This is part two of a two-part series exploring racism as a public health crisis in Appalachia and its compounding due to COVID-19. Read part one here.
As COVID-19 bore down on his community, Thomas Beavers recognized that primary among his responsibilities was dispelling the rumors.
Beavers is pastor of New Rising Star Missionary Baptist Church in Birmingham’s East Lake community. He ministers to some 3,800 members.
Early in the coronavirus pandemic, rumors circulated within African American communities across the country that Black people were immune to the virus. Or that infection was actually occurring during the testing process. But in consultations with local health care experts, including the dean of the medical school in Birmingham, Beavers learned of the considerable threat the virus posed to those he served.
Faith Fletcher – a member of New Rising Star and an assistant professor in the University of Alabama at Birmingham’s School of Public Health whose research interests include health inequities and social justice – says that early in the outbreak there were media reports suggesting that African American churches were being negligent, downplaying the threat of the virus, holding services that became super-spreader events – a generalization Fletcher believes to be inaccurate.
Beavers moved his services online, where they remain nine months later, broadcast on YouTube.
New Rising Star had long been serving the community with a food pantry, financial literacy classes, housing assistance, an early-childhood learning center, but Beavers recognized that the pandemic mandated more. Additional outreach was required. Perhaps even more important was education on the importance of following guidelines, of heeding the experts’ advice.
Breaking through, though, is a formidable task, given a history of Black communities being taken advantage of – even unknowingly experimented on – by the health care industry.
Marya T. Mtshali, a Harvard sociologist, wrote in a June opinion piece for Vox that “Black people have endured a medical system that has been simultaneously exploitative and dismissive.” The pandemic, Mtshali argues, has made the “damaging implicit and explicit biases present in our medical system” impossible to ignore.
In classes Fletcher teaches on health inequities to UAB public health graduate students, she discusses the United States Public Health Service Syphilis Study at Tuskegee. For four decades, beginning in 1932, Black men, most of whom had syphilis, were recruited for a study of the disease with the promise of free health care. The men were never told the purpose of the study. They were monitored but not treated. Some died; others went blind or became mentally unstable.
Fletcher says students sometimes question the relevance of the study today. She tells them that those “legacies of distress continue,” manifesting in multiple ways – unwillingness to become an organ donor, for example, or to enroll in clinical trials.
Over history, asserts Jay Pearson, a Duke University assistant professor of public policy who specializes in race, Black people have given of themselves, often at great risk – and at times, as with the Tuskegee experiment, unaware of the risk – to advance medical knowledge, and are then denied access to those advances.
“I submit to you humbly,” he says, “my people are aware of that friction … the most perverse manifestation of social injustice” in the nation’s health care system. “So, hell no; we’re not excited about showing up for the clinical trial.”
In the midst of a pandemic, the consequences of that mistrust are enormous. A recent poll found that half of Black adults do not intend to take a coronavirus vaccine when it’s released.
LaDarius Price, community outreach manager for Cempa Community Care in Chattanooga, was approached about recruiting volunteers from his community for vaccine trials. Though he fully recognizes the need for a vaccine and the importance of thorough testing, “I’m just not the person to carry that banner, to say ‘Hey, this is what we need to be doing,’” he says. “Because I understand the distrust of the medical community.”
Faith and Science
African Americans are at significantly greater risk than white people of dying of COVID-19. Birmingham and Chattanooga are two of the largest cities in Appalachia, and each has a large Black population. In these cities’ underserved communities – as in underserved communities across the country – faith leaders are quite often the most trusted voices.
“If we can use those voices, those really strong voices in the community, to advocate and say, ‘This is a good thing; you need to be a part of this,’ then we’re more apt to have a stronger response from the community than if it were a lay person or a politician,” says Tiffany Osborne, director of community engagement for UAB’s Minority Health and Health Disparities Research Center.
