AIDS

AIDS: The black plague

Jacob Levenson talks about his new book, "The Secret Epidemic," which reveals a truth America has refused to confront.

  • more
    • All Share Services

From the beginning of the epidemic in the early 1980s, AIDS in America has been just as devastating a force in the black community as among gay men, if not more so. By 1986, a quarter of all people with AIDS in the United States were black. Even more ominously, a whopping 57 percent of all infected children were black; the disease was striking at the very roots of the community, burrowing its way deep inside. Ten years later, 54 percent of all new cases were black. And the situation hasn’t improved much. Last year, 20,000 of the total 40,000 new AIDS cases in the United States were among African-Americans — though blacks make up only 13 percent of the U.S. population.

This phenomenon is reasonably well-known to public health professionals and those who have followed the epidemic closely. But with all these black people dying of AIDS in America — and with the world’s attention increasingly focused on the disastrous spread of the epidemic in sub-Saharan Africa — why is the American public at large so unaware of the depth of the problem? Why aren’t movies being made, actors making speeches, singers holding benefit concerts? Jacob Levenson’s new book, “The Secret Epidemic: The Story of AIDS and Black America,” takes an important first step, documenting the history of the disease in the black community in a comprehensive and accessible way. Perhaps more important, it also dissects the nature of the silence that has hung over the black AIDS epidemic like a shroud.

This silence — within the media, the government, the medical establishment and the black community itself — has allowed the disease to fester among blacks, even as gay America has, to some extent, managed to contain it.

In trying to understand and expose the causes of this seemingly self-imposed ignorance, Levenson goes far beyond the story of a virus. Ultimately, this is not merely a book about AIDS. The people in this story don’t grapple just with the effects of the disease, the families it destroys, and the death it wreaks, but with all its implications. Over and over again, the book’s characters — scientists, political activists, mothers, fathers, children, victims — ask the question: Why?

Why does Rebecca Jackson, a young girl in rural Alabama, refuse to take her medicine, fail to show up at doctor’s appointments, even as AIDS steadily ravages her body? Why does her boyfriend refuse to be tested, even though they continue to have sex with each other?

Why does Dr. Mindy Fullilove, an AIDS advocate trained at Columbia University, encounter so much resistance from the medical and research establishment, as well as from the black community itself, to funding the only kinds of studies and outreach that can help her and other scientists treat the spread of this disease? Why have the neighborhoods where she and her generation of black Americans grew up deteriorated beyond recognition? Why are so many girls prostituting themselves for drugs — and so many boys who treat them as sexual property? How could things get so bad so quickly, so soon after the 1960s offered so much hope?

The search for answers to these human questions drives “The Secret Epidemic.” Through the stories of these characters — told delicately and yet powerfully, with a mastery of language, imagery and pacing surpassing that of many novels, let alone works of nonfiction — we engage much more profoundly with the issues that shape this epidemic than we ever could with a simple policy book.

The “secret” epidemic of the title is more than a disease — it’s an epidemic of crack cocaine and heroin, urban decay and disintegration, human and sexual depravity and, in the end, total hopelessness. Mostly, it’s an epidemic of failed communication, the failure of all involved parties — politicians, activists, clergy and average citizens, black and white — to articulate these problems in a way that, yes, goes beyond racism, but also goes beyond the stultifying language of political correctness and cultural relativism.

AIDS, Levenson argues, is simply the culmination of all these social diseases, the result of the cultural walls that exist between black and white America, walls that have only grown higher, thicker and stronger since the civil rights movement of the 1960s.

Levenson himself, as you may have guessed, is not black. While it’s not unheard of for a white author to write a probing analysis of black American sociology — Nicholas Lemann attempted this with “The Promised Land” and mostly succeeded — the taboo against open communication about race is so strong in this country that for Levenson to presume to write such a book seems like an affront to our sensibilities about the meaning of “black” and “white.” How dare he believe that he can understand what black people go through?

By telling the story through the eyes of those enmeshed in the struggle, Levenson avoids the patronizing tone that can invade the writings of an outsider about a sensitive topic. What’s more, by refusing to back down from addressing the most sensitive issues facing black America — AIDS, drug addiction, the hypocrisy of religious leaders, the decay of urban life — Levenson’s book begins to create the very language necessary to effect a meaningful change in how the races understand each other, and themselves. The kind of change that can give birth to the same level of public engagement that helped slow the spread of AIDS in the gay community. The kind of change that can provide the only real solution to the black AIDS epidemic, and to so many of our society’s other ills.

