Steven Wakefield has waged war on the destruction of HIV/AIDS since the beginning of the epidemic more than 30 years ago. In this interview, the former Howard Brown Health Center director shows us the very real and personal scars obtained on the quest toward a cure in his lifetime. The former Chicagoan now lives in Seattle, still working on fighting HIV/AIDS.
Windy City Times: How did you get your start in gay-rights activism?
SSteven Wakefield: When I was eight years old, I used to go to Operation Breadbasket, which was the precursor to Operation Push, and we were following those rabble-rousers, those Martin Luther Kings and Jesse Jacksons, and doing things. By the time I got to university, it was the Vietnam War era. I remember in 1969 there was a rally and I got really, really pissed, and I took the microphone, and I said, "You white people don't know how to rally … how to give a riot. If you really believe what you're saying, you'd tear this university apart brick by brick." Then I went home, because there wasn't enough anger for me.
As I got through school, I channeled that into more constructive things. A group of friends and I started a not-for-profit so that we could actually create housing for mentally challenged adults to live on their own with supervision, which was a rabble-rouser idea at the time, now you can't imagine that a housing authority wouldn't provide that. However, my movement into healthcare actually came because as a gay man I wanted to meet people some place other than in the bars; I knew everybody in the bars. I hung out enough in the bars, I should say. Still, I kept thinking, "I want to meet guys that have some level of philanthropy in their heart of something. They found more to life." I had tried to get involved in the MCC churches, and I didn't find exactly what I was looking for there, although, I did find my longest relationship there.
WCT: Well, there you go. Without looking, you found it.
Steven Wakefield: When we had our first date night together [ in August ] , he said he had asked me out in May and that I had just stared at him like he'd lost his mind and kept going. I don't remember that, but he swears it's true. I went to Howard Brown Health Center [ then Howard Brown Memorial Clinic ] to volunteer so I could meet guys ( and not the customers coming through ) . At the time, it was a guerilla storefront operation, where people hung sheets on clotheslines as room dividers, and we were working with the CDC and the Health Department to provide STD testing and care for gay guys who could not admit to their physicians who they were and what they did. They still went to the family physician, they could not tell that family physician, because telling the family physician would be coming out to the entire family. There weren't a lot of gay practitioners at the time.
One of the docs who was also a volunteer at the time was Ken Mayer, who is now the medical director for Fenway in Boston. He was in med school in Chicago at the time … or residency. While we were doing what Howard Brown did at the time, which was providing STD testing and care, people started doing research around the Hepatitis B vaccine. … There was an [ Hepatitis B ] epidemic in our community, and we knew we needed a vaccine against it, so we helped the CDC with that research. That was sort of my first entry into research.
Then along came this thing called GRID [ Gay-Related Immune Deficiency ] , and we were all part of the 4H ClubI don't know if you have read about that, but it was a pretty terrible thing. I was working in chemical manufacturing. I worked for Armour Dial Purex, at a time when more than half the country used Dial soapthe bar of soap that's their household product. I was their distribution manager for the eastern half of the country for manufacturing when I was on the board of directors at Howard Brown. I became the Tuesday night volunteer coordinator, the board of directors was expanding, and they wanted people on the board from the direct service component; everybody from Tuesday night, which was the biggest night because if you had sex Saturday night you were dripping by Tuesday night. I went on the board, and the next thing I knew, I was the chair of the board. I can't tell you how that happened. It is the history of what we Wakefields do.
WCT: Originally, you thought GRID was going to be this little thing that would eventually go away with a little time and money, right?
Steven Wakefield: I remember our summer meeting, which was just supposed to be a picnic, where they told us that we needed to raise $2,000 to start this little project that wasn't going to take long and wouldn't take a lot of money. By then we had the name "AIDS", and we were just going to call it the AIDS Project. It was just going to be a little project, and we didn't know where we were going to get the $2,000, but we knew we had to do something.
Well, a couple of the docs who were with Howard Brown wrote a grant application to do research on a study called the Multi AIDS Cohort Study ( MACS ) . The National Institute of Health ( NIH ) wanted to do a study on the natural history of AIDS; so it was the Multicenter AIDS Cohort Study. Out of all the applications, they funded five universities and one clinic. One community-based clinic. We got the grant, and it was a multimillion-dollar grant, and we didn't know what to do. We had never had anything like this, and we were going to have to actually now go out and create a research center with medical records and systems that we did not have and did not know how to get.
