Chapter eight
In 1986, I was assigned to write about HIV/AIDS, then still known as gay-related immunodeficiency disease, or GRID, for Essence magazine. No one knew much about this mysterious disease except that it struck gay men and people who injected drugs. I was such a novice writer that I was surprised to receive this major assignment. I later found out that several more seasoned writers had turned it down, afraid of “catching” the scary virus that was a death sentence for a growing number of people.
As part of my reporting, I went to the Bronx to interview a woman who had contracted the disease from her boyfriend, who had been addicted to heroin. Holding her nineteen-month-old daughter on her lap, she described the puzzling symptoms that had begun several months earlier. She was tired and had been losing more and more weight. I could see that her brown skin had a grayish tint, and she could barely hold up her head. I set my notebook aside and took the toddler from her as she continued to talk. The impish little girl, her hair in two fuzzy pigtails, looked at me and showed a gummy smile, and I saw that her mouth was lined with something white and furry.
Because of my inexperience as a medical journalist, our editor in chief paired me with her college biomedicine professor to walk me through the science of the illness. When I described the baby’s mouth to her, she identified the condition as a fungal infection called thrush, common among people with GRID. At that moment, I understood that this virus was eating away at both the woman and her daughter. By the time the story ran in the June 1987 issue of the magazine with the headline “Nobody’s Safe,” both the mother and her baby girl were dead.
Mine was apparently the first reported article about HIV/AIDS for an ethnic publication. It received praise and recognition and opened the eyes of many to HIV and its impact on African Americans, and it generated promises from Black leaders to take action. This piece also marked the moment I realized that these kinds of stories would be my life’s work. I had a responsibility to continue to use the knowledge I had gained to keep covering this disease. I wrote or edited several more articles on AIDS and also volunteered with the Black AIDS Institute to teach other journalists of color to report and write about the virus. Because I’m an optimist, I assumed there would soon be an end to this terrible plague, and my work, in this area at least, would be finished.
Sure enough, in 1996, scientists discovered a lifesaving “cocktail” of highly active antiretroviral drugs that could stop HIV in its tracks. With this new treatment, thousands of people experienced the Lazarus effect and were brought back from near death, and the AIDS mortality rate plummeted. In November 1996, a New York Times Magazine cover story, “When Plagues End,” announced that AIDS no longer equaled death but merely illness. A month later, Newsweek asked, “The End of Aids?” Despite overall good news, the answer was actually no; the plague wasn’t over. Just as America was celebrating the end of AIDS, the virus grabbed hold of Black America. HIV had been framed primarily as a gay white disease, but in 1996 for the first time Blacks accounted for a larger proportion of AIDS cases (41 percent) than whites, and HIV/AIDS became the leading cause of death for all Black Americans aged twenty-five to forty-four. This information remained underreported outside Black media. I left Essence to work at The New York Times, where I continued to cover AIDS, but found it challenging to get articles into the paper because the epidemic was supposed to be over in America. My friend and colleague Lynette Clemetson, another Black woman who was reporting for the Times, out of Washington, D.C., and I fought our skeptical editors to do a package about the AIDS epidemic in Black America. We got the go-ahead, and two of my stories made it to the front page of the Times in 2004. The first, “AIDS Fears Grow for Black Women,” reported that Black women were the fastest-growing group of newly infected and that the South was hardest hit. The second, “Patients with H.I.V. Seen as Separated by a Racial Divide,” argued that even as others lived with HIV/AIDS as a “manageable” illness, Black people continued to die from it in disproportionate numbers. Both of these stories generated recognition about the disease in Black Americans, as my “Nobody’s Safe” piece had, and promises by authorities to do better. I, again, assumed there would soon be an end to this plague and my work would be finished.
In 2016, now nearly thirty years after my initial Essence article, twenty years after the plague was pronounced dead, and more than a decade after my two major HIV stories for the Times, I learned that if trends held, half of all Black gay and bisexual men would be living with HIV within their lifetimes. The virus was still most active in southern states, which accounted for more than half of all new HIV diagnoses; southern cities had the highest prevalence of HIV among queer Black men (and transgender women). Ground zero was Jackson, the capital of Mississippi, our most impoverished state. The South also had and has the highest numbers of people living with HIV who didn’t know they had been infected, which meant they were not engaged in lifesaving treatment and care and were at risk of infecting others. An unconscionable number of them were dying: among Black men in this region, the death rate from an HIV-related cause was seven times higher than for the U.S. population at large.
I spent half a year reporting in Jackson and retracing the history of HIV/AIDS in America to understand how Black people had, once again, been left behind. I was haunted by the memory of the young dying mother in the Bronx when I visited Jordon, a college kid living in small-town Mississippi who had contracted HIV in 2016. He was bedridden, and his skin had that same ghostly gray pallor. Sweatpants pooled around his stick-thin legs, so fragile you could snap them in two. Though this was the rural South in 2016, he looked as if he were trapped in a time warp that had carried him to the New York City of 1986.
The story, which ran on the cover of The New York Times Magazine in June 2017, was called “America’s Hidden H.I.V. Epidemic.” Though this epidemic wasn’t hidden, except in plain sight, the most common response to the article was shock, given that the plague had supposedly ended. I heard more promises to do better.
At this point, in 2021, I am starting to wonder if there ever will be an end to this plague. When exactly is my work going to be over? And this is not just true of HIV. In 1991, I wrote a story for Essence called “Showdown at Sunrise” that looked at environmental racism through the experience of a community in Cancer Alley, the eighty-five-mile stretch of the Mississippi River known for its cluster of polluting petrochemical manufacturers. Sunrise, a town in southeastern Louisiana, had been founded by enslaved people, and their descendants were being poisoned by proximity to a knot of oil and chemical companies.
Nearly thirty years later, I wrote “The Refinery Next Door,” which looked at the same problem, this time through the lens of a Black community in Philadelphia that had been situated next to the largest and oldest refinery on the East Coast. This story, which ran in The New York Times Magazine in August 2020, also highlighted a community of Black people suffering from clusters of cancer, retold some of the same history of the environmental justice movement, and even featured some of the same experts. I discovered that the problem had actually worsened in the nearly three decades since I first covered it and that Black Americans were more likely to be situated near polluting facilities than in previous decades. Also in 1991, I wrote an Essence story called “Emergency: Crisis in Our Healthcare,” which sounded the alarm about racial disparities in medical treatment and care. Exactly thirty years later, I used that article as background for the introduction to this book, noting how little progress our country has made in coming up with lasting solutions to this long-standing crisis. And now, as I write, the COVID-19 pandemic, which I discuss in the afterword, is the latest embodiment of the issues I’ve been writing about for so long. Viruses like HIV and COVID as well as other diseases strike discriminately at marginalized communities, grasping at patterns of inequality and sinking into the fault lines of our society.