If “The Secret Epidemic” has a flaw, it is perhaps that it doesn’t feature Levenson prominently enough. He addresses his experience in writing the book briefly in the epilogue, but it would have been nice to see his perspective articulated directly elsewhere as well. Not because his personal story even approaches the drama of the lives presented in the book — his role in the black AIDS epidemic is peripheral — but because his position as an outsider straining to gain insight into a community that isn’t his own epitomizes the book’s central conflict.

Levenson spoke to Salon about the challenge of writing this book from an outsider’s vantage point and about the steps that the nation needs to take to address this crisis honestly.

There have been so many movies, programs and articles written about AIDS in America, and we’re starting to hear more about the horrible crisis in Africa. Yet there’s little sense that America is growing more aware of the AIDS epidemic among African-Americans. Why?

This is part of the weakness of the media. There was an explosion of stories about this from 1998 to 1999 or 2000, because the Congressional Black Caucus [made it an issue], with this framework that said, “Well, the epidemic has shifted to blacks from gays” — when it hadn’t really shifted, because it’s been disproportionately black from the beginning. But if you’re a newspaper, how do you capture this today? It’s not breaking news, so it’s not an easy thing to write about in the papers.

Then there’s this other issue. My sense is that a lot of the really great journalism and films made about AIDS and gay America were so riveting, and that, for all the suffering that gay America endured, they really advanced the issue of gay life and gay culture and rights. AIDS blew our assumptions about them out of the water and really brought them into the mainstream.

Part of the reason that happened was because gay men, and certainly gay men living with AIDS, wrote these books and wrote these plays. And in some ways, we expect these communities — in the culturally sensitive world we live in — to tell their stories, and then we can embrace them. The “other” is not supposed to come in and do the piece.

That worked in the gay community, but when you deal with communities that were literally falling apart, and an epidemic that was hitting people who weren’t necessarily educated, and throw on top of that the idea of all the shame and secrecy, we didn’t see the wealth of journalism and memoir and art come out of this epidemic in black America. Once you have that wealth of art, it gives the media traction to engage.

That said, it has been a failure of the media not to take some responsibility. It’s constantly amazing to me while I was writing that there was so much incredible material and no one has written this book. It’s almost absurd. Early on, I was this 25-year-old kid who stumbled into this almost by accident, 18 years into the epidemic, and to have numbers in front of you that say that over 100,000 black people have died of AIDS, it’s phenomenal that this book hasn’t been written six times over.

What kind of response has your book gotten from black readers?

The response I’ve gotten so far has been really great. The black people who’ve read the book have seemed really engaged by it. The people who read it felt very connected to the characters, and that I captured something about the experience, which to me was really gratifying.

The white people– [Laughs.] The response I’ve consistently gotten is, “Wow, I never would’ve thought I would’ve wanted to read this. Who wants to read another AIDS book?” Which is really honest. The truth is, I wouldn’t have wanted to read an AIDS book. I consider myself someone who has a public consciousness and is interested in public health and knew about AIDS, but quite frankly, I felt like I’d heard about AIDS and didn’t want to read another book about suffering and dying. The outcome seemed predictable.

But then reporting the book, I started out asking really basic questions, and I found that AIDS put the 25-year history of race and the lived experience of race into a really dramatic relief. I had this pastiche of fragments and moments and memories that were so powerful. That kind of unvarnished window into their experience was exciting and gripping for me, and I found that the white people who’ve read the book have really been drawn into that.

How did you get interested in the subject in the first place?

I was studying at the Columbia Journalism School and, through that, covering an education story in Harlem. A member of the PTA came up and said, “You want a real story, talk to all the kids whose parents are dying of AIDS.” My response was, “Wow– huh?”

Then I started to report it a little bit, and what I found was that AIDS has been disproportionately black since the moment the epidemic began. That was another “wow” moment. We’re 18 years into the AIDS epidemic, there have been thousands of stories written, plays, books, movies, and I haven’t really heard this. What happened here?

Then as I reported more, I realized that AIDS intersected with crack cocaine, heroin, the black church, the legacy of the civil rights movement, the American South, the Congressional Black Caucus, and the crumbling of Harlem and Oakland [Calif.]. These were things I had always been really confused by, interested in, but always had a hard time wrapping my mind around.

I had been dissatisfied with the culture of racial debate in this country — it felt very stilted and cautious. Too often it was either always peering backwards at the civil rights movement and these heroic figures and how we overcame 200 years of institutionalized racism, or else painting people in terms of their victimhood, or else, more often — with most of us, myself included — there was this sense of caution. As a white person I’m really not supposed to be thinking about or being critical of black people, or really engaging them in any kind of serious debate. And if I do, it’s a fairly dangerous road to traverse.

