Robert Fullilove: Inside the “Two Worlds of AIDS” in America
July 10, 2012, 8:30 pm ET
Robert Fullilove is a professor of clinical sociomedical studies at Columbia University. He tells FRONTLINE that the fight against HIV/AIDS, particularly in the black community, has been made harder “because the majority of Americans no longer see HIV/AIDS as a problem.” The nation should care more, Fullilove says, “because you don’t want people cut down in the flower of youth by a debilitating condition that costs us so much money.” This is the edited transcript of an interview conducted on May 6, 2011.
[One thing we've uncovered is that the first five cases of HIV reported to the CDC (Centers for Disease Control and Prevention) were diagnosed in white gay males.] What we don’t know about is that cases 6, 7 and 8 were black people. … What’s your reaction?
Whether or not the first set of cases to be reported by the CDC that told us that we were in the beginning of the HIV/AIDS pandemic should have included mention of black patients is an interesting issue. Would that have changed our national consciousness?
I tend to believe that the answer is yes, but I can’t tell whether or not it would have been a good thing or a bad thing. At the point that we’re describing, 1981, it’s not as if we were on our way to the creation of Barack Obama. We were anything but.
It’s important to recall that [Ronald] Reagan began his campaign in Mississippi, basically harkening back to the days of segregation. His version of the war on drugs had a lot to do with the pummeling of this epidemic and really driving it in black communities.
Would this have added to the notion that in addition to being folk who were being characterized as drug users, we were also pariahs carrying a deadly virus? I don’t know. Or would it have awakened black leadership to say: “Oh, my goodness, there’s a plague in our midst. We need to mobilize. We need to do something important. We need to do something dramatic”?
Hard to say. My sense, because I was around in 1981, is that it really didn’t make a difference, that the cases were too few. The attention that was developed was really important for the mobilization of the gay community. I have a hard time believing it would have mobilized the black community in the same way. …
Why do you think it wouldn’t have made an impact?
I think that the first five years of the epidemic were years in which we were struggling to get the resources to fight what we knew was going to be a major problem. It was a time when we were trying our best to get national attention focused on the fact that there was something important in our midst.
I have to believe that the success of those early years came about because the gay community recognized that it needed to do something more than simply sit idly by. And because they had the resources, they were able to organize, to do something that I think was basically the foundation for whatever success we’ve had in creating a mobilization against HIV/AIDS.
I don’t think that the black community at that point in time was ready. I don’t think that it had the infrastructure. I don’t think that it had the capacity to move. There were so many other issues that were dogging black leaders at this time that I don’t think that five or six cases would have been enough for them to say, “Let’s drop everything and focus our attention on this new threat to our community.”
… It’s those years, ’80, ’81, the first few years of the “Reagan Revolution.” What was happening in the cities like Oakland, [Calif.]; Detroit; Birmingham, [Ala.]; Atlanta?
In the 1980s it’s important to recall that we were just getting into the second generation of widespread drug use and widespread drug dealing in poor communities of color. Heroin had been around in [New York City] for 10, maybe 15 years, and we were just beginning to see the early stages of the inner cities’ fascination with crack cocaine.
To the degree that many people who were caught up in drug use had also been exposed to HIV, that’s really the genesis of what is now the pandemic in the black community, the fact that large numbers of people were being exposed not just by their homosexual behavior but were also being exposed because they were sharing needles one with the other. And that needle sharing is probably more than anything else one of the major causes of the high rates of HIV that we see in the black community today.
Tell us about … that connection between drug use, whether it’s crack or IV drug use, and the spread of HIV.
… The war on drugs in the 1970s had as one of its impacts in the city of New York the driving of the use of heroin into shooting galleries. New York is a city that if you’re found with injection drug equipment and you don’t have a prescription — you’re not a diabetic who’s able to carry a syringe around — the possession of that syringe was essentially a felony. So it became clear to drug users back in the ’70s that if you’re going to walk around with your equipment, if you’re going to have a spike on you, you’re going to run a terrible risk.
Well, this is America. We’re good at capitalism. We’re good at making money based on the need of a potential consumer. So somebody said: “You know, you don’t really need to carry this stuff around with you. Why don’t you come into … my deserted building, and I will sell you the drug of your choice, and I’ll also rent you some equipment that you can use to shoot it up?”
Because a lot of folk were traveling in crews — one or two folks, maybe three or four, were engaged in a little petty thievery, a little breaking and entering, all in the service of getting the money together that would allow them to purchase their drugs — you’d show up in the gallery with your crew, with your posse, and you had money in hand ready to buy product.
Well, you had a choice. You could basically spend it all on the drug and maybe a needle for each of the persons who was with you, or maybe what you were going to do is just buy one needle, share the needle, and use the rest of the money to buy more product. It didn’t take much to imagine that with the sharing of needles, if you had just one person in a network of people who were sharing needles become infected with HIV, that virus is going to be passed to everybody.
