Phill Wilson: “We Have the Tools To End the AIDS Epidemic”
July 10, 2012, 8:32 pm ET
He is the founder and executive director of the Black AIDS Institute, which describes its mission as “to stop the AIDS pandemic in Black communities by engaging and mobilizing Black institutions and individuals in an effort to confront HIV.” Armed with knowledge about the disease and how to protect themselves, individuals can end the epidemic, Wilson insists. “We need to stop waiting for certainly the great white hope,” he says. “We need to stop waiting for the great government hope. We need to stop waiting for the great foundation hope. At the end of the day, we’re the ones we’ve been waiting for.” This is the edited transcript of an interview conducted on June 17, 2011; you can also read an earlier interview with Wilson, conducted for FRONTLINE’s 2006 film The Age of AIDS.
Let’s start with your story. You came from the projects. Tell me about that.
I was born in the housing projects in the South Side of Chicago. … I did not see a live white person until I was like 4 years old. Everybody I knew and interacted with was black. All the neighbors were black; the postman was black; the milkman was black; the coal people — which gives you an idea of how old I am — the people that delivered coal were black; the iceman. …
My parents knew they couldn’t give us a lot of things, but the one thing they could give us was to tell us every single day that you are fine just the way you are. … Your nose is the way it should be; your skin is the way it should be; the texture of your hair is the way it should be. And that has been helpful in my life.
And when people want to suggest in any stretch of the imagination that I am lesser than because I am black, or I am lesser than because I am gay, or lesser because I am a person living with AIDS, I just replay those tapes in my mind when my mother in my bedroom, when I was 2 and 3 and 4 and 5, [was] telling me that I am fine just the way I am. …
So many people have had this experience that you had, of one day at some point in your life discovering that you are gay. Can you tell us about that?
I came to grips with my sexual orientation in kind of an interesting and spontaneous way. I say to folks it was as much of a surprise to me as it was to any of the folks I told.
I was actually engaged to be married. I was in a long-term relationship with my college sweetheart, and we were planning on getting married, and as the wedding date got closer and closer, it got more and more uncomfortable for me, and I didn’t understand it. … I talked to people, and they said it’s just normal cold feet, and I thought, this is not normal cold feet; there is something going on. …
Literally I was driving to work one day and there was a radio interview, and the radio interview was about this new magazine that was coming out, Blueboy magazine, and they talked about homosexuality. And unbeknownst to me — I had my homosexual panic earlier in my teens, but it didn’t resonate what it was for me at the time, but this lightbulb [went] off, and it was like, this is it. I immediately knew that was the problem.
I didn’t know what to do about it, and I went to a bookstore and I bought books, … and I went back home to my fiancée and said, “I think I might be gay, and we need to read these books, and we need to figure out what to do.” She was completely shocked, and we went through that exercise, and the next week I told my mother, and very shortly after that I ended my relationship, and kind of the rest is history in that regard. …
It never dawned on me not to tell my mother I was gay; it never dawned on me not to tell my father that I was gay. And the reason is my mother has spent my life telling me that I was OK, and she didn’t say that I was OK unless I was gay. She said I was OK, and I believed her. …
“We are at a different place in the evolution of the epidemic, and we need to be talking about endgame.”
So what I am hearing is that acceptance is the open door?
Acceptance is critical in all sorts [of] fronts. Acceptance is certainly critical when we talk about the way LGBT [lesbian, gay, bisexual and transgender] people, gay and lesbian people, are brutalized in the very space where they are supposed to be protected and nurtured. You know, it’s outrageous that that happens.
It is critical for people living with HIV. In the absence of acceptance and love and unconditional support, people are ostracized. They lose their way. They develop self-destructive behaviors, they develop maladapted behaviors, and then we blame them, and none of us take ownership or responsibility for how did this person get so damaged. …
You are talking about homophobia in the family. Is that right?
Absolutely I am talking about homophobia in the family and in the communities, because often in black communities and in other communities, the family is extended. First there is biological extended families, but there are, at least when I was growing up, not only your mother and father, but it was Miss Emma who lived next door, Mr. John who lived on the other side. It was the elderly ladies that lived on the corner, and if you did something wrong would say, “Go get me a switch, because I am going to punish you right now because you did something wrong.”
The family is extended, and so it’s important the messages that young people receive [support], because we take those messages throughout our lives. … When children grow up in families where their parents don’t understand that responsibility, then those children often are damaged for the rest of their lives, and it influences, and it’s a contributing factor absolutely of the state of AIDS in black America today.
