American Scientist

Communities have long memories about how they are treated during health crises. Throughout the COVID-19 pandemic, public health experts have grappled with how to reach people who—often for very good reasons—distrust the medical system. Stephaun Elite Wallace has worked with these disenfranchised and skeptical communities for decades, and he has found that the most reliable way to reach those populations is through people they already look to for advice—people whose voices they trust. Wallace is a clinical assistant professor of global health at the University of Washington, and he is also the director of external relations for both the HIV Vaccine Trials Network at the Fred Hutchinson Cancer Research Center and the COVID-19 Prevention Network. His approach to these roles recognizes the racial and economic disparities ingrained in society that have population-level health effects. Wallace spoke with American Scientist contributing editor Efraín Rivera-Serrano about what drew him to public health and the approaches he takes to engage marginalized communities. This interview has been edited for length and clarity.

You have said that from a young age you wanted to help under-resourced people in your community. What are some of the issues you identified as a child, and how do they relate to your current role?

Something that I wondered about as a young person—and studied a bit about as I’ve gotten older—is the relationship between income, wealth, and health outcomes.

For example, home ownership is still seen as one of the top indicators of generational wealth in this country. And home ownership largely contributes, through property taxes, to local schools. If Black and Brown communities are largely excluded from home ownership, then where are the resources for the schools? It creates this cycle. I observed it growing up, and it was one of the reasons that I was interested in law, and also policy.

That awakening for me started in elementary school, growing up in South Central Los Angeles and seeing the different ways that people were treated based on how they were perceived in terms of wealth and resources. When I enlisted in the U.S. Army, I saw social justice issues pop up as well. This was during “don’t ask, don’t tell,” and I consistently saw people being dehumanized and degraded because of their perceived sexuality. I completed my tour and decided not to reenlist, because I was also experiencing some of that harassment.

I later moved to Atlanta, and I met quite a few community members, many of whom are Black gay men. I found community, but I also found people who were experiencing trauma, from a community perspective but also from a systems perspective.

I was meeting teenagers who were newly diagnosed with HIV or who had been living with HIV for some time. HIV hadn’t been on my radar before moving to Atlanta, but I knew enough about HIV and STIs [sexually transmitted infections] that I understood that it was not just about people’s behavior, but also about the circumstances and the environment.

I linked up with a group called My Brother’s Keeper, which was really just a social support group. I thought to myself, “There’s an opportunity here. There’s clearly a need. Why don’t we turn this group into an organization that can help to address HIV, not just at the individual level, but at the community level and the systems level?” It was a “for us, by us” model that I believe has helped to inform some of the federal response to HIV in LGBTQ communities. That was my introduction to public health.

There are many blatant examples of mistreatment or malpractice that have eroded some groups’ trust in the scientific community. Are there higher-level factors that have contributed to this distrust as well?

We’re in 2021—nearly 500 years after the trans-Atlantic slave trade started—and we’re just now saying that racism is a public health threat. I’m glad that we’ve gotten to this place. I think we could have gotten here much sooner if political will was there.

The factors that beat back our communities are largely related to policy: the attitudes about policies that are being created and the interpretations of policies that are already established. We can do all of this work around racism and addressing the ways that we talk about communities, the ways we talk about racism. We can adopt PC [politically correct] language and put cultural responsiveness trainings into play. But if we don’t address the root issue—which is, in my opinion, anti-Black and anti-Indigenous racism—then we will have missed the mark significantly.

In your current role as director of external relations for the COVID-19 Prevention Network, what approaches have you found are most effective in reaching Black communities?

What has worked well in the COVID-19 space in engaging Black communities has been using what we call trusted voices. Often in public health conversations or contexts, those persons might be health care providers.

For many people there’s still a mystery around how science works, such as how clinical trials are conducted. We have a collective responsibility to demystify this process—and to do the work of educating communities and increasing community understanding—in any opportunity that presents itself. Because we’re doing a disservice if we don’t.

“We’re all experts on our own lives. The role of health care is to provide additional support to maintain our quality of health, not to be the end-all and be-all.”

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This effort shouldn’t be solely focused on COVID-19. It should be across the board. Many of us are old enough to remember what the HIV epidemic was like in the 1980s, and the misinformation campaigns that existed then. We will continue to see the blame game and the misinformation campaigns if we don’t do our part to effectively address community awareness before it’s needed. Don’t wait until the house is on fire to buy a fire extinguisher. Buy it now, so that when the house catches fire we can avert disaster.

