The Tuskegee syphilis experiment. The secret sale of Henrietta Lacks cancer research cells. Jim Crow laws affecting African Americans' ability to receive medical treatment.
For weeks, it’s been hard to hear over the clamor of millions of Americans lining up for COVID-19 vaccines. But not everyone has been enthused — namely, large swaths of minority communities, which comprise the populations disproportionately impacted by the virus, but whose hesitance is largely fueled by the country’s racist medical past.
For help understanding the connections between the U.S.’s history of systemic racism, its impact on the health care industry, and the connection to the COVID-19 pandemic, we turned to Melva Thompson-Robinson, tenured professor and executive director of the Center for Health Disparities Research within UNLV’s School of Public Health.
“COVID really ripped back the bandaid,” she said, “and made people take notice.”
Here, Thompson-Robinson explains how and why the pandemic has impacted people of color, tips for overcoming vaccine fears, and ways public health officials can improve messaging.
Media reports have outlined data showing that communities of color have been most impacted by COVID-19. What's driving this health disparity?
There are a lot of things at play here. Some of it relates to employment. People of color tend to be employed in frontline essential jobs — working in restaurants and grocery stores, cleaning up in hospitals and other places. As such, they’re required to go to work and interact with the public, increasing their risk of exposure to COVID-19. At least early on, the PPE (personal protective equipment) just wasn’t available or, because of the initially conflicting public health messaging at the start of the pandemic, people didn’t understand the importance of wearing masks or taking other preventative measures.
Next, if you’re infected, you’re supposed to quarantine. But not all people of color live in a 2,000-square-foot home with two other people. They may have a significant number of people or multi-generations living under the same roof in a small dwelling. That means there’s no place to isolate within the home. At the same time, you don’t have the resources to stay in a hotel for 10 days. So all of this has created a storm.
Some of this, too, is centered around systemic racism. After World War II and into the 1980s, there was this practice of “redlining,” where red lines were literally drawn around community maps and banks would only provide home loans to African Americans and other people of color who wanted to buy homes in specific segregated communities. The properties within those redline areas were often undervalued. So, those communities still today don’t have the tax base other parts of the city might have. Being undervalued means they become under-resourced and don’t attract businesses or services that a community means to survive. Furthermore, lower property values and a smaller tax base equals less money for schools to provide K-12 education, meaning people in those areas aren’t getting the same level or quality of education as other parts of the community. Without high-quality education, you’re creating a vicious cycle of people dropping out of school, or not having the knowledge or skills necessary to go on to higher education to get a bachelor’s degree in order to get a better job and move out. So, they end up joining the workforce as essential workers.
This is what we mean when we talk about systemic racism. This is what’s created these pockets. These communities then become the ones with high rates of disease, as well as unemployment, poverty, crime and are also subject to over-policing. The resources just aren’t there.
COVID has created this perfect storm where we can see all of this. It still befuddles me that in the initial days of COVID-19 nobody was collecting data on race and ethnicity. Nobody thought that was important. How? That’s how we classify people in this country.
How has the history of U.S. health care fostered distrust among some people of color?
I once read a quote that said it’s not that people of color necessarily distrust health care. It’s more of a factor that the health care industry has not presented itself to be trustful. This is something that has been going on for centuries, and dates back even to slavery.
For example: J. Marion Sims, the man credited as being the father of gynecology, did all of his work on slaves — African American women who had no rights. They were considered property, therefore not human, so the perception was that these women didn’t experience pain. So, he performed gynecological procedures on these women without anesthesia.
Then, you have the Tuskegee syphilis experiment, where the researchers knew that penicillin could cure syphilis but intentionally withheld treatment — and watched these African American men die, and give it to their wives and children — because they wanted to watch the disease’s progression. There was a similar study done with Guatemalan citizens in the 1800s as well, where doctors watched the progression of syphilis and other STIs without the test subjects’ knowledge.
Henrietta Lacks was an African American woman who thought she was being treated for cervical cancer. After she passed away, doctors took her cells and are still using them to this day to do cancer research. She and her family had no idea until decades later.
In my health disparities class, I always bring my mother in to talk about growing up in the Jim Crow South, and she describes going to the doctor growing up in South Carolina. First of all, they had to use a different entrance than the whites. And the doctor treated all the white patients before the Blacks, so the Blacks sometimes weren’t seen. As a result, they only went to the doctor when it was an emergency, being transported to a hospital in a hearse because there was no ambulance.
Native Americans are another group that has been impacted. America was founded based on Christopher Columbus and pilgrims bringing diseases that wiped out Native American communities.
Health care has never been a trustful institution for people of color. So when we talk about mistrust, we’re building on centuries of harms that have been passed down generation to generation. And when health care providers today tell people of color to trust this vaccine — after early in the pandemic saying it didn’t affect specific minority groups, and contributing to news reports where African Americans are presenting themselves to hospitals for COVID care and being turned away without being diagnosed or being diagnosed when it’s too late because they’re too far gone — that’s why people are resistant.