So you got into a relationship, and it sounds like you figured out that you had the new disease, right? Tell us that. …
It was 1980, and I’d just discovered I was gay and not really knowing how to figure it out, or to my knowledge I didn’t know any other gay people. … The first person I met was this guy named Chris Brownlie, and we literally began a relationship that lasted 10 years until he died of AIDS in 1989.
So I went from being in a long-term relationship thinking I was a heterosexual man to being in a long-term gay relationship with a person that absolutely changed my life. We were very, very different. … There was nothing politically that we saw that was in common, but we loved each other, and we were committed to each other. And you know, what’s funny about that is a year later we got married in a Unitarian church in Newtown in Chicago.
We decided not to do traditional vows, and we did vows that basically said that we would love each other and we would care for each other and we would be honest with each other. …
In some ways, that was a promise that was very different [than] the promise I grew up with, but in other ways it was a promise that was very consistent with the promise that I grew up with, because it was a promise that said we’re not going to take each other for granted, that we are going to wake up in the morning every single day and we’re going to work on this relationship.
Now, over the course of the 10 years of our relationship until Chris died, we were not always successful. But that was the foundation of our relationship, and that effort, that commitment, that truly learning to know someone that was so different from me and my experience, and figuring out the real true ins and outs of being in love, that there’s the romantic stuff and there’s the kissing and the candlelight and making dinners; there’s the making love — there is all that stuff. But what I learned in that experience was that a relationship is much more than that. It’s about who’s going to take out the trash and who is going to change the kitty litter and who’s going to wash the dishes and who’s going to make the grocery list, and that’s all a part of the package, you know.
And understanding truly what a human connection is and finding the ability to celebrate the drudgery of that I think also supports making life-affirming choices, and that’s why relationships are so important, and — for example, we are currently having this debate and consternation around gay marriage and gay unions. Human beings, we are pack animals. We need that connection now, and to suggest that there are whole segments of our society that don’t deserve the intimacy of relationships — and that intimacy is not just about sex. Intimacy is about the security of the relationship, and that enhances all of society.
Whether or not we are straight or gay, black or white, young or old, respecting that I need to have the ability to connect with the person, regardless of their sexual orientation, that is right for me.
And just like my mother and father had the ability to connect to each other for these nearly 60 years now because they found the person that was right for them, in regards to sexual orientation, that enhances and strengthens our society no matter who the person is.
… When you saw that first report in The New York Times, what was your reaction?
I actually didn’t see the first report in The New York Times. My introduction to HIV, again, was while I was in Chicago. In 1981, Chris, my partner at the time, started to have these symptoms that we didn’t understand. He would have these colds that wouldn’t go away, started to have night sweats and just was feeling run-down. So he went to his doctor, and his doctor examined him and noticed that he had swollen lymph nodes.
By then the MMWR [Morbidity and Mortality Weekly Report] had been released in June of 1981, and this was August of 1981, and there wasn’t a lot of information available, but there [was] something he had read about swollen lymph nodes, and [he] said: “Well, you know, there’s this thing going around with gay men in Los Angeles, and it has something to do with swollen lymph nodes. I don’t know, but it might be something that’s going on with you.”
So Chris came home, and he explained what happened, and [it] didn’t make a lot of sense to me, but I said: “Well, I have swollen lymph nodes as well, so maybe we should both go and get our lymph nodes biopsied. Maybe that will tell us something.” …
There was no HIV test at the time. There was nothing really to do with the swollen biopsies. We didn’t even know that AIDS was caused by a virus, and at that point I think we were still in the GRID stages — gay-related immune deficiency syndrome — and there was speculation that it might be caused by poppers [nitrite-based recreational drugs popular on the '70s club scene], speculation that it was really a New York disease and a Los Angeles disease, and there was this thing about these folks who were sexual athletes or people who just had lots and lots of sex.
That certainly didn’t fit my profile. I lived in Chicago; I had not been very sexually active. Now I was in a relationship with someone who was 10 years older than I was and certainly had been sexually active and had lived in Los Angeles and had lived in New York, and I didn’t put those pieces together, but that was my introduction.
Shortly after that, … we got a call from a friend named Armando who was on our baseball team who was sick and in the hospital, and within three weeks he was dead. A month earlier we were playing baseball together, and three weeks later he was dead. And that certainly was shocking, and we began to kind of read about stuff.
The next winter, February 1982, we moved to Los Angeles, and by the time we got to Los Angeles it was clear that something was happening. We didn’t know exactly what. We thought it was sex-related again.
As continues to happen today, everybody figures out a way that it’s not them. So we lived in Chicago; it was about New York and Los Angeles. We then moved to Los Angeles, and it was about people who had over 100 sex partners, or it was about poppers, or it was about all of these other things, and as is truth about AIDS today, it was truthful then. …
It’s a problem in so many ways, but in 1982 we were rustling around that there was something going on, and folks are still in the mode that it’s not about us. I was just as guilty. It was about sexually active white gay men who were on the Fire Island scene or the West Hollywood scene.