As I have laid out, the reasons for racial health disparities are threefold: long-standing discrimination in the institutions and structures of American society that has harmed and continues to harm Black communities, making them less “healthy”; racism in society that wears away the bodies of Black people and those from other groups who are treated poorly; and bias in health care that creates a system of unequal treatment. It will be difficult to turn around the health of Black communities, burdened as they are by a history of systemic racism. It will take even longer to upend societal racism and stop its destructive effects. Putting an end to racism in health care, while easier to see and solve, is also years away.
But still, I remain optimistic and trust that the lessons we learn from this work will inform how our society addresses other communities as well, whether they are poor whites in West Virginia or terrorized Latinx in Postville, Iowa. I feel hopeful when I look at my previous articles on racial health disparities and see a common through line: committed, determined people who are wrapping their arms around individuals and communities in order to unravel some of America’s most entrenched health problems. I am also encouraged by the growing recognition that racism in medical care has long existed and continues to cause harm: I see medical societies, universities, hospitals, and other institutions, organizations, and individuals grappling with it and working to do better. I am also inspired by medical students, the health-care providers of the future, who want to be better and do better.
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One of these committed, determined people is Cedric Sturdevant. In 2016, while working on my article about HIV in Mississippi, I met Cedric, a project coordinator at My Brother’s Keeper, a nonprofit community health organization in Jackson. He functioned in the improvised role of visiting nurse, motivational coach, and father figure to a growing number of young Black gay and bisexual men and transgender women suffering from or at risk for contracting HIV/AIDS. I spent several weeks with him, off and on, as he made his rounds along the bumpy streets and back roads of Jackson in a thirteen-year-old Ford Expedition with cracked seats, chipped paint, and a bumper sticker that said, “Mean People Suck.” Without Sturdevant, it was clear that many of his clients would not get to the doctor appointments, pharmacies, food banks, and counseling sessions that can make the difference between life and death.
Negotiating a maze of unpaved roads in West Jackson, I was with him when he dropped off HIV medication at the home of a couple, one HIV-positive, the other HIV-negative, in the neighborhood locals call the Bottom, where every fifth or sixth home is abandoned, windows are broken, doors hang off the hinges, and downed limbs and dry leaves blanket front yards. Sturdevant banged on the door of a small house, its yard overgrown with weeds; he knew not to leave the package on the doorstep, where it could be stolen. After a while a young man emerged, shirtless, shrugging off sleep. He had just gotten out of jail. Sturdevant handed him the package, shook his hand, and told him, “Stay out of trouble.”
Sturdevant drove on another fifteen minutes to pick up a teenager, still reeling from the HIV diagnosis he had received earlier that year. As they headed to and from a doctor’s appointment and a meeting with a counselor, Sturdevant, slow talking and patient, with eyes that disappeared into his cheekbones when he smiled and a snowy beard, gently grilled him, reminding him to stay on his meds. The teen slumped in the backseat, half listening, half checking his texts. He looked up briefly when Sturdevant told him, “You’ve come a long way. I’m proud of you.” The young man barely said goodbye as he jumped out of the car in front of a convenience store on an avenue scattered with a pawnshop, a liquor store, and several Baptist churches. He all but admitted he was planning to spend the afternoon smoking weed and looking at Instagram. “Knucklehead,” Sturdevant whispered as the teen slammed the door. Pulling off his favorite Dallas Cowboys baseball cap and running a hand over his bald head, Sturdevant added softly, “Breaks my heart.”
Sturdevant is homegrown. He was born and raised in Metcalfe, a tiny town in the Mississippi delta. He understands all too well the fear, stigma, and isolation that can come with being a Black gay man in the South. When he was diagnosed with HIV in 2005, Sturdevant knew little about the virus and was too depressed and ashamed to tell anyone at first. When his partner died the following year, he let the disease consume him. With a fever of 103, he was so weak and sick he couldn’t keep water down. Sturdevant has shared his story too many times to count, to let young men know that he’s been there too and to help them understand that they can survive the plague of HIV/AIDS. He also knows that many Black gay and bisexual men have been rejected and discarded and has wrapped his arms around as many as he can grab hold of, treating them like family. Sturdevant has two daughters from an early marriage and several grandchildren, but says he feels just as strongly about more than a dozen unrelated “children.” He feeds young Black queer people who feel abandoned and need someone they can believe in and who believes in them. Some call him Mr. Ced, others, just Dad.
Despite the persistent anti-LGBT stigma, poverty, and lack of economic and educational opportunity that haunt the South, eroding the health and well-being of its people, Sturdevant feels a complicated, bone-deep, soul tie to the people and the place. When he encourages his “sons” and “daughters” to take care of themselves and others, he is echoing the love and acceptance he received from his own large family. After his years of hiding, when he came out to his mother in his twenties, she told him, “I love you regardless.” When his family eventually found out that he was sick, his mother and sister drove up to Memphis, where he was living, along with six carloads of aunts, uncles, nieces, and nephews. They served him plates laden with down-home food that he was too ill to eat and did their best to love him back to health. In the hospital, he finally admitted to his mother he had AIDS. “She told me, ‘Boy, you gonna be all right; I got you,’ ” he recalls, tearing up. In the end, they brought him home. He moved back to Metcalfe, with somebody from the sprawling network of nearly a hundred family members always close by, until he recovered.
As I was working on the final draft of “America’s Hidden H.I.V. Epidemic,” Sturdevant called to let me know he had resigned from My Brother’s Keeper. His new job was manager of the SPOT—Safe Place Over Time—a new initiative, located in a former eyewear shop on the third floor of the Jackson Medical Mall and funded by a pharmaceutical company that produces a dozen HIV medications. He would continue to provide services and support for young gay and bisexual men and transgender women for $8,000 more per year. In his previous job he had been unable to afford Christmas gifts for his children and grandchildren until after the holiday.
When I visited him again in 2020, he had moved back home to the Delta, the poorest area in the poorest state in America. The HIV epidemic in Mississippi remains among the most severe in the country, and the rural Delta counties of Sunflower, Bolivar, and Washington, where Sturdevant is now based, have rates of HIV higher than the state’s average. In Greenville, not far from the town where he was raised, Sturdevant was still doing community health work but with more autonomy. He is the director of the nonprofit Community Health-Prevention, Intervention, Education, and Research, also known as CH-PIER, located in a downtown storefront with a few offices, a conference room for support group meetings, a storeroom, and a testing clinic in the back. Washington Avenue, around the corner from his office, looks like the dusty set of a Depression-era film, with its boarded-up buildings, broken windows, peeling paint, and leaves and dirt piled in doorways. Sturdevant spends his days attending health fairs and conferences and conducting seminars at colleges and community centers to raise awareness about HIV/AIDS in the area. He continues to organize monthly support groups for gay and bisexual men and transgender women and has also been trained as a phlebotomist so he can conduct HIV tests and make sure those who end up positive can connect to treatment and care. As we were driving through Greenville, I asked Sturdevant, who has grown his hair into ropy gray locs, making him look like Jesus, Black Jesus, why he moved back home, and he laughed and said, “Sometimes I wonder about that, too.” Just then he saw his mother pass us in her dark gray Nissan and called her cell to scold her for driving too fast.
