Not All In This Together

In the U.S. pandemic’s early months, African-American patients’ infection and death rates soared

“How many people will die this summer, before Election Day? What proportion of the deaths will be among African-Americans, Latinos, other people of color? This is getting awfully close to genocide by default. What else do you call mass death by public policy?”

Dr. Gregg Gonsalves, a Yale University epidemiologist and lawyer, wrote the above quote about COVID-19 on May 6, 2020, about three months into the U.S. pandemic.

Also in early May, “In Kansas and Wisconsin, black residents are seven times more likely to die than white residents,” said Drexel University Social Epidemiologist Dr. Sharelle Barber.

“In Washington, D.C., blacks are six times more likely to die than white residents,” she said.

“In Michigan and Missouri, blacks are five times more likely to die. And in Arkansas, Illinois, Louisiana, New York state, Oregon and South Carolina, blacks are three to four times more likely to die of COVID-19 than whites.”

“In Washington, D.C.,” Barber added, “Blacks make up 44 percent of the population, yet 79 percent of confirmed deaths. And in Michigan, they make up 14 percent of the total population, yet 44 percent of the confirmed deaths.”

“Anecdotally, we’re hearing stories of people being turned away two, three, four times, presenting in hospitals, presenting in emergency rooms, literally being nearly out of breath but not being admitted,” Barber said. “This is why these deaths are just so devastating and so tragic.”

“Many patients who look like me do not trust the medical system, because the medical system has not yet proven itself to be trustworthy,” Dr. Amanda Calhoun, a black Yale School of Medicine resident, says. “And although I am a proud member of the medical system, to be honest, I don’t always trust it either.”

Calhoun cites data showing hospital staff are more likely to suspect and report black and Hispanic families for child abuse, and less likely to report comparable situations in white families. College-graduate black women are more likely to die from preventable childbirth complications than white women who did not finish high school.

She also cites a 2016 survey showing that 50 percent of white medical students believed at least one falsehood about biological differences between blacks and whites, such as blacks having a faster blood coagulation rate, or less sensitive nerve endings.

Barber has studied the ways that high infection rates result from a history of structural racism. She reports that blacks and Hispanics are disproportionately represented among low-wage essential workers. This includes those in janitorial companies, food service, transportation and hospitals: “During this pandemic, they have been the least protected but the most exposed, lacking the personal protective equipment and income protection, such as paid sick leave and hazard pay, to ensure their safety.”

Frequent hand-washing is critical to fighting infection, but people without water can’t do that. In Detroit, water has been turned off, sometimes for years, in the midst of long-term disagreements between customers who claim suspiciously high bills, and the Detroit Water and Sewage Department — citing non-payment of bills by low-income customers.

Detroit’s low-income households often report large bills because they are more likely to live in buildings with antiquated and broken pipes — which they say the DWSD does not repair. Broken pipes run up higher water bills.

“It was enraging,” said one civil rights activist, “to hear these voices on TV telling people to wash and wash and wash and wash your hands, when you know that people don’t have any water.

“How many people? Our bus drivers, our hospital workers, our policemen. How many people ended up getting this virus because they came into contact with someone who couldn’t wash their hands?”

“This is not new”

Radiation oncologist Dr. Karen Winkfield is a member of the Stand Up To Cancer (SU2C) Health Equity Committee, which oversees SU2C’s efforts to increase minority participation in cancer clinical trials. As a cancer doctor, Winkfield has focused on health disparities for decades. The current situation “is not new,” she says.

“We know that the racism is inherent,” Winkfield points out. “As recently as the 1970s we still had segregated medical wards in hospitals.” Such long-standing policies contribute to people of color not trusting medical facilities.

“Vestiges of that are still around today,” Winkfield says. Black patients report being blamed for their hypertension, asthmatic, or diabetic symptoms when they see a doctor. Social determinants have made non-white patients feel unwelcome during doctor visits for decades, she says.

With the advent of the contagion, “Now we’re asking people to trust the medical profession,” Winkfield says. But some populations have been underserved for so long that there is scant trust.