So was there a sense of relief in some of those early reports?
… I was a young black gay man from the South Side of Chicago. I had never heard of Fire Island. I was not a West Hollywood person. I had never been, barely ever been to San Francisco. I was in San Francisco when I was 10 years old. So none of this mattered to me, you know.
And I remember thinking at the time — and now 30 years later I’m ashamed of the thought, but it speaks to the balkanization that has undermined our AIDS efforts in America; it speaks to the racial divide that has crippled our ability to end this epidemic — my thought was, you know, thank God it is them and not us. For once in a lifetime it’s about white people, and it’s not about black people. …
While I got involved, I didn’t necessarily initially get involved because it was about me. I had lots of concerns about my partner. Chris was a white gay man that lived in New York and lived in Los Angeles, so I was deeply concerned about him. But at the time, I did not think that I was at risk. And so in the beginning it was about my friends, … and that does make it personal, but it’s a different kind of personal.
So there was a bit of relief for a minute. … In fact, from the very beginning, it was never ever just about white gay men. It was not about white gay men in the global epidemic, which is primarily heterosexual, which is primarily black. It was not even just about white gay men in the domestic epidemic. Black people were disproportionately impacted, as we would later find out, from the very beginning, and it is a travesty that we have yet to recover from [the fact] that it was mischaracterized in that way.
And part of the reason that it was mischaracterized in that way is that the people who had the power to drive the news story were not poor black gay men. The people that had the power to drive the story — and this is a critical issue — the people who mattered were the white gay men on Fire Island, because they had resources. It was a big deal when they got sick. It was a big deal when the white gay men in the Village got sick. It was a big deal when white gay men in West Hollywood got sick.
It was not so much a big deal when black men in Harlem and South Central and the South Side of Chicago and Bayview-Hunters Point [in San Francisco] and Oakland, [Calif.], and Detroit got sick. Nobody was looking at them. And I think that when people ask me today, Why is the AIDS epidemic so bad in black communities?,” it is bad because in the beginning of the epidemic we didn’t know it was about us, and we didn’t want it to be about us.
Even those of us who were involved didn’t want it to be about us. And then later on, armed with the misinformation, we used that as an excuse to intensify the denial in communities.
You have to explain that.
… I’ll tell you a story. In 1985 I went to do a talk for the Black Ministerial Alliance in Los Angeles to talk about HIV/AIDS, and I’ll never forget this as long as I live. I’m in a church full of black ministers, and I’m talking to them about HIV and why they [need to] get involved. And a minister stood up, and he was absolutely irate. And he said, “We’re not going to let them blame this one on us.”
And I was stunned. And I took a deep breath, and I said, “OK, can you tell me how many of us have to die, how many of your sons, your daughters, your sisters have to die before this is about us? And can I come back to you and tell you about those folks that died, and are you willing to go to those mothers and say, ‘We didn’t want to do anything when we could have saved your son’s life because we were worried about being blamed’?”
So did you ever get back to him?
I did not go back to him as a person, but I’ve gone back to him in the faces of a whole bunch of ministers over the last 30 years. …
… Did you feel anyone [was] afraid to shake your hand? …
… There is an exercise that I do that I find to be remarkable, where I talk to people, and I ask them: “Who do you know that’s living with HIV? Do you have a family member, a brother, a sister, a father, a mother? Do you have a cousin, extended family member, a neighbor? Do you have someone that you went to school with?” …
Inevitably, there’s someone in the audience who’s still sitting, who’s still saying, “No, I don’t know anyone.” And I walk up to them, and I shake their hand, and I say to them: “I want to introduce myself to you. My name is Phill Wilson, and I’m a person with AIDS. And now you know someone who is living with AIDS. And I really need you to stand up, because we all need to stand up to fight this disease.”
And after that exercise people always come up to me and talk about how important that is, and I remind them that yes, now you know me. …
On this issue around people want to make it about everybody else and they want to be in denial, when Magic [Johnson] disclosed that he was HIV-positive, I was the AIDS coordinator for the city of Los Angeles. And in that role, I ended up having to do a news program talking about Magic’s disclosure and what that means to black communities.
It was one of those split screens where I think there was four in the screen. … The other three people were actually NBA players. So each of them talked about how Magic was unique, and there was all this speculation about Magic’s sexual orientation; there was speculation about the number of sexual partners that Magic was involved [with] and how he was a partier; or it was this or it was that or it was the other thing.
