This Champion of Community’s Role in Clinical Trials Reflects on 40 Years of Fighting Medical Mistrust And Research Neglect

When you get to a point where you’re able to only go by one name, Wakefield, and no one questions it, you know you’ve led quite a life.

That is true of Wakefield, who has been a trailblazing activist for the leadership of Black and Brown people in clinical research—as practitioners and as activists—for four decades. And to be honest, Wakefield is one of the reasons why I decided to invest my time in learning how to engage clinical research. As a former theater major who never was much of a math and science student, and who found my way to HIV and public health through personal investment in the epidemic impacting my community, it meant a lot to have another Black gay man with such gravitas believe that I, too, could sit at tables and review research protocols, advocate for research and community engagement resources, and now, write about science and research as a journalist.

When I heard Wakefield was retiring from his role as external relations director of the HIV Vaccine Trials Network (HVTN) after 20 years, I knew I wanted to talk to him about his life and work. As we’re in the midst of the COVID-19 pandemic, where conspiracy theorists about the origin of the virus abound, the state of a vaccine or cure—and the importance of Black people doing research and treatment advocacy—are even more critical. Here’s our conversation.

Kenyon Farrow: First of all, I want to thank you for taking the time to talk to me. I am both sad that you’re leaving the field but also happy for you for being able to retire and do whatever you want to with your time from this point on. So, you know, I appreciate that.

Wakefield: I’m leaving the field, but I’m not leaving my body.

KF: (Laughs) Understood.

One of the things, Wakefield, that I’ve always just appreciated about you is that you come from doing activism and community work before the HIV epidemic. So, if you could just tell us a little bit about your history and your works as an activist before the AIDS pandemic?

Wakefield: Well, I think that what’s fortunate for me is I didn’t think of most of it as activism. I grew up in a family where my parents were always involved in things locally. When I was 8 and 9 years old, they let me start going down to Operation Breadbasket, which became Operation PUSH, in Chicago; and hanging out with people that just had what I would call a social justice ethos.

When I got out of university and started working, some friends and I looked around, and there were a bunch of adults who—mentally ill adults—who didn’t have independent living. And we couldn’t find any place for them to live, so we started a not-for-profit so we could open housing for them. You know? That was kind of the first; it was a matter of stepping in for a need, you know.

Years later, when I came out to myself as a gay man, I was a volunteer at Howard Brown, which was a guerrilla clinic at the time. The City of Chicago and this little not-for-profit clinic did STD testing. It was a storefront with sheets hanging up as room dividers. Gay men couldn’t tell the truth to their doctors, because they might end up in the local newspaper as a gay person. So we were just providing community-level health care.

It’s interesting; that’s where I first met Ken Mayer [now medical research director at Fenway Health in Boston]. But that clinic got involved in hepatitis B vaccine research. And I was fortunate to be around when the headlines on the news, on the East and West coasts, started talking about this GRID thing. And we thought, “Well, we’d better pay attention right here in Chicago.”

I ended up moving from what was a volunteer phlebotomist to being board president of that organization. And then somebody suggested I quit my job, because the NIH had awarded the organization the MACS [Multicenter AIDS Cohort Study] contract. And part of what I did in business was run logistics. And we needed to get this clinic up and running.

One of my friends on the board became the board president. I became the deputy director so the person who had been placed could continue to do what he was doing. And I helped get that study off the ground.

What I was fortunate about with that is that eventually led to my not only leaving the chemical manufacturing industry but finding myself available in my community at a time when there was a lot to do. And we didn’t know what it was we needed to do; we just knew there was a lot to do.

I remember being at a march with [HIV doctor] Renslow Sherer. And he brought his children. And he said, “Is this a gay rights march or an AIDS march?”

I said, “It’s a both.” You know, that—that’s where we were. We didn’t know what was going to be next. We just knew that those of us that were there needed to call attention to what needed to happen next and fight for what would happen for the people in our community. And we couldn’t draw the line at that time around things that mattered to people.

It was also a time when language was important, you know. Lesbians wanted to be called lesbians. And gay men still wanted to call them gay. Like, “Why do you have to be different?”

And I was always fortunate, I guess, to be in a place where I could take on the next thing. So, I lost a partner. I had my own personal challenges around that time. And I left Howard Brown. The good news is, any organization I’ve ever been involved in survived my laziness.

KF: Which is a great legacy, in and of itself. Which is not always the case in this field, which we know.