From the onset of the virus, Beavers was proactive in addressing the threat, Fletcher says. “Pastor Beavers was at the forefront, holding his congregants accountable, educating congregants and community members,” arranging food delivery and generally seeing to needs in the surrounding neighborhoods, she says.
Churches in communities like East Lake – communities with rich histories; families with deep roots – are the source of much more than spiritual guidance. New Rising Star is an anchor in the community. The many services the church extends are a foundation for trust.
On a Wednesday morning this fall, cars begin lining up at 9 – 50 or more by 9:30 – for a food giveaway that begins at 11:30. It’s a mild day; low 70s. Folks wait patiently, quietly, many with their windows rolled down. Some are New Rising Star members; all are welcome. A volunteer is registering people to vote.
Teresa Bell, a coordinator, says that prior to the pandemic, they’d given out about 100 boxes of food each Wednesday; by fall, it was double that. Items provided include pasta, spaghetti sauce, rice, pinto beans, macaroni and cheese, peanut butter, meat and produce.
“I’m blessed to have this,” says a 62-year-old woman who prefers not to give her name. She was furloughed from her job in a law office. She has diabetes and asthma, is aware she’s at high risk for the virus and is taking all precautions. Her mask reads, “Safety Is Serious Business.”
“I’m still living. I’m still going,” she says. She remains upbeat, but wants to get back to work. “Sometimes things come up for a reason. [God’s] ready to do bigger and greater. Sometimes you have to leave something in order to gain more. … God is still great.”
Pastor Beavers has arrived, masked, a backpack slung over his shoulder, looking somewhat more youthful than his 38 years attest. “These are the stars,” he enthuses, waving toward a group of industrious volunteers.
“We’re people of faith,” Beavers says. “But God does give us science.” He has leveraged both over the past several months to help keep his congregants alive and well. Faith and science must complement each other, he says. “What I tell people is that faith is not a denial of reality. Faith is holding on to a reality that is more real than the one that we experience with our five senses.”
He cautions his congregants not to intentionally put themselves in harm’s way and then ask God to rescue them.
“God gives us knowledge. We know that since there’s been a mask ordinance, the numbers have gone down.” There are things to be done to protect oneself. “A lot of times, I think we ask God to do things that he’s given us the power to do.” God wants us to exercise that power. “And then he steps in to do what we can’t do.”
New Rising Star is also providing COVID-19 testing, as are churches in a number of other underserved communities throughout the region. Conducting testing in these trusted institutions helps ease anxieties about the process.
One in seven people in the U.S. identifies as Black, but only one in 20 physicians is Black. For decades, studies have shown that the trust a patient has in their doctor increases when that doctor looks like them, but such an interaction is far less likely to be experienced by a minority patient.
LaDarius Price conducts “medical vision” days in the Chattanooga schools his nonprofit serves, bringing in health care professionals of all races to talk about their work. He believes that when kids see someone who looks like them who’s made a career in health care, it instills the ambition that they can do likewise.
John Waits says that while the importance of practicing cultural sensitivity is often discussed in rural contexts, it’s less frequently examined in inner-city clinics but equally important. Waits is a family physician and CEO of Cahaba Medical Care, which operates 16 clinics in largely underserved Alabama communities, including Birmingham’s historic West End.
A number of the West End staff were raised in the neighborhood, including family physician Ernestine Clements. Waits says there’s no question of the significance of Clements being of the community. “It’s a level of trust,” he says, “‘This person gets what I’m going through.’”
As a child, about the only occasions on which Clements saw a doctor were visits to the health department to get shots for school. Her mother grappled with substance use throughout Clements’ childhood. Money for food and clothing was scarce; medicine was a luxury. Her grandparents – with whom she now lives, just moments from the clinic – would step in, “trying to keep us from falling too far into the cracks, like when we’d get kicked out of different homes and apartments around here.”
When she was 6 or 7, Clements and her mother had a heart-to-heart that Clements calls a defining moment in her mom’s recovery. Her mother later told her, “You saved my life. Help save others.”