WCT: The first thing on the list was to find the appropriate space to construct the institution you had no idea you were going to be awarded. Tell us about that experience.
Steven Wakefield: The person who was the then executive director, Harley McMillen, and I went down to sign a lease on the new space that we were going to need to do this, and I asked for a copy of the lease. Well, since I ran warehouses for a living, I read the lease and said, "There's no way. He's charging us to build out a bathroom. He's gotta build out bathrooms for anybody." I tried to negotiate with the potential landlordthe community had agreed on that spacebut I wouldn't sign the lease as the chair of the board. I ended up tearing up the $10,000 check. I had never torn up aI don't know if I've ever torn up a $10,000 check sincein front of the guy's face, because he wouldn't negotiate.
We ended up in a different space, which was an old furniture warehouse, and we gave one of the most fabulous pre-construction parties. It was one of those parties that only gay men could give in my mindwith hard hats and the whole ball of wax. We ended up moving into the new Howard Brown home, which was less than a block from where my parents had lived when I was born. It was a phenomenal moment. In terms of the epidemic, there were things that we needed to have in place for the NIH that we subcontracted to Northwestern Hospital. Northwestern was the premier hospital in Chicago; it was the place where if the mayor got sick, that was where they rushed him. We, this little clinic, were subcontracting with Northwestern Hospital. They were our subcontractor on this grant. That was when I left chemical manufacturing and went to work on getting us ready, as an employee of Howard Brown.
WCT: And all of this started because you were trying to meet someone with passion and compassion in his heart.
Steven Wakefield: Yeah, whoever he wasI got too busy and never met him.
WCT: Part of the study was figuring out how many sexual encounters one had. This was during the sexual revolution. How in the world did you calculate your partnerships?
Steven Wakefield: This is an important piece of the epidemic for me. In my very first interview for the study as a study participant, the person said, "So we're going to ask you some questions and we're going to figure out some things here. How many guys have you had sex with?" I said, "500." He said, "No, no, no, we have a way to help you figure that out." They took you back through chronological history and asked you when you first had sex, and they talked you through all the years that you had had sex. I was 34. He takes me through this whole thing like, "So when you were in college, in your freshman year of college, what kind of things did you do and how often did you have sex?" We talked through all of the years, and we got to 487 when he was done. I said, "I forgot 13 people. I told you 500!" That number was not unusual. It was somewhat of a surprise to some of the people who were doing the interviewing, but that was not unusual for a gay man to have had that many partners.
WCT: Why is that?
Steven Wakefield: There was a level of comfort. You used to say, "Hey would you like to come over for a cup of coffee?" You would get in your front door; shut the door and say, "I don't have any coffee … ." We were able to enjoy who we were. That's all. I think, yes, you are right, I think the whole country was into a sexual revolution. That study really became the pivotal study to understand how people became infected. There were always these major universities and this one little community-based clinic.
WCT: You witnessed the start of the epidemic when, I imagine, many of your friends and loved ones passed on because of it. How difficult was that time for you?
Steven Wakefield: I had a lot of grief and a lot of loss at the beginning of the epidemic. My lover died. We became a community of caregivers; we took care of each other. We took care of our friends. I was at such a point of devastation that I had, what probably if I had been clinically diagnosed, would have been a nervous breakdown. I ended up leaving Howard Brown and taking some time to fit myself together.
There were 36 guys who would meet every week in a field house in Chicago to share information about HIV and they had incorporated as a not-for-profit called Test Positive Awarethe network wasn't founded yet. There were 36 guys who would Xerox HIV medical information that they got, meet in this field house to share and then go back and tell their doctors because they were trying to save their own lives.
WCT: So they all had HIV?
