Everyone’s Talking About Racism, Medical Mistrust, and COVID-19. Where Do We Go From Here?

This article is part of "How We Can Do Better," a new series on TheBody and TheBodyPro that imagines not just what we can do to repair the damage of the past four years in the U.S., but to replace the priorities, principles, and structures that in some cases have actually worsened inequities in HIV prevention, care, and treatment access, or have failed to address stigma or discrimination in health care.

Starting mere days after the approval of the first vaccines for COVID-19, we have been hit with an onslaught of daily headlines documenting the skepticism and mistrust felt by Black communities.

• “Many Black Americans Don’t Trust a COVID-19 Vaccine” (The Today Show)
• “Experts Warn of Low COVID Vaccine Trust Among Black Americans” (NBC News)
• “Inside the Attempt to Build Trust About the COVID-19 Vaccine in Black Communities” (PBS NewsHour)
• “Tuskegee Experiment History Leads to Coronavirus Mistrust” (KSLA)
• “Push is on to Increase African American Confidence in COVID Vaccine” (NNPA)

But here we are—after hundreds of articles, think pieces, and pleas for Black Americans to get vaccinated—and, if survey data is any indication, we are not very far from where we started.

According to a Kaiser Family Foundation (KFF) analysis released in January, Black Americans are getting vaccinated against COVID-19 at lower rates than whites, due to both a lack of access and mistrust rooted in structural racism. And findings from a separate KFF survey, also out in January, revealed that 52% of Black adults say they are “not too” or “not at all” confident that the current vaccine distribution efforts are taking into account the needs of Black people. Black adults also expressed higher levels of frustration and confusion about the current status of vaccinations in this country than their white and Hispanic/Latinx counterparts.

Now, with the vaccine rollout underway, inequities in its distribution are drawing particular concern. There have been numerous reports, for example, that some U.S. distribution sites, despite being set up to serve predominantly Black, Indigenous, and people of color (BIPOC) communities hit hardest by the virus, are prioritizing white vaccine-seekers.

Experts say that until the health care system takes responsibility for inequities and mistrust, in the case of the COVID-19 vaccine and otherwise, we should expect more of the same.

“Medical mistrust has not decreased, because the root causes—societal inequity and structural racism—have not been addressed adequately in the U.S.,” says Laura M. Bogart, Ph.D., a senior behavioral scientist at the RAND Corporation whose research focuses on health disparities, primarily in the areas of HIV prevention and treatment, stigma, and medical mistrust. “It is absolutely imperative that we reframe the conversation about medical mistrust.”

Mistrust Is “Rational and Reasonable”

The roots of medical mistrust within Black communities can be traced back to America’s history of medical violence—documented and undocumented—during the eras of slavery and segregation. “In Black communities, mistrust is deeply rooted in systemic racism, including personal and historical experiences with discrimination,” says Bogart.

But while this country’s brutal past produced enduring mistrust, there’s no denying that the structural racism and inequities built into the U.S. health care system continue today to inform and fuel it. Racism in health care shapes the experiences of Black patients with providers and medicine as a whole, deepening disparities—as we’re seeing with COVID-19 infection and death rates—and revealing itself in varying forms: Disrespect and poor communication. Disregarded symptoms and concerns. Reluctance to recommend screenings and other preventative care. Delayed diagnoses, if there’s a diagnosis at all. Today, for example, we hear stories of Black people being denied or not offered pain medication by medical professionals. (Of note, a 2016 study showed that a significant percentage of white medical students and residents still wrongly believed that Blacks feel less pain than whites, and they therefore were more likely to recommend inappropriate medical treatment for Black patients.)

Bogart says mistrust is one way to cope with the stresses of these harmful experiences. “It is rational and reasonable to have a healthy amount of mistrust, to put one’s guard up, if one has experienced poor treatment, or if members of one’s racial or ethnic group as a whole have been mistreated and oppressed over centuries,” says Bogart. “In psychological terms, these kinds of mistrust beliefs fulfill a desire to make sense of extreme health inequities in the face of the continued threat of discrimination.”

Black people’s suspicions surrounding the COVID-19 vaccine, too, are in part rooted in having been involuntary participants in numerous exploitative, unethical, and even deadly medical experiments, in past decades and as recently as the 1990s. “This mistrust has been heightened during the COVID-19 pandemic, especially due to a national awareness and dialogue around COVID-19 inequities as well as recent events of police brutality,” says Bogart.

Community Engagement Is a Must—as Is Taking Lessons From HIV

If we’re to address the lack of trust within Black communities—with respect to and beyond COVID-19 vaccination—and carve out a path forward, experts say, the health care system and its stakeholders first will need to reckon with both its racist past and present and, in the process, accept responsibility for the resulting mistrust.

“As many leaders and scientists in the Black community have already stated, the onus is on the public health and scientific communities to prove that they are trustworthy,” says Michele P. Andrasik, Ph.D., director of Social and Behavioral Sciences and Community Engagement at the HIV Vaccine Trials Network. Much of Andrasik’s work focuses on bias and how bias plays out in prevention, diagnosis, and treatment. That includes concerted efforts to address multi-level bias and institutional racism, says Andrasik. “We need programs that address bias among providers and within our institutions—not only its impact on patient and provider relationships and health outcomes, but also in the way that institutional bias plays out in the way patients are treated,” adds Andrasik.

Authentic community engagement, too, is essential to building trust, in both the short term, with the rollout of the COVID-19 vaccines, and over the long term. What that looks like for the COVID-19 vaccine, says Andrasik, is enhancing the capacity of longstanding Black community organizations to ensure community-based vaccine distribution. “It also involves identifying Black health providers and lifting up their experiences with both COVID-19 and their vaccination,” says Andrasik.

Bogart agrees that community involvement is a must, and she says there are a few lessons to be learned from how mistrust in HIV prevention and treatment has been approached over the years. “One key important point we have learned from HIV is that, to have any impact, it is essential to engage community stakeholders as equal partners in the solution and recognize that community members who are most affected by inequities are experts on what is feasible and acceptable in their communities,” says Bogart. “For Black communities, any solution needs to be tailored by local community priorities, access, and needs, taking into account the perspectives of the people who are experiencing the direct effects of inequities and injustices.”