“I think God told me to come back here,” he said finally.
Sturdevant functions as a community health worker (CHW), though it’s not in his official job title. CHWs are trained health-care providers, chosen because they are trusted members of their communities who act as a bridge between clinical and community settings, between the patient and the provider. They work to improve patient communication and compliance, coordination of care, outreach, prevention, and early diagnoses, particularly in Black and underserved communities. They advocate for patients and offer social support and coaching. Whether they’re called patient navigators like Sturdevant or peer recovery coaches like Morgan Anne Wood and Dani Ludwig of the Friendship House in West Virginia, CHWs provide a valuable service where the need is greatest. While CHWs cannot replace quality health-care delivery, they play an important role in increasing access to prevention and treatment services and can help neutralize social and environmental determinants of health that erode the well-being of people and communities. Studies show that CHWs can improve outcomes of chronic illnesses, including diabetes and heart disease, in a wide variety of settings—in urban, rural, and small-town communities as well as in clinics, emergency departments, and veterans’ hospitals. They have also been shown to reduce health-care costs. By helping coordinate medical care, offering emotional support, and promoting safe sex and healthy eating, for example, they can avert costly hospitalizations. An article published in February 2020 in the journal Health Affairs found that one team of six community health workers serving 330 patients saved the Medicaid program more than $1.4 million a year, for a return of $2.47 for every dollar invested. CHW programs also provide meaningful employment and job creation in communities that need them most.
Still, the United States uses community health workers sparingly, and they remain largely on the fringes of the medical system, underutilized, underpaid, and poorly supported and defined. They lack uniform training or accreditation, their responsibilities and job titles vary, and compensating them fairly has been spotty and ad hoc. In 2010, the Affordable Care Act officially acknowledged CHWs as an important component of the health-care workforce, and several years later a number of states began advancing the CHW infrastructure—professional identity, workforce development, training, and financing—in various ways with legislation. But our country of 331 million employs only about 59,000 CHWs, according to the Bureau of Labor Statistics, a much lower ratio than nations that have made the greatest impact by using CHWs—countries like Ethiopia, which has approximately 42,000 CHWs for a nation less than half the size of ours.
In 2010, I spent two days with Aster Roba, a health extension worker (HEW) in rural Ethiopia. She was one of an army of more than thirty-eight thousand women dispatched by the Ethiopian government to serve as CHWs, beginning in 2004. In Daka Werekelo, where Roba lived and worked, two thousand people reside in a sprawling cluster of mud huts. During my visit, I walked from home to home with Roba as she counseled women about family planning, HIV prevention, hygiene, nutrition, and other healthy practices. We sat in modest homes with dirt floors, children crawling on their mothers like playground equipment, as they listened to Roba with interest and respect and asked her questions mainly about their kids. Roba also dug latrines and distributed mosquito nets and in her clinic inserted birth control implants, administered contraceptive injections, provided prenatal and gynecological care, vaccinated children, and treated diarrhea. On a sweltering morning, she held a community meeting in a field, standing in the middle of a circle of about thirty people in her village to exchange information and voice concerns, on this day primarily about a lack of water for drinking and bathing. Afterward, as we talked in the cramped office she shared with a twenty-year-old colleague, she told me with pride that she had helped women deliver babies in their homes and that she had brought about a dozen children into the world.
HEWs like Roba are an integral part of Ethiopia’s health-care system, working to combat a tangle of poverty-fueled health problems, including infant and maternal mortality and child death, in a country with an average of only one physician for every hundred people. In contrast, the United States then had approximately twenty-six doctors for every hundred people. Roba was eligible to become a HEW and go through the yearlong training program because in Ethiopia, where most women are illiterate, she had made it through the tenth grade and could read. She was attracted to the job because of a tragedy in her earlier life: when Roba was fourteen, her mother nearly died in childbirth delivering her tenth child in ten years. In the aftermath, as her mom struggled back to life, a HEW came to her home to talk about family planning, and Roba realized that’s what she wanted to do. “I never want someone else to suffer like my mother did,” she told me through a translator, surrounded by a rambunctious collection of barefoot children in stained and tattered clothing, giggling and pulling at her skirt.
The HEW program has the added benefit of providing dignified employment for tens of thousands of women, and inspiring young girls who see them as role models: educated, competent, and commanding respect. Since I visited Ethiopia, the HEW program has been evaluated and held up as a model of success, though it still struggles under intractable infrastructure issues like transportation, sanitation, and communication as well as power and water shortages, all of which plague the nation. Ethiopia has made dramatic progress in improving the health outcomes of its population at least partly due to the program. It reduced child deaths by 69 percent, from 205 per 1,000 live births in 1990 to 64 per 1,000 live births in 2013, accomplishing the United Nations Millennium Development Goal 4 three years ahead of schedule. The maternal mortality ratio plummeted from 1,030 maternal deaths per 100,000 live births in 2000 to 401 per 100,000 in 2017. A 2020 report estimated that Ethiopia’s army of HEWs saved the lives of more than 50,000 mothers and children between 2008 and 2017. Hygiene and sanitation improvements instituted by HEWs have led to a reduction of major communicable diseases. Additionally, a study that looked at forty-nine peer-reviewed papers published between 2003 and 2018 pointed to health improvements in Ethiopia specifically related to its HEW program. These include significant improvements in maternal and child health, hygiene and sanitation, knowledge and health-care seeking, and a reduction in communicable diseases.
Globally, CHWs—who, depending on the country, are referred to by a variety of names, including lady health workers, visitadoras, village health guides, women group leaders—deliver babies, support breast-feeding, administer vaccinations and birth control, manage childhood illnesses, counsel mental health patients, and provide preventive health education on malaria, TB, HIV/AIDS, and sexually transmitted infections. Research from the World Health Organization shows that around the world the services CHWs offer have led to declines in maternal and child mortality rates and decreased incidence of TB and malaria in some of the most disadvantaged nations.