My colleague Ron Wallace is also probably the first person to point out that because there was so much of this needle-sharing behavior in the South Bronx, when the South Bronx burned down between 1973 and 1980, it disrupted many of the social networks that were connected to those communities, because with no place to go, with your house no longer being there, many people would pick up their stakes, move to another neighborhood, form other needle-sharing networks. And it’s this breaking apart of the network and its reformulation again in another space that also added an enormous amount of efficiency to the way in which HIV was propagated. …
So are you saying that there was a degree of saturation, that HIV was in the community and spreading before anybody even noticed it in 1981?
I like to point out that in 1981, when we first had that Morbidity and Mortality Weekly Report published about five gay men who were suffering from Pneumocystis, that what we were looking at was the end stage of HIV disease. Recall that it’s a virus that takes many years to make itself known, that it’s latent, it’s asymptomatic, so that if you recognize that in 1981, when we’re seeing folks with an AIDS-defining condition, we were actually looking at a process that probably began seven, 10, maybe 15 years earlier.
It means that we have to rethink our notions about when the epidemic really began. And it does mean that for all intents and purposes, the real origins of the epidemic are in the late ’60s, not in the 1980s. The 1980s is simply when we became aware of the fact that it existed, that it was in our midst.
… During those years of incubation, what was happening in the community? If that’s when the use of IV drugs was increasing exponentially, what was going on?
I like to think about the ’70s as being an era when many different important social trends were being created. The gay community was finally coming out of its collective closet. It was clear that you could be openly gay; you could celebrate your difference. You would find folk who shared your desire to be free, to be out, to be open.
And at that moment, with the sudden emergence of gay life and gay sexuality, the moment where it became something that could be celebrated openly, where people could have lots and lots of partners and really rejoice in the fact that “Hey, at last we’re free,” the fact that this virus was already present in their midst meant that this moment of freedom was also going to be the moment of maximum exposure.
The other social trend is in the communities of color, where you’re starting to see large amounts of cocaine and heroin being introduced, [is] at a time when for all intents and purposes the jobs which had created the black migration from the first part of the 20th century were all drying up.
The period of post-industrialization that really characterized the 1970s meant that black communities that had basically been created in cities like Chicago and New York, created because there were new opportunities for jobs, were suddenly discovering that the jobs that made their migration from the South to the North possible were no longer there. And all of a sudden the drug guy, the dope man became the person who for all intents and purposes was the employer of first choice.
So with communities becoming increasingly poor, with high rates of unemployment, with ferocious housing segregation which maintained the ghetto, … all of a sudden you have a pattern of drug dealing and drug use that literally gets out of hand.
Once again, as was the case with the gay community, the fact that you had a sudden explosion in the number of people who were using and who were sharing their works, or who were engaged in sex work to support their drug habits, meant that you were creating all kinds of avenues for HIV, which was undoubtedly present in the community, to become an incredible, explosive epidemic of the type that we’re seeing today.
People have talked about that period in the early ’80s also as one in which there was tremendous trauma fatigue. Does that mean anything to you? Do you think there was?
I have not heard it described quite that way. But I do know that [in] the 1980s, … the momentum that had been gained in the 1960s shifts drastically.
We no longer have a major civil rights movement. … There’s less and less public acknowledgment, even in the black community, that we need to struggle against poverty, we need to struggle against racism, we need to struggle against the kind of domestic residential segregation that had characterized so much of the 20th century.
With large numbers of folks suddenly discovering that housing was opening up in suburbs that had previously been denied them, there was a sense in which the community was sort of moving forward. We were beginning as black folks to sort of dominate the sports scenes; all of a sudden you had basketball, football and baseball becoming a highly integrated domain. And you were for the first time starting to see black people on television as a regular feature, not simply as part of the news.
“People didn’t want to talk about it anymore because we were suddenly beginning what we thought was going to be a new age, a new era, and the traumas of the past were going to be forgotten.”
And there was a sense in which all of the struggles of the 1960s were being forgotten, and the trauma of the ’60s — the lynchings, the killings, the riots that characterized the long hot summers — yeah, that stuff was all behind us, and people didn’t want to talk about it anymore because we were suddenly beginning what we thought was going to be a new age, a new era, and the traumas of the past were going to be forgotten.
And when you raise them in community settings, people say: “Ah, man, aren’t we done with that? Isn’t that all behind us? Can’t we just, like, move on?” That shift made us unable to speak collectively about the threat that HIV was posing. …
We hear people talk about a leadership vacuum, but you’re talking about something more sophisticated. It’s not just a leadership vacuum if I hear you right. It’s also that the whole idea changed from, “We the people, we are engaged in a struggle,” to “There’s opportunity, and you go take it if you can.”
Remember the 1970s are when you start to see for the first time a real spike in the enrollment of black students in America’s colleges and universities, specifically the colleges and universities that had previously been segregated. Equal opportunity programs at the state level as well as at the national level were opening doors that had never existed before.
