Restoring Healthcare Trust in the Black Community: Key Strategies

Distrust and fear of the medical establishment are embedded deeply within the Black community. A 2020 study by the Commonwealth Fund reported that 7 out of every 10 Black Americans say they’re treated unfairly by the healthcare system, and 55% say they distrust it. While, generally, trust in the healthcare system in America has declined – especially during the Covid pandemic – 55% distrust is extraordinarily high.

The Black community’s widespread view of the healthcare system is irrevocably linked to their systemic mistreatment by the medical establishment dating back to the 19^th century. Re-establishing trust is essential for improving healthcare delivery to this community, and addressing the issue means reviewing its historical roots.

A History of Abuse and Mistreatment 

Sadly, Black Americans’ mistrust of America’s healthcare system is based on a well-documented history of mistreatment.

Before emancipation, enslaved people provided the human bodies which medical institutions opportunistically used for scientific research. Invasive surgeries, unnecessary Caesarean sections, fatal brain probes, limb amputations, electric shock, and tests on how bodies respond to boiling water were cruel yet standard procedures performed without anesthesia on the enslaved population. Often the pain was so unbearable that researchers used restraints.

This barbarism in the name of science means distrust is rooted deeply in the Black community and passed on from generation to generation.

The researchers performed these cruel experiments—torture in all but name, quite openly. Doctors, medical researchers, and institutions conducted their research and proudly published test results in the most prestigious medical journals of the day. Records of forced experiments on enslaved people are documented in the pages of The Baltimore Medical and Surgical Journal and the Western and Southern Medical Recorder.

Tuskegee Syphilis Experiment 

In the modern era, one of the most horrific and notorious events to exemplify the medical establishment’s abuse and mistreatment of Blacks was the Tuskegee Syphilis Experiment. Conducted from 1932 to 1971 and sponsored by the United States Public Health Service (USPHS), the study tracked the spread of untreated syphilis among hundreds of Black American men for 40 years. There was no cure for this sexually transmitted disease when poor rural Blacks were infected with syphilis without their consent. The USPHS-sponsored research studied the effects of untreated syphilis among these men and on their wives, girlfriends, and children.

This shameful experiment clearly violated the Nuremberg Code, created in 1947 to protect humanity against unethical medical experiments such as those conducted by Nazi doctors.

In 1943, scientists discovered that penicillin could cure syphilis, but the USPHS did not offer any Tuskegee men the new treatment, compounding the effects of this criminally unethical study. The research was finally shut down in 1972 when AP reporter Jean Heller published the story in The New York Times from information leaked by whistleblower Peter Buxtun.

Philadelphia’s Holmesburg Prison Horrors

For over 20 years, from the 1950s – 1970s. The city of Philadelphia allowed University of Pennsylvania researcher, dermatologist Dr. Albert Kligman, to perform toxic experiments on hundreds of inmates in return for small payments. As the prison population was predominantly Black, Black inmates suffered the brunt of these experiments. Some of which were akin to torture. As NPR describes, the men endured “… dermatological, biochemical and pharmaceutical experiments that intentionally exposed about 300 inmates to viruses, fungus, asbestos and chemical agents including dioxin — a component of Agent Orange, which would later devastate Vietnam.

There were 33 sponsors of these experiments in Holmesburg Prison, including Johnson & Johnson, Dow Chemicals, and the U.S. Army. On October 6, 2022, the City of Brotherly Love formally apologized. However, due to the statute of limitations expiring, the lawsuit filed by former inmates in 2000 was thrown out.

Distrust in the Modern Era

The lengthy history of unethical medical experiments has unsurprisingly created a deep distrust of the medical community in the collective Black American psyche. The examples of Tuskegee and Holmesburg Prison were not isolated incidents. While progress has been made through government oversight and legal accountability, a trust gap still exists. Poor communication from medical providers often results in undertreatment and ignored concerns.

All-time tennis great Serena Williams shared an IG post detailing her post-birth life-threatening health scare in 2017. Williams’ international superstar status did not make her immune to medical neglect. Shortly after giving birth, Williams experienced shortness of breath and numbness in her limbs. As an athlete, Williams is very attuned to her health history and physical well-being. With a history of lung blood clots going as far back as 2010, she understood something was wrong.