I’m about as white as they come. I’m glow-in-the-dark. And this question dogged me the whole way through: Why are you doing this? Why have you been interested in this subject? Have you been touched by this? Do you have a black friend?

But working on the book not only empowered me to engage with the black community in a way that felt honest and way freer than I ever felt before, it made me feel more comfortable talking to my white well-meaning, liberal friends about race in this open way, which for so long has felt really stilted and uncomfortable. What I found was that more than black people, white people were nervous about me writing this book. You know, “What are you getting at? What are you trying to say?” My agent said, “White people don’t get book contracts to write about blacks.”

How did you get the subjects of your book to trust you enough to really open up? And how did you find your own attitudes about race changing?

Even now I’m doing these readings and I’m on the radio and I’m talking about subjects like the black church, black sexuality, and the social breakdown of the black community, and I’m thinking, “My God, am I killing my career? Am I going to be crucified?”

I didn’t really know my head from my feet when I got into this topic. It was this huge, complicated thing that I couldn’t get my mind around. But I made two decisions. One was, I’m never going to even try to sound faintly black. I’m not going to try to ingratiate myself that way. But I’m also not going to censor myself. I’m not going to try to over-empathize and say, “I don’t know, I can’t imagine where you’re coming from, please just tell me.” I decided that in my interviews, I was going to ask whatever questions came to mind, no matter how critical or potentially explosive or racially sensitive they were. Bearing in mind that I would communicate them in sensitive, respectful ways.

About a year into my research, I was sitting with Bob Fullilove [one of the book's central characters], and he said, “Jacob, you don’t know this, but you’ve crossed the boundary, you speak the language, you talk like a black person.” And I was like, “Huh?” I sounded about as white as they come.

What we talked about was the fact that so often when black people talk to white people, they experience the white people being so overly cautious and running over what they’re thinking before they say, and self-censoring themselves. He agreed that being on the black end of that was very patronizing and not very trustworthy. When you speak to someone who’s holding back, it’s kind of unnerving — you feel like they’re privately judging you. From my end, as a white person, why would I ever want to be in a relationship with someone I really can’t say anything of substance to? By engaging in that way, what I got was serious engagement back.

Was there a difference in talking to someone like Bob, a professor, versus talking to someone like Sarah [another character], who has little experience dealing with whites?

In a way, not so much. That was something I had to overcome. Obviously me and Bob, you know — we’ve gone to the same schools, and he’s taught at some of my schools, so we’re speaking the same kind of economic and emotional language in some ways. But what I found was, with Sara or Desiree or other people I interviewed, when I assumed a level of emotional complexity with their experience, what I got was extremely sophisticated and powerful emotional material.

At the same time, for instance with Desiree, she’s coming out of this church world, and this life in Oakland that was totally different from mine — the fact that I engaged like that didn’t mean I was always right. In fact, you’re wrong a lot of the time. I don’t want to give the idea that I presumed all this insight and what I got was constant affirmation. But I was willing to be wrong, saying, “I don’t understand. You say the fact you were raped wasn’t a big deal, but explain to me why you didn’t react differently,” instead of just accepting her answers and saying, “Well, of course, she’s just so different than me. I just have to accept it and write it that way.” What I invited were serious answers. And what I got was insight.

How do you think this book would be different written by a black author?

I really would hesitate to presume how it would have been written by someone in the black community. What Mindy [Fullilove] told me from the beginning was, “I am saddled with a segregation consciousness. There are things I can’t see freshly.”

She said to me, “You’re going to be able to see this; you’re not saddled with so much stuff.” And that allowed me to in some ways engage very deeply but also keep some emotional distance. I didn’t carry the burden of the race on my shoulders. I’m not saying that every black person necessarily would have, and I definitely wouldn’t say that my perspective is better — it’s just different.

Yet any time an outsider writes about another community, you risk being patronizing. Did you encounter that problem?

I certainly think I’m up against that. I think that is going to set off alarms with people; it has all the way through. I think when people see my face and my name, some people are simply not going to read the book because of that. A friend of mine, when the book was being shopped, just by coincidence was living with an editor. She saw the book proposal on the table, and this editor was black, and she said, “This white boy is not going to be writing this book for me.”

You are going to get that. But what I’ve heard from black people — and this isn’t a scientific sample — is that there’s nothing patronizing in this book, nothing stereotypical. For me, I would’ve been bored out of my mind writing a book that was patronizing — which for me means reducing people to either to victimhood or elevating them to heroism, or simply reducing their story to one of AIDS and disease and suffering without painting them in some kind of complexity and really investigating them. To me, that investigation means respect.

