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Fewer Black People Are Getting the COVID-19 Vaccine—and It's Rooted in Distrust of the Health Care System

The COVID vaccine is rolling out across the US—but the larger medical system is still struggling to talk to vaccine-hesitant Black Americans with empathy while acknowledging their skepticism.

I walked into a top teaching hospital in Chicago with what I thought was a headache that wouldn't go away. A few hours and two spinal taps later, I'd seen three doctors who discussed me without speaking to me, and I was discharged before I knew it. "But I'm still in pain," I quietly repeated. The consensus was that the fluid behind my eyes was drained, and I should be fine. "Now, the headache is worse when I stand up," I said. I was told there should be no pain, and it was made clear that I would not be given a prescription for pain medicine. 

My sister walked me out of the hospital, and I cried. I cried from the pain that flooded my head every time I was upright, and I cried from feeling judged and dismissed. I spent the next week unable to get out of bed. I knew something was wrong, but I couldn't bring myself to go back to the same hospital that left me feeling undeserving of care. Finally, I took a taxi to a hospital in a neighborhood where I knew I'd see Black doctors and nurses. They quickly diagnosed me with a cerebrospinal fluid leak, a potentially life-threatening condition. The doctor patched the leak, admitted me for observation overnight, and released me with orders for bedrest. I left crying—this time because I was out of pain and finally felt cared for.

Since that experience almost 10 years ago, I have cautiously avoided going to the doctor. When I was pregnant with my son, I found a Black obstetrician with excellent reviews. If anyone would listen to my concerns, treat me with compassion, and hold my life in their hands, it would be her. Though the clinic required moms-to-be to prepare for either of the four doctors at the practice to deliver their baby, I begged her to be on call the day I went into labor. She couldn't promise that, and I knew it.

Yet there she was at the foot of my bed—smiling, reassuring me, referring back to my birth plan, and talking me through everything to gain consent. I had a difficult pregnancy marked by extreme illness and ending in premature labor. With the statistics for Black women in childbirth so startling, I often wonder if my son and I would have lived without her. I don't trust that we would have, and that distrust is not only personal but historical.

To date, approximately 68,000 Black Americans have died of COVID-19
Source: The Atlantic's COVID Racial Data Tracker

To date, approximately 68,000 Black Americans have died of COVID-19, and at 1.4 times the rate of white people, according to The Atlantic's COVID Racial Data Tracker. That Black folks make up a disproportionately high number of casualties is not entirely surprising, given the longstanding health care inequality between white people and people of color—inequality that has created lingering distrust of the US medical establishment in Black communities. This distrust could be the reason white people have been vaccinated for COVID at a much higher rate than Black people in the 16 states that track vaccinations by race, according to a January analysis by Kaiser Health News.

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Left: Credit: Caitlin-Marie Miner Ong

"People aren't mistrusting the medical system," Daniel B. Fagbuyi, MD, an emergency room physician in the metro Washington, DC area and former Obama administration public health appointee, tells Health. "The medical system has actually violated the trust." Here's how this violated trust began, why it continues to manifest today, and what it will take for Black people to feel like the US health care system has their backs.

The origins of doctor distrust

The history of medical abuses against Black Americans is a long one, says Dr. Fagbuyi. "The medical community has lost the people's confidence because it has done some things that were wrong, some bad things, so we have to say what it is."

That means starting with slavery. Dehumanized as enslaved people, Black Americans didn't have the same access to medical care whites did, if they had access at all. After slavery ended, many researchers in the medical establishment became steeped in eugenics, or the false belief that people of some races were physically and intellectually superior to those of other groups. The pseudoscience of eugenics led to systemic medical discrimination, including the forced sterilization of up to 60,000 so-called "mentally unfit" women, many of whom were Black, roughly from the 1920s through the early 1970s.

The pseudoscience of eugenics led to systemic medical discrimination, including the forced sterilization of up to 60,000 so-called "mentally unfit" women, many of whom were Black,
Sources: The Institute for Healthcare Policy and Innovation

During those same decades, scientists were administering the Tuskegee Experiment. From 1932 to 1972, the US Public Health Service conducted a study on approximately 600 Black men, the majority of whom had syphilis. The men with syphilis thought they were receiving treatment, but they were not. Even though penicillin was introduced as an effective cure for the disease in the 1940s, the men were untreated by the researchers and observed for years. Many died of the disease and unknowingly infected their partners. The Tuskegee study made national headlines in the 1970s, but outrage about it persists to this day.

Another infamous 20th century case concerns Henrietta Lacks, a Black woman with cervical cancer who went to Johns Hopkins hospitals for treatment in 1951. Lacks died of the disease later that year, and without her consent or knowledge, providers took samples of her cervical cells and donated them to researchers. Her cells are still used by researchers today, and they've helped deepen scientific knowledge of viruses, including COVID-19, as well as other medical treatments. It was only in 2020, ten years after Lacks' story was publicized thanks to a bestselling book, that her survivors were given compensation.

Modern health disparities made things worse

Hayley Thompson, PhD, associate director of Oncology Community Outreach Engagement at Karmanos in Detroit, tells Health that the lack of trust Black communities have in the medical system is part of the larger conversation about racial health disparities. Thompson, who has dedicated her career to disparities research, says medical mistrust plays a direct role in continuing these disparities—aka, the starkly different health outcomes of Black people not just when it comes to COVID but conditions from high blood pressure to diabetes to cancer.