And so they each went through this litany of why Magic was unique. And so I sat back, and I said: “OK, Magic is a basketball player; he plays for the NBA. You’re a basketball player; you play for the NBA. Magic is black; you’re black. Magic is male; you’re male. Magic is probably sexually active; you’re probably sexually active. Magic is in his 20s; you’re in your 20s. It seems like there’s a lot of stuff that you guys have in common.” And they couldn’t see those things.
And we continue to go round and round, that maybe there are things that Magic is unique — I believe that there are things we’re all unique — but there are things that we have in common, and those things that we have in common are the fundamental mechanisms in which HIV is transmitted.
… “Don’t talk about my business” — can you explain that?
In black communities, as in all communities, … there is the sense that the community forms a protective ring, that there’s this balkanization that goes on and that what happens inside the community stays inside the community. … And certainly in black communities we all grow up with “Don’t put your business on the street,” and “Don’t hang out your dirty laundry,” and all these phrases around keeping secrets.
And so we then internalize this culture of keeping secrets. You don’t tell other folks how poor you are. You don’t tell other folks, you know, that you can’t pay the rent. You don’t tell other folks that so-and-so is sick. You certainly don’t tell other folks that there’s a gay son, and you don’t tell other folks that someone in the family has AIDS. It’s all about those things that you think are ways to protect yourselves.
Going all the way back to slavery, you know that the slaves kept secrets; you know that you didn’t tell the master about the conversations that were happening in the slave quarters. And while thank God we’re not in that place, but some of that cultural baggage travels with us.
And as a result, what happened in black communities is that people who were HIV-positive, their families became isolated, and that denied them the ability of getting information that they needed to get, for getting support that they needed to get, but most importantly, it denied us the opportunity to have communitywide conversation, and it undermined our ability to build a communitywide movement. …
… At the end of the ’80s there was a tremendous loss, Alvin Ailey, lots of artists. Comment about that.
… For people who weren’t there, I don’t think that they can understand it. I don’t think that they can understand what it’s like to have friends die every day. … You are literally at a dying scene, where a friend is dying, and later on you’re going to another friend’s memorial.
I don’t think that people understand how it feels when every time the phone rings you’re in a panic because you know that it is about someone racing to the hospital, or someone having full-blown AIDS, or someone in medical crisis, because that’s what it was like in the beginning. …
And it was particularly devastating in small, close-knit communities like the artist communities, and we lost so many folks. And among gay men in the mid-80s there was this kind of renaissance of black gay writers that were doing amazing work. There was Assotto Saint; there was Craig [G.] Harris; there was Marlon Riggs; there was Donald Woods; there was Essex Hemphill; there was Roy Buchanan — all these amazing poets and writers that were doing fantastic work. All of them died. …
I think in the very, very beginning President Reagan did a huge disservice in delaying talking about HIV and AIDS. … It took him way too long to do anything, and not only did that cost lives, I still think that we’re reeling from that legacy. There are things that you never recover from. We could have nipped this epidemic in the bud.
We could have gotten ahead of the curve, and we didn’t because we did not have the political will to do so.
What about black leaders?
… In the very, very beginning, black leaders didn’t know, absolutely didn’t know. Every message that was being communicated to black leaders is that it was not about them.
Now granted, they were glad that it was not about them; they embraced that. And so when we got to the point where we could provide data to say, “That’s a mistake; it is in fact about you; it is in fact about us,” black leaders were slow to respond. …
And eventually, quite frankly, the tragedy of the epidemic is that the volume and the magnitude of the devastation got to a point where you could no longer deny it, and when ministers were getting calls from mother after mother saying, “You have to bury my son,” it got to the point where the denial could not continue. …
… In the mid-80s there was an atmosphere of panic. Tell us about one of the responses, Lyndon LaRouche. What was he?
… By the mid-80s, panic was pervasive, and one of the horrible things that was an outgrowth of that panic was an initiative on the California ballot in 1986. It was the Lyndon LaRouche initiative, the AIDS quarantine initiative, it was called. And … it would have quarantined everyone that was living with HIV. …
In addition to just being a horrible human rights violation, it would have driven people underground. We finally had an HIV test, and I think even just the initiative being on the ballot slowed down our ability to test people for HIV. … The Lyndon LaRouche forces waged this really horrible, horrible campaign, but the community began conversations. …
A number of black churches responded because they understood from the perspective of their faith what was the right thing to do. I think that opened the door to start to engage black communities around that time. Shortly before then the Minority AIDS Project [MAP] was started in Los Angeles, and so there was finally an AIDS organization that was focused and housed in black communities. …
… Magic and [rapper] Eazy-E are diagnosed, disclosed right at the same time. Those are two very different stories. What do you make of that?