A misstep has been the assumption that people of color—and Black communities in particular—are monolithic. That everyone who is a person of color thinks the same way. Also that Black people won’t participate in clinical trials, that they’re hard to reach. All of this coded language and excuses—to me, it’s old. It’s outdated, antiquated attitudes about who we are. It’s lazy—intellectually and scientifically lazy. And it’s also a disservice.

Do you see fluctuations in the level of trust within marginalized communities with regard to participation in clinical trials or trust in science overall?

The shift that I’ve seen in the way that diversity looks, for example, in clinical trials, has been largely associated with intentional efforts to meaningfully engage those trusted voices. I’m thinking about the Moderna phase III COVID-19 vaccine trials, where we saw 20 percent Hispanic population participation in that trial. That’s unprecedented.

On the one hand I think, “This is great, because we don’t typically see trials this diverse.” At the same time I also think, “We need to be doing better!” We need to engage the trusted voices, and be cognizant and mindful of the conduct of clinical trials and the implementation of public health programs. The programs should be nimble and flexible and not take the approach that, because something has been done a certain way, that it always has to be done that way.

You mentioned the high participation of underrepresented populations in COVID-19 vaccine trials. What is different this time—is it because the disease is so prominent and universal?

We developed a COVID-19 vaccine in under a year. We’re 30-plus years into trying to get an HIV vaccine. Part of it, to me, is about political will, and part of it is about resources.

There have been metric tons of resources poured into COVID-19, not just here in the United States, but globally. If we had that resourcing in HIV research, if there was an all-hands-on-deck approach to it like there is for COVID-19, I believe we might have found an HIV vaccine by now.

But I also think that COVID-19 is seen as something that people get passively, whereas HIV is largely seen as something that only those people over there get, people who are doing something morally corrupt. Of course, I don’t believe that at all, but those attitudes exist in many communities regarding HIV, so it doesn’t get the same level of attention and prioritization.

What are actions that any of us can take to improve the communication of science within our communities?

Part of how one becomes a trusted voice is by consistently being present, and by providing information that’s not just helpful, but also accurate. How one might do that—how I have done that—is to be really intentional about the conversations I’m having, and to address misinformation any time I encounter it, but also to acknowledge the skepticism that people may have.

There has been a lot of trauma, damage, and harm caused by systems in this country toward people of color. Skepticism, to me, is not only warranted, it’s also, in many conversations and in many ways, healthy.

There are ways that we can all be connected to the science, that we can be involved in this work. We can all be not just better, more informed consumers of information and of medicine, but we can also be better advocates. But the medical establishment and researchers have to be more trustworthy.

We can’t put all the responsibility on the public and say, “Open the doors to your homes, to your families, to your communities, and let everybody come in and do all this research.” It’s about relationships, and about being present. It’s about addressing people as individuals, not through their prognosis or their disease or their ailment.

Physicians, researchers, health care professionals—it’s important for them to engage communities and their patient populations in ways that affirm the agency that people have over their own lives. We’re all experts on our own lives. The role of health care is to provide additional support to maintain our quality of health, not to be the end-all and be-all.

What do you consider to be the greatest successes in your work?

What affirms, for me, that I am where I’m supposed to be, and that I’m doing the work I’m supposed to be doing, is when I talk to people in the ‘hood, or in different communities across the world, who say to me, “Because this research is happening, or because the clinical research team is providing amazing care, I feel better about myself, and that my life can continue.”

I tell my team that we’re in the business of saving lives. It’s something I take very seriously. It’s important to me that we do our very best in every single interaction we have with people. Because people are being beat up enough already. We don’t need to add to that.

You work with many different communities, including LGBTQ populations, African Americans, and others around the world. What are the commonalities that resonate across groups?

Sheer will and resilience. There is a desire by groups and people to beat back this system of oppression, of racism, that has plagued our society. And in truth, racism doesn’t just negatively impact people of color; it negatively impacts white people as well.

Another commonality is strength. Through all of the historical and contemporary instances of abuse, neglect, and miscarriages of justice, people continue to wake up every day hoping and fighting for a better tomorrow.

An extended interview with Stephaun Elite Wallace: