Over the past few years, both the Black Lives Matter movement and the COVID-19 pandemic have brought significant attention to doctor mistrust among the Black population of the United States. This mistrust has had prominent impacts on the quality and accessibility of care for the Black community — especially when it comes to HIV testing and treatment.
Origins of Mistrust
During slavery and after emancipation, medical experiments were regularly conducted on Black people. Consent for these medical experiments varied, and there is no concrete historical data to help clarify what consent looked like. However, each time period offers important context. During slavery, there was no consent to these medical experiments. Meanwhile, during the Jim Crow era, consent was likely given for some experiments — including dubious consent, lack of consent, or even consent (though its definition would be dissimilar to today’s due to the case law development following these experiments).
One of the most known cases, the Tuskegee experiment was a large syphilis conducted in the South that has left lasting effects on the Black community.
Another major case that contributed to the mistrust of health care professionals is the Henrietta Lacks case, in which a Black woman sought medical attention for vaginal bleeding she experienced. Upon examination, doctors found that she had a large malignant tumor on her cervix, and she received treatment at Johns Hopkins for her cervical cancer. However, during those treatments, doctors removed samples from her tumor and began distributing them without her consent after discovering that her cells had properties that made them useful for studying other health conditions. Outside organizations that then received the “HeLa” cells obtained millions in profit, while Henrietta and her descendants never received any compensation. A research study conducted by Johns Hopkins has found that this history of medical experimentation — and particularly the disregard for the health of Black patients in the Tuskegee experiments — has formed a deep-seated fear and mistrust of doctors.
However, while such experimentation has exacerbated the mistrust and fear of harm by Black patients, it is not the sole contributor. In 2020, Kiki Monique, a viral content creator, articulated other reasons and stated, “Doctors are to Black women what police officers are to Black men,” regarding the national discussion of systemic racism in the U.S. While others focused on police brutality, which often leads to either death or injury for Black people, she highlighted the impact of physicians. Monique juxtaposed the treatment of Black women in the discourse of systemic violence in the United States to address some people’s beliefs that Black men were the only people to suffer unjust death and violence as a result.
Focusing on the impact of health care workers is critical, because, even in 2024, there are still medical professionals in the United States who believe that Black people feel pain differently than white people. Many also still believe in biological differences between Black and white individuals that continue to hurt Black patients. Studies have also repeatedly shown that despite similarities between patients regarding insurance status, age, and severity of conditions, racial and ethnic minorities often receive poorer quality of care.
Mistrust in HIV Treatment
The mistrust that Black Americans have in health care workers has contributed to racial disparities seen in HIV treatment. The Gardner Cascade or Treatment Cascade, a model used to describe distinct points of continued care for HIV patients, shows that African Americans have lower rates of HIV diagnosis and treatment at every stage in the Gardner cascade. This, in turn, leads to greater disparities in viral suppression.
A recent study found that the disparities between white and Black HIV patients can be connected to the mistrust in physicians, as trust in one’s provider is significantly associated with adherence to antiretroviral therapy and HIV-related health care visits — both of which are necessary for viral suppression. The study also suggests that improving the trust between Black patients and providers will help reduce disparities in antiretroviral therapy adherence and outcomes associated with adherence.
Additionally, some of the distrust and hesitance in Black patients is born from conspiracy theories surrounding HIV and its care and the sentiment that medical providers are not reputable sources of information to combat these conspiracy theories.
How to Build Trust
Bridging the gap of trust between Black communities and physicians is key to increasing the uptake of HIV treatment. Improving messaging and outreach to the Black community is critical as well. To repair the trust of Black patients, the medical community must: (1) recognize and apologize for the years of experimentation and lack of care; (2) change the understanding and teaching of pain and illness in Black patients; (3) research and teach what diseases look like in non-white patients; and (4) reach out to the Black community through trusted messengers.
By acknowledging the historical injustices to Black Americans, medical institutions and providers will take the vital first step of showing sincerity in their efforts to respect and improve the treatment of Black Americans. Such apologies may be hard-won, but they would mean much to Black Americans, who still have yet to receive all the apologies they deserve. The second and third steps involve changing the understanding and education on Black pain and illness and overhauling the current research and teaching of what diseases look like in non-white patients. These steps serve as a baseline for providing better medical care to the Black community in general settings, which will help bridge the gaps of mistrust in more specialized settings, such as HIV treatment and testing. The fifth and final step on this nonlinear path to equity, justice, and equality is reaching out to the Black community through trusted members of the communities. This step is a key way to combat mistrust and conspiracy theories regarding HIV that may be floating around Black communities. These messages must be directed towards Black Americans specifically and delivered in ways that resonate with the community by people they can trust.
The Black community is not unreachable nor unsavable. There needs to be systemic change at all levels of the health care system to help Black patients who have HIV now and to help decrease the number of new Black HIV cases in the future. Focusing on equitable and just health care starts in the waiting room, the offices of primary care physicians, and other first points of contact in diagnosing HIV. Doctors need to start before patients contract HIV. To do that, communication and trust are key.
DISCLAIMER: The views and opinions expressed in this piece are those of the author and do not reflect the views of the O’Neill Institute.