Large numbers of folk were finding their way into government employment. You had the beginnings of a solid black middle class that was literally a creation of the events of the 1960s. … They have access to the Westchester County, [N.Y.], homes in the suburbs that had previously been denied them, and when they left, they took not just their money, not just their economic clout. They also took that spirit that they maintained in the community that said, “We can make this; we can get jobs; we can do whatever it is we want to do.” …
… We’re at that moment where the drug laws shift. Can you tell us about the mandatory minimum?
… At the beginning of Richard Nixon’s reign, at the beginning of his real moment on the stage in the 1970s, he declares that drug use is public enemy number one in the U.S. In 1973, with the creation of the Drug Enforcement Administration, you suddenly see that our response to this problem is not going to be to recognize it as a challenge for public health; it’s going to be a criminal justice issue.
So we’re at this crisis point. We can recognize that drug abuse represents a public health challenge for which we should start to think about the mobilization of facilities to treat people who are dealing with this challenge, or we can do what was ultimately decided. We can declare this as a criminal justice issue; that this is a crime that’s being committed within the community that requires a massive police response and the massive incarceration of all the folk who are caught up in it. …
It’s important to understand that what this means is that we were making war on the very groups of individuals who were most likely to be exposed to HIV in the 1970s, and we were locking them up in facilities where there would be widespread drug use, where there would be a lot of sexual behavior, a lot of same-sex sex, and where, if you weren’t exposed to HIV in the community, there was a good chance you were going to be exposed in prison. …
If we’re right, and this period in the 1980s is when you first started seeing men who were infected with HIV finding their way to prison, then the fact that everybody is locked down in this tight set of facilities meant that you had an even more efficient engine for sowing the seeds of this epidemic in the population of folk who would ultimately return to the community, maybe for two or three years. Then they’d be part of the recidivism statistics where you had a 7-in-10 chance of going back to prison, creating this cycle that took you from the community to the prison, then back to the community again.
And with each return of somebody who’s been in prison and is now back in the community, there’s a chance that you would take up with a girlfriend or a wife, or maybe even with somebody that you met on the inside. And as a result of your multiple sexual contacts in the community — and maybe you’re getting back into using drugs — you expose more and more folk to this virus. …
I think it’s important to understand that … it’s not just a mechanism for exposing the men who are caught up in this. The chaos that gets created in the community has a lot to do with destabilizing much of community life.
I mean, think about it: There are many communities where on any given day, somewhere between 55 to 60 percent of all the young men between the ages of 19 and 29 are in jail, on probation or under the supervision of the courts. For all intents and purposes, they’re no longer in the community. What kind of damage does that do to the mating markets, to the marriage markets, where all of a sudden men just aren’t around?
It means that they’re not around to be parts of the families. So if they’ve fathered children, the children are going to have large periods of time when Dad is simply not there. It’s going to change the nature of the relationships that men have with women, because you might be married or you might be in some kind of stable relationship, and then you’re gone for five years. …
What happens then? Well, if there are more women then there are men, there are going to be changes in what happens in the competition for a man. Men who are sexually active aren’t necessarily going to be forced to use condoms, because after all, “Well, baby, if you don’t want to give me what I want, there’s always your girlfriend over here who’s made it real clear that she’ll do whatever in order to keep me around.” …
I think a lot of women decided that it was better to take the risk than to be safe. And although they wouldn’t necessarily describe it that way, the fact that you’re starting to see in the 1980s a real increase in the number of women who are infected with HIV because of heterosexual sex, not because of drug use, has to be because the whole nature of the dating game has changed in the community because so many men are gone. …
The other thing that was going on … was the church and the homophobia. …
In the 1960s, when I was deeply involved in the civil rights movement in the South, … the church became our most important ally. That’s where we had our Freedom Schools. That’s where we had the meetings where we convinced people that it really was the moment in history to challenge our being denied the right to vote, that registration campaigns could be mounted from the churches.
And the churches paid the price. Large numbers of them were firebombed. Many of them had gunshots fired into the walls. But they managed to persist; they managed to prevail. …
The problem with HIV/AIDS, when it became clear that this was yet another cause around which we were going to have to mobilize, was that it meant embracing homosexuality. …
I started thinking in the 1980s that now was the time for us to go back to the church to say, “We have a real struggle on our hands; we’re going to have to deal with the threat that HIV is posing.” I came up against the most incredible resistance imaginable, because we were going to have to talk about sex in all of its manifestations. And the black church has always been clear that it’s about families, it’s about babies, and it is not about same-sex relationships.
I think that this strain of conservative thinking goes back to the very origins of the church in the black community, that because it was so important for slaves to, for example, to be able to celebrate a marriage — that it meant that the children who were born of a union between men and women were going to find some sort of stable environment in which to be raised — that it became impossible to entertain any other version of sexual behavior other than that which was thought to be most highly represented in the Bible.
“The homophobia that’s present in the church became the biggest obstacle that we faced back then, and it continues to be the biggest obstacle that we face right now.”
So as soon as you recognized in the 1980s that to talk about AIDS was to talk about a condition that was uniquely associated with gay white men, it was to talk about mounting a challenge to the authority of the church to weigh in on matters of love, sex and family. And the homophobia that’s present in the church became the biggest obstacle that we faced back then, and it continues to be the biggest obstacle that we face right now. …
… Some have said it’s not the homophobia in the church, because that’s the same in black and white society. The difference is the importance of the church in the culture.
A lot of scholars have tried to understand the particular nature of homophobia as it’s expressed in the black church, and a lot of folk have pointed out that it has everything to do with the image of the black man, who in much of American popular culture is a hypersexual individual endowed with enormous sexual equipment, somebody who is capable of all kinds of inhuman feats of sexual behavior.
This notion that that image is also one that could include someone who is not interested in women but who is interested in other men means that, among other things, the most important thing that the church was trying to protect, the sanctity of family life where men and women get together to create the next generation, that was going to be threatened. That was going to come under all kinds of fire.
And the notion that it’s hard enough in the black community to keep couples together, it’s hard enough for families to do what’s necessary to raise a child, the notion that you were somehow going to embrace a lifestyle that had nothing to do with family, that had nothing to do with raising children, meant that you were going against one of the most fundamental principles upon which the black church was founded.
And it’s meant that to this day you cannot get many black preachers to do anything other than to sort of murmur, “It’s OK if you’re a homosexual.” It’s been a continuing problem, and a lot of pastors will take you aside and say: “You know, I can’t say this to my congregation. There are too many women out there that are doing their best to somehow maintain their families. The notion that somehow or other you’re embracing a lifestyle that could take the men out of their house and put them in places where they can’t be reached is just anathema. I understand what you’re trying to do, I understand the nature of the threat, but I can’t go there with you.”
What do you say to them?
I say, “Let’s understand that this is a threat that has very little to do with people’s fantasies about the black family,” because it becomes clear that you cannot protect the community by having segments of the community denied their right to exist. They are here. They’ve been with us. They’re a part of us. They’re our brothers; they’re our uncles; they’re our dads in many instances.
The notion that you can somehow excise them from the life of the community is a myth. Not only is it a myth, it is something that is inherently dangerous. … You’ve got to understand that if it’s the stigma that you are creating that keeps people from talking about sex, that keeps them from talking about HIV, that keeps them from taking the kinds of measures they know they have to take in order to protect themselves, you’re doing more harm than good. …
Tell me about “The Elephant in the Room.”
In the year 2000 I wrote a paper that described what I was beginning to see increasingly in the conversations I was having when I went to the black community — not to other scientists, not to people in public health, but when I went to the black community and said, “Let’s have a conversation about AIDS.”
One of the first questions I’d get once I’d given an impassioned talk about our need to mobilize and do something about this threat in our midst, invariably someone would stand up and say, “Doc, can you tell me where this epidemic came from?”‘
And what they were really asking is: “Aren’t you aware of the fact that this represents a conspiracy? This is really the man out to get us. This is just a new form of genocide that they’ve been practicing since we were dragged here from Africa.”
It became clear that it was really hard to have a conversation by pretending to the folk who were present in the room that this wasn’t an issue that was on their minds. It became clear that when you got people to talk about why they believed that to be so, much of what they presented was rather compelling evidence.
Here’s the notion that they would often present: Isn’t almost all the AIDS in the world in Africa? And you just finished telling us that there’s a lot of AIDS in the black community here. Well, weren’t we once part of Africa? Aren’t we part of that diaspora? And then I understand that if you go into the Caribbean, it’s the same problem there that we have here. And in Brazil, the largest nation on the planet of people of African descent, they’ve got a major problem with HIV/AIDS. Why is that happening if it wasn’t part of a plan, if it wasn’t part of a conspiracy to get rid of us, to wipe us off the face of the earth? …
And I think the obvious answer is yes, it could be part of a conspiracy, but we in medicine and public health don’t think that way. We would take a question like that, which seems to be founded on non-science, and we come back with the best of our science. We quote statistics; we describe the epidemiology of the epidemic; we’d point out how on some levels this was inevitable.
But because we were not responding to the question, we appeared to not only be ducking it, we gave the appearance of being part of the conspiracy ourselves. … It was the classic case in which there was just simply no way to win.