Wakefield: No. But we often think, like, “I don’t know how I’m going to survive.” But we think what we’re doing, somehow or another, it won’t get done anymore. And Howard Brown grew to become the Howard Brown Health Center, which has its own, certainly, history and contribution to both HIV and LGBT health.

But I also was able, a couple years later, to end up in the early days of Test Positive Aware Network, when it was moving from being a group of people who met at a field house to share what they had learned from other people and to photocopy information they had. And I got to be the first paid full-time director at Howard Brown and was there when a group of really dedicated people brought together Test Positive Aware Network and a Midwest-centered model on taking care of our communities.

Now, I have to mention race at this point. Because part of my motivation was not as pure as it seems. I was concerned that white people in New York and San Francisco would have all of the information and, not only would people in the Midwest be left out; but Black and Brown people would be left out. And I knew if I could get in there and help share what the rest of the community was doing to survive, I could also make sure it was shared with Black and Brown people. I guess what I want to say about that is we didn’t talk about it, but we knew it was important, you know?

It wasn’t that long after that, that the National Task Force on AIDS Prevention was founded. I don’t know if you’ve ever heard of that group, but it was an organization to bring together Black folks, Latinos, Native Americans, and APIs [Asians and Pacific Islanders]. And we tried to have an organization that would be responsive to people of color. We had national conventions. Most of the people were working full- or part-time someplace in AIDS work. But there were friendships that grew out of people saying, “We’ve got to take care of our own. And we’ve got to work with everybody else that has the things that we feel are going to be necessary to take care of our own.”

Those kinds of connections helped me be connected to people like Phill Wilson, Vallerie Wagner, Marjorie Hill—just, you know, a whole set of people who have provided leadership but often get forgotten, I think, in today’s telling of the stories. We are so busy looking at who’s on the front line of social media; we forget the folks that had to step to the plate and frequently spend their own nickels and dimes to get to conferences. And, if it was necessary, back in the day, you know, we’d share a hotel room. Somebody would say they had a hotel room. And if that meant four people could come to the conference, we’d all stay in that hotel room.

And, quite frankly, sometimes it was more than four.

But what we also—I’m just rambling; I don’t even know if this is going where you wanted me to go.

KF: No, it’s all good stuff.

Wakefield: What we also shared, though, were the things that we were discovering in culture. One of the things I thoroughly enjoy in my early days of retirement is just sitting down with three books of, to me they’re Black poets; they’re primarily poetry—Brother to Brother, which was edited by Essex Hemphill and Joe Beam; and The Road Before Us, by Assoto Saint; and Essex’s Ceremonies.

It was sometimes the poetry from those books that gave us the sense of unity as well as the underlying strength to say, I don’t know what the outcome shall be; but other people are getting through it, so if we just hold on to each other we’ll get through it together.

KF: There’s so much in that; I actually really want you to write a book. Now, having done all that kind of work early in the epidemic. But that’s a sidebar. [Laughter]

I wanted to fast-forward to the mid-’90s, when antiretrovirals, or HAART, as we used to call it, become available to people. And if you could talk a little bit about what was your work at that time, and how—what were the conversations like in Black and Brown communities around the new HIV medications? And what was your role in those conversations, or helping shape with communities what the information would be, what the medications did, what they were, and the challenges?

Wakefield: My role was always to support information dissemination, but also to hold the pharmaceutical companies and representatives accountable. And sometimes, since I wasn’t taking any personal money or gain from those companies, I could say things that other people couldn’t say. I didn’t need their drugs to survive.

You ask about the mid-’90s; but I remember when ddI [one of the first drugs approved to treat HIV] came out. They advertised it as a chewable tablet. And I used the position that I had in the world to stand in front of a pharmaceutical company, bite one of those nasty things, and say, “This is not a chewable tablet. And I dare any of you to bite and chew it and say it’s a chewable tablet. Here.”

People who needed that medicine to survive really were—you know, I was HIV negative. I was worried that we didn’t have things for negative folks at the time. But, you know, I would say, when it came to the protease inhibitors, there was no conversation in the Black community. We didn’t have, as we don’t yet have, enough Black physicians and nurses speaking up on our behalf that could overcome people’s racial barriers or white coat syndrome in a manner that people were willing to access these mystery drugs.

Most of us, as Black people, grew up in predominantly Black communities in America, where our health-seeking behavior was, you go to somebody as a last resort. And what was unfortunate was that translated, for a lot of Black people, to a decision that they weren’t going to try these newfangled drugs that there wasn’t a lot of history on. They would much rather try some sort of natural path, or natural medication. And no—there were very few people saying you could do a combination of natural elements and Western medicine. But how do you get the best out of both? That was down the road.

Unfortunately, it meant that we were moving towards the health disparities that we see today for Black and Brown people. You still have some older people that will not take those meds because they’re “poison,” and/or some that have had to save face, you know.

I’m really fortunate to have known Ron Simmons on a different level. And I remember when Ron Simmons started to turn the corner and said, “You know, we have to get our people to take these meds.” It was a big moment, because he was recognized as a thought leader.

KF: What was your transition to Fred Hutchinson Cancer Center and the HIV Trials Network? How did that happen, and when did it happen?

Wakefield: Well, I’ll give you the Reader’s Digest version.

I was at TPA for five years. And I started to feel the kind of depression coming on that I had felt when I left Howard Brown. So I thought, “I need to get out and go do something different.” So, I went to work at an organization called the Night Ministry in Chicago, which provides shelter and street outreach for homeless and runaway youth. Homeless and runaway youth were easier to me than HIV—did not have the same level of grief and loss. I remember distinctly saying to somebody at the end of my first week, “It was a good week. Nobody died.”

And as soon as I said it, I thought, “Oh, my goodness. That is the criteria for a good week: Nobody that’s getting services here died.” But it was where I was. It was what I had to learn.

After five years of being there, though—and this is why I know retirement might be a five-year stint—after five years of being there, I thought, “I have to get back to HIV. There’s too much work to be done. I need to be somebody doing it. But I’m going to take six months off.”

So, the first thing I did was I headed to South Africa. And my friends in South Africa said, “I thought you were taking time off.”

I said, “I am.”

They said, “Well, you’re asking about the municipalities and health hygiene, and how people get services. And you’re going to this rally, and that march. That’s not taking time off.”

And I said, “Well, it’s not my vocation.”

At the end of doing that, I had told a friend who worked at a pharmaceutical company not to call me for three months. And she called on October 1 of 1999; and she said, “It’s three months.” I said, “What’s three months?”

She said, “I want to talk to you about a job doing community work for our company. You told me not to call for three months.”

She called. I knew that I didn’t want to work for Pharma yet. I knew that I didn’t want to work for Pharma—just put a period at the end of that.

KF: Right.

Wakefield: And so, I started looking around. And that same weekend, NIH had awarded a new network grant to the HIV Vaccine Trials Network. So, I started trying to get hired on to do community engagement for the HIV Vaccine Trials Network.

If you were writing a book, a whole chapter would open up, or maybe two chapters, of what happened in the next three months. What I can say is that the reason I was able to get the job: I had been to Uganda. I had been to South Africa. And I had done HIV work. So the investigators from those places said, “Well, if Wakefield wants to do it, you should consider hiring him.” You know? But I’d also been in San Francisco, and I’d been in New York. The investigators there said, “If Wakefield wants to do it, you should hire him.”

So, in January of 2000, I started as one of the first three employees at the HIV Vaccine Trials Network. And that gave us a chance to put community engagement at the forefront of the infrastructure of doing that research.

I want to say the rest is history.

KF: So let’s talk about that history a little bit. What do you feel like were some of the greatest, you know, your accomplishments while at HVTN? Or the things you’re most proud of?

Wakefield: The thing I’m most proud of is that not only did we have to have a plan for community engagement in the central office; but every research site needed to have money in their budget to do community engagement. And that was a new concept back then.

But it happened. And I would say, to this day, whenever there’s a successful clinical trial, there is an investment in community engagement that is not about recruitment; but is about a partnership between the investigators and the community where they’re doing the research. And we got to the place where it became the norm to do research with people, not on people. That, to me—it’s not a single person’s accomplishment, but a group of people had to embrace that. And we learned that from treatment activists. The most successful way to do research was with people, not on people.

The second piece for me was the Legacy Project. The Legacy Project was an idea that, if we were going to engage communities of color, it was going to take more than it was to engage—I’m not trying to be [racist]; we live in a racist country—it was going to take more than it was going to take to engage white, gay men, who wanted to find some HIV prevention, who wanted to be in research, who wanted to be part of a big research project. Because they thought that was going to be part of saving their lives.