Steven Wakefield: They all had HIV, all 36 of them. They put a job announcement out and they wanted to hire a director. I applied and I was the final candidate and they made me an offer. It was $3,000 less than I had said I would make, because I promised myself I would never make less than half of what I was making when I worked in industry. They went onto their next candidate and when they called to ask me why I didn't take the job, I said, "What do you mean?" Because I didn't know they had gone onto their next candidate. I thought they were going to meet and decide to hire me. Anyway, I went back and told them, "You need to hire me. I'm the person that can do this job. It's my job to raise the money, so you hire me and I'll raise the money."
Now in my second board meeting, I had them pass a resolution that we would pay salaries first before we paid rent or bills. The good news is, when I left the organization, there was the fundraising for the next 18 months. There was money in the bank for the next year's operating and the next 18 months fundraising. I left a stable organization. Nevertheless, that was five years later. When I got there, we moved into an old warehouse, because I had experience doing this now. We paintedwhen I was hired, it was one support group, once a week, but a bunch of really brilliant guys who had a vision for taking care of each other and taking care of the community around HIV. It was a painful job. Painful, painful, painful. That board of directors that hired me, six months later, half of them were dead.
It was a job riddled with grief and loss, and an expectation that you would just keep going. By then I had some new resourcesI had some new resiliency, but at the end of five years, I was back at that place where I said, "I can't do this". I went to do something simple. I went to work with the Night Ministry, which did homeless and runaway youth. It seemed simple.
WCT: Well yeah, compared to what you were living.
Steven Wakefield: One of my friends called me on Friday afternoon and she said, "How was your first week at work?" I said, "It was great. Nobody died." It was one of those times that you just want to catch the words that have just come out of your mouth and say, "I can't believe I said that." It was real telling of the personal impact for me of the epidemic that my idea of a great week was a week that nobody died.
I also promised myself that I would leave the Night Ministry if the Night Ministry's budget for HIV work ever got more than 20 percent. In January of 1999, the board passed a budget that had 20.46 percent HIV work, and at the end of the board meeting I said, "We need to make a plan for me to leave." They said, "But you brought us the budget!" and I said, "The treasurer brought you the budget. It's the right budget for the organization where it is today, and it's also the right time for me to leave." They didn't want to hear it, so later that spring I just said, "Here's my last day." It was easier for them to make a plan for my departure that way. It was a great five years.
WCT: Did it feel like a little bit of a break for you from doing the HIV work?
Steven Wakefield: It felt like a great break from the challenge of grief and loss, because there's something about reconnecting a runaway child; there's something aboutthe statistics about the number of young kids who are gay or lesbian, who aren't really running from something, they are running to a better situation. They know the situation that they are in is not safe for them, is not right for them; they weren't running away from home, they were running to something better. What you could do is connect them often to something better. You could find that aunt, that relative, that community person in their neighborhood, with whom you could help them get into stable housing, which was the key to a stable life. You could also get into longer-term housing.
There are many stories about how we didn't exactly always follow the HUD rules for how long you could provide housing. Because we were allegedly providing emergency housing, technically after so many days you are supposed to kick a kid out. In a Chicago winter, we would kick him out, and say, "If you happen to sleep in the sleeping bag next to the space heater in the basement, we won't tell anybody." My staff would always worry, and I would say, "If the police come, call, I'll come over and I'll be the one arrested." It was great work, and it's still great work, and the Night Ministry thrives. It was supported at that time by over 200 churches and synagogues across Chicago.
On the other side of it, when Richie Daley was elected [ mayor ] , he needed to appoint people to various boards of directors. I was appointed to the board of health as the HIV guy. We agreed, the gay and lesbian community leadership, we were looking for the right appointment, that he could make an appointment that was an openly gay person. Part of why I was the right appointment was I was Black, and so there were people who would fight an openly gay appointment who wouldn't fight a Black appointment to the board of health. So I got to be the Black guy and the gay guy all at once … in a major city.
I was also on national committees for the NIH around HIV research, and really involved in the epidemic as both a vocation and an avocation over the years. One of the greatest opportunities for me was I was invited in the formative weeks and months, to join the board of directors of an organization called the AIDS Vaccine Advocacy Coalition: ( AVAC ) . It is no longer … the work of AVAC has expanded, so we've kept the AVAC name, but it's AVAC Global HIV Prevention.
WCT: What are your thoughts about the AIDS Memorial Quilt?