For example, while getting tested is critical, transportation is a chronic impediment. “People in North Carolina might be taking a bus 25 miles to get a test,” Winkfield explains. In neighborhoods where there is little trust in the medical system, it takes a long ride on a crowded bus — with no physical distancing possible — to be tested.

Winkfield stresses it’s vitally important to recognize that so much about COVID-19 is still unknown. New and future treatments need to include ways to deliver innovations to all patients, not just to white neighborhoods. “The research needs to be inclusive of social determinants, and how they impact new treatments,” Winkfield says about SU2C’s initiative to include more non-white patients in clinical trials. “Researchers and physicians need to factor in the lived experiences of people of color.”

The historically embedded medical hurdles that black people face include “food deserts” that limit nutrition in black communities — a huge factor in maintaining good health. In addition to nutrition and transportation issues, not everyone has the internet access necessary to make appointments, or access telehealth systems. Lack of access can reinforce negative stereotypes and generational poverty.

The political heft of negative stereotypes is addressed in a May 2020 New England Journal of Medicine article that details how low-paying jobs fuel a lifelong lack of nutrition and medical care, which prove dangerous when a pandemic rolls in: “By highlighting connections between racial disparities and upstream forces such as economic inequality, which carry widespread societal consequences, we can also guard against future cynical — and dangerous — political attempts to frame COVID-19 as largely a problem of minorities.”

Linda Blount, President and CEO of the Black Women’s Health Imperative, is also an SU2C collaborator working on an initiative to increase participation of black women in cancer-focused clinical trials. She says that high infection rates within marginalized communities were not unexpected by researchers: “We’ve been having this conversation for 35 years.”

“We must incorporate the lived experience of black, brown and indigenous people into clinical trials,” she says. Disparity in disease outcomes between white and non-white patients has been evident. Yet, “There is no biological or genetic reason why this happens,” Blount says.

Crowded living conditions — aggravated by no access to fresh fruits and vegetables, good transportation or good housing — affect health. “The structural issues mean black patients are blamed for their hypertension,” Blount says. “When they are treated badly, why would they return, if a doctor does not care about them? Why should you go back?”

About the pandemic’s early months, “We didn’t quite yet understand what was happening because there was no data,” Blount says. “The CDC had actually not been requiring data by race in the beginning of the COVID-19 threat.

“Testing is free,” Blount emphasizes. Some testers are telling people there is a fee and that insurance covers it, but that is not true. There is no cost for testing. Still, people are afraid to get tested: If they test positive but have no insurance to pay for treatment, they have no options. This fear means that they may not be seen by a doctor until they are very sick.

When pandemic data did finally begin to be recorded, it revealed a disproportionate impact on blacks, indigenous people and Hispanics. In addition, “There were possibly 40 percent of deaths not even making it to the hospital, maybe two or three times the white rate,” Blount found. “Testing is not occurring in black communities.”

Physical distancing is nearly possible in urban housing. The very conditions of their lives leave urban non-whites with risks. “When you live in crowded conditions, in addition to traveling to work on crowded trains and buses, the immune system is more likely to be compromised,” Blount says.

In prison, “the coughing is worse at night”

The known infection rate in prisons is twice that of the general population. And that statistic increases as nationwide inmate-testing grows and reveals the true number of cases.

U.S. Census data confirm that about 13 percent of citizens are black and 75 percent are white, while U.S. Bureau of Prisons data show 37.8 percent of prisoners are black, and 58 percent are white. Black women are incarcerated at twice the rate of white women.

“None of us is going to be safe until all of us are safe,” says Dr. Brie Williams, University of California San Francisco Professor of Medicine who studies health care within the justice system.

National health is linked by thousands of prisons and jails. “People who live in prison, people who work in prison, people in the community — we are all interconnected,” Williams says. “Hundreds of thousands of staff enter and exit prisons and jails every day, coming back into the community or back from the community into our prisons and jails, bringing with them whatever illnesses they have caught.”