The CHW concept was first conceived in China in the 1950s. At the time, China had an estimated 40,000 physicians serving a population of 540 million people. Most of these doctors worked in large cities, even though 80 percent of the population lived in rural areas. In the 1960s, Chairman Mao, the leader of China’s Communist Party, created an army of “barefoot doctors,” thousands of young rural men and women who received an intensive three- to six-month course of medical training. When they returned to their villages, they were able to provide basic health care and education. By the 1970s, about a million of these lay professionals served rural areas in China, and the World Health Organization and leaders in other countries gave China’s program a hard look as an alternate to expensive, Western-style medical-care models. A compilation of case studies published in 2020 looked at the effectiveness of the many offspring of China’s example. The report notes that Bangladesh Rural Advancement Committee employs 43,000 CHWs, who have helped that country reduce under-five mortality and high rates of TB. In Brazil’s Family Health Strategy, 265,000 community health agents offer services such as immunization, family planning, and breast-feeding support, which has helped spark dramatic improvements in a number of national health indicators over the past three decades. Nepal has been a global leader in reducing its under-five mortality, maternal mortality, and fertility rates, with the help of CHWs, who provide reproductive health services, immunize babies, treat childhood illnesses, and offer individual and community health education.
Though we think of this kind of people-driven, low-tech care as a solution only for less wealthy countries, far too many pockets of the United States, inside cities and in large swaths of rural America, are as broken down as or worse off than many of the poorest countries of the world. I was reminded of Aster Roba seven years later, when I met Latona Giwa of the Birthmark Doula Collective. I spent several weeks, off and on, shadowing her in New Orleans in 2017, for my New York Times article and recognized in her relationships with her clients the same kind of familiarity, caring, and deep listening I had witnessed in Ethiopia. To be sure, Giwa has more education than a typical CHW. After graduation from Grinnell College in Iowa in 2009, she moved to New Orleans, where she completed an accelerated program in nursing at Louisiana State University. She worked for a year as a labor and delivery nurse and several more as a visiting nurse for Medicaid clients in St. Bernard Parish, where every structure was damaged by Katrina floodwaters. She left nursing to devote herself to doula work and childbirth education, co-founding the nonprofit Birthmark Doula Collective, after observing the lack of services for women in New Orleans who most needed support during pregnancy but couldn’t afford it. A 2016 study published in the journal Birth shows that women who received doula support had 22 percent lower odds of preterm and cesarean births, and doula care also produced cost savings. The concept of doula care has also spread beyond pregnancy and birth: doulas help women through the process of abortion and assist HIV patients with treatment regimens, and “death doulas” provide support at the end of life.
As I described earlier, Giwa guided Simone Landrum through an emotionally difficult pregnancy following her escape from an abusive relationship, the death of her baby Harmony, and her own near death during childbirth. While Landrum was in labor with her son Kingston in December 2017, Giwa shielded her from appalling treatment by health-care providers in the labor and delivery room. Giwa was the only person during Landrum’s tense, touch-and-go delivery who kept her eyes locked on the laboring mother, not the machines in the room. Even after the birth of the baby, Giwa’s work was not finished. It was she who drove Landrum and baby Kingston home from the hospital, a tray of homemade lasagna in the back of her car, when there was no one else to do so. Despite her high-risk status, no one had contacted Landrum from her ob-gyn’s office about a follow-up appointment after the birth until Giwa asked her about it and made sure she went in. For all of her work, attentiveness, and radical kindness over about five months, Giwa received, as noted, only $600, paid through Birthmark Collective fundraising.
Our nation, even with the most expensive health-care system and arguably the best medical technology in the world, cannot rely only on clinical and technical solutions to dig our way out of the nation’s most vexing health issues, which include high rates of infant and maternal mortality and lowered life expectancy compared with other wealthy countries as well as persistent racial disparities in nearly every health outcome. Without a personal connection to offset the largely impersonal nature of the current medical system, spending more and more money on health care will never erase the problems dogging America or close the racial gap. Our country must instead combine the rigorous science and advanced technology we are known for with kindness, care, and support.
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In the spring of 2018, Rodneka Shelbia of New Orleans was in the second trimester of a pregnancy with her first baby. At twenty-two weeks, she visited her doctor, alarmed after she noticed she had passed her mucus plug, the protective seal covering the cervical canal in a pregnant woman. She also had back pain, loose bowels, and cramps, which, along with passing the plug, seemed to signal very early labor. Though she insisted to her physician that something was wrong, the doctor ignored her concerns, assuring Rodneka that her pregnancy was normal. She directed her to a pregnancy website and sent her home.
Several days later, the symptoms became more intense, and she began having contractions. Just to be sure, Rodneka looked at the website the doctor had advised her to read, identified the signs of labor, and also noticed that the site listed her previous complaints—passing the mucus plug, back pain, loose bowels, and cramps. Rodneka estimated that she was one day away from twenty-three weeks of pregnancy and understood that babies born earlier than twenty-three weeks have almost no chance of survival. In these cases, clinicians will generally not try to save the baby, but instead let the parents hold the infant immediately after birth until he or she dies, which often happens within minutes. Terrified, Rodneka began praying and talking to her baby girl, begging her not to come, to wait one more day. She did. The following day, with contractions five minutes apart and now bleeding, Rodneka went back to the hospital, only to be sent home again by her doctor, who continued to insist she wasn’t in labor. For another excruciating week, Rodneka waited, still bleeding and having contractions. Finally, on April 21, at twenty-four weeks, Iamme was born, weighing one pound six ounces and classified as extremely premature. The tiny infant was immediately whisked into the NICU and remained in the hospital for eight months. Eventually, Rodneka’s doctor explained to her that she had suffered placental abruption, which occurs when the placenta partly or completely separates from the wall of the uterus before delivery. The physician admitted that she had missed this diagnosis, but never apologized.
A little over two years later, on September 23, 2020, Rodneka Shelbia told the story of Iamme’s birth to a Zoom room of some forty-five physicians, nurses, and other health-care providers and administrators, most from Touro Infirmary, where Rodneka had had her baby, as part of a daylong workshop. I observed, interested to see what had changed in New Orleans since the time I had spent in the city reporting my 2018 New York Times Magazine cover story on Black mothers and babies. Louisiana has one of the highest rates of infant mortality in the country, and Black infants are about twice as likely to die before they are old enough to walk. Louisiana is among the states with the highest rates of maternal mortality in the country, and Black mothers die five times more often than white mothers for pregnancy-related reasons, deaths that are nearly always preventable. Touro, a community hospital that serves large numbers of Black women, has elevated rates of severe maternal morbidity—the near death of a pregnant woman—higher than the state average. It is also the hospital where Simone Landrum, the central figure in my article, delivered her stillborn daughter and almost bled to death herself, after her physician ignored her legitimate concerns and signs of dangerously high blood pressure.