And in the article, what I pointed out was part of what we had to stop doing was pretending that this wasn’t a real question. Part of what we had to recognize is that there was enough evidence to make this part of what should be a real conversation, a real dialogue, a real discourse, about not only what were the origins of the disease but what we were going to do next. …
So you say to them what? …
My standard response has always been to say: “Brothers and sisters, let me just be real clear. I know exactly what you’re talking about. Not only that, I know who’s responsible for the conspiracy. It’s Bruce. Bruce is the guy who did this. He’s the guy who started all this. Now that you know who started it, can we now have a conversation about what we’re going to do now that it’s here? Now that it’s killing so many of our brothers and sisters, can we have a conversation about what we’re going to do next?,” because it’s too much a part of what happens in America that we treat this like a television mystery. We treat it as if we can simply name the culprit, as if we can simply find the guilty [party]. Once we identify them, we will have answered all the questions, when nothing could be further from the truth. …
Going back to the late ’80s, when women really became infected, the problem was … that women got infected with different cancers, and so they weren’t counted. Tell me that part of the history.
One of the key parts of the history of the epidemic in African Americans is the fact that we simply did not recognize that this was a tragedy that was affecting black women disproportionately. Since the beginning of our efforts to count who has HIV and who has AIDS, black women have all been hugely overrepresented in the numbers.
Much of it is a function of the fact that, as I suggested earlier, their exposure came about because large numbers of men who were caught up in the cycle of addiction were the ones who were also impregnating them and were also their sexual partners who, in an unprotected sexual encounter, were exposing them to the virus.
But the manifestation of HIV disease in women is fundamentally different than it is it men. … So in the early days of the epidemic, when women were routinely becoming infected, because many of the manifestations were vaginal manifestations, we simply didn’t understand that we were looking at the same disease process. And because we were looking at the same disease process, we had to be at least as vigorous in our effort to get heterosexual women to understand that they needed to protect themselves as was the case with men. And this failure to recognize it has had a dramatic impact on the manifestation of HIV in African American women. …
I think it’s fair to say that 64 percent, in the year 2009, of all cases of HIV disease in the U.S. are in African American women, partially, sad to say, a function of our neglect in the 1980s to really understand that we were going to be facing a problem that was hitting men and women equally and that efforts to prevent HIV infection in women lagged far behind what they did in men. …
In 1995 there’s this moment you could call a tipping point, when for the first time more people of color, more black Americans in particular, are diagnosed than whites. …
Two things I think have to be remembered about the 30-year period that we have been dealing with the crisis of HIV/AIDS. One is that in the late 1980s, the gay community in the United States was really aware that this was something that was going to require everything that they could muster in order to become a force mobilized to protect members of that community.
Organizations like the Gay Men’s Health Crisis sprang up. Activities and movements like STOP AIDS San Francisco would be community-organizing efforts where gay men really did what was necessary in order to alert members of the community that there was a crisis. …
The black community, however, did not have the same level of motivation, didn’t have the same level of mobilization, didn’t have the capacity to get together the resources necessary to mount effective campaigns of treatment or effective campaigns of prevention.
So, slowly but surely, from the beginning of the epidemic when African Americans were overrepresented among folks who were living with HIV disease, the numbers started to climb. In 1995, you suddenly passed the point when more than half of the new infections were being observed in the African American community.
And the driving factors were slightly different. While men who have sex with men was still the predominant mode of transmission, it was also clear that many years of dealing with drug abuse epidemics in our inner cities were also exposing large numbers of people to the virus.
And if you think about the amount of sex-related activity that was created with the crack cocaine epidemic, not surprising that in the years when crack was really a major issue in communities of color, crack-related sex work was also exposing people to this virus, which I believe was a major factor in kicking the epidemic into overdrive and making it a uniquely black and brown problem as opposed to simply a problem that was confronting the gay white community of the United States.
And sex work is also highly criminalized.
The most important thing about the crack cocaine epidemic is the degree to which it was marketed in black and in some Latin communities as an aphrodisiac. This is a drug that will enhance sexual pleasure. This is a drug that will make you forget all the cares and woes of everyday life, and it will help you forget because the nature of the sexual experience you’ll have will be just mind-blowing.
So what this meant is that many folks would take a hit of this new drug, this new smokable form of cocaine, and they’d be caught almost instantly — probably one of the most addictive substances we’ve ever encountered. So it wouldn’t take very much for large numbers of people who were exposed to crack cocaine to suddenly become addicted to it.
The classic cycle that we saw in the late ’80s and early ’90s is people starting out experimenting and then becoming more and more engaged in daily use, which quickly became almost hourly use, where in no time flat, folk would spend down whatever was in their wallets, would spend down whatever was in their savings account, would spend down whatever they could get with their credit cards and then ultimately would even go so far, if they had one, to put a house or a car for sale, simply to generate enough money to continue smoking rock and maintaining that incredibly powerful addiction.
When there was nothing left, women were told: “Well, baby, if you ain’t got no money, you’ve always got you. So how ’bout?” And then there would be a negotiation for a crack-for-sex exchange. In many instances this kind of sexual bargaining, this kind of crack-related sex work was carried out without there being any kind of protection taken. If you’re the demander, you get to call the tune, and if you say we’re going to have sex without a condom, that was what you were going to do, because the addiction was that powerful.