One of the things I feel strongly about is that we need in this country to start engaging in serious and substantive ways with each other — blacks and whites and members of all groups. When we disengage, that’s when a huge segment of American society suddenly becomes invisible. Things like AIDS come out of that, things like crack cocaine and violence come out of that.

The chronology of the book ends in 2002. Since then, has the state of the epidemic improved?

It doesn’t seem to be so. The CDC has been estimating pretty consistently for the last few years that 40,000 people are getting infected annually, and pretty consistently the proportion that’s black has been increasing. I certainly think there have been major inroads made with heroin and needle-exchange programs in various communities. The amount of money, generally, that the Congressional Black Caucus has won for communities of color and AIDS has grown. And there are people on the ground who are doing incredible work and doing work to mobilize black America.

But what I’m more struck by is that after that initial burst of interest, the issue then faded from the public consciousness. It really doesn’t seem to be considered a national problem, but a problem for black America and black Americans to deal with, not something that you or I should be concerned about: We should feel bad, but it’s not our job to engage or think about it seriously.

But AIDS is really just the tip of this far more complex and rich iceberg. In some way AIDS is a dramatic symptom of a whole series of other forces that we’re not dealing with as a society. In that sense, AIDS has tremendous potential to open up discussion and conversation, in ways that will be painful but also exciting and freeing. AIDS doesn’t just intersect these issues, it crystallizes them. To see it just disappear from the consciousness is troubling. It feels not only like a public health tragedy but a missed opportunity.

People try to alert the country by saying the disease is threatening to break out of black America and it’s just a matter of time. But it’s really that the issues that intersect with the epidemic absolutely have broken out of black America. The story becomes about society as whole, a window into all these different problems and conditions that affect us all.

Christopher Farah is an editorial fellow at Salon.

AIDS: Why Africa suffers for the West’s sins

Craig Timberg talks about the colonial origins of AIDS and the legacy of distrust between Africa and the West

  • more
    • All Share Services

AIDS: Why Africa suffers for the West’s sins

As a lens to explore the complex and deeply fraught relationship between Africa and the West, the AIDS epidemic is as revealing and disturbing as it gets. Born in colonial Africa and discovered in gay America, the devastating rise of AIDS has been fueled in no small part by the clash of cultures that played out over the past 130 years or so between Africa, Europe and the U.S. — and the rivers of resentment those conflicts have sown.

“Tinderbox,” an insightful new book from a journalist and an AIDS researcher, tells the story of the epidemic from its birth in colonial Congo — where it lingered undetected for decades — to its sudden spread around the globe in the 1980s, to its status today as the object of a global public health war directed from Washington and Geneva and targeting Africa, home to some 70 percent of all AIDS cases today.

Narrating this disturbing tale are Craig Timberg, former South Africa bureau chief for the Washington Post, and Daniel Halperin, an epidemiologist, AIDS researcher and former advisor to the U.S. government’s anti-AIDS program. Timberg met Halperin in the middle of his five-year stint as the Post’s Johannesburg bureau chief and the two began exploring questions that had bothered Timberg since his arrival in South Africa.

Timberg, now back in Washington as the Post’s deputy national security editor, spoke with Salon about the book.

Perceptions about the origins and spread of AIDS have changed over time in fascinating ways. First, it was seen as a gay disease. When it was detected in Africa, people assumed it came from the West. Over time, scientists showed it originated in Africa, a notion rejected by many Africans but in keeping with Western notions about third-world diseases. You show in the book that AIDS arose as a result of sweeping changes in social structure brought to Africa by European colonialism. Describe its origins.

Scientists have known for more than a decade that the version of HIV that has caused almost all cases of AIDS is virtually identical to a virus common in central African chimpanzees. That’s not controversial. The location of the transmission was determined by a group of scientists who narrowed it down to chimpanzees living in southeastern Cameroon by collecting their feces, detecting the virus and comparing it to other strains collected elsewhere. Michael Worobey from the University of Arizona and his team mapped the genetic structure of pieces of HIV from all over the world, looking at the extent of mutations between them. They were able to make assumptions about how many years it would have taken to produce these changes. The time frame puts you close to the turn of the 20th century for the original virus, the ancestor to all modern HIV.

How was the spread of AIDS to humans linked to colonialism?

In southeastern Cameroon, at the exact moment scientists now believe HIV entered the human population, you had steamships going up rivers that never had steamships before. You have porters who are virtually human pack animals carrying ivory or gear for colonial companies through dense forests. One of those porters would have been the first human to contract HIV. It looks like HIV goes from the chimp population into a hunter who cuts himself while butchering a chimpanzee for food. It then spreads in a localized way along these porter paths and colonial trading posts and eventually comes down river on a steamship into Kinshasa, then called Leopoldville, the first major city in that part of the world.