This mistrust has happened before with the flu vaccine and HIV treatments. That’s why certain diseases or health problems tend to be so rampant in these communities.
Can you talk about the recent creation of COVID-19 vaccines and the role of people of color in drug trials?
It’s not just white people getting the vaccine so you need various populations represented in the trial. We all live, eat, and do things a bit differently, so understanding how things work in different populations is important.
Historically, drugs were developed and initially tested on white men. Eventually, the health field discovered that women’s physiology is a little bit different and they started including women in the studies and realizing in some cases that people of color are processing drugs differently or drugs react differently based on different foods and diets or other activities. All of that is why it’s important that there are people of color in drug trials, and now there’s a huge push to include more.
But it also goes back to the mistrust issue. You’ve got people who say they see no one like themselves in the trial, so they need to wait to see more people get the vaccine or drug. And it’s a legitimate concern. If the shoe were on the other foot, I think other people would feel the same way. We need to consider where people are and what they’re thinking about and getting them on board.
Given the hesitancy among many — including communities of color — about the vaccine, what will it take to make people more comfortable?
Part of it will take compelling messaging. Part of it will require understanding and acknowledging where people are, addressing their concerns, and not becoming frustrated that they’re unwilling to get the vaccine.
Part of it will be recognizing that people need access to information. Put information out there so people can look at it. What vaccines are being given, what are the contraindications, what’s the protocol for allergic reactions?
These are legitimate concerns. For example, there have been reports of the Pfizer vaccine producing allergies. Well, at these mass vaccination events, I personally know attendees who have allergy issues yet have no idea which version of the vaccine is being given. Vaccine sites need to advertise what resources are available if they go into anaphylactic shock. Step back and put yourself in the vaccine recipients’ shoes: Should I trust you? Understand where I'm coming from. And what happens if other people in the room see my adverse reaction? All privacy goes out the window, and witnesses waiting their turn might become nervous and walk out.
I just had a conversation about homebound African Americans, who are watching a lot of TV. The press conferences with former President Trump shaking hands and not wearing masks and disparaging Dr. Fauci: people pay attention to these contradictions. So we’ve really got to go back to the beginning and start over with the messaging and where people are coming from and working within that to provide them with appropriate messages.
One thing I've appreciated is that, thanks to social media, the public can see health providers, friends, and relatives who get the vaccine post videos, photos, and messages about getting their first vaccine shots. Being able to talk to other people helps make them more trusting.
Do you have tips on vaccine messaging?
At some point, I think most people are going to decide to get the vaccine. It may be a longer process because you have some people standing back and waiting to see how it all plays out. I challenge us as public health professionals to get a grip on this messaging. The message that's broadcast isn’t good enough for everybody. It’s only reaching a selective few. So those who aren't getting it — whether people of color, or sexual or gender minorities — we’ve got to do a better job of helping those messages trickle down into the communities that are most at risk. We’ve also got to step back outside of ourselves and say, “Who’s really on the front line and who’s really at risk, and who really should have the vaccine?” and then think about distributing it in ways that people feel comfortable with. And it’s not just in ways that work best for mass distribution, but rather for specific populations.
The way I describe it to my students is: Think about public health in the way that Ford thinks about its trucks. Flip through TV and you’ll see a Ford truck commercial on each channel. But they're not the same because Black Entertainment Television (BET) viewers are different from Country Music Television (CMT) and Fox News and CNN viewers. Same product, different commercials. That’s what we need to do about this vaccine and public health.
For example: For some populations, word of mouth, social media, or television is the most effective medium. But we’ve got communities that are high risk for COVID but aren’t tech savvy — like homebound seniors. So maybe go door to door, or put things in the mail, or their primary form of tech is their TV, or if they use a flip phone, or maybe don’t even have internet access. Then think deeper: If an African American male needs to access free Wi-Fi through his local library, he might be hesitant to do so because he’s worried about sitting in the parking lot and encountering the police because of a suspicious person call. It’s nuances like this that demonstrate why thinking about how we get information to people is so important.
Also, there’s got to be a repository — maybe someone wants to rewatch the webinar or send it to someone, so a simple recording needs to be made available somewhere. Public health has done the basics but there’s so much more we could be doing.
Even reaching students is a bit different because — at UNLV, for example — we’re primarily a commuter campus and students are spread across the city. So think about the challenges they’re facing. First-generation students bring a whole unique set of challenges and don’t always have the resources to access things that people who come from generations of college know. So when messaging to students, think about and understand that students get information from home, social media, and campus. And how do we fit into that? There’s got to be a lot more discussion of not just general populations but specific populations and how we address the weakest link — we’re only as strong as our weakest link, and if they aren’t getting the information the rest of the chain won’t be strong.