Clements earned a master’s in public health, studying maternal and child health, but also with a focus on international health and global studies, because “I thought I was going to go far, far away.” She came home instead. “This is my neighborhood. It was definitely God’s design for this to happen.”
Waits describes Clements as “quiet but gregarious.” In the before times, she was an inveterate hugger. Her eyes betray a gentle mischief.
In these past months of intense social unrest, Clements says she’s experienced a “weird dynamic.” She sees stress taking its toll on her patients and colleagues. As protests mounted over the summer, colleagues sensed the anger simmering in the neighborhood and were unsure how to process it.
“The atmosphere was kind of strained for a lot of people, because they didn’t know how to interact with the people they’d been working alongside forever,” she says.
One staff member told Clements that she just didn’t get it. She suggested that Clements herself was an indication there was plenty of opportunity in the community. Clements impressed upon the woman the odds against getting to where she had, the barriers along her path. “Open, honest conversations,” Clements says, have helped everyone navigate this unknown.
She acknowledges that the past months have surfaced memories of the times she was doubted, the implicit messages – that she wasn’t good enough, shouldn’t even try. She’s taken pause to consider how she presents as a physician. Out of the convergence of these crises, through conversation, introspection, extending care to one another, perhaps “some healing to so many hurts and harms” will come.
Clements wants her community members to consider the West End clinic a safe place. “We have people who come in saying, ‘I’m hurting, I have these headaches all the time.’” She asks, “‘So what’s really going on?’ And then they start talking about the stresses. And I ask, ‘Do you think any of this is playing a part to how you’re feeling?’”
Jermarus Portis, 35, was shouldering a considerable load. After the outbreak, he was laid off from his job. He has two small children, one with special needs, another experiencing the consequences of a difficult birth. He’d come to Clements with stomach pains; she sensed his stress. She encouraged him to open up.
“This is where you can be vulnerable,” she told him. “This is a safe place to let some of that stuff out.”
“I felt very comfortable talking to her. She was there for me when I thought I wasn’t there for myself,” Portis says. “She coached me through it … and she kept checking on me. People don’t do that these days.”
“Dr. Clements has an incredibly gentle and quiet spirit,” says Kate Abraham, a family-medicine resident at the West End clinic. Abraham most admires Clements’ empathy for her patients. “She has walked around in their world and is able to truly draw near to them.”
‘Legacies of Distress’
In “Just Medicine: A Cure for Racial Inequality in American Health Care,” author Dayna Bowen Matthew examines unconscious bias in provider-patient interactions. She writes that in conducting interviews with physicians, she was surprised to learn that some were unaware that racial health care disparities exist and that among those who were aware, most didn’t believe such disparities occurred in their practice or specialty.
None of those interviewed believed they themselves contributed to disparities or that they might be guilty of unconscious racism.
“I honestly believe that most providers in America, the absolute majority, wake up every day intending to do the best for all of their patients, but, nonetheless, produce a pattern of care that is discriminatory,” David R. Williams of Harvard’s T.H. Chan School of Public Health says. “It’s unconscious, unthinking discrimination that all of us humans are vulnerable to.”
“I think of myself as a prejudiced person because I think of myself as a normal human being,” Williams says.
Williams contributed to a 2003 Institute of Medicine paper titled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care,” in which he and his colleagues examined 180 studies published in medical journals. The research indicated that across medical procedures, from very simple to the most complex, Blacks and other minorities received poorer quality care than whites.
Diseases for which minorities were found to be given inferior care included cardiovascular disease, cancer, diabetes and end-stage renal disease. They received inferior care for pediatric and maternal and child health, mental health, rehabilitative and nursing home services and a number of surgical procedures.
In the years since the IOM report was published, Matthew writes, the evidence of profound inequality in our health care system has continued to mount. She cites research indicating that physicians are less aggressive in urging Black patients to modify risk factors for heart disease such as smoking cessation, diet modification and increased exercise, and that Blacks are less likely than whites to be informed about transplant treatment or placed on transplant waiting lists.
