Systemic Racism: Untrustworthy Actions of the Healthcare System and the COVID-19 Vaccine

Editorial Note: This post is part of our blog series about diversity, equity, and inclusion. These posts are written by staff on our Equity Committee and originally shared internally. We're sharing them publicly to be transparent about our internal dialogue, reflections and learning process as we work on being an anti-racist organization.

Throughout the past year I have anxiously awaited the COVID-19 vaccine. As a white woman who grew up trusting the medical (and other) systems that were designed to meet my needs, when news reports started airing about reluctance of people in the BIPOC (Black, Indigenous, people of color) community to receive the vaccine I could not understand, especially given the health and economic impacts that have disproportionately fallen on our BIPOC neighbors.

I began to research the instances of systemic racism in the healthcare systems, and quickly started to understand how the health care system’s actions have reduced its trustworthiness and now impacts the willingness of some communities to get the COVID-19 vaccine.

In a March 11, 2021 article in Native News Northwest, Abigail Echo-Hawk, director of the Urban Indian Health Institute (UIHI) said,

“Willingness to receive a vaccine and hesitancy are not mutually exclusive. Fear and distrust of government and medical systems still exists in our community, which are hurdles that we have to overcome.”

American Indian and Alaska Native people continue to be disproportionately impacted by the Covid-19 pandemic. The Covid-19 incidence and mortality rates are 3.5 and 1.8 times that of non-Hispanic whites, respectively.

A study released last Thursday by the UIHI says 75 percent of American Indians and Alaska Natives are willing to receive the Covid-19 vaccine. According to the UIHI study, The primary motivation for participants who indicated willingness to get vaccinated was a strong sense of responsibility to protect the Native community and preserve cultural ways.

The medical systems mistreatment of communities of color make it more likely they will distrust the COVID-19 vaccine

An article written by Jennifer Richmond, “What Can We Do About Medical Mistrust Harming Americans’ Health?”, and published by the Interdisciplinary Association for Population Health Science, raises some disturbing questions and offers some ideas for change.

She asks the question,

“Why should people trust a healthcare system that historically abused people of color and continues delivering suboptimal care to diverse communities?

…R]esearch suggests that people of color get worse healthcare than do white Americans and that your chance of receiving high-quality healthcare may depend on your race or ethnicity.”

The medical establishments unwillingness to acknowledge that “most healthcare providers harbor implicit biases that spark negative attitudes towards people of color and may affect treatment decisions” needs to change. Jennifer also asks:

“What can we do about medical mistrust?

“[…]To move forward and regain trust, healthcare systems must accept responsibility for past injustices (e.g., unethical research practices) and work to end current injustices (e.g., widespread medical errors and disparities in quality of care). Healthcare systems should also measure and track trust and take action when indicated to earn public trust in their organizations.” Healthcare systems must recognize that the work will not be easy or simple and will require some innovative and often controversial thinking.

Jennifer points out, “It’s time to get creative and uncomfortable and start working towards a healthcare system that deserves public trust”.

Examples of Untrustworthy Behavior of the Medical System

Havasupai Tribe

In 1989, the Havasupai Tribe agreed to allow the Arizona State University to study their communities’ blood samples to determine if there was a genetic reason for their increased rates of diabetes. The tribal members who signed a consent form believed they were giving consent for the study of diabetes only. Instead, researchers went on to study and publish findings on several unrelated medical conditions, as well as the tribe’s likely historical origins.

Forced Sterilization

Jane Lawrence documents the forced sterilization of thousands of Native American women by the Indian Health Service in the 1960s and 1970s—procedures thought to have been performed on one out of every four Native American women at the time, against their knowledge or consent.

Henrietta Lacks

In 1951, Henrietta Lacks, a young Black woman and mother of five visited The Johns Hopkins Hospital complaining of vaginal bleeding. Upon examination, gynecologist Dr. Howard Jones discovered a large, malignant tumor on her cervix. At the time, The Johns Hopkins Hospital was one of only a few hospitals to treat poor African Americans.

Mrs. Lacks began undergoing radium treatments for her cervical cancer. A sample of her cancer cells retrieved during a biopsy were sent to Dr. George Gey's nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in the lab. Mrs. Lacks’ cells were unlike any of the others he had ever seen: her cells doubled every 20 to 24 hours.

Although Mrs. Lacks died on October 4, 1951, her cells are still being used to study cancers, toxins, drugs, and viruses and have aided many medical discoveries, including cancer treatment and the creation of the polio vaccine. Lacks never knew her cells were being studied, and neither she nor her family were ever compensated, despite the discoveries that emerged from her cells.

Racial Bias in Pain Assessment and Treatment Recommendations

A study published in the National Academy of Sciences on April 4, 2016, on racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites, examines the well-documented fact that “Black Americans are systematically undertreated for pain relative to white Americans. [The study] examine[s] whether this racial bias is related to false beliefs about biological differences between blacks and whites (e.g., ‘black people’s skin is thicker than white people’s skin’).” The study finds that Black patients continue to receive less pain medication for broken bones and cancer, and that Black children receive less pain medication that white children for appendicitis. Well into the 20th century, researchers continued to experiment on black people based in part on the assumption that the black body was more resistant to pain and injury. The military covertly tested mustard gas and other chemicals on black soldiers during World War II.

The Tuskegee Study

The CDC describes how “[i]n 1932, the Public Health Service, working with the Tuskegee Institute, began a study of syphilis called the ‘Tuskegee Study of Untreated Syphilis in the Negro Male. The study involved 600 black men – 399 with syphilis, 201 who did not have the disease. The study was conducted without the patients’ informed consent. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance. Researchers told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anemia, and fatigue. Originally projected to last 6 months, the study went on for 40 years… and even when penicillin became the drug of choice for [treatment and the cure of] syphilis in 1947, researchers did not offer it to the subjects.”

Gynecology "Experiments" on Enslaved Black Women

Between 1846 and 1849, Dr. J. Marion Sims, known as the “father of modern gynecology,” operated on at least 10 enslaved women without anesthesia. One enslaved woman, Anarcha, endured at least 30 painful surgeries, the first of which occurred when she was 17 years old. His breakthroughs emerged from experiments on enslaved Black women without the use of anesthesia. According to History.com, “Sims’s decision to not use (anesthesia) — or any other numbing technique — was based on his misguided belief that Black people didn’t experience pain like white people did.”

A February 7, 2017 airing of Hidden Brain on NPR comments on three of the ten enslaved woman Dr. Sims operated on. A final comment from Dr. Vanessa Gamble, a physician and historian who investigated Dr. Sims' complicated legacy, suggests that the inscriptions on the statues erected to honor Dr. Sims (one of which was removed from NYC in 2018) could be modified to include the three woman and relabeled “Remembering Anarcha, Lucy, and Betsey: The Mothers of Modern Gynecology”.

What actions you can take?

Educate yourself more fully about these, and other instances of systemic racism in the healthcare system.

Be open to points of view that are different from your own on the topic of vaccines, with some new understanding for the underlying reasons.

When you hear others express confusion regarding hesitance to get the vaccine, share information you’ve learned with them so they can gain new insight into the actions taken by the healthcare system that erode trust.

Talk with any friends or relatives who are nurses, phlebotomists, doctors, hospital administrators, health insurance representatives, etcetera about the history and the current reasons why the medical system could be seen as untrustworthy and what they are doing to make changes. Ask what they do and what their employer does to address healthcare disparities based in false ideas about racial differences.

We really appreciate everyone in the organization who is engaging in educating yourself and sharing resources with others in our journey towards becoming an anti-racist organization,