Over the last three decades, Chicago native Phill Wilson has firmly established himself as one of the country's most outspoken HIV/AIDS activists. First diagnosed in 1981, Wilson has worked as a community organizer, Los Angeles city official, and, most recently, presidential advisory council member.
Since founding the Black AIDS Institute in 1999, Wilson has worked to mobilize and unite Black communities across the country in the fight against HIV. He's published articles in The New York Times, Essence, Ebony, VIBE and Poz; and has acted as a World AIDS Summit delegate.
Wilson sat down with the Windy City Times to talk about his activist roots, President Obama's track record, and what's next for the Black AIDS Institute.
Windy City Times: You've been involved since the very beginning. How did you first learn about AIDS?
Phill Wilson: My very first memory, actually, was very personal. I came out in 1980; and in 1981, my partner found out he had swollen lymph nodes. Our doctor raised the issue about this new disease, and I realized that I had swollen lymph nodes as well. They did biopsies, and the only information at that time was that the lymph nodes weren't normal. There were conversations about the 'gay plague' and GRIDall these kinds of thingsbut there wasn't much else to tell.
WCT: Did you get involved with activism efforts right away?
PW: In 1981, I was involved in the gay community in Chicago, primarily through sports activities and social activities. In 1982, we moved to Los Angeles, and a number of things happened. I got involved in Black and White Men Together, and I attended a meeting very early on, where Kaposi's Sarcoma Foundation in San Francisco was talking about opening a new branch in Los Angeles.
The next year, I spoke at a candlelight vigil in Los Angeles in the federal building in Westwood. That was my first real involvement. I read "Where will you be when they come?" by Black lesbian poet Pat Parker.
On a personal level, more of my friends were starting to get sick. Another turning point was Larry Kramer's article in The Native. And then there was Proposition 64, which was an AIDS quarantine initiative in California. That was probably the straw that broke the camel's back for me. I kind of said: This is where I needed to spend my full time and energy. That was when I realized that we were really going to need to be fighting for our lives.
WCT: What was your first step?
PW: I volunteered for the campaign [ against Proposition 64 ] . After that, Eric Rofes, who was then the director of the Gay and Lesbian Services Center, called me to see if I would work on the STOP AIDS Project in Los Angeles. That was the first time I had a job working with HIV.
At that point, my personal health was not at the front of my mind. My partner, Chris Brownlie, whom I met in Chicago, was starting to exhibit symptoms. [ Brownlie succumbed to AIDS complications in 1989 ] . I was worried for his health, and when my partner was sick, I really moved full-force into my activism. And then my personal health became affected too.
WCT: Do you think working so much wore you down?
PW: I don't. I really don't. Not at all, actually. In those days, there was no medicine. There was not really anything to do. I think it was just a matter of time.
WCT: You went on to become one of Los Angeles' most prominent HIV/AIDS activists, with appointments throughout the 1990s at the Los Angeles County HIV Health Commission, the HRSA AIDS Advisory Committee, AIDS Project Los Angeles and the city of Los Angeles. But then you stepped away for a few years.
PW: In 1997, I retired from AIDS Project Los Angeles because I was too sick to work. I ultimately went on the new medication, HAART, and by 1999, I felt like I was well enough to go back to work. And that's when I founded the Black AIDS Institute.
HAART was what would start my road to recovery. Like most of us, my health had been like a roller coaster. There were times I would get very sick, and then I'd recover. Then I'd get very sick, and then I'd recover. And HIV back then was this roller coaster, where every time you got sick, you got sicker, and your recovery was not as great as your recovery the time before. It was a downward pattern.
In 1996, I kind of hit the bottom where they thought I was going to die. That was around the time where they had just developed the protease inhibitors. I went on them, recovered, and have been pretty healthy ever since.
WCT: Why did you decide to launch the Black AIDS Institute?