In the work that Mindy Fullilove and I started to do in the late 1980s, we were really impressed with how much this crack-related sex work was undoubtedly exposing people to a wide variety of sexually transmitted infections. And sure enough, in the late ’80s and early ’90s, you saw an explosion in many inner-city communities of syphilis and gonorrhea. And whenever you have those two sexually transmitted diseases flowing, in many instances HIV wasn’t far behind. …
This hit women in ways that it’s difficult to imagine, because the notion that you could maintain your addiction simply by engaging in this kind of sex work meant that in places like Central Harlem or in the Mott Haven district of the Bronx, you started to see what looked like these zombielike figures, often wandering around late at night and early in the morning, obviously trying to attract anybody who was interested to engage in some kind of furtive sex act just so they’d have enough money to pay for the next hit, the next round of rock. …
… I wonder if you could describe the two worlds [of AIDS] here in the U.S.
For me, the two worlds of AIDS that we see in the U.S. are uniquely a function of successful medical treatments. There are folks who have access to the best in the way of medications, the best in the way of health care, the best in the way of infectious disease physicians. Those are the folks who, while living with this virus, have a prognosis that means that they may live relatively normal lives — not completely, but relatively normal lives; that they may in fact die of something else other than a condition that’s related to their HIV/AIDS.
The other community, the other face of AIDS in the U.S., is that created by folk who either aren’t aware of their infection, or who are but for a variety of reasons simply aren’t able to get involved in treatment.
Now, in the rural South, you see this problem magnified in an incredibly complex set of ways. If you’re in a tiny community where maybe there’s only one medical facility, where maybe that medical facility has a special wing set up aside for folks who are living with HIV, to simply be in the vicinity of that facility means that a lot of folks in your community, a lot of your neighbors, your friends are going to say: “So, saw you downtown today. Saw you round that place. Got anything you want to tell me?”
In that kind of instance, if folks were afraid that not only would they be identified as somebody who was living with HIV, if it meant that all the stigma that’s attached to this condition would immediately cause them to lose friends, to lose connections within their family, to maybe even lose in some instances a job, the wise thing to do would be to stay as far away from treatment as possible. Even if you suspect that you’re infected, maybe you’d even stay away from an opportunity to be tested.
A lot of us who work in the South are very clear that that’s yet another factor that might be driving the epidemic in rural black America. The fact that we might have things that would help people live reasonably normal lives, but the nature of community life, the nature of the community dynamic, so much of the homophobia and HIV-related stigma that we see in these communities is also keeping people away from opportunities to find out about their status and to find a way to actually, actively have their conditions treated.
… How did you feel about PEPFAR [President's Emergency Plan for AIDS Relief]?
… I couldn’t imagine if there’s a greater tragedy than having a presidentially backed initiative — well funded, well staffed, well resourced — that was going to fight HIV/AIDS in Africa without having a similar kind of effort present here in the U.S., because at the time of President Bush’s ascension to power, we were already getting perilously close to 1 million cases, and at a million cases I think it’s fair to say we have a problem.
The idea that you would focus a significant portion of your time and energy on combating an epidemic thousands of miles away just seemed to me to be the height of madness, the height of folly.
And the notion that it would take the Obama administration to be the administration to say maybe the way we’ve approached the funding of PEPFAR in Africa should be the way that we approach funding for HIV/AIDS prevention and treatment in the United States as well; that we would take the same model, the same kind of top-down organized structure and we’d see if we couldn’t impose that here, to render our efforts to deal with the epidemic more efficient and to keep us from wasting money on a duplication of effort, great idea. But only half of that idea really found the kind of expression that this country really needed. …
You talk about Obama and the NAS [National AIDS Strategy]. What do you think about that?
The NAS was something I helped put together. … A large number of us were part of the thinking that went into sending recommendations to President Obama about what could be done to render our fight against HIV/AIDS more efficient and more cost-effective.
And what did we choose? We chose the PEPFAR model, saying that the kind of top-down administrative structure, the fact that every agency that’s involved in some aspect of either prevention or treatment is unique, it reports to everyone else but it does not have its efforts duplicated by other agencies, by other organizations, and because it’s all reporting to one central figure, because there is one coordinating office, not only are you going to have economies of scale, you’re going to have the kinds of efficiency that we’ve often lacked in our battles against HIV in this country. …
Just to react to something one of my interviewees said, she said, “If I see another pretty piece of paper, I’m going to explode.”
A lot of people are very frustrated with the fact that here we are in the 30th year, and the NAS for many is way too little, way too late.
I think, at least from my point of view, having started at a time when you couldn’t even get the president to say the word “AIDS,” the idea that we’re now trying to fashion a plan that would provide us with a much more efficient management of the resources we’re using to fight this epidemic seems to me to be critically important. So I’m nowhere near as critical as many of my colleagues are.