And when I first asked for the money to start the pilot projects related to the Legacy Project, Larry Corey said, “Well, you think you can do it for that amount of money?” He said, “I’m going to give you a budget for twice that amount of money. Because you have been a good steward of the resources we’ve had so far. And if you don’t need to spend it, you won’t spend it. But I don’t want you to have to stop midstream and come back and beg for more money.”

And, you know, at the time, Tony Fauci supported that. And we were able to get the resources we needed to start the Legacy Project, while there was NIAID, an educational initiative, also supported engaging communities of color and did the research behind it. And, you know, people like Peggy Johnson, somebody else who retired a few years back, saw that the best science was going to be done when there was a partnership—not just lip service—to engaging folks in the research that we were doing.

KF: I see several threads in this. I’ve been thinking a lot about what’s happening now, in terms of COVID-19 and Black and Brown folks, and I see kind of a resurgence of—well, you know, there’s always been medical mistrust. There’s always been conspiracy theories; there’s always been vaccine denialists, right?

But, to me, I feel like I’m seeing it kind of surface again in ways that remind me of some of the things in the early days of the [HIV] epidemic, from like the late ’80s, early ’90s. And I feel like I’m constantly in social media comment threads trying to provide people with real information.

So, I guess I want to ask you, what are your concerns about the level of mistrust and conspiracy theories now? And what do you think needs to be the response of folks like myself, Black folks who actually work in public health?

Wakefield: I think that the biggest challenge is to look at any disparities we see with attention to the fact that those disparities are not about the way the virus is interacting with Black and Brown people—that those disparities are about how Black and Brown people socialize. Those disparities are about families that live in congregant living. Those disparities are about income rates that only allow you to live with other people.

And so, I think the biggest challenge for activists is to expand the conversation, and to expand it in a way that you don’t allow the information to be a lie; that you realize there’s going to be conspiracy theorists. And you have to keep going in spite of this. You have to find ways to tell the truth, no matter how many conspiracy theories pop up, and no matter how many people come forward and say something that you know is a lie.

Unfortunately, we live in a society right now where our leadership promotes hate and promotes untruth, if it will be a means to an end. And that’s the norm, rather than the exception. There’s no way for us to look at the losses we’ve had in the last few weeks, in terms of civil rights leaders, and forget that they were truth warriors as much as anything else. They were able to call things and name things without personal gain as part of their mission.

And you don’t think about who’s going to step in the gap that they’ve left. Because they were the kind of people that did two things: They took a public stance; but they also knew how to get on the phone and call other people and say, “Come on. We have to support this together. Come on.”

KF: Right.

Wakefield: “There may be nothing in it for you. You may never get your name on the front page. But I need you to be here with me. I need you to stand beside me.” And we don’t have enough of that.

But I guess I would even look at it in the way that—I want to compare it to my relationship with you. And I don’t know if you see the relationship the same way, but if I go 18 months and I don’t talk to you, I’m OK. Because I know wherever you are and whatever you’re doing is right. But if I look down at my phone and I see your name, or I look at my email and I see Kenyon is calling, I think, “Well, whatever it is, I probably need to do it. Because Kenyon wouldn’t be calling me if he didn’t think I needed to be doing it.”

Those kinds of relationships, for us, have had to cross racial lines; they’ve had to cross economic lines; and they’ve had to go beyond business friendships.

KF: What’s your advice to young Black and Brown folks who are, whether interested in public health or research or HIV, specifically, coming into this field? Where do you feel like you wish there was more energy—young people moving into what part of the work, in what kind of space?

Wakefield: I guess my advice is find two things: somebody who’s not in your day-to-day vocation and avocation circle that you know will support you no matter what; that when you’re ready to curse the world, you can go to them and they’ll hold you up. But, secondly, when you see an opportunity, if you think you might fill the gap, if you think you might be the one person that can do it, seize that opportunity.

Because your vision is going to carry you into a new way of doing it that no one else can do. And I have always had that—it hasn’t been the same person all my life—I’ve always had somebody I can go to. But I’ve also been willing to say, “OK. It’s crazy, but I’ll do it.”

Moving to Seattle was an, “OK. It’s crazy, but I’ll do it.” I just have to tell you. The first Friday night I was in Seattle, Ted Koppel was doing a show on race in America. And he said, “We’re coming to you from the whitest city in America.” And I thought, he’d better be in Seattle. And he was.

But, I guess this is the third part. If you get a chance to merge your vocation and your avocation, do it. Don’t miss the opportunity to merge your vocation and your avocation. Because you’ll have day-to-day joy that can’t even be described.