An HIV Racial Equity Movement Spurred by the COVID-19 Response
Terri Wilder: Thank you both for taking the time to speak with me today. To start, what motivated the Black AIDS Institute to form a Scientific Advisory Committee?
Raniyah Copeland: For us, really the onset of COVID-19 was a driving factor for us in developing a Scientific Advisory Committee. So much of the COVID-19 response is being led by researchers and advocates in the HIV field, and that has been since the onset of COVID-19.
The last global pandemic we’ve had really has been HIV—and the expertise and the knowledge that the HIV field has in responding to COVID-19 has proved to be integral. We’ve seen that from leadership at the White House to leadership particularly in scientific and research circles. A key example is Dr. Wallace, who was leading work out of the HIV Vaccine Trials Network and now is leading work out of the COVID vaccine Prevention Network. Mostly all of our Scientific Advisory Committee members have had that experience, being experts in HIV, and being called on to utilize that expertise as we respond to COVID.
It’s been very clear to all of us that there is no way that we are going to end HIV until we can respond to COVID. All of us knew—particularly Black folks who have been doing this work in HIV—that, before the numbers came out, COVID was going to disproportionately impact Black communities. The way that systemic racism and white supremacy is set up in this country is that anything that harms people is going to harm Black communities so much more.
What is that old adage? When America catches a cold, Black folks catch pneumonia or the flu. Right? It’s always worse in our communities. That’s, for so many of us, why we do this work as Black folks. It’s about our community. It’s about our family members who are being impacted by these health disparities.
We knew that as BAI has been a leader in responding to HIV in Black communities, and really working directly with Black communities to ensure they understand the science of HIV, working on HIV vaccines, biomedical science, and ensuring that Black communities understand the science of PrEP and PEP, and research that’s coming down the pipeline, and immunology, and vaccinology—that we would need to do the same for COVID.
As this public health crisis continues to emerge, that now was the time to pool together some of the most brilliant Black folks from across the country to help guide our expanding work in biomedical prevention, advancing PrEP, advancing PEP, advancing treatment and prevention came into view. Now also expanding the messaging we have around COVID, and how we have conversations around COVID. Doing it in a way where we can talk about COVID, and we can also talk about HIV.
When we’re talking to Black communities about how a vaccine works, we’re talking about immunology and vaccinology. How do we translate that same conversation about immunology around HIV vaccine trials that are happening?
A core value of BAI is Black empowerment. We believe that Black folks have the skills, talent, knowledge—these sources of power to define for ourselves, to create for ourselves, to create the means of freedom and the opportunities to utilize resources in a way that we deserve as human beings. And ensuring we have the folks who have that information, who can say, “This is what’s happening next. This is the next scientific thing that BAI needs to be looking at,” has been really important to us, as well as really lifting them up as leaders. These changes that we have to make in the Black community around science happen from trusted opinion leaders, people who Black communities trust. That is exemplified by the kind of amazing folks that we have as part of the committee.
Wilder: Can you talk more about your expertise, what you will be contributing to the committee, and what your goals are for being on this committee?
Copeland: Stephaun, I would love for you to talk about why and how critical Black leadership is in this field of science.
Stephaun Wallace: Thank you for that. There’s quite a bit that I contribute to the process, based on my experience. I have the greater of 20 years’ experience in HIV prevention and research, broadly, and nearly three decades of experience in community engagement.
And so, in addition to my HIV experience, which is diverse—it includes prevention, treatment, and research at the community level; working in community organizations, primarily leading and directing programs and change in organizations; and prior roles where I’ve served as executive director, deputy director, etc. But also being co-investigator on clinical research studies focused on finding interventions that will help alleviate the burden of HIV in communities, in particular, Black communities and LGBT communities.
In addition to that, I have significant experience in health policy. And translational science is really important—being able to take the science and research and translate it for communities in accessible ways is a critical component that I think I also offer to the committee.
Those are just some of the things that I contribute, in addition to my obvious relationships to various communities, including the Divine Nine, which Raniyah is also connected to.
Copeland: Yes! Yes!
Wallace: Historically Black colleges and universities, the house and ballroom community, and the pageant community. So, there are lots of communities that I’m also interconnected to, both here in the U.S. and internationally.