While blacks and Hispanics together comprise about 32 percent of the U.S. population, they comprise 56 percent of incarcerated people. One 2015 study found that blacks and whites use drugs at similar rates, but incarceration of black people for drug charges is almost six times higher than for whites. A criminal record can reduce the chance of getting a job by 50 percent, and the impact of a criminal record is twice as large for blacks.

Physical distancing and frequent hand-washing are not possible in prisons, where perennial overcrowding means inmate beds are just feet from each other. Overcrowding spawns unsanitary conditions that make the pandemic “really wreak havoc in these settings,” according to Barber.

When there is only one phone for 10 people, “That’s not very sanitary,” says Williams. “This is a devastating window into how racist and terrifying our criminal justice system is for the many people who live and work there. We have to ramp up testing of all asymptomatic staff and residents.” Correctional officers and health care workers are also putting their lives on the line. “Many times, there are no other job opportunities in the rural communities or the underserved communities” where prisons are located, Williams has found.

As of May 19, a court battle was being waged over whether Florida’s Miami-Dade County would provide soap and masks to jail inmates. Some judges ruled yes, others were ruling no. So inmates were in crowded quarters with no soap. And by April 30, data had shown that California prison cases were still rising, while at the same time that state’s overall rates were falling.

By early May, almost 70 percent of inmates at the Federal Correctional Institution in Lompoc, Calif., in Santa Barbara County, had tested positive for Covid-19, rendering it the largest federal prison outbreak in the U.S. at that time.

Lompoc inmates’ families had been trying to get information, but the Bureau of Prisons did not respond to their requests, or to the calls of local officials. “We want to know what’s going on in the prison and we have not been able to get adequate answers,” said one Santa Barbara County Supervisor at the time.

The Lompoc prison had prohibited phone and email communications during the outbreak. One family member said that might be an effort to prevent inmates from spreading the word about conditions inside. There were also reports that soap had been rationed.

One relative who reached her inmate said, “There’s so much coughing, constantly that’s all you hear in there. Just coughing. And he said at night it’s worse.”

“Making the invisible visible”

According to a physician whose own mother died of Covid, “Not testing or transparently reporting Covid cases is a great way to keep numbers low. As President Trump said when he balked at having American passengers come ashore from an infected cruise ship on March 7, ‘I like the numbers being where they are.’”

“The fact that we’re not doing widespread surveillance, first, is a public health issue for all of us,” Barber says. “The fact that we’re not doing the kind of widespread surveillance to know where the disease exists is really contributing to the disproportionate exposure, transmission and death among communities of color.

“We need data,” Barber stresses. “We have to use data to make the invisible visible. We cannot address what we cannot see.

“In Philadelphia, early data showed that black neighborhoods had less testing than white neighborhoods, despite being more likely to test positive for COVID-19,” Barber says.

“I also know from two reports from federally qualified health centers, one in a black community in St. Louis and one in the Mississippi Delta, that at the onset of the pandemic, each of these federally qualified health centers only received a total of five tests while mostly white suburban and white neighborhoods around them received many more.

“It’s not just those folks ‘over there’ who are going to experience it worse. We are all — the whole country — is going to be experiencing this because of the overlap in systems and structures,” Barber explains.

Empty grocery shelves are one sign of overlapping systems and structures, as they impact supply chains. If meatpacking workers, who are largely Hispanic, cannot work due to illness, there won’t be meat in grocery stores or hamburger drive-throughs.

No one lone factor drives structural racism. Lack of protective equipment for non-white essential workers, inadequate lifelong medical care that breeds underlying conditions, lack of insurance to cover medical costs, discrimination when health care is sought out, homelessness and crowded urban housing where social distancing cannot happen, prison conditions that spread contagion within communities, and lack of educational opportunities to overcome economic racism all play a role. All of these realities “are interlocking and reinforce one another,” Barber says.

Contagiousness is not going away. “To the extent to which we don’t control (the virus) among these populations, we don’t control it at all,” Williams notes.

“This nation,” Barber says, “and those in power are far too comfortable with the deaths of some groups. And we in the scientific community have an obligation to speak truth to power in the midst of this pandemic.”