And that leads to what you call the Big Bang – when HIV explodes and moves out of the Congo.

That’s right. A single spark emanating from southeastern Cameroon works its way to colonial Leopoldville. But HIV doesn’t spread fast on its own. It needs particular conditions to race through a population and Leopoldville had them. It was big and growing fast. It had a high concentration of men working in factories, separated from their wives and girlfriends. It had an emerging population of sex workers and transport to get people back and forth. Gonorrhea, syphilis, chlamydia spread like wildfire; HIV doesn’t but starts to spread along railroad lines, porter paths and rivers during the early and middle part of the 20th century. When scientists look at the genetic structures of different types of HIV they all seem to have come from a single piece of ancestral HIV that existed in Leopoldville at the beginning of the 20th century.

So HIV lingered in small numbers of people but doesn’t exit this area. When researchers go back to blood samples collected during the 1976 outbreak of Ebola virus, they find HIV.

Yes, so in the middle part of the 20th century about 1 percent of adults in major population centers of the Congo had HIV. Before they died, they developed symptoms of other familiar maladies—pneumonia, tuberculosis, wasting. It wasn’t obvious there was a new epidemic loose in the land until gay men in the United States started getting sick in the early 1980s. Before that, it didn’t spread far and it didn’t spread fast. The reason seems to be that in colonial Congo, the majority of adult men would have been circumcised and circumcised men are much less likely to contract HIV and pass it on. It’s only when HIV makes its way out of the Congo River basin to other places more hospitable to its spread that we get a true explosion.

Many people assume AIDS must be a disease of poverty. But you argue that wealth, modern transportation and economic development were key factors that allowed AIDS to break out.

When I first went to Africa as a correspondent in 2004, I carried this question with me: Why is HIV so severe in some places and not in others? Logic said: Africa, poverty, poor medical systems — there had to be a connection. But when I started traveling to different countries I discovered that most truly outrageous hellholes — places with warfare and incredible poverty — didn’t have much HIV. Other places with modern transport and sophisticated economies had a lot. When I met my co-author, Daniel Halperin, it began to come together. I saw that while being poor and having HIV is certainly a very bad thing because you’re more likely to die when you can’t afford medicine, some degree of economic activity actually makes you more vulnerable. When the epidemic starts spreading widely in some African societies it’s in the cities. Wealthier people — doctors, teachers, politicians, singers — get HIV in completely disastrous numbers. Some of that has to do with access to resources and multiple sexual partners.

You begin with a chapter on the city of Francistown, Botswana, an affluent place with a horrendous HIV rate. What struck you about Francistown?

I drove to Francistown for the first time in 2006 and it felt like driving into anywhere, USA. I could buy a hamburger at Wimpy’s, order a shot of espresso. There were cafes and ATMs. Yet it had this horrendous HIV rate. Among women in their 30s, two-thirds were infected. The picture of poverty before HIV didn’t add up. When you scratch the surface you begin to realize that other factors — human movement, transport, sexual behavior, circumcision or lack of it — are decisive in how the virus spread.

You describe the AIDS belt, an area in southern Africa at the very heart of the African epidemic. What are the characteristics that made it, as you call it, a tinderbox?

There’s a giant swath of the continent that starts at the southern end of Sudan, goes down through east Africa to South Africa and out to the sea where you have this combination of sexual networks and low rates of male circumcision. Together they produce the tinderbox. Two centuries ago most of Africa had polygamous societies in which the richest, most powerful men had multiple wives. In contemporary Africa, in part because of that tradition and in part because of the ravages of colonialism and migratory labor, many men and women have more than one sexual partner over the course of a week or month. But to be part of the AIDS belt, you need one more thing: low rates of male circumcision. The people who migrated down the Nile River basin from Sudan never had circumcision as part of their tradition. In the southern part of the continent, it was a tradition pretty much everywhere until about 200 years ago when some ethnic groups began to give it up. In those places you see HIV rates of 10, 15, even 25 percent.

Why is circumcision effective and why was early evidence of its power missed?

A man’s foreskin is unusually vulnerable to HIV; the skin is thinner, softer and more easily penetrated by HIV and other pathogens. When it’s removed, the remaining skin is rougher and more resistant to infection. That makes no difference if you’re a gay man who is the receptive partner in anal sex. But the African epidemic is spread predominantly through heterosexual sex, particularly vaginal sex, and circumcision is crucial. Circumcised men are at least 70 percent less likely to get HIV. This science first began to appear in the mid-1980s.

That’s three decades ago!