Rodneka’s presentation was part of an Institute for Healthcare Improvement initiative that brought together doulas from Birthmark, clinicians and administrators from Touro, other Louisiana health-care providers, and Black women from New Orleans. The group works together to redesign maternal care with a focus on improving clinical outcomes and increasing dignity, equity, and safety. The process includes Equity Action Labs and Momentum Labs, gatherings where Black women like Rodneka are active participants in redesigning the way care is delivered. They describe the problems they experienced during delivery and with prenatal and postpartum care with the providers at the facility where they received care, encouraging them to understand and acknowledge the harm they might have unknowingly created.
Projects like these have been developed to address long-standing racial discrimination and bias in medical treatment and care. Despite enough documentation of these phenomena to fill the Library of Congress, the appetite for making significant, systemic change remains halting. Some medical practitioners, health administrators, and governmental officials acknowledge the problem, but in general medicine has been slow to come to terms with it. In 2020, the American Medical Association, the country’s largest association of physicians and medical students, finally recognized racism as a public health threat. That announcement came twelve years after the organization, founded before the Civil War, apologized for a history of discrimination against Black doctors.
Solutions have been difficult to come by. Many medical providers, educators, and public health officials find it too overwhelming to confront the problem, wondering—with some justification—how to combat racism that has been embedded in the systems and institutions of America since the birth of the country. Others stubbornly resist discussing the intersection of race, racism, and health care, even as the crisis grows. Carol Hogue, PhD, an Emory University epidemiologist and one of the original authors of the landmark 1992 New England Journal of Medicine study on infant mortality in college-educated parents, had warned me about this sort of pushback. When I asked her why she felt the need to include 174 citations from previous work in an article she had published—an epidemiological review of research about the association between racial disparities in preterm birth and interpersonal and institutional racism—her answer was to the point: “No one believes you unless you really have evidence behind it. You can’t just explain what you know; you have to prove it over and over.”
Even those in the field who are more knowledgeable about racial health disparities and social determinants of health often think of the problem in terms of a kind of hierarchy of oppression, insisting that the inequity is less about race and more about class. They generally admit that the elevated rates of poverty in African Americans have their roots in 250 years of slavery, another 100 years of government-sanctioned discrimination and segregation, and continued societal racial bias. But they are slower to grasp that bias in the health-care system extends beyond poor Black Americans and persists even among more advantaged African Americans. So they ask for more—proof, research, data, and documentation. Earlier in this book, I document one of the most important and frequently cited reports on racial bias in medical care, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. This gold-standard, book-sized report from 2003 compiles 483 studies that point to unequivocal racial disparities in health-care treatment even after controlling for socioeconomic factors.
This report cuts to the core of the issue, with heartbreaking specificity. One of the studies highlighted looked at medical procedures for patients suffering from diabetes and prostate cancer. It focused only on Medicare patients in order to equalize access to health care in its subjects. Published in The New England Journal of Medicine, the 1996 study found that doctors cut off all or part of the legs of their Black patients 3.6 times more frequently than those of their white patients. In 62 percent of amputations, the principal diagnosis was diabetes. The researchers noted that though diabetes is more common in Blacks than whites, the difference in the rates of amputation was not explained by the difference in the prevalence of diabetes. The same study found that bilateral orchiectomy—removal of both testicles—was more than twice as frequent among Black men as among whites. Neither the rates of prostate cancer nor the severity of the cases explained why Black men were more likely to lose their testicles when other less life-altering remedies were available.
This study stopped short of blaming individual health-care providers for what seemed to be racially motivated decisions, and no one believes the doctors and other providers behind the numbers acted with the callousness of an antebellum physician like J. Marion Sims. But someone made these decisions; human beings are responsible for deciding when to cut off another person’s leg or his testicles and for making that crushing choice more often in Black patients than white even when other factors seem to be equal.
Physicians and other health-care providers don’t pursue medicine to go against their oath to do no harm. They enter the field to help and heal. Still, the majority of physicians are white and bring their individual biases to their work and, without being conscious of it, may have trouble humanizing and empathizing with people who are different from them. Research shows that Black patients benefit from having a Black health-care provider. A 2020 study showed that Black newborn babies in the United States are more likely to survive childbirth if they are cared for by Black doctors, but three times more likely than white babies to die when looked after by white doctors. The mortality rate for white babies was largely unaffected by the doctor’s race.
Underrepresentation in the workforce limits Black patients from being treated by physicians who look like them. Aspiring Black doctors often struggle against financial and educational barriers wrought by systemic discrimination. Far too frequently Black students, particularly men, not only face a lack of role models and encouragement but are actively discouraged from pursuing careers in medicine by teachers, guidance counselors, and professors. And even health-care providers of color harbor bias, and in hectic, rushed health-care settings it tends to surface. We are all functioning in a system and society that are riddled with discrimination based on myths and stereotypes that continue to hang on, even centuries later.
Some groups and individuals are pushing for reform. In a widely circulated editorial in the March 19, 2015, edition of The New England Journal of Medicine, Mary Bassett, MD, then the New York City commissioner for health, put out a call to action to health-care providers to not shy away from using the word “racism” when they see health inequality. “Health professionals [should] be accountable not only for caring for individual black patients but also for fighting the racism—both institutional and interpersonal—that contributes to poor health in the first place,” she wrote. Beginning in 2016, she also instituted mandatory implicit bias training for all the thousands of employees of the New York City Department of Health.
In 2019, California became the first state in the country to respond directly to Dr. Bassett’s challenge after clinical improvements in hospital obstetric care failed to make a dent in racial gaps in maternal mortality. In that state, the rate of maternal deaths climbed sharply from 7.7 deaths per 100,000 live births in 1999 to 16.9 in 2006. Similar to U.S. Black women as a whole, African American women in California were roughly four times more likely to die than women in other racial/ethnic groups. In response, the state launched the California Maternal Quality Care Collaborative (CMQCC), a multi-stakeholder organization anchored at Stanford University School of Medicine charged with reducing the deaths of mothers and babies. CMQCC created tool kits—instructions for hospital personnel to make sure that the best protocols and tools were on hand in the case of obstetric emergencies like hemorrhage and dangerously high blood pressure. These evidence-based clinical innovations worked: California saw maternal mortality decline by 55 percent between 2006 and 2013, while the U.S. national maternal mortality rate continued to rise. However, Black women did not benefit, and the racial disparity in maternal mortality between Black and white women in California remained stubbornly in place.
State senator Holly J. Mitchell, a Black woman, and others realized that doctoring their way out of the maternal mortality crisis would never work. So she co-sponsored SB-464, the California Dignity in Pregnancy and Childbirth Act, a bill that, among other things, would require all health-care providers treating pregnant women and delivering babies to undergo implicit bias training to curb the impact of bias on maternal health. California’s governor, Gavin Newsom, signed it into law in October 2019, and it went into effect the following year.