Despite her accomplishments and fame, the nurses and doctors failed to listen to their patient. Instead, they condescendingly treated the tennis star as hysterical, difficult, and overacting. Eventually, Williams had to figuratively ‘jump up and down,’ demanding a CAT scan. The test results confirmed her fears, and she required life-saving surgery.

In April 2023, three-time Olympic medalist and world champion sprinter Tori Bowie tragically died from complications during childbirth. She was just 32.

These are not isolated incidents. Many Black women report having their concerns ignored and unheard. According to the Centers for Disease Control, Black women are three times more likely to die from preventable complications during and after childbirth than their white counterparts.

The Health Ramifications of Distrust

Williams’ and Bowie’s experience encapsulates the Black community’s multi-layered distrust of the medical establishment. This distrust and fear contribute to the health, wellness, and life expectancy disparity between Black and white America.

These disparities exist from cradle to the grave. Black children are five times more likely to die from asthma in childhood than white children. As for life expectancy, the average white person will live around six years longer than the average Black.

Far too often, early preventive care, screening, and treatment for heart disease, high blood pressure, diabetes, and cancer (to mention a few) are neglected. Hospital emergency room visits often become the only medical treatment for Black urban and rural communities instead of primary doctor visits and regularly scheduled medical screening. When patients visit the ER, it is often too late to treat their long-term medical issues effectively. As a result, far too many Blacks die unnecessarily before receiving their social security benefits.

More Trust, Better Health

That Black patients have a higher degree of trust and feel more comfortable with Black doctors has been well documented. Research studies have consistently concluded that Black people live longer and healthier in communities with access to Black doctors. These patients feel better understood, valued, and cared for by doctors they identify with, making them more likely to comply with preventative tests and care recommendations.

From these studies, it becomes clear that the medical community must try harder to build trust by being more attentive to Black patients’ concerns and understanding the root of their fear. In recent decades, efforts have been made both in governmental policies and in private agencies to build accountability and advocacy for patients to build trust.

Accountability

One factor in building trust in the medical system comes down to accountability. Past examples of unethical treatment resulted from a lack of oversight and regulations to hold medical professionals and institutions responsible. In recent decades, governmental agencies have been established to oversee the medical industries, set guidelines for treatment, and advocate for patient rights. The Centers for Disease Control, the Food and Drug Administration, and the American Medical Association are examples of such institutions on the national level that hold the medical industry accountable. Together with State and local agencies, they set regulations and guidelines for medical service providers and researchers and advocate for patient rights by providing information and resources. Patients are more likely to seek medical care when they know that their doctors must follow a certain standard of practice.

The legal system has also been a factor in holding the healthcare industry accountable. Patients who feel they’ve been mistreated can take their case to the courts for resolution and compensation. Medical malpractice lawsuits often result in fines and compensation. Malpractice suits can even lead to a loss of medical licenses, and this harsh punishment acts as a deterrent against mistreatment.

Black Health Advocacy

For patients who have difficulty finding doctors they trust, a Black health advocacy group can support them. For instance, The Center for Black Health & Equity (CBHE) is an advocacy organization promoting awareness, prevention, nutrition, maternal care, and mental health. In addition, they mobilize communities to act via webinars, events, and social outreach. The organization’s mission is to “facilitate programs and services that promote health equity” for Black patients. CBHE focuses on capacity, infrastructure, and advocacy to address social and economic disparities. They are working to ensure that medical care is available in a community and to help community members access the care they need.

The Center for Black Health & Equity is one of many organizations and resources dedicated to Black health. A quick Google search brings up many others, from those focusing on specialized health concerns to others addressing overall healthcare access, such as insurance and finding doctors.

The Road Ahead

While there’s a long road ahead, we are progressing in rebuilding trust between Blacks and the medical community. The medical industry and advocacy agencies have increasingly engaged the media to open dialogue about bridging the trust gap and equity in access to medical care. Closing the gap is increasingly seen as being in the best interests of healthcare, society, and the economy.

Edited by Michael Moss

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