Structural racism contributes to these disparities—it has made it much more difficult for Black Americans to have what's called the "social determinants of health," such as safe housing, access to doctors, and an availability of healthy food. "Communities and neighborhoods are structured in such a way that low-income and Black and Brown folk live in communities where the opportunity for living a healthy lifestyle is challenging," Melody Goodman, PhD, associate dean for research and associate professor of biostatistics at NYU School of Global Public Health, tells Health.

Goodman believes that both racism and the distrust in the medical system that comes along with it have been allowed to brew in the background for far too long. "Black Americans have been a subordinate class in this country, whether we want to admit it or not, since the time of slavery," she says. "The way our society is set up, we often don't think to protect our most vulnerable. And so when a group is vulnerable, they're often blamed for their vulnerability, even though social, political, and other structures have usually set up society so that the vulnerable remain vulnerable."

Black health care professionals, such as Dr. Fabguyi, Goodman, and Thompson, are working to reverse the harm and do what the larger medical system is still struggling to do: talk to vaccine-hesitant Black Americans with empathy while acknowledging their skepticism.

"We need to be honest and appreciate the fact that the skepticism is valid," says Goodman. "The health community has not treated [Black] communities well. These communities often are not the first to receive new and novel and important medical care. So when you want to give someone something first and you've never given them something first, I think a little skepticism is warranted."

As it is, the health care system is not serving Black people with respect. "[Black people] won't go see the doctor or their provider due to fear, or lack of information, or maybe in some cases, condescending remarks or feeling like they are not being heard, or given good alternatives," says Dr. Fabguyi.

It's not just individual doctors and health care teams that need to revisit how they approach Black communities—research suggests that health technology may also discriminate. An October 2019 study in the journal Science found that the software used by many US hospitals prioritized the care of white people over the care of much sicker Black folks.

In December, a New England Journal of Medicine report showed that the pulse oximeter, a common device used in hospital triage to measure blood oxygen levels, gives erroneous readings in people with darker skin, a discrepancy that could mean life or death for Black patients. This finding is not new. Studies dating back as far as 2005 flagged the error and its potential harm. Almost 15 years later, the inaccurate readings are still being reported.

Building trust—and beating COVID

Thompson is hopeful that COVID-19 has made many people more aware of the role of implicit bias in health care. The pandemic has also brought renewed focus to the importance of culturally sensitive health care. 

In New Orleans, where Black people account for three out of every four COVID deaths, the city's public health agencies have gathered a group of leaders and icons in communities of color to deliver vaccine-promoting messages. Featuring themes from cultural events such as Carnival and Mardi Gras, the "Sleeve Up, NOVA" ads brought an upbeat, hopeful tone by Black people to Black people—an approach Dr. Fagbuyi says is an "example of culturally competent communication."

"When it comes to finding solutions around problems that we see in our health care systems…it's really important to engage and partner with communities, especially communities of color," says Thompson. "It not only builds relationships with those communities; it can help build trust."

On the national level, President Biden signed an executive order on January 21 that aims to ensure the nation has an equitable pandemic response and recovery. The order states that "The Secretary of HHS shall conduct an outreach campaign to promote vaccine trust and uptake among communities of color and other underserved populations with higher levels of vaccine mistrust due to discriminatory medical treatment and research, and engage with leaders within those communities."

"frankly we're not able to navigate the system well, because the system was set up to fail"
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Right: Credit: Caitlin-Marie Miner Ong

The National Medical Association (NMA)—a professional society of Black doctors—vetted both the Pfizer and Modern vaccines after they were granted FDA approval in December. The NMA gave each vaccine their own seal of approval as part of a broader effort to combat vaccine hesitancy among communities of color.

The Black Coalition Against COVID-19 is also taking action nationwide. This group of doctors and other health-care experts "is a Washington, DC-based community initiative which seeks to provide trustworthy, science-based information curated on behalf of and for the Black community about COVID-19 and the vaccine development process in an effort to help save Black lives at the national and local levels." One of its latest efforts was this town hall that included national experts; their website also contains information about the vaccines.

In cities across the nation, Black doctors have stepped into dual roles as physicians and community liaisons. In Philadelphia, the Black Doctors COVID-19 Consortium, a nonprofit effort executed by a group of the city's Black doctors, hosts free COVID testing and plans to start administering the COVID-19 vaccine in Black communities to residents who sign up.

"No one asked us to do it. It wasn't our job. It was that African Americans, their lives were not being valued, and we decided collectively that we were going to change that and try to level a playing field that's never been leveled," the group's founder Ala Stanford, MD, told MSNBC

Still, Black doctors are in short supply. Only 5% of America's doctors are Black, despite the fact that Black people make up about 13% of the population. To remedy this, the American Medical Association has started working with historically black colleges on recruitment efforts and introducing children in communities of color to medicine through mentorship programs, among other initiatives to improve health equity. 

To reverse racial health disparities and chip away at medical distrust, Thompson says researchers and medical providers must acknowledge that legacy of racism, "not only within medical health care systems but also in the broader society." To do that, she explains, requires Black communities to be a part of the discussion. Until then, as long as the medical field remains disproportionately white, there's still work to be done within the existing system.

"We also need to look beyond what happens within our hospitals and our academic institutions that influences medical principles," says Thompson. "What happens in the wider world? We need to kind of look beyond our four walls and think about what we are contributing to larger issues of social justice and equity."

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