I also lecture at the University of Washington and mentor graduate students there. I also mentor young Black professionals across the country—I have about 30 that I mentor currently. So, I am still involved in research. I’m still running programs. I’m still doing work with my primary employment, and always seeking opportunities to advance the health and wellness of Black communities, which is the primary reason why I wanted to join, and accepted the invitation to join, this committee.
To your question, Raniyah—it ties back to my prior point—we have an opportunity to really address the ways that medical racism has impacted Black communities. I believe it was Dr. King who described the injustice of bias in the medical system as being one of the highest degrees of injustice that one can experience. So, recognizing the myriad implications that medical racism has in Black communities—it’s not just about the implicit and explicit bias of medical providers and health care practitioners, it’s also the systems and the implications of those biases. How Black people are not believed when they present to medical or clinical studies and express symptoms, particularly pain.
Also thinking about the history and the roots of medical racism, and that there was a belief in the science that Black people experience pain differently than white people, and that our tolerance for pain was such that we didn’t need to receive anesthesia and other products in order to minimize our pain and increase our comfort during clinical procedures. How the roots of the field of gynecology are informed by experiments on Black women, where anesthesia was not allowed and not given.
There is a history here. Part of it is ensuring that Black communities understand this history intimately, and that we also implement strategies to respond accordingly. Part of this work is also being led by some of my colleagues at some of the historically Black colleges, including Morehouse School of Medicine, which is expanding their faculty and their approach to educating Black physicians to different sites. They’re primarily located in Atlanta, Georgia, and they’re now opening satellite sites to be able to train more Black physicians. Increasing the workforce and the diversity in the workforce, and then increasing pathways for Black people to get into health care will help do this. Also, shifting systems and approaches—and certainly there’s a lot of talk about implicit bias and the tactics and the methodologies used to assess it, as well as to respond to it. From a policy perspective (and I think Raniyah touched on this a bit, as well), we need to rethink and reimagine how we look at, engage, and treat people who look different from us, particularly Black people.
What It Means to Revolutionize the Black HIV Response
Wilder: There was a paragraph in the Scientific Committee announcement that really stuck out to me: “By combining evidence-based approaches specific to Black communities in centering undermined experience such as medical mistrust, the committee’s guidance will strengthen Black AIDS Institute’s mission to revolutionize the Black HIV response. This, in turn, will move us toward complete freedom for Black people to live long, healthy lives.”
This is an incredibly powerful statement. What does it mean to revolutionize the Black HIV response?
Copeland: Revolutionizing the Black HIV response, to me, as I lead BAI, is about centering the Black experience and building Black power. When we look at the HIV industry overall, HIV in the U.S., nearly half of people who are living with HIV are Black Americans. Whether you’re looking at Black trans women, Black cis women, Black gay and bisexual men, or Black folks in the South, Black people are disproportionately impacted by HIV. Yet, when you look at who is leading organizations, the top researchers, and who gets the most funding, it is not Blacks. Revolutionizing our response is about acknowledging the way that white supremacy continues to flourish within the work that we do.
I would say, most people in the field of HIV are doing this work because we believe in equity. We see the huge injustices that are perpetuated in HIV, decade after decade. But when you look at who’s doing the work and how communities are most impacted, it hasn’t informed how we respond to HIV.
If we’re really talking about ending HIV within our lifetime, if we really want to start seeing these strategies to respond to HIV actually start to succeed, we have to be honest about who holds power, why they hold power, and who is making decisions for Black lives. Too often in our HIV movement, the decision-makers around how Black lives are shaped and resourced are not from our community. So, much of the Scientific Advisory Committee is about—look at these amazing Black people who are leading work in HIV. We need more of these folks. We need to center them. We need Black researchers across the country who are developing strategies that we know work for Black communities because they are for and from the communities that they serve.
We keep on talking about medical mistrust and, you know, Black people aren’t being virally suppressed in the same way that other communities are. We aren’t seeing Black people engage in critical research in relevant ways. When are we going to stop and say, “Maybe it’s us. Maybe it’s the strategies that we’re utilizing. Maybe we should make sure that people who are making decisions look like the communities that we’re serving, that are from those communities”? So, revolutionizing the HIV response to me is about putting people who are most impacted in charge of our own destinies, in charge of the destinies of our communities that we love, live, and play in. That we’re at a different moment than we’ve been in the past.