But I understand the nature of their frustration, and I understand why they’re just fed up. … In this country, so many people have to also basically weigh in and say yes, we agree with this, that we are drowning each other in briefings, in reports, in white papers, you name it. And the fact that all of this information, all of this effort doesn’t appear to move us any closer to the development of a really truly efficient national strategy is what makes so many people upset. …
Let me go to Anacostia, to Washington, D.C. Help me describe for our audience, what are we looking at there? …
… Washington, D.C., is a Southern city that has a majority black population, largely because that’s where the slaves owned by many members of Congress were going to be housed and where the servants of many of the Northern members of the Congress were also going to be housed as well. …
Fast-forward to the present day, and suddenly you’ve got a city which is predominantly black that has one of the most ferocious epidemics not just anywhere in this country, but anywhere in the world. … Five to 8 percent of the adult population is thought to be infected.
The fact that Washington doesn’t have the kind of sovereignty that either a state or a municipality within a state often has has meant that there have been tremendous inefficiencies on the part of government officials in that community to fight what has been an ever-growing problem. …
… Because you cannot get the city of Washington to have the same rights and privileges as any state in the U.S., it is often thought of and often referred to by the folk who live there as the “redheaded stepchild” of the United States — a community that’s unable to call the shots, unable to completely control its destiny and suffering as a consequence with, among other things, a ferocious epidemic that for all intents and purposes is really out of control.
How does syringe exchange help prevent HIV? …
… If each IV drug user used his or her needle and then threw it away, even if that person was infected with HIV, at least there would be no HIV transmission that occurs because needles have been shared.
This principle has meant that if you could somehow convince addicts, other people who are shooting drugs, to give you a dirty needle instead of having them share it with another individual, you’d do an enormous amount to lower the risk that’s associated with HIV and HIV transmission. …
Needle-exchange programs since the very beginning of the epidemic have been demonstrated to have a dramatic effect on HIV seroprevalence rates in the communities where these programs are operating. … The evidence is clear: It reduces HIV infection without creating a whole new wave of new users.
And if you think about it, it’s kind of ludicrous. What people who are against needle exchange are saying is the simple presence of a hypodermic in the community is going to cause a lot of people to say, “Oh, my God, here’s a clean syringe; let’s go find some heroin so that we can shoot it up.” The reason that this doesn’t happen is precisely why my example is so ridiculous. It just is not the way addiction works.
So the fact that routinely the Congress, the fact that routinely state legislative bodies, the fact that routinely even presidents of the United States — and I include Bill Clinton in this — have said, “Sorry, cannot pass a bill that would allow us to provide federal dollars for needle-exchange programs,” has meant that an epidemic that many European countries have controlled by limiting the access that needle users have to the kinds of risk conditions that would promote the epidemic, the fact that they’ve made clean syringes available to them has meant that their epidemics have been pretty well managed, and ours remains pretty much out of control. …
Obama lifted the federal ban, but now the states have control.
Now the states have control, right. … One state doesn’t necessarily have the same form of government or the same form of government management that another state has — different laws, different principles, different ways of dealing with, for example, violations of the law.
Those differences are what make us unique, but they also pose an enormous amount of problems. For those of us who would like to have a national needle-exchange program, you basically have to slug it out in each state and in some instances in each municipality, because the laws that govern community A aren’t necessarily the laws that are going to govern community B. …
… I wanted to talk about teenagers and education, abstinence education. … I wanted to know what you think about abstinence and abstinence only.
Abstinence education for young people makes sense if — and this is an important “if” — it’s clear that you are providing them with the maximum amount of information about sex, sexuality and, among other things, sexually transmitted infections.
In too many instances, abstinence-only programs don’t tell young people about condoms, don’t tell them about birth control. They’re so afraid that to have conversations about these things will encourage folks to become sexual that they just won’t even mention it. And because they’re not mentioned, the information kids need to have in order to keep themselves safe really isn’t present.
So what do we see in many of these programs? Not only do they not work, in many instances, when kids do become sexually active, they do so in a way that is inherently unhealthy because they haven’t been taught, they haven’t been exposed to, they haven’t been given the necessary information that would allow them to protect themselves.
Should we be teaching kids to delay the onset of sexual behavior? Of course we should. It’s a huge responsibility, and it requires that folk be mature. But we should also be realistic and understand that in many communities, 60 percent of all juniors in high school have already had some kind of sexual encounter.
If this is in fact the case, we shouldn’t let our values, the ones that really promote the positive benefits of being abstinent, blind us to the public health responsibility we have to teach kids about all aspects of sexuality, but specifically those that allow those who start to experiment with sexual behavior to protect themselves from, among other things, HIV/AIDS.
… People have said that this is just a case of lack of leadership.
I am one of those who believes that we would have had a very different outcome in the black community with the HIV/AIDS epidemic if our community leaders embraced this as something that required their full attention and their best efforts to keep members of the community safe.
