Let’s (not just) talk about medical mistrust

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Vaccine Refusal. Vaccine Hesitancy. Since the rollout of COVID-19 vaccines, these phrases have been floating around the media. In light of vaccine refusal and hesitancy, particularly among Black and Latinx communities, many have tried to understand why. Medical professionals, public health practitioners and the media have come together to label medical mistrust as the driver behind the decreased uptake of COVID-19 vaccines.

Medical mistrust is defined as suspicion or lack of trust in medical organizations and professionals. This term has deep historical roots stemming from experiments like the Tuskegee Syphilis Study, which denied Black participants effective treatment for syphilis in the name of science, and the violation of Black female bodies by James Marion Sims, “the father of modern gynecology.”

Today, the medical community continues to harm Black and Latinx communities through racist medical training and practices. Undoubtedly, the medical institution’s past and current mistreatment of Black and Latinx bodies play a role in vaccine hesitancy. But the media and medical community’s intense focus on medical mistrust is actually perpetuating harm.

Why is the focus on medical mistrust harmful?

The term medical mistrust blames Black and Latinx communities. It emphasizes that there is something inherently wrong with Black and Latinx people’s perception of and trust in the medical system, an equivalent to victim-blaming. These patterns of thinking can lead practitioners to blame patient’s mistrust as reasons for noncompliance with treatment or medication. Furthermore, the notion of fixing Black and Latinx patients’ mistrust perpetuates notions that these individuals’ mistrust is abnormal when in reality their mistrust is rooted in their disproportionate suffering at the hands of medical institutions.

The language of and conversations around medical mistrust fail to acknowledge that the medical institution itself needs to be fixed. These conversations also do not recognize that targeting Black and Latinx communities with messaging related to vaccine safety does nothing to address the underlying mistrust or harm.

Focus on medical mistrust ignores the systematic barriers that cause Black and Latinx communities to be wary of the vaccine. A survey conducted by Texas A&M School of Public Health revealed that Black Americans cited safety concerns and a lack of financial resources and health insurance as reasons for vaccine hesitancy and refusal. The conversations today do not highlight the lack of guaranteed paid sick leave if employees experience side effects from the vaccine, the minimal financial protections for people who become ill from the vaccine and need to seek medical treatment, or the long distances some individuals have to travel to receive the vaccine, among many other reasons. By only choosing to widely acknowledge medical mistrust at the individual level as the root cause of decreased vaccine uptake instead of medical racism or structural inequality, we are effectively silencing communities of color.

Our conversation about medical mistrust condones us to avoid conversations about the inequitable distribution of COVID-19 vaccines. While there are many Black and Latinx individuals who are choosing not to receive the vaccine right now, there are also Black and Latinx individuals who do want to get vaccinated but can’t due to inequitable access. Recently, Kaiser Health News highlighted that at some hospitals, janitorial staff, who are primarily people of color, are being excluded from vaccine registration emails, even though they are exposed to COVID-19 at similar rates as health care professionals. In Texas, state leadership slashed plans to prioritize vaccinating communities of color, arguing that vaccines should be made widely available to everyone. Furthermore, there is a lack of conversation on how the time and resources needed to navigate the confusing vaccine websites or to call for an appointment are not afforded to communities of color.

Given all this, what can we do? To start, we need to explore alternatives to the term medical mistrust. We can start by using language such as medical trauma, racism or inequality, which more accurately reflect the medical institution’s history of causing harm. Using this language prevents us from blaming communities of color who are already being disproportionately harmed in this pandemic. It also redirects medical mistrust from being something that individuals or communities experience to a phenomenon that is created by a system of inequality.

If we are truly invested in equitable distribution, then we also need to have conversations about structural change, not just individual behaviors and beliefs. We should urge the medical community to train and compensate willing community members to give vaccines in nonclinical settings such as people’s homes, grocery stores or parks. In Berkeley, city officials have taken the first step toward equitable distribution by partnering with local Black churches and community organizations to offer vaccines to individuals who cannot easily access mass vaccination sites or make appointments online.

We should also implore the federal government to strengthen labor protections to protect people of color who do choose to get the vaccine. Ultimately, we must challenge the medical community to center the voices of Black and Latinx communities and experts amid the vaccine rollout. We are still in the early stages of vaccine administration, meaning there is still time for us to change our language and approaches to promote equitable delivery of COVID-19 vaccines.

Dorothy Han is a graduate student studying epidemiology and biostatistics at UC Berkeley’s School of Public Health. Her interests lie in public health advocacy, community building and health equity.