… In the late ’80s and early ’90s there were four breakthroughs in the AIDS epidemic in black communities. Max Robinson, newscaster, nightly news, first black anchor, died of AIDS. [Tennis star] Arthur Ashe is diagnosed with AIDS and eventually dies of AIDS I think by 1993. Eazy-E dies from AIDS in early ’90. Magic Johnson discloses his HIV status. Those are all four very different stories.
We found out about Max Robinson when he died, and so now there’s this person that was the first black anchor on national television, he’s dead; he died from AIDS. There’s stigma around HIV. People are in denial about what he died of; the family hides the nature of the illness and the death.
We have Arthur Ashe, who discloses that he is HIV-positive. He gets infected through a blood transfusion, which is a way “innocent” people get infected. Arthur Ashe is a very courageous person. He chooses to be public about his HIV status. His battle becomes public, and he dies in 1993, and that moves the ball forward.
Eazy-E is a situation where again we find out that he has AIDS literally weeks before he dies. He’s a rapper, opportunity to really expand the conversation around AIDS in the black community which is somewhat lost. Rappers know, circle around and create this kind of denial, again, Eazy-E exceptionalism — he was this; he was that; he’s not like us — and it hinders our ability to move the conversation forward.
Magic Johnson discloses in a way that had not happened in black communities. He holds a press conference. He’s public about “I just found out that I have the HIV virus.” Before he holds the press conference, he at least educates himself by having conversations with the best, Dr. David Ho. He brings together a group of AIDS experts here in Los Angeles. He actually convenes a meeting to talk to folks about it.
He makes a concerted effort that he is going to play a role in this, and over the last 20 years, he actually has played a significant role. He is arguably the most visible, the most famous black person in the world living with HIV. He continues to speak out on the issue. He has also continued to live his life.
There have also been challenges. People want to and are prone [to] denial. People want to say Magic is cured. Ebony runs a story early on where they mischaracterize the effect of Magic’s treatment. … But Magic perseveres. He launches a campaign with “I stand with Magic” and is out there as best he can.
I’m sure there are lots of people who believe he could do more to address HIV and AIDS. But so could I. We all could do more. And until it’s over, none of us are doing enough.
But I think that the importance of Magic’s contribution is that on the one hand, he has chosen to be an AIDS advocate. On the other hand, and for people living with HIV, I think that he has played an even more important role, and that is the role to say that you can live with this disease.
I would like for the media to connect the dots, because it’s not just that you can live with this disease. You can live with this disease if you get diagnosed, if you get tested, and you seek treatment, and you adhere to your treatment. Then you can live with the disease. That whole package is a powerful story, and Magic embodies it.
And so do you.
I try to. … It is extremely personal for me. I do a lot of policy work, I do a lot of public work, but it’s personal. …
No matter what I do, no matter how I do it, I’m grateful [for] the meds that I’m on, the love and support of family and friends, that I do personify what can happen when you have access to proper care and you have support.
But I can never forget the day when I was in a coma in the [intensive care] unit at Kaiser Permanente hospital, and my doctors called my mother in Chicago and said, “You need to come right away because he has less than 24 hours to live.” That’s personal. …
And we should never, ever forget that it is personal, no matter how political it gets, no matter what the public policy is, no matter what the funding questions are, no matter what those issues are. It is about individual lives that can be protected, that can be prevented from getting infected in the first place. …
So you were in the hospital and you were right on the edge. … How did you pull back from the brink there?
… My episode where I almost died was right at the point where the triple combinations were being developed. … The drugs really brought me back from the brink of death. …
How did you feel about PEPFAR [President's Emergency Plan for AIDS Relief], President Bush’s $15 billion in funding for Africa and the Carribbean?
I was thrilled when President Bush announced PEPFAR. … And the question now for us in the United States is, where’s our PEPFAR? [Rep.] Barbara Lee [D-Calif.] in 2006 called for a domestic PEPFAR. [Rep.] Maxine Waters [D-Calif.] a number of years ago called for a state of emergency on AIDS in black America.
When you look at the AIDS epidemic in black America and you think about black America as if it was a country unto itself, it would have the 16th worst AIDS epidemic in the world. If black America were a country unto itself, it would be eligible for PEPFAR dollars. That is the type of response that we need if we’re going to be serious about ending the AIDS epidemic in black America. …
In the United States, if we’re going to be successful in fighting those epidemics, we need a PEPFAR. We need a proper investment. But most importantly, we need for every element of our culture, every institution in our communities need to be involved. No matter where you are, no matter who you are, you start there.