Now, in their defense, it’s very clear that if you’re a black leader, there are a bunch of things that your constituents are asking you to do. They’re asking you to think about education, because too many of our kids are just falling through the cracks educationally.
There’s a housing famine in this country, and it really hits poor people squarely in the snoot. Without enough housing, people are spending way too much of their income on just keeping a roof over their heads, and they’re not able to invest in themselves or in their families.
Employment has always been a major issue in the black community. Our unemployment rates in some communities are double what they are among whites. I could go on.
There are a list, a litany if you will, of problems that people in the black community face, and not surprisingly, black folks want their leaders to do something about them. So when you show up in the mid-80s as I did, as Mindy Fullilove did, saying, “Excuse me, you now need to add AIDS to the list,” … they said: “Where am I going to put it? I’m already doing all this stuff, and I’m not being very effective in any of my efforts. I’m not improving the quality of housing; I’m just talking about it. I haven’t done anything to improve the high rates of unemployment. I haven’t done anything to improve the quality of education that kids in this community are getting. And now you’re asking me to add yet another thing to my list of things to do, when I’m already not doing as well as I’d like to with the things that are already present on this list?”
We can understand why a lot of folk said, “OK, you’re right, it’s a problem, but I can’t pay any attention to it.” The issue, sadly, is that they may have not decided that it was worth their time and energy or effort. But over the last 30 years, the failure to put this on the list has meant that it has slowly but surely climbed to the top of the list, with HIV/AIDS-related deaths being the number three killer of African American women and the number four killer of African American men between the ages of 20 and 44.
“Our failure to take up the mantle and provide leadership when the community really needed it is something that we’re paying for to this day.”
Our failure to take up the mantle and provide leadership when the community really needed it is something that we’re paying for to this day.
… Why is it still so bad?
The question why is AIDS still so bad in America in general and in the black community in particular has everything to do with the fact that it simply lasted too long. … It’s gone underground. The majority of Americans no longer see HIV/AIDS as a problem.
It’s been with us so long, it’s like part of the wallpaper. It’s part of the backdrop of life in this country, and we are not paying attention because we have come to the belief that since it hasn’t killed us yet, it’s probably not going to.
In the very beginning of the epidemic, I think many of us in the public health community were guilty of crying wolf. We kept saying, “Oh, my God, AIDS is coming, AIDS is coming; it’s going to eventually overtake and swamp the system of health care that we have in this country because so many people are going to be impacted.”
OK, that was in the 1980s. Here it is 2011. Although we’ve got all kinds of problems, the system has not collapsed, the vast majority of Americans are not infected with HIV, and the vast majority of them are probably not even going to be exposed to it.
So the question why should we worry about this, why is this something that we should be concerned with becomes even more relevant. The fact that we need to be concerned, the fact that we absolutely have to be involved, is for many people somewhat of an abstraction: “If it’s not infecting me or members of my family, show me why I should care.”
And because after 30 years, many people walk around and look at their friendship circles, look at their social circles, they look at their families and they see no trace of HIV, and it’s led them to believe as a consequence that it’s really not a problem. It’s only folk like me, screaming at a camera or screaming at an audience, saying, “Hey, this is something we all have to be involved with.” …
But why should we care? What do you say to people?
It’s real clear that years of life lost represented by this epidemic, it’s off the charts. I remember the Journal of the American Medical Association a couple of years ago had a cover of one of its issues that was completely dark, and it was intended to represent the world without art, the world without art that was missing because so many artists, so many musicians, so many folk who contribute to making the world beautiful were dead as a result of this epidemic. Why should we care? Because you don’t want people cut down in the flower of youth by a debilitating condition that costs us so much money.
I’ve often said that we ought to care about it simply because it’s such an expensive epidemic for us to maintain, that with costs in 2011 circling around $2,100 a month for each indigent individual who has to have access to drugs that come about, for example the AIDS Drug Assistance Program [ADAP], with those kinds of costs and with 56,000 new cases every year, it doesn’t take much of a mathematician to see that we can’t continue to operate with more and more new cases and expect to be able to pay for the care that’s going to be provided. …
… What’s the way ahead? …
… I think we have to take HIV out of the specialized realm that it has existed in the past and make it part of a broad effort to improve the health of the general public. States like New York make it clear that when you come for a physical examination, your clinician has to ask you, “Have you had an HIV test?” And if you haven’t had one recently, the question should be posed, “Can I give you an HIV test now?”
That would mean that we would identify large numbers of people who right now are unaware that they’re infected. The estimate is that maybe 20 percent of all the people who are living with HIV are unaware of their status. …
And if we saw this as part of a pattern of chronic diseases that slowly but surely is impacting on the health of all Americans, if we didn’t make it special, if we made it something that everybody has to be aware of in terms of their own lives, in terms of their own behavior but also has to be aware of it as part of a set of health conditions that as a nation we need to do our best to prevent, maybe, just maybe, broad bipartisan support would be possible. …
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