Matthew also cites a National Cancer Institute study indicating that when Black and white patients receive similar treatments for similar stages of cancer, they experience similar rates of survival.
Patricia Jamieson of Birmingham has witnessed the effects of disparate treatment from both sides: as health care provider and patient. She was formerly an oncology nurse, then worked in cancer research and now serves as a health coach.
Jamieson, who’s Black, witnessed countless occasions in which a Black person arrived at the hospital experiencing severe pain and was deemed a drug-seeker. “You get an opiate, but I’m labeled a drug-seeker,” she says.
Jamieson is from Atmore, Alabama, a small town about an hour northeast of Mobile. Atmore has been ravaged this year, first by COVID-19, then Hurricane Sally. Jamieson has lost several family members to the virus. She’s leveraged her experience as a health care professional to advocate for services for family and friends.
When Jamieson first visits a health care provider, she doesn’t tell them that she too works in health care. It shouldn’t be necessary, she says. Those encounters have exposed her to paternalistic behavior.
“I say my liver is bothering me. They say, ‘How do you know it’s your liver?’ ‘Well, I know anatomy and physiology. I know the anatomical makeup of my body.’” She’s then treated more respectfully.
Coming to Terms
In a report on the toxic effect of the prevalence of stress in the U.S. today, Arthur C. Evans Jr., CEO of the American Psychological Association, wrote that as a result of the pandemic, economic distress and social unrest, ”the collective mental health of the American public has endured one devastating blow after another,” the long-term effects of which many people will experience for years to come.
The majority of Americans are finally coming to terms with a reality people of color have “known all too well for all too long and that research has documented,” Evans wrote. “Racism poses a public health threat and the psychological burden is immense. We have a lot of healing to do as a nation.”
Author Dayna Bowen Matthew argues that while the nation’s focus has been on achieving equal access to health care, it should be on achieving equal health care quality. “Equal access to health care will not change the disparate health outcomes that minority patients suffer as long as the quality of the care to which they are afforded access remains substantively inequitable,” she writes.
Matthew calls for reforms to Title VI of the Civil Rights Act of 1964 that would include expressly prohibiting policies and practices that have a disparate impact on the basis of race, color or national origin.
She appeals to health care providers “to begin to act collectively, at systemic and institutional levels, to address the extent to which inequality and racial discrimination diminish the quality of health care in America.”
Camara Jones, a family physician and past president of the American Public Health Association, is convinced that racism can be purged from our health care system.
“It’s going to take intent,” she told CNN’s Sanjay Gupta. “It’s fixable by involving the people who are adversely impacted in decision-making, by tapping into their knowledge and wisdom and lived experience and valuing their input.”
Valerie Jones had walked with her friend Felisha Walter through the labyrinth of the American health care system. Jones spent 17 years working as a nurse and nurse manager before taking her current position at UAB’s School of Medicine ini utilization management. She’d helped her friend finally gain a proper diagnosis, but only after having developed diabetes. She’d witnessed the dismissive condescension of providers.
“I started working at Cooper Green [Mercy Hospital] in 1988,” Jones says. “We’re still talking about the same things in 2020.” It’s time, she says, “to move from talk to correction. I don’t need another study.”
Jones lost Walters to COVID earlier this year. Her health issues, which had advanced after years of less than equal care, put her at higher risk of experiencing more serious symptoms of the virus.
“We know what the problem is,” Jones asserts, and the solution. “You treat people based on their symptoms, not their race, their sex, their sexual orientation or whatever. You treat people.”
This article was co-published with Tarbell.org, an online non-profit investigative news publication founded by health care reform advocate and health insurance industry whistleblower, Wendell Potter.
Editor’s Note: This story was updated to include the title of the United States Public Health Service Syphilis Study at Tuskegee and remove anecdotal references to the number of men who died during the experiment, as well as clarify that Black churches at the start of the COVID-19 pandemic were reported as super-spreader events, but many chose not to hold in person services.