallways but were discouraged by administrators.
“We were just kind of flying by the seat of our pants,” she said.
Caldwell thinks she contracted the coronavirus while providing in-home care for an elderly woman whose son was a truck driver. She didn’t think to take any extra precautions since she and another person who cared for the elderly patient were already practicing physical distancing in order to protect the woman receiving care. Soon, the woman developed a nasty cough and high fever, and she eventually passed away. It was not confirmed if she had contracted COVID-19, but Caldwell said her co-worker also tested positive around this time.
Providing essential workers—anyone from health care professionals to janitors or in-home care providers—with adequate personal protective equipment as a condition of being at work would be a great start toward tempering the effects of the pandemic, said Nancy Krieger, a social epidemiologist from Harvard. Workers, particularly those outside of the health services field, should also be trained on how to properly use and dispose of it. This will help decrease exposure in the workplace.
Further interruption of an outbreak lies in identifying people who are infected and preventing them from spreading it. This is more complicated, but it is amenable to policy. Isolation wards can be set up for those who live in crowded households. For example, officials in New York, Chicago, Seattle, and California have leased hotel rooms for COVID-19 patients who cannot physically isolate themselves at home.
“The thing that can absolutely be mitigated is the risk of exposure,” said Krieger. “It’s going to get trickier once people are exposed. There may be differentials in the mortality because of preexisting health injustices and that’s not going to be as simple. That’s why the primary prevention is key.”
A lack of testing, however, could pose a problem to the efforts to contain exposure. But right now officials in states that have not been overwhelmed by the coronavirus have an opportunity to acquire enough tests and prioritize who gets tested based on where their disparities are. “They can look at who’s died from COVID, who’s had severe cases of COVID and you can map that out based on geography,” explained Dr. Lisa Fitzpatrick, a medical epidemiologist and infectious diseases physician from George Washington University. “Where do these people live, where have they been, where did they work?”
People who live in congregate settings like nursing homes, incarcerated populations, people who live in public housing, and others who are unable to physically distance should be at the top of the list when it comes to providing robust access to testing. Once positive cases are determined, officials can begin contact tracing and prompt anyone who’s been in contact with someone infected to get tested.
“If you send somebody home who’s tested positive, you’ve basically ensured that at least some of the family members are also going to get sick,” said Maureen Miller, an infectious disease epidemiologist at Columbia University, reiterating the need for more tests and feasible isolation initiatives.
It’s been nearly eight weeks since Maria’s children have seen her bare, unmasked face. At times, her oldest child will run in the opposite direction if she’s seen her mother from an angle where she doesn’t appear to be wearing it. For the first seven days, she quarantined in her basement, away from her husband and children. But she hasn’t been able to get retested, and she isn’t willing to risk the health of her family. “I was just fearful for every contact that I had with my own children,” she said. “I’ve heard stories of people that have been positive for 45–50 days. And you don’t know if they’re still contagious or just shedding viral particles, but still I can’t take the chance.”
Caldwell has been left with a nagging cough. She’s no longer short of breath and her legs have quit shaking. The chills and fever are gone, but she still feels off. “I can tell that I’m better,” she said. “But I can also tell that I’m not well—if that makes any sense.”
She was able to get retested in early May, but her results came back positive. Her third test was originally scheduled for Monday, but she pushed it back until Friday. She wanted to be absolutely certain the virus was out of her system, and since the test for COVID-19 is so painful, she doesn’t want to come back in for another. Caldwell was angry because she has family members who could have been infected. An urgent care doctor in Troy told her to act as if she was infected—even though her initial results hadn’t come back in. She isolated herself from her family, keeps her mask on, and sprays anything she touches with disinfectant. Doctors at Mizell never told her to assume she was infected in order to protect her family, just in case.
“And that bugs me because I could have hurt somebody that I care about,” she said, her voice cracking. “I just think about how I could have hurt somebody that means a lot to me because they were too stupid to even offer the freaking test. I’ve been an emotional mess through this whole thing.”
“I just thank God I feel better,” she continued. “I’m just ready for it to be out of my system and I know God is going to heal me because it could have been so much worse. My children could have been with me and I’m just—I just thank God I’m still here.”