That’s right. That data seemed to offer this miraculous new insight. But the global public health community was deeply uncomfortable with the subject. It took another 20 years to come up with evidence so definitive they accepted it. Peter Piot, one of the central characters in the AIDS response, was part of that research team. Yet during all the years he was head of UNAIDS he was not enthusiastic about this science. To be fair, establishing correlation is not the same as establishing causality. And it’s a pretty serious thing to contemplate altering men’s penises if you’re the global health community.

One area of culture clash between global health agencies and Africa is over condoms. What happened?

People who had watched AIDS in the U.S. were mindful of the way condoms seemed to slow the spread of HIV there and especially in Thailand, where the epidemic was transmitted mainly in brothels. It was hard for those officials to understand how different the African epidemics were. In several places, Africans were saying, “Hey, our best chance for surviving is for people to have fewer sex partners at a time.” But Westerners had condoms on their minds. The U.S. government and other organizations made a huge bet on condoms and reasoned that if you could just get enough of them to people in vulnerable places you could reverse the epidemic. Instead, reported usage of condoms in some African societies went to rates far higher than anywhere else but HIV also went up. That puzzled people until it became clear that people were using condoms with prostitutes or one-night stands but not in long-term relationships with their husbands, wives, boyfriends or girlfriends. And that’s how HIV is most likely to spread.

Uganda emerged in the early days of the epidemic as a place that took effective action, changed people’s behavior and lowered HIV transmission. 

In 1986 a new government took over and confronted the facts of AIDS. They knew it was fatal, they knew it was incurable, they knew it was spread by sex, and they knew a lot of people already had it. So political, religious and cultural leaders focused on changing the sexual behavior that was at the core of HIV’s spread. The most famous terms for this was zero grazing, a metaphor that worked well in an overwhelmingly agrarian society. When leaders said zero grazing, Ugandans understood at an intuitive level that having sex with your primary partner is much safer than having sex with a primary partner and others. If a large number of people make a relatively small change in their number of sex partners it can make a massive difference in the spread of HIV. That’s what happened in Uganda and hundreds of thousands of lives were saved.

Why were the powers that be in global health so reluctant to focus on behavior change?

The global health infrastructure was uncomfortable talking about differences in sexual behavior. That’s a shame because a sexually transmitted epidemic is by definition spread by sex. To understand why it’s worse in some places than others you have to dive into some inherently uncomfortable questions about a very private matter.

Yet there was historical evidence here that changing behavior made a difference. San Francisco closed the bathhouses and it helped. In New York, behavior changes led to lower rates of anal gonorrhea in the early days of the epidemic.

Those changes were instituted within coherent communities. Gay men advocated the closing of bathhouses and made the choice to have fewer partners or use condoms. In Africa that process was hampered by the slowness to accept that AIDS was real and the fact that people are understandably resistant to being told what to do by a large and powerful outside force. Many of these societies need our financial aid, our technical assistance to do things that matter to them, including improving public health. The tension over how much to listen to outsiders while not wanting to be told what to do has troubling consequences that have infused the world’s response to AIDS in all sorts of ways.

What lessons do you draw from the way the epidemic has been addressed in Africa?

The overriding lesson is that sex matters. Those of us who care about people getting this terrible disease can’t be squeamish in discussing sexual behavior because we’re afraid of how it makes us look. The research has to be good, the messaging has to be forceful and clear. It’s not enough to tell people to use condoms all the time because the evidence after more than 30 years is that people don’t, not often enough to be truly decisive. We also have to be willing to engage in questions about how many partners people are having, we need to tell people that from the viewpoint of sexually transmitted infections, anal sex is more dangerous than vaginal or oral sex. These things are uncomfortable to talk about. At the same time, if we take seriously the moral question of trying to prevent as many infections as we can, we can’t be frightened of these subjects.

Continue Reading Close

Rob Waters writes about health, mental health and science from his home in Berkeley, California. His investigative feature in Mother Jones, “Medicating Aliah,” examined pharmaceutical industry influence over prescribing guidelines and won the Casey Award in 2006. His articles have appeared in Bloomberg Businessweek, Mother Jones, Health, Reader’s Digest and other publications.

The new AIDS crisis: Funding

Scientists believe they can finally stem the epidemic, but money is a major obstacle

  • more
    • All Share Services

The new AIDS crisis: Funding (Credit: Reuters/Yiorgos Karahalis)
This article originally appeared on GlobalPost.

KISUMU, Kenya – Thirty years after the discovery of AIDS, scientists believe for the first time that they now have the tools to beat back the deadly virus.