Steven Wakefield: I remember the last time the quilt was on the mall in D.C. It was a sea of grief. You were not there to commemorate a person; you were there to feel the weight of this epidemic. Talk about, for me, visionaries, for Cleve [ Jones ] and the others to be able to put together that project. To this day, I can pop in that video and go to a place of healing because of what has happened with that [ project ] .
WCT: Do you feel that we will ultimately find a cure for HIV/AIDS through extended ( and sometimes ) non-conventional methods of research and prevention?
Steven Wakefield: We have to continue to do research. We have to find that next generation of drug. We have to combine that with a vaccine, and who knows? Maybe a partially effective vaccine and a partially effective drugbecause see the drugs depend on human beings to take them, and yes people will take them to protect themselves, but they're not going to take a pill every day. People have trouble taking vitamins every day. Diabetics who can measure how much their blood sugar is have trouble doing what they do every day. Everybody I know who believes in good dental care, you floss better the week before you go to the dentist. Without monitoring and adherence, people are not going to be able to do this. So maybe there's a pill out there people can takenow, coitally is the word we use in the field, but just before you have sex. Maybe there's a combination HIV-Viagra pill. Let's keep doing the research to find it now. Let's not just settle. Let's get what we know works now and let's implement it where it makes sense to implement it, but let's commit to the research to continue to find what we need to find.
Currently I work in the HIV vaccine trials network at Fred Hutchinson Cancer Research Center in Seattle. We are using stem cell research to help us move towards a cure. For me, it's exciting today to be at a place where there is both vaccine research and cure research going on simultaneously. Even if we find a cure, or when we find a cure for those who have already become infected, the ability to protect future generations from ever becoming infected with a vaccine as we do with polio, as we do with many other diseases, is still the way we're going to stop this epidemic.
WCT: So, tell me what works and what definitely does not work ( regarding prevention and testing for a cure ) in your opinion.
Steven Wakefield: What we do is we don't just test a vaccinewe give a person condom access. If they need to learn how to use a condom, we'll teach them. We make sure they know how to get sexually transmitted diseases treated. Any new sexually transmitted infections they might have, we tell them that they are going to be in a study where some people are going to get a vaccine that we think might offer some protectionwe have only had one vaccine out of the hundreds tested that offered partial protectionand some people are going to get a placebo. You have as much chance of getting the placebo as getting the vaccine. So protect yourself. Do not think that you got the vaccine; you have as much chance of getting the placebo. We know what the rates are in the 21 cities where we are doing the studies of HIV. We want to protect against HIV infection, but we test vaccines, and so right now, we have over 20 different studies going on.
The largest study in the world right now of an HIV vaccine is going on across America for a vaccine that we believe is safe and can provide protection. But what we know about it, is that we need to have men who don't have a predisposition for a certain cold virus and that we need to have men who are circumcised, because the jury is still out on the role of circumcision in gay men. Someone said the other day, and I just thought, "Oh, what a brilliant statement", that "If we wanted to do a true HIV intervention that we knew 20 years from now would drop the HIV rate in the US, we would mandate infant circumcision." Circumcision has historically been adapted as a way of reducing the number of sexually transmitted diseases, and we know that the HIV rates would be lower, but they are not significantly low enough to mandate circumcision among adult gay men. So, adult gay men need a vaccine.
One of the most effective interventions against HIV is a condom. No one has come up with a better condom. So imagine if someone were working on the technology for a spray-on condom that with a little bit of frictionso you would spray it on and then it's going to say, "Okay on this side it's 98.6." As soon as it knows it's 98.6 on the other side, it becomes a protective barrier. For $2 and the use of a condom, you can protect somebody from HIV infection; you can protect 96 percent or more of the new infections.
At one time as a community, we made surewhen the health departments weren't distributing one condom because they weren't interested in the lives of gay men; condoms were about birth controlwe went out as a community and we made condoms available to ourselves; we took care of each other. That's a big part of AIDS at 30: as a community, we have continued to figure out ways to take care of each other and ourselves.
What's unfortunate about our younger generation is many of them are dependent on a medically driven healthcare system to take care of them that's not building community … no one's going to slap you or punch you in the face because you didn't use a condom.