The uprisings of 2020 made much more clear to other folks how important Black leadership is. Black folks have been saying this forever. I’m grateful that more people hear us, but it’s not enough to just hear it. Let’s actually make action, and let’s change this. That’s what this response is when we’re talking about revolution.
Wilder: What does it look like for Black people to have complete freedom to live long, healthy lives?
Copeland: It’s interesting to think about this, especially in the age of COVID. When I first started in this work, I was appalled that so many Black gay and bisexual men felt like HIV was an inevitable part of their life. That’s not freedom, right? Feeling like there is this disease that is going to impact you regardless of behavior change—that this is an inevitable outcome. There is not freedom in that, right? There is fear in that, constantly. There’s, when is this other shoe going to drop?
So many aspects of Black lives are shaped like that, right? That’s the way I feel when I see the police when I’m driving. Is this going to be the day that something’s going to happen to me and harm me? That’s the way I feel when I send my sons to school. Is this the day their teacher’s going to say something crazy that is going to traumatize them and scar them for the rest of their lives? Is this the day that the doctor’s not going to order the right test for my mother because they don’t know how to treat Black women and they don’t believe and trust Black women? That kind of fear, that kind of expectation that harm is going to come to you—that’s not freedom.
With COVID, we have this experience—especially here in LA—of what it feels like to have so many people around you dying, acquiring COVID, and still not feeling like a vaccine or the medical institutions that they have to engage with are going to support them. That kind of trauma, that kind of mental anguish is impactful. I can say as a Black woman, it’s not freedom. It’s inhibiting. It’s restraining. It’s oppressive. And we feel it every day.
Black Experts Have Been Historically Excluded From HIV Research
Wilder: On the organization’s website, it states: “Historically Black experts have been excluded from scientific research and development.” Dr. Wallace, why do you think Black experts are excluded from scientific research and development, particularly in HIV, and now in COVID?
Wallace: As I mentioned before, there is an undercurrent in this country that’s embedded in systems. In addition to the way that people and individuals may think and believe and act towards Black people, there is a culture within the systems in this country that supports that Black people not be believed. This translates to health care settings. As I mentioned before, about how people can present in a health care space and their symptoms not be believed—this also translates to the value that is assigned to Black people who are pursuing careers in medicine and careers in research. The tangible sort of metrics about this can be seen in the number of Black people who are admitted into medical colleges, medical schools, in proportion to other groups, the numbers of Black people who have Ph.D.s in this country, who are admitted into doctoral programs, in contrast to other groups, and predominantly in contrast to white groups, as well as the numbers of Black researchers who receive funding, and particularly funding within industry and government. That is a glaring concern.
If Black people aren’t able to compete, and we aren’t even starting at the same place as our white counterparts because of systemic racism, that means that the predominant people who will be conducting the research, gathering the data, and informing policy, informing intervention development, as Raniyah mentioned, and informing how we sort of move forward with new ideas and new thoughts and new knowledge, are white.
And even more starkly, the predominant number of people who are doing that research in Black communities on Black people are also white. To me, that’s a glaring issue that needs to be addressed. And it’s an important consideration as we think about the liberation and freedom and the health and wellness of Black communities—that Black people should be believed, that Black knowledge and intellect should be valued, and it should not necessarily be weighed against our white counterparts.
I think that that is not just sort of an intellectual perspective, it’s a cultural perspective. Even thinking about the way in which we learn, the way in which we know things, and how the learning and the knowing may look different. But if the barometer by which everything is measured is always based on the white gaze or the white perspective, then it will always put Black people at a disadvantage. We really need to do much more to shift this.
Our People, Our Problem, Our Solution
Wilder: It looks like there have been a lot of changes at Black AIDS Institute—not only the Scientific Committee, but the website looks different to me. It has these gorgeous colors. It looks like it’s completely rebranded. As I was looking at it, I couldn’t help but think about the Black Power movement in the late 1960s and early 1970s. I should tell you that two summers ago, I was in Los Angeles and I went to the exhibit Soul of a Nation about art in the age of Black Power. I couldn’t help remembering that exhibit as I was looking at the website. I’m curious: What was the inspiration for the new branding? Is there a connection to the Black Power movement? Even the motto of Black AIDS Institute—Our People, Our Problem, Our Solution—as I was reading it, felt like I was reading the spirit of the Black Power movement.