Global Post

The evidence is found in HIV prevention research conducted here on the shores of Lake Victoria and in several other parts of sub-Saharan Africa, long the epicenter of AIDS. The most notable research discovery stems from the HIV Prevention Trials Network 052 clinical trial, a U.S.-funded, nine-country study that found early treatment reduced the risk of HIV transmission to an uninfected partner by 96 percent.

The 052 results – announced to a standing ovation in Rome at the International AIDS Society conference in July – was one in a line of recent breakthroughs, including the benefits of male circumcision to prevent infection, and smaller conceptual advances in an HIV vaccine candidate as well as with microbicides, or gels used by women to stop transmission.

But the gloomy global economic situation, and recent scale-backs in HIV funding around the world, have cast great doubt as to whether policymakers will take advantage of the combination of new prevention tools to fight AIDS.

This collision of scientific advances vs. economic realities also comes at a heightened political moment of the U.S.’s own making: Secretary of State Hillary Rodham Clinton earlier this month called for an “AIDS-free generation,” and the United States’ actions on AIDS will be in the spotlight during next July’s International AIDS Society conference in Washington, D.C., which is being held in the U.S. for the first time in 22 years due to the Obama administration’s decision last year to end U.S. entry restrictions on people who have HIV. The conference is expected to attract more than 25,000 people from around the world.

President Obama is expected on Thursday — World AIDS Day — to talk about his administration’s next steps on AIDS, following Clinton’s speech. This would be his first major speech on AIDS as president; he has remained largely silent on all global health issues. Even when Obama announced a bold new Global Health Initiative, the White House put out only an eight-paragraph statement.

“The terrific science in the last year is coming up against the fiscal constraints,” said Chris Collins, vice president and director of public policy amfAR, the Foundation for AIDS Research. “It is going to take choices. That is the big challenge for policymakers in the next couple of years: How to get above the day-to-day politics here and use the resources as strictly as possible. We now need to hear our president articulate his policy action plan for an AIDS-free generation.”

Several sources within the Obama administration said in interviews that Clinton’s speech at the National Institutes of Health was at least partially spurred by the realization that next year’s AIDS conference will shine a spotlight on the U.S. commitment to fighting the virus, both globally and domestically. The idea was that the United States will be able to report back to the conference on its plan of action globally, while also speak about ongoing research in several U.S. cities about the most effective ways of finding those who are infected and then putting them on treatment.

In the meantime, Obama’s top scientists are urging that the research discoveries to prevent HIV transmission are put to use. The one in the forefront is the best known of all: Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, who has advised U.S. presidents since Ronald Reagan on how best to address AIDS.

“All of a sudden we have a convergence of prevention approaches, which includes treatment as prevention, and that really validates the concept of combination prevention,” Fauci told GlobalPost in an interview earlier this month. “There is now an enthusiasm and an excitement if we can implement some of these scientific advances, we can have a major impact in turning around the trajectory of the epidemic.”

Fauci said that future modeling of the AIDS epidemic shows that if prevention tools are effective and if fewer people are infecting others, a precipitous fall in HIV infections could follow. Then, he said, the whole arc of the epidemic could crumble.

“When we can get the incidence of HIV down enough to turn the trajectory of the pandemic, it will assume a momentum of its own in diminishing HIV,” he said.

“That’s because the fewer people who are transmitting infection and the more people who are trying to protect themselves from infection – those are the two arms of the problem – that diminishes the pool of people capable of infecting the other people.”

A UNAIDS report released last week concluded that the global expansion of AIDS treatment has made a significant difference in terms of saving lives and almost surely in preventing infections. It estimated that new HIV infections were reduced by 21 percent since 1997, and deaths from AIDS-related illnesses decreased by 21 percent since 2005. It also found that 6.6 million people were on life-extending antiretroviral treatment in 2010, an increase of 1.35 million from the previous year.

Given the findings of the 052 study, scientists and researchers said that the more people who are put on treatment, the more infections will be averted. The experts said that funding isn’t the only issue. Another key one is making sure the prevention strategy matches the specific epidemic in a country.

“Funding is not enough today and probably will never be adequate,” said Robert Hecht, a principal and managing director at Results for Development who has done extensive modeling on what will happen in various scenarios with AIDS funding.

He continued: “What will be important is getting some of these countries to recognize that if they don’t have all the money they need, they need to target programs for the high-risk groups. If you had to choose, say, between a few more dollars for sex education in the schools, or spending it more to reach gay men, or injecting drug users, the countries would be better to use it in the latter programs.”