Every civil rights organization has a role to play. The NAACP, the Urban League, the National Action Network, the National Council of Negro Women, the National [Coalition] of 100 Black Women, they all have a role to play. Some of them are starting to play that role, and some of them are starting to do it in a robust way. …
As Martin Luther King says, either we do it together or we die as fools. … We are at a remarkable time in the trajectory of the AIDS epidemic. We have the ability to diagnose the disease. HIV testing has never been easier. It’s free; it’s easy; it’s painless. It doesn’t take blood; it doesn’t take needles. It’s an oral swab. You get the results back in less than an hour, and it can save your life. Knowing your HIV status is a personal responsibility, and knowing the HIV status of your partner can save your life.
So we can diagnose the disease. We can find out the communities that are hardest hit down to the ZIP code. We can ascertain community viral load so we know where to focus our energy. With the advent of vaginal microbicide, women can protect themselves from the virus and not depend on the consent of their male partners. That’s huge. With pre-exposure prophylaxis we can reduce acquisition by 96 percent, which means that if you are on PrEP, you have now provided tremendous protection from acquisition of the disease. …
Another study that just recently came out — treatment as prevention [TASP] — means that it’s important to treat people only for their own health, but if people are on treatment and they’re controlling their virus and they’re down to undetectable, they reduce their ability to transmit the virus by over 90 percent. …
We are at a place that we can talk about ending the AIDS epidemic, but only if we act and we act now. And if we don’t act now, every future infection, every future progression to disease, every future death, we have blood on our hands. It’s the result of malicious neglect. …
Explain to me this phenomenon that women are talking about, the “down-low.” …
… One of the problems that prevented and created a huge barrier for us to have an effective conversation about HIV in the early 2000s was this conversation around the down-low, which was a total distraction. And basically it [presented] the case that “The engine driving the epidemic in the black community was this huge number of black men who were on the down-low,” who were HIV-positive and who were knowingly, or maybe unwittingly, infecting black women. …
There’s no evidence whatsoever that that was a major engine driving the epidemic among black women. What it did is it created a paradigm that paralyzed our effort to have real, constructive conversations about HIV and AIDS.
The most hateful thing about that conversation is it distracted women from developing strategies to protect themselves, as if the virus cares whether or not your male partner was infected by another man or another woman. And so there are all these discussions, “How do you discover if your man is on the down-low?,” which is absolutely irrelevant. The conversation we should be having is how do you protect yourself, period. …
The other area where the down-low discussion was disturbing is that we have always had a hard time getting heterosexual men to the table, and once this down-low discussion hit, heterosexual men ran to the hills. We’ve never had a welcoming environment to find a space for heterosexual men to get involved, and we desperately need heterosexual men en masse to be involved in this conversation.
Thirdly, it created a [chasm] between black men and black women talking to each other. All of a sudden all black men were these relentless sexual predators, and that was not helpful, and it certainly did a lot to undermine not just the fight against HIV and AIDS, but it did tremendous harm to black communities in general.
Can you just explain the concept of sexual networks for me?
HIV is all about sexual networks. The truth of the matter is, life is all about sexual networks; intimacy is all about sexual networks. … The vast majority of black folks are sexually active with other black folks. The vast majority of Jewish folks are sexually active with other Jewish folks. The vast majority of Asian folks are sexually active with other Asian folks, and Latin folks with Latin folks. That’s the way it works. I find it interesting that we are then baffled around how sexual networks work with HIV.
So what happens in a community that is slow to respond, HIV enters that sexual network, whether we’re talking about a geographic sexual network, a neighborhood, a city, or we’re talking about a racial sexual network or a sexual orientation sexual network.
And this is important information to understand because it speaks to how AIDS was mischaracterized in the first place. The reason why HIV initially was identified in the U.S. among white gay men is because white gay men were overwhelmingly having sex among other white gay men. …
In black communities, because we weren’t paying attention when HIV entered our sexual network, we did not change our sexual behavior, and so we allowed the virus to have widespread transmission in our communities before we began to pay attention. …
So it’s pretty simple. Once it enters, it spreads.
That’s right. Once it enters any network, once it enters any community — and if you think about networks from the lens of geographic communities, because the other thing that drives sex is proximity, we have sex with people who are close; we have sex with people who we can connect to. Even with the advent of the Internet and Internet dating and Internet hookups, generally speaking, you connect with people — even if that’s your mechanism for connecting — that are close.
People used to connect in bars, but they often connected in neighborhood bars. It’s about proximity. Young people who are in college, they connect in schools, so you date the people that are on your campus by and large. So no matter how you look at the AIDS epidemic, it is about your network.