Other states have created quality initiatives similar to California’s under the umbrella term Perinatal Quality Collaboratives, or PQCs. These are networks of clinical teams, public health leaders, and other partners, including patients and families, that work together to improve pregnancy and infant outcomes. At this point, nearly every state has a PQC at some stage of development. In August 2018, the newly created LaPQC launched the Reducing Maternal Morbidity Initiative to reduce deaths and near deaths of mothers from hemorrhage and hypertension—the leading causes of preventable pregnancy-associated mortality in Black women—by 20 percent in one year. Participation was voluntary, but dozens of hospitals and birthing centers signed on, including Touro as well as Ochsner, where Simone Landrum delivered Kingston. In initial surveys, not a single hospital team mentioned equity, instead focusing on clinical outcomes—reducing hypertension and hemorrhage deaths without the explicit tilt toward racial equity. That sounded like the blind spot the California experiment had encountered: mistakenly assuming that upgrading and standardizing clinical measures would reduce the role that provider bias played and trickle down to narrow the racial disparity in birth outcomes. Instead, the Louisiana team more intentionally embedded antiracism training and community engagement in the work. A group of facilitators conducted workshops to train hospital teams about race, racism, white supremacy, and the role of implicit bias in care and equity. A turning point came in January 2019 during a daylong workshop with 130 physicians, nurses, and hospital administrators at the Cajundome in Lafayette. The organizers brought in LaToshia Rouse, a patient adviser with North Carolina’s PQC, to share her birthing experience.
In 2014, LaToshia delivered triplets, born early at twenty-six weeks. Eventually, she returned home, leaving her three tiny babies in the hospital’s NICU. Twenty days later, in the middle of the night, LaToshia woke up after feeling something wet in her bed. She made it to the bathroom, turned on the light, and discovered she was hemorrhaging. There was so much blood on the floor that her bathroom looked like a crime scene. She was suffering a postpartum hemorrhage—when a woman experiences heavy blood loss after giving birth—which in the United States is a leading cause of pregnancy-related death and neonatal death, and more common in Black women than other women. Shoving a towel between her legs to soak up the blood, LaToshia called 911, tried not to move, and waited for EMS to arrive. By the time paramedics got to her door, LaToshia was nearly unconscious from blood loss, but through the haze she noticed that the paramedics didn’t seem to be acting with urgency. They never checked to see how much blood she had lost, but instead, seeing her having trouble holding her head up, assumed she was using drugs and asked her, repeatedly, what she had “taken” and what she had “done.” They then asked LaToshia if she could stand up. When she said no, they persisted, holding her by her arms to help lift her. Weakened by blood loss, she fell. She made it to the hospital for treatment, but still considers this one of the worst days of her life. She is also crystal clear that she would’ve been treated differently had she been white. “I understand how women die and what happens when someone sees a stereotype, not the person right in front of them,” she told the audience in Lafayette. She explained that she shares her personal story in order to illustrate, to really get providers of all stripes to hear, and understand, the pain and trauma that can result when a patient isn’t listened to or made a priority.
As a result of the workshop, and hearing LaToshia’s and other stories, clinicians and administrators got a clearer picture of the role of racism in patient experiences and also what it looks like when people most impacted by disparities become the drivers of change. Some hospitals in the state, which had been resistant to racial equity training, began voluntarily engaging in it. In the end, after twenty-one months of work to improve hospital practices, including training to recognize and combat implicit racial bias, Louisiana’s PQC more than reached its goal: reducing near death from hemorrhage by 39 percent and from hypertension by 22 percent. However, the racial disparities barely budged; most of the improvements benefited white mothers. Still, that group has decided to continue the work, focusing on equipping hospitals to provide safe and racially equitable care.
In general, this kind of training to root out and erase health-care bias in the United States remains patchy, unregulated, and uncoordinated; even the names—implicit bias training, antiracism training, unconscious bias training, diversity training, antibias training, racial-bias training, undoing racism training, equal-opportunity training—lack consistency. It’s also unclear, depending on the structure and format, how well it works. Whatever the form, the goal is to fight against the sometimes centuries-old attitudes or images that unconsciously shape understanding, actions, and decisions. Implicit bias, based on views developed throughout life and shaped by societal messages internalized as truths from family, peers, media, and authority figures, results in stereotypes that are lodged in the mind. The result is overgeneralizing about certain groups that can have devastating effects, especially in medical settings.
Antibias training is far from new; it has existed for decades. Most large companies have some form of diversity training, and federal agencies began requiring staff trainings following the civil rights movement of the 1960s. Still, trainings often lack depth. A single workshop or a one-shot digital training isn’t enough to uproot long-standing, deep-rooted biases, and far too often, after the training ends, little has shifted. Many programs use a “good person, bad person” framework rather than looking at discrimination as systemic and institutional. Most acts of racism and bias arise in people with blind spots, not Proud Boys memberships.
The implicit bias training enacted by Mary Bassett at the New York City Health Department took a more holistic approach, examining the impact and existence of racism not only in individuals but throughout the agency, and also considered the broader systemic influences on the organization. The agency used the Undoing Racism model, created by the People’s Institute for Survival and Beyond. This New Orleans–based organization has completed twenty thousand trainings and workshops since 1980 and focuses on moving beyond addressing the symptoms of racism to undoing it in order to foster a more just and equitable society. In two-day trainings, participants develop a common definition of racism and an understanding of its different forms: individual, institutional, linguistic, and cultural, the participant’s own connection to racism, and its impact on their work. They learn about power and privilege and address how bias and discrimination negatively affect everyone, including white people. Most important, participants build awareness and understanding about ways to begin undoing racism. Health agencies in Boston, Baltimore, and other cities and counties have done similar antibias work.
Following the murder of George Floyd in May 2020 and in the shadow of protests against racism and police violence around the world, the initiative that Rodneka Shelbia and the Birthmark Doulas took part in made the decision to focus explicitly on the role of racism in perinatal outcomes, using restorative justice practices as a framework. More often applied in the criminal justice system, restorative justice puts those who are harmed, wrongdoers, and their affected communities together in search of solutions that promote responsibility, repair, and the rebuilding of relationships while preserving the safety and dignity of everyone involved.
With that lens in mind, during the Zoom workshop in September 2020, after Rodneka Shelbia described her labor and delivery, organizers asked her to tell the providers from Touro Infirmary what restorative justice might look like in the face of so much loss as a result of the treatment she received at their facility. Even as Rodneka made her presentation, Iamme, then two years old, was recovering from yet another surgical procedure, this one on her thyroid, and used a breathing tube to bring oxygen into her lungs. If her doctor had listened to her and made the correct diagnosis, Rodneka might have received an antenatal steroid injection, a standard form of treatment to speed up the development of a preterm baby’s lungs. This shot has been shown to lower the risk of breathing problems in infants, and it would have made a difference for Iamme.
