April 10, 2026, 5:00 a.m. CT
- Medical mistrust from Black patients often stems from historical and ongoing experiences of racism and unequal treatment.
- In Wisconsin, Black infants are three times more likely to die before their first birthday than white infants.
- Historical events like the Tuskegee Study and the case of Henrietta Lacks contribute to this deep-rooted distrust.
- Building trust through listening, acknowledging history, and shared decision-making can improve health outcomes.
“I do not need medications for diabetes, I feel perfectly fine, this is just another way that you guys try to get me, I am good without them.” – Ms. H
On the surface, a statement like this may be easily dismissed, as African-American patients like Ms. H are more likely to be labeled “difficult” or “non-adherent to treatment” in our current healthcare system. However, digging deeper to find the underlying belief behind a statement like this can have far-reaching beneficial outcomes for the health of both individual people and entire communities.
Medical mistrust plays a significant role in fueling health care disparities experienced by Black people in Milwaukee, across Wisconsin, and nationally, particularly in the devastatingly high rates of infant mortality in these communities.
In Wisconsin, Black infants are about three times more likely to die before their first birthday than white infants, placing the state among the worst in the nation for Black infant mortality — a disparity driven not only by socioeconomic stressors but also by cumulative experiences of racism, discrimination, and unequal treatment in the health system that erode trust between families and providers.
What is medical mistrust?
The mistrust in the medical system has far-reaching impacts, affecting medication and treatment adherence, emergency department utilization, and rate of adverse health outcomes.
“Medical mistrust is a social determinant of health fueled by an individual’s fear of harm and exploitation, presenting as suspicion of and lack of confidence in health care providers and systems, and is experienced at for the interpersonal, intergenerational, and institutional levels, reinforced by historical precedents and ongoing structural racism and systemic inequalities,” according to a 2025 study published in the medical journal Nursing Reports.
On any other given day, Ms. H’s statement is something that could have been taken at face value; she didn’t want any medications, I could document that she declined on her medical record and move on — but the deeper meaning in understanding her perception could have potentially life-changing consequences. Studies show that compared to other adults in the US, Black adults were more than twice as likely to develop diabetes-related kidney failure. They also had significantly higher complication rates from diabetes including amputations and were twice as likely to die of diabetes.
On further conversation with Ms. H, she revealed longstanding distrust rooted in her own previous experiences feeling unheard when expressing her concerns with a paternalistic physician and the way Black people have historically been treated by medicine and medical research.
Black Americans have good reason for medical distrust
As a primary care physician, we’re taught that taking a good patient history matters; but in another meaning, history reveals our first insight into what healthcare has done to and benefited from African Americans, including:
- The Tuskegee Study – a 40-year experiment that studied the progression of untreated syphilis that ran until 1972, long after treatment was available. 600 black men were recruited under the pretense of free healthcare by the U.S. Public Health Service who suffered severe health consequences and even death.
- Henrietta Lacks, from whom, without consent, cervical cancer cells were obtained that drove several key advancements in cancer and HIV/AIDs care.
These are only a couple historical examples in an ocean of scientific advancement that was driven by the suffering of the African American community without their consent. Acknowledging this history is a significant step in helping to rebuild trust.
In Wisconsin, expansion of community health workers under the Wisconsin Department of Health Services’ Minority Health Program has proven to be a vital step in further bridging the gap.
The key tenets on the road to equity in medicine lie in:
- Acknowledgement and validation (ask, acknowledge and ascend )
- Recognition of implicit bias
- Culturally competent care
- Shared decision making and respecting a person’s autonomy
- Increasing workforce diversity and representation
For Ms. H, the simple act of listening and validating her experience drew us closer and built the trust that we needed. Her ability to share in the decision-making process formed the crux of our relationship. After all, our shared goal remains the same — to see her live a long and healthy life.
Tarun Thomas, MD is a family medicine resident physician practicing in Milwaukee. His clinical interests include obesity medicine, addiction medicine, point-of-care ultrasound, and chronic disease management. Priyanka Kulkarni, MD is a family medicine resident physician practicing in Milwaukee. Her clinical interests include addiction medicine, chronic disease management, women’s health, and underserved health.