That also provides an opportunity to fight the epidemic, because if we can raise awareness in a network, if we can raise a commitment in a network, if we can raise a culture for people getting tested and seeking treatment in a network, we can then begin to break down the epidemic in the same fashion that the epidemic is transmitted. …
… What does Obama’s election mean?
The election of President Obama has been a remarkable boost in the fight against HIV and AIDS in so many ways. … He made a commitment to develop a National AIDS Strategy as a candidate. He delivered on that promise as president. To have a president that is willing to use his largesse, to get tested for HIV, to make it personal by getting tested with his wife for HIV, those are hugely important messages. …
He does not always do the things that we want him to do. And sometimes even when he does the things that we want him to do, he doesn’t do them to the degree that we want him to do them or in the timeline that we want him to do them.
But on the domestic front, the difference between the previous administration and the current administration is the difference between [being stationed] in Siberia and being brought into the cold. And for a huge number of us, we did not have mechanisms to communicate with our government effectively around what was going on with HIV, and now we do.
The president has re-established the [Presidential] Advisory Council on HIV/AIDS [PACHA], so there’s a body of citizens that are inclusive of people that are living with HIV that advise the president. That is important. The president developed a National AIDS Strategy that did some things that are critically important. Number one, it laid out an outline to really address the AIDS epidemic domestically. …
That national plan calls out black people as a priority population that needs to be addressed. It also calls out the regions of the country where we need to focus on the epidemic, the Northeast and the Southeast. These are also regions of the country where there are large populations of black people.
The National AIDS Strategy also calls out gay and bisexual men. Thirty percent of the new HIV/AIDS cases among gay and bisexual men are black. … Around 50 percent of the new HIV cases in this country are black. That means we need to focus on black people. …
We need to make sure that we take this opportunity that is provided to us by having now a National AIDS Strategy and major recent scientific breakthroughs, and we make the investment to save lives and to prevent new infections.
Now, who is going to make that investment?
… I think certainly our government needs to step up to the plate and find the dollars to make this happen, because finding those dollars, making that investment today, [is] going to save lives today. It is the right thing to do; it is the human thing to do; it is the compassionate thing to do.
But it is also going to save money down the road, because every infection we prevent, we save thousands upon thousands of dollars in treatment down the road. Our elected officials that are concerned about the budget, that are concerned about the deficit, the time to deal with those issues are now, because if we don’t act, those are going to be dollars we are going to have to spend down the road. …
The other thing that the president has done that is significant for people with HIV is health care reform. I don’t think that the AIDS community always understands — and I certainly don’t think that the black community understands — how important health care reform is for us.
So many people are not getting tested for HIV because they don’t have health care. They’re afraid they might find out they’re HIV-positive, and they don’t know how they would seek treatment. Health care reform is critically important. …
We are vulnerable [to not] being able to get health insurance because we have a pre-existing condition, and insurance companies can arbitrarily deny us insurance. The removal of the lifetime and the annual caps on health coverage is huge for HIV, because when you have a disease like AIDS, you can very rapidly reach your cap, and your insurance company can deny you coverage as a result of that. The ability for young people to be on their parents’ health coverage up to 26 is huge when we see the growing number of HIV among our youth. …
The removal of the travel ban — we have been one of those countries that have had our heads in the sand by limiting mobility and preventing people with HIV from coming into our country, when in fact we have been the largest exporter of HIV as opposed to importing of HIV. There is no reason to have an HIV travel ban. Again, it creates stigma; it breaks up family; it drives people underground. It was a bad policy, and it hurt our efforts to fight HIV.
The elimination of preventions on needle-exchange funding. Quite frankly, I think the ban on needle-exchange funding was criminal. There are people who are dead today, there are people who were murdered because of the ban on needle-exchange funding, because we know that the ability to exchange clean needles provides two things: [It] is a portal in which we get people into treatment, is a portal in which we can get people tested for HIV. It’s a portal that we can remove an HIV transmitter, the dirty needles, off the street, and it does not in any way raise illegal drug use in communities.
If anything, needle exchanges are a portal in which we can drive down illegal drug use because it can be a portal in which we get people into drug treatment as well. So we can get them into drug treatment, and we can get them into HIV treatment. We can be connected to their sexual network and identify not just the person who is exchanging needles but also be connected and develop a relationship with the network of people that they socialize with, that they’re sexually intimate with, and provide treatment for them.
Health care act, provision for abstinence-only education. What is your reaction? What’s your position on that?
… I think that it is a problem that we’re still investing in abstinence-only programs that not only are not effective, I believe they do harm, because I think that in a world where we’re talking about a disease like HIV and AIDS, we should be providing our children with every tool, every weapon that we can provide them to protect themselves.