PW: In early 1999, I began to look around and kind of ask myself: Okay, so what's going on? It felt like no one was mobilizing the larger Black community. There were organizations that were trying to do prevention work, and there were organizations with Ryan White funding trying to do treatment and clinics. But there really was no one, in my opinion, that was taking on the larger Black community with HIV and AIDS. I felt like we had to break away from the concept of AIDS as a 'gay disease', and expand it so it was important to the entire Black community.
WCT: How did you go about doing that?
PW: Our strategy from the very beginning was to identify stakeholder communities: civil-rights organizations, policy makers and elected officials, media organizations, faith-based organizations, fraternities and sororities, colleges and universities, and businesses. We targeted them with the idea being that if we're going to end the AIDS epidemic, that no matter who you are, where you were, you couldn't escape the reality of the need to fight HIV.
Pretty early on, we decided we were less concerned about disparities and more concerned about straight-out ending the epidemic in our communities because the truth of the matter is, you can reduce the disparities and still have a thriving epidemic.
WCT: Why do you think AIDS has hit Black communities so much harder than others? [ According to the CDC, African-Americans comprised 14 percent of the U.S. population in 2009, but accounted for 44 percent of all new infections ] .
PW: We are still suffering from a late start. Our communities were slow to get involved. HIV is a disease of opportunity, and it's very difficult to fight the disease once it gets ahead of you.
There's been a disparity of resources in Black communities. I'm not just talking about dollar resources. There's not the same kind of infrastructure. The organizations that are charged with fighting the AIDS epidemic in Black communities are not as large or as old as other organizations. And there continues to be issues around stigma that undermine our ability to address the epidemic as well. That issue is getting better, but it's still there.
WCT: In 2010, you were appointed to President Obama's Advisory Council on HIV/AIDS. What does that entail?
PW: I'm the co-chair of the disparities subcommittee. The purpose of the council is to make recommendations to the President on how the nation should respond to the AIDS epidemic. Our primary focus this year has been implementation of the national HIV/AIDS strategy and trying to come up with tools to evaluate its effectiveness.
WCT: Compared to other administrations you've seen, how do you think the Obama White House is shaping up?
PW: We will see what the final grade will be. I believe that the President has had some hits and misses. Developing a national AIDS strategy was a huge hit. Healthcare reform was a huge hit. Lifting the travel and needle-exchange bans: Those were significant and important policy advances.
The response to ADAP has been a miss, and the administration hasn't been successful in communicating the sense of urgency around HIV. That is a miss. The President has not lent his personal bully pulpit to HIV to the degree that I'd like to see.
WCT: When you spoke at a South Side Help Center in Chicago event last fall, you said you didn't see a reason for the AIDS epidemic to exists as it does. Could you elaborate?
PW: The most talented painter can't create great art if he doesn't paint. The most remarkable architect can't create great buildings if he doesn't build. Today the reason we should not have the epidemic that we have in Black communities is because we have the tools to turn it around.
We know how to create a new HIV/AIDS reality. Some of the tools are not yet ready for primetime, but nevertheless, we have answered some of the most important questions. Can we diagnose the disease, and can we diagnose it early? Yes, we can. Can we identify where the epidemic is? Yes, we can. Can we treat people who have HIV and help them live healthier lives? For the most part, the answer to that question is: Yes, we can. Can we stop exposure? Yes, we know how to stop exposure. And that's not even new. We've known how to stop exposure for a while through condoms and behavior modification.
You put all that together … with all those things, you can literally end the epidemic.
WCT: Why, then, do you think the numbers persist?
PW: We need to be clear that some of these tools are brand new, and most of the numbers we're looking at today are not today's numbers. There's a lag time. The most recent of those numbers are probably from 2009. They're from before the PrEp study and from before the microbicide study.
That's why we're at a deciding moment right now. The question is: Now that we have these tools, what are we going to do with them? And that's our call to action.
To learn more about Phill Wilson and the Black AIDS Institute, visit www.blackaids.org .
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.