Copeland: That is the core of who we are. When you read about who BAI is and how, we were founded by Black people who were hugely impacted by HIV. We were [founded] by a Black gay man living with HIV, a Black lesbian doctor, and a Black gay man who was a doctor. That is so much of the soul of who BAI is. In over 20 years, our motto has been Our People, Our Problem, Our Solution.
We believe very deeply in the community-mobilization concept, that people closest to the problem have a vested interest in the problem. That shows up in our values. We have our values of Black empowerment. We also have a value of self-determination, which is my favorite part of the principle that we’ve been talking of here, that Black people have the talent and skills to determine our own future. So, you’re probably right that it speaks to the Black Power movement.
I would also say I’m new in BAI’s CEO role. Last week marked officially two years in the role. I’ve been with the organization for 13 years. But for me as a Black woman, a Black cis woman who is HIV negative, it’s always been very important to me. Part of the reason that I wanted to lead BAI for this period of time was I thought it was critically important that we need to center that Black empowerment, and that that shows up in all of our work. It shows up in our staff. If you look at who our staff are, they are Black folks who are living with HIV, Black folks who are affected by HIV, Black folks who are on PrEP, and Black folks in our community—and we really own this organization together as a collective. We believe the way we’re going to [end] HIV is by doing it together.
If you look at any Black movement, all the Black movements that we’ve had, it’s been about our collective effort, our collective struggle together. It’s why we pushed to have a Scientific Advisory Committee—we have this amazing Black talent and leadership, and it’s really about centering it. It’s not about any one of us, it’s about our collective and how, as Black folks, we are seeking perspectives because of our history and our past, and things we do or don’t know, and the uniqueness, beautiful but kind of horrible uniqueness of what being Black in this country is. We call on the power of that. We center it.
So, in our messaging, in our website and the colors, it really is about invoking, calling, and centering Blackness in everything that we do. There’s a little bit of a different polish on it because I’ve been CEO for two years now. There’s also a beauty to allowing Black folks to lead. There’s a beauty in allowing younger Black people to lead. There’s beauty in allowing Black women to lead. There’s beauty in allowing Black people living with HIV to lead and Black trans women to lead.
The more that we do that, the more we make space for leadership, for our communities that are most impacted—that’s how we create change. And 2020 certainly showed us that. How important and pivotal Black leadership is in creating change.
Wilder: Is there anything else that either of you would like to share before we close, about the Scientific Committee or any of the topics we talked about? Or maybe even a topic that we haven’t talked about?
Copeland: The only thing that I would say is how important Black researchers and scientists are in changing and giving a path beyond this COVID era. As we’ve seen with vaccine uptake, that’s not going to work unless we get Black folks on board, and communities that are most impacted engaged with and understanding and believing and trusting systems that have continued to fail us.
As much as we can, we want to be a bullhorn for that. We have this new administration coming into place. We’re happy that they’re putting some Black folks into place. But we’re going to continue to have a bullhorn around, “Alright. Who else is going into the CDC? We’re happy about having this COVID response team that’s being led by a Black woman, but who else is there?” That kind of constant clinch is so important to get us to a place where we can focus on getting to an end of HIV. I’m super grateful for having folks like Dr. Wallace, who has 55 million jobs and a lot of work to do, volunteering their time to serve in this type of capacity. It speaks to the uniqueness of Black leadership, the uniqueness and the need for Black scientists being in these spaces and in positions of power.
Wallace: Thank you for that, Raniyah. You went from the macro to the federal level. I’ll bring it back down to the local level and say that having Black leadership within organizations that serve Black people is critical. Raniyah and her predecessor, Phill Wilson, are examples of that.
It’s important that we consider how we might be able to utilize what happened in the efforts to flip Georgia blue as a master class on organizing that can be implemented in other areas.
That state did not expand Medicaid. Those states are significantly impacting the health and wellness and lives of Black people. And so, efforts to work at the local level, as well as to localize Black communities regarding policy considerations, regarding voting, regarding health policies—these are really important considerations. Those topics would be well placed to be a part of the agenda for Black communities and our communities in those areas.