I think that we should be talking about abstinence. Absolutely we should be talking about delayed gratification. We should be talking about the consequences of inappropriate or premature sexual activity. We should be talking about conversations with parents. We should be talking about proper condom usage. We should be talking about all of those things. We should talk about real issues around intimacy and what intimacy is all about.
But what we know now is that when you have a curriculum of abstinence only, the other thing that it does is it censors open dialogue; that young people are afraid to talk about the realities in their lives, and they don’t have the tools to negotiate safer sex. So should they decide that they want to be sexually active, … the price should not be death. …
The other problem that I have with abstinence-only programs is that we now know that when you provide young people with comprehensive sex education and comprehensive AIDS education, that in fact they delay their sexual debut. So not only does comprehensive AIDS education do a better job, it actually better addresses the need for those who believe in abstinence only.
… What is your feeling about the way ahead?
… We are already aggressively trying to move this National AIDS Strategy into operations. All the federal departments have already published operational plans. There’s an implementation plan. There’s the program out with money to 12 cities to do pilot programs on how they would implement the National HIV/AIDS Strategy.
So I think that the administration is trying to take this document and to make sure it does not sit on the shelf. Certainly the PACHA is focusing intensely … on how are we implementing the National AIDS Strategy.
But we continue to struggle with the issue around resources, and we need to find ways to have resources; otherwise it is going to be a plan that is not going to be as successful as it needs to be. …
… How are we going to end the AIDS epidemic?
We’ve been at this for 30 years. It’s time to have a serious conversation about ending the AIDS epidemic, and I think fortunately we’re at that place. We have the tools to end the AIDS epidemic if we act now.
I think there are a few things that we have to do in black America to bring about the end of the AIDS epidemic. Some of them are personal; some of them are policy level, some of them community level.
I think on a personal level, there’s something for every one of us to do. Sometimes we feel like it’s this overwhelming thing, and it’s not. You just have to do your part. That’s all you have to worry about. Do your part, and stop allowing this big problem to prevent you from doing your part.
On an individual level, we need to get informed. We need to break the denial; we need to get over the misinformation. Knowledge is a powerful tool in the war against HIV and AIDS, OK. We need to get tested. Knowing your HIV status is a right and a responsibility, and knowing your partner’s status can save your life.
We need to get treated. AIDS is no longer the automatic death sentence that it once was. I am the personification of that. I’ve been living with this disease now for 30 years. I’m alive today because I’m on treatment. The treatments are getting better every day. …
And it’s important to protect ourselves, and protection has never been easier. There are condoms. People say, “Well, condoms are not 100 percent effective.” This is a stupid argument. Seat belts are not 100 percent effective. Nothing is 100 percent effective, but you can reduce your risk. …
On a community [level], we are at a different place in the evolution of the epidemic. … We can diagnose the disease; we can find out where the disease is; we now have the knowledge to prevent transmission; we now have the knowledge to prevent acquisition. And with all of that we can end the AIDS epidemic. But it requires that we build a massive and appropriate response to the AIDS epidemic. …
Get informed, get tested, get treated, protect yourself and get involved. Those are the things that individuals can do. We are at a different place in the evolution of the epidemic, and we need to be talking about endgame. We need to be talking about how to end the AIDS epidemic, and the tools are in place.
I have a recurring dream, and in my dream is a little boy, and he’s asking a wise person: “What did you do during the war? What did you do when millions and millions of people were dying from the plague?” I always wake up before the wise person has a chance to answer, and I’m afraid I wake up because I’m afraid of the answer. I’m afraid the answer will be that we did not do enough.
Do you think that’s what will happen?
I pray that won’t happen. I pray that we will use this deciding moment to take action — because that’s where we are; we’re at a deciding moment — and we will choose to act to end the AIDS epidemic. We will choose as a tribute to all of our brothers and sisters who have died from AIDS and as a promise to our children and our grandchildren that they will not have to deal with this plague.
… Where’s the leadership [going to] come from?
… The AIDS epidemic is a story about leadership — sadly, most often failed leadership. There have been exceptions along the way, but most often failed leadership. In order for us to get to the endgame, we’re going to have to have strong leadership, and I think that’s the thing that’s special about AIDS, is that we look at the leader every single morning.
Every time you brush your teeth you’re looking at the leader; you’re looking at the quarterback; you’re looking at the person who’s going to end the AIDS epidemic. Every time you shave, every time you put on your makeup, you’re looking at the leader. And in black communities, just like AIDS looks like you and me, the people who are going to end the AIDS epidemic will look like you and me.
We need to stop waiting for certainly the great white hope. We need to stop waiting for the great governmental hope. We need to stop waiting for the great foundation hope. At the end of the day, we’re the ones we’ve been waiting for.
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