As she addressed the Touro providers and administrators, Rodneka struggled to describe what restorative justice might mean for her. Because she had to miss so much work in her daughter’s first year of life, Rodneka lost her job, and her marriage broke up as a result of the stress. She considered suing the doctor, but worried that the time, energy, and cost would distract from caring for her child. She was also wary of reliving the trauma, feeling the anger and hurt rush back. Also, if she lost the case, it might feel like a slap in the face, almost as bad as the initial experience. As she spoke, the clinicians and administrators began to better understand what patients like Rodneka may be experiencing on their watch and how they might provide better care in order to prevent avoidable preterm complications.
The process in New Orleans involved more than just confrontation and critique. The organizers also offered an example of the compassionate, equitable care another patient, Quiatta Joseph, received at Touro in order to help frame changes the group would design together. On April 2, 2020, Quiatta, nine weeks pregnant, suffered a miscarriage. By the time she made it to a hospital not far from her home via ambulance, she had lost more than a liter of blood. After being examined by providers in that facility, she was given pain medication and then discharged—still bleeding, barefoot, and wearing only a bloody hospital gown. The follow-up appointment she was given for three days later turned out to be for a day the clinic was closed. Distraught, she called a neighbor to pick her up from the street corner. Her neighbor drove her home, and later, when she began bleeding again, they called Audrey Stewart, a member of the Birthmark Doula Collective and midwifery student who had been involved in the various equity initiatives in the city and state. Stewart phoned ahead to a physician partner at Touro, and a team of Black women residents from Louisiana State University met Quiatta at the door of the emergency room. There, medical personnel explained what the providers had failed to tell her on April 2, that she had miscarried. They gave her a blood transfusion, a dilation and curettage procedure, or D&C, and antibiotics. They even allowed her to call her mother to say a prayer for the lost infant. As Quiatta told her story during the workshop, she wept at the painful memory but also with gratitude.
An important outcome of all of this effort was that Touro opened an obstetric emergency department, hiring four physicians so that patients arriving with obstetric emergencies are seen immediately by an ob-gyn instead of first being evaluated by a regular ER doctor. This process might have saved the life of Simone Landrum’s stillborn daughter.
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The problems with clinicians that the Louisiana initiatives and others are attempting to address start early, in medical school. Even as the country grows more diverse, only 12 percent of medical school graduates were Black, Latinx, or Native American as of the 2018–2019 academic year. Beginning in the eighteenth century, U.S. medical schools routinely taught theories that created and perpetuated racial inferiority, mythology, and stereotypes. The practice bled into modern times as medical schools continued to teach race as a risk factor for a number of diseases and to use faulty algorithms with built-in race corrections for diagnosis and treatment across various fields of medicine. The much-cited 2016 University of Virginia study of medical students and residents and their skewed perceptions of pain in Black versus white patients and their false assumptions about Black bodies made it clear that racial stereotypes and unconscious bias continue to poison health-care providers while they are in training and have the power to corrupt their eventual medical decision making.
But medical education is shifting, and growing numbers of medical schools across the country acknowledge the problem of racial bias in medicine and are addressing implicit or unconscious bias before it infects doctors-to-be. Far too often, though, it is not medical school administrators who are spurring action but the students themselves even as they balance the pressing demands of schoolwork. I was interested to see if there had been any changes in the medical schools in New Orleans. There, students train at the hospitals where Simone Landrum received subpar treatment and care. I learned that a group of students at Louisiana State University School of Medicine had taken a close look at how racial equity was covered in their curriculum and found it lacking. In 2017 they created the Critical Consciousness in Medicine project, which supplements their normal medical school curriculum. Madeleine DeGrange, one of four medical student leaders in the 2020–2021 school year, conducts two-hour sessions every month that examine implicit bias, institutional racism, health disparities, and other topics. Eventually, she would like to practice ob-gyn, but for now she is a full-time student while also functioning as a professor of sorts, gathering materials, recruiting speakers, and delivering monthly TED-like talks to the mostly white students in the class below hers.
DeGrange, who is Black, says that an experience working as a medical scribe set her on a path not just to acquire medical education but to help transform it. In 2018, after she graduated from the University of Miami with a degree in biology, she had a year to kill before she started medical school at LSU. During that gap year, she took a job as a medical scribe at Ochsner Medical Center in her hometown—the hospital where Simone Landrum had Kingston. This was an ideal interim job for DeGrange, the daughter of an anesthesiologist father and psychologist mother. She was responsible for taking notes for physicians during interviews with patients in the ER and writing up the encounters on medical charts. She hoped this experience would prepare her for her eventual role as a doctor herself and teach her how to listen deeply to patients in order to improve their care and treatment. But what she observed was the opposite; she was shocked by how little some of the ER physicians, mainly white, actually listened to their patients, primarily people of color. Instead, the doctors in the rushed emergency room environment cut off patients mid-sentence, hurrying them along and talking over them, denying them the time or space to tell their stories. The doctors made assumptions about the patients, not allowing them to speak for themselves or be proactive in their treatment decisions. DeGrange saw the frustration and fear in the faces of those patients, and she was reminded of her experience as a Katrina survivor.
In August 2005, when the hurricane hit New Orleans and destroyed her home and everything inside it, Madeleine DeGrange was just ten years old. Her family—her parents and two brothers—evacuated, first to Houston for two months, then to Houma, a town about an hour southwest of New Orleans, before they were eventually able to return home. That experience of fear, grief, loss, and displacement is part of the DeGrange family lore. Their story defines them and is integral to who they are. As Madeleine grew into adulthood, she understood that remembering the experience and sharing it was part of the healing for all of those who survived the hurricane. Similarly, she understood that for patients, telling their stories and being heard is part of the healing, and hearing them should be part of the job of physicians and other health-care providers. For providers, listening to patients encourages sound treatment and care decisions. Part of her goal now is to make sure that implicit bias and unconscious racial discrimination aren’t preventing her classmates and her from listening to and fairly treating patients who may be different from them.
