At the moment that this article was published, four hundred two thousand eight hundred three people in the United States have been confirmed to have died of complications from COVID-19. That is 402,803 people who died horrific deaths, often alone and disorientated.
For so many of us, this enormous number includes one if not more of our dear friends and family. In 2020, I lost three family members and five friends. All were Black people born and raised in this country that purports to have the best health care in the world. Yet the pandemic churns on, with record-breaking death tolls day after day.
Also today, multiple members of my family and several friends have reported recently acquiring the virus, with one person in an ICU bed. This pandemic is not even close to being over.
In recent months, I have video chatted with doctors on the mobile phones of intubated friends—because their loved ones are not well versed in clinical language and need to receive advice from a trusted resource. I do not possess a medical degree. I did not attend years of residency. I did, however, don a white coat over 15 years ago while conducting basic science to develop an HIV vaccine.
My story is not remarkable. It is common.
Who Can We Trust?
During 2020, through my personal experiences and those of close friends and family, I’ve directly seen the impact of medical trust and medical mistrust in health care and clinical research.
Over the summer, my father had a medical emergency. When the paramedics arrived, he could hardly speak. He was able to muster the strength to tell them that they should not take him to a specific hospital located closest to his house. This particular hospital is “known” throughout the Black community for mistreating Black patients, leading to preventable deaths.
His story is not remarkable. It is common.
A wide array of people in this country, especially Black people, do not inherently trust the medical system—and for valid reason. We have seen time and time again the data and the stories of disparate care that Black, Indigenous, and People of Color (BIPOC) receive in clinical research and medical care. The “Public Health Service Study of Untreated Syphilis in the Negro Male” is widely known: Hundreds of Black men who participated in the Syphilis Study were denied proven treatment for their infection of a communicable disease, and consequently, many suffered complications and poor health outcomes. (Side note: The Syphilis Study may have been conducted in Tuskegee, Alabama, but it has zero association with Tuskegee University, as it could have been conducted anywhere; so we must divest from that language immediately.)
There are other examples—too many to list here. These American atrocities and countless others have earned medical mistrust from BIPOC. Public health officials who fully grasp cultural humility and culturally responsive community engagement also know that each day, they must address the past while working in the present.
That their patients are more likely to trust a family friend instead of trusting them is not remarkable. It is common.
Racism Created Vaccine Mistrust
Like so many other conditions, the coronavirus disproportionately impacts BIPOC, especially Black, Hispanic/Latinx, American Indian/Alaskan Native, and Native Hawaiian/Pacific Islander individuals. Yet, while, according to a recent Pew Research Center poll, more than 70% of Black Americans know someone who has been hospitalized or died because of COVID-19, when it comes to the COVID-19 vaccines being rolled out, there remains marked skepticism. The same poll indicated that just 42% of Black Americans reported a willingness to get vaccinated, compared with 61% of their white counterparts.
Many BIPOC state that they would rather wait to see how white people fare, who are typically first in line—a common perception due in part to systemic racism in clinical care, and partly due to the health care–seeking choices of BIPOC, which can be traced back to systemic racism on all levels.
“Wasn’t This Vaccine Developed Too Quickly?”
In the health care field, we are finally beginning to turn the mirror around and ask, “What are we doing wrong if our BIPOC patients state the same concerns time and time again?”
Here’s one way to address concerns from BIPOC about whether the vaccine is truly safe and effective, which I have found helps many: sharing the knowledge that giving someone a fake vaccine (excluding placebos for clinical trials, of course) would cause that person and staff to lose their jobs and probably face jail time.
Each day, I have real conversations with friends, family, and colleagues about the safety and efficacy of vaccines—in addition to conversations about the safety and efficacy of the medical staff providing the life-sustaining health care option. The most frequent question I hear is: “How do I know that I am getting the same vaccine that the white people receive? They might just be shooting me up with water.”
So let’s be clear: This is about trusting the medical staff. After experiencing explicit and implicit racism from the time that they walk through the hospital or clinic door until the time that they roll up their sleeve for a shot, trust is already gone.
We also must directly answer the question that I answer multiple times per day: “Wasn’t this vaccine developed too quickly? I think they rushed it just to make Trump happy.”
In these times, politics have been inserted into the functioning of typically apolitical health entities like the Centers for Disease Control and Prevention and the U.S. Food and Drug Administration (FDA). As health care practitioners on any level, we cannot simply shake our heads at the political theater and write it off.
It is imperative that we actively take control of the narrative and not just respond to questions from patients. By that point, it is too late for many to ever fully trust that these COVID-19 prevention options are for them. As a starting point, we must learn the process of FDA approvals and convey that clearly and in a culturally responsive manner to patients.
No More Going to the Back of the Line
In the HIV field, we wrote the rules for how to conduct a safe evaluation of experimental treatments while FDA review is expedited. It’s important for people to know that FDA advisory panels are filled with community, research, and clinical experts to ensure that multiple perspectives are given while reviewing the data from clinical trials.
And if anything goes wrong throughout the process, the clinical trial is immediately halted, like we saw with the Johnson & Johnson COVID-19 vaccine trial and the Eli Lilly treatment trial in October. These trials did not continue until we knew without a doubt that they were safe. And, fortunately, they are safe.
I must acknowledge one final thing, and be very brutally honest about it: If I could turn back time and bring vaccines to all the people who I cried and cried over in 2020, I would do everything in my power to make sure that they received them. I would talk, beg, cry, kick, and scream if necessary to convince loved ones to get the vaccine.
Sadly, they did not have this lifesaving option. And my family and friends who are living with a coronavirus infection today did not have the option. But let’s be crystal clear: Come hell or high water, I never want to see BIPOC intentionally go to the back of the line for a vaccine to protect them from a virus that preys on those of us who are, throughout history and to this day, forced to the back of line.
Trust and believe I—like so many others—am calling on the health care workforce to not only provide a welcoming environment for BIPOC. The workforce must—absolutely must—be an inviting environment for the communities disproportionately impacted by COVID-19—and, while we are at it, include people living with HIV and other preventable ailments as well.