On a national level, students at more than seventy U.S. medical schools have come together to form White Coats for Black Lives with the goal of eliminating racial bias in medicine and pushing medical schools to teach more about racial justice. They believe that the medical schools they attend and their affiliated hospitals where they first practice have failed to promote racial equity. Moved to action by the deaths of Eric Garner and Michael Brown and inspired by the Black Lives Matter movement, in 2014 students at the University of California, San Francisco School of Medicine, the Icahn School of Medicine at Mount Sinai, and the Perelman School of Medicine at the University of Pennsylvania put out a call, mainly through social media, for their peers of all races to stand in solidarity with communities protesting against racism and police brutality. On December 10, 2014, International Human Rights Day, some three thousand students at more than eighty medical schools across the country participated in a national die-in, publicly stating that health professionals must confront police violence and institutionalized racism. Under the hashtag #whitecoats4blacklives, their actions trended on social media and were covered by traditional media. In 2019, the group published its first Racial Justice Report Card to evaluate medical colleges on the basis of fourteen metrics, such as student and faculty diversity, racial integration of clinical care sites, treatment of workers, and research protocols that protect people of color from abusive practices. With these report cards, they hope to encourage academic medical centers to take seriously their responsibility to fight racism in the field.
On the West Coast, in 2020, a group of students in a joint MD/MPH program at the UCSF School of Medicine and Berkeley School of Public Health launched the Institute for Healing and Justice in Medicine. It had its roots in a class four students took in 2018 with Osagie K. Obasogie, PhD, an expert in bioethics who specializes in examining the hidden ways racial thinking has crept into medicine and science. As they learned more from their professor about the history of bias in medicine and the ways racism creates health disparities, they began to question the ways race was “biologized” in their textbooks and classes. Racial health disparities, they believe, are often wrongly attributed to biology and physiology of racial groups rather than to forms of oppression that create inequality. They also worried that in clinical practice they were mentored by clinicians who blindly follow guidelines that instruct them to prescribe based on race rather than overall effectiveness, even though the guidelines are built on a history of racism in medicine and health care. In response, the multiracial student group, all women, wrote “Towards the Abolition of Biological Race in Medicine: Transforming Clinical Education, Research, and Practice,” an exhaustive, evidence-based, peer-reviewed manifesto that argues that discrimination must be abolished in medicine and clinical research, education, and practice. They launched the report online in May 2020, and more than seven thousand people, primarily other med students, attended the national unveiling, and thousands more have viewed it since.
Beyond the individual decision making that may be tainted by implicit bias in health-care providers, student groups and others have focused specifically on the calculations and algorithms used to help physicians make medical decisions. In theory, the science behind medicine should be objective, rational, and evidence based, but like the race correction in measuring lung function, advanced centuries ago by the infamous Dr. Samuel Cartwright and still present in medical education and practice, these calculations can be blemished by racism. In August 2020, a study published in The New England Journal of Medicine found that algorithms used by hospitals and clinicians to guide medical decisions for tens of millions of Americans are contaminated by implicit racism and can result in Black people receiving inferior care. And students are still learning these flawed concepts in medical school.
The Institute for Healing and Justice in Medicine and other groups and individuals have been advocating for medical providers to abandon the race correction embedded in a common test for kidney function and for medical schools to stop teaching it. To determine kidney health, clinicians first measure factors such as the level of creatinine, a by-product of muscle breakdown, in the blood. Poorly functioning kidneys have a more difficult time filtering out creatinine, and a high level suggests that the renal system is not performing well. Physicians use an equation to combine this information into an eGFR score. In a Black patient, the eGFR is multiplied by a factor of 1.21, which makes kidney function look artificially better in Black patients even in the face of serious kidney problems. Underlying this race correction is the false assumption that Black people have more muscle mass than other individuals and thus higher levels of creatinine. Though I would never be referred to as muscular, while I was finishing this book, my own eGFR test came back with two options: one score if I were white, and a race-corrected option for me, a Black patient. These outmoded practices can have real consequences: African Americans suffer from kidney failure at a rate three times higher than whites and make up 35 percent of all patients receiving dialysis for kidney failure; the faulty test means that Black people must meet higher eGFR thresholds of kidney function in order to be diagnosed with kidney disease compared with individuals of other racial groups.
In 2020, Naomi Nkinsi, one of five Black students in her class at the University of Washington School of Medicine in Seattle, succeeded in getting her college to stop teaching this incorrect calculation. During a lecture, she was taught that race plays a role in kidney function with no further explanation. Concerned, she asked her professor, “What is the physiological pathway that links melanin to kidney function? How do you identify a patient as Black? What happens if the patient is mixed race or doesn’t look Black to the physician, but has Black ancestry?” And the only response she received was that Black people have more muscle mass. Period.
Angered and alarmed, she partnered with her college’s Anti-racism Action Committee and rallied other students and eventually some faculty members to force the school to stop teaching the race correction. Her coalition was able to show that there is no evidence of physiological difference in kidney function between Black patients and others. In May 2020, her school officially made the change. Other students at medical schools across the country have pressed their colleges to follow suit.
This section is supposed to be about hope, and I am excited by the energy and activism of the new generation of medical students, inspired by the commitment and kindness of community health workers—no matter what they are called—and hopeful that antiracism training can root out bias in individual providers. But sometimes hope gets slapped with a hard dose of reality: in September 2019, Stanley Goldfarb, MD, former associate dean of curriculum at the University of Pennsylvania’s Perelman School of Medicine, published an essay in The Wall Street Journal, “Take Two Aspirin and Call Me by My Pronouns.”
“At ‘woke’ medical schools, curricula are increasingly focused on social justice rather than treating illness,” he wrote, arguing for a rigorous curriculum that prepares students for today’s rapidly advancing medical science, rather than turning them into advocates for social and political issues. Three days later, the Journal’s op-ed page followed up with a piece cheerleading Dr. Goldfarb’s beliefs and condemning his critics. In April 2020, during the height of the COVID-19 pandemic, the Journal published another essay by Dr. Goldfarb in which he insisted that medical school curricula had ignored public health and disaster preparedness in favor of social issues. During an interview in 2021, Dr. Goldfarb argued with me that focus on racial disparities in maternal mortality was misguided and flawed.
In March 2021, during a podcast about structural racism in medicine, the deputy editor of the prestigious Journal of the American Medical Association stated, “Structural racism is an unfortunate term. Personally, I think taking racism out of the conversation will help. Many people like myself are offended by the implication that we are somehow racist.” A tweet about the podcast from JAMA’s Twitter account followed: “No physician is racist, so how can there be structural racism in health care?” Though the tweet and podcast have been deleted and the deputy editor and the editor in chief—both white male physicians—resigned, I was reminded of something one of my role models, the activist and author Audre Lorde, said to me. I asked her, before she passed away in 1992, if she thought racism in our country was dying out. She suggested that I was being overly optimistic and warned me that when something dies, it doesn’t just fade away; it fights to the death, desperately clinging to life, and goes out ugly. Bias and discrimination in medicine—and resistance to believing that they are real—may be receding, but they seem to be going out ugly.