In Kisumu, the principal city of western Kenya, with a population of roughly 500,000, the 052 trial was stopped in May because it was working so well that researchers felt it was no longer ethically defensible to keep a control group on placebos. Dr. Lisa Mills, the principal investigator for the western Kenya part of the study, and chief of the HIV Research Branch at KEMRI-CDC (a long-time collaboration between Kenya and U.S. researchers), said the Kenyan government already had started people earlier on treatment, but she and others hoped that more funding would allow for another expansion.

“The modeling shows that the amount of funds used for treatment would be much lower by 2015 if you started earlier,” Mills said. “And 2020, there would be a huge savings. There is an increase in start-up costs, but with the costs of the drugs gradually dropping, more efficiencies in treatment, and a reduction in new infections, including pediatric infections, all those add up to fewer people on treatment” in a few years.

Mills said that in fighting AIDS, like other epidemics, “the real issue is when you turn off the tap,” referring to stopping the numbers of new infections. “When you have fewer and fewer new people getting infected every year, turning off the tap starts to happen,” she said.

Kayla Laserson, the director of KEMRI/CDC Research and Public Health Collaboration, said the AIDS research is part of a multi-pronged global health research agenda aimed at finding new drugs, vaccines, and diagnostic tools for a host of diseases. “We have the 052 trial here, but we also have the malaria vaccine trail, and the site for a TB vaccine trial, and many others,” she said. “We see how we make an enormous impact because the results from the community we serve are all around us.”

In the nearby village of Ematsayi, Peter Owiti Omotsi, 39, a father of five, is one of thousands of people in the region now on antiretroviral drugs to fight AIDS. He started treatment in 2008. His wife was HIV negative at the time of his diagnosis, and she has remained negative, he said. Omotsi said the drugs, plus changes to improve the nutrition in his diet, have made him much healthier.

“These drugs work,” he said. “I believe before I die, I will see my grandchildren. Without these drugs, that probably wouldn’t happen. But I have some years to live now. I can at least be proud of my grandchildren.”

In the months and years ahead, the U.S. government will need to make decisions on whether to expand AIDS treatment in the United States as well as around the world to people who are infected but are not acutely ill from the disease. No one is making any promises yet. But no one doubts either that the range of prevention approaches now available, taken together, create a new, powerful weapon to halt AIDS.

“In the last year or so, we have enough scientific advances so that we can start to see some significant turnarounds in the trajectory of the pandemic,” said Fauci, the longtime U.S. AIDS researcher. “But it’s not going to happen alone. We’re going to need a lot more host-country involvement, we’re going to need other donors, we’re going to need to be more efficient in what we do with the resources that we have. Now is a critical time in the history of the AIDS pandemic.”

Continue Reading Close

John Donnelly is a reporter for Defense Week.

The worst state in America to have HIV

Backward laws and ignorant legislators make Mississippi an especially deadly place to be sick

  • more
    • All Share Services

The worst state in America to have HIV (Credit: jocic via Shutterstock)

Recently, an elderly woman in Mississippi was left alone on the curb outside a hospital emergency room. The woman didn’t have a medical emergency. She’d been dumped by the nursing room employees who had learned that she had HIV, according to a lawyer at the Mississippi Center for Justice to whom she was eventually referred.

Mississippi’s neighbors have been known to thank God for Mississippi — when your state ranks 48th or 49th in just about every sad statistic about health or poverty in America, it’s nice to know you’ll always look better than someone. The state’s indicators for HIV and AIDS are about as horrific, although the 9,546 people in the state reported to have the virus probably aren’t particularly grateful about it.

The state has the highest new infection rate and greatest percentage of people living with HIV in the country, and by many measures, the least interest in helping them. Elsewhere, HIV/AIDS has become manageable with anti-retroviral therapy, but a Mississippian with HIV/AIDS is almost twice as likely to die than the average American with the virus; HIV-positive African-Americans in Mississippi are ten times as likely to die from it than their white neighbors. African-Americans are only 37.5 percent of the population, but represent 78 percent of new HIV infections. Meanwhile, an abstinence-education statute forbids even programs offering information about condoms to demonstrate how to use them, but does include a requirement to mention the anti-sodomy laws still on the books.

Combine racism and political indifference to poverty with homophobia — there’s been a rapid rise in infections among young men having sex with men in the state — and you’ve got a public health disaster that state politicians mostly ignore, or worse. ”I’ve been called a nigger and a faggot by state legislators right in the Capitol,” Alonzo Dukes, executive director of the Southern AIDS Commission in Greenville, Miss., told Human Rights Watch for a recent report. One of the few advocates for people living with HIV, state Rep. John Hines, says in the same report, “Legislators in Mississippi don’t see it as a public health crisis; they see it as a punishment for an unhealthy lifestyle.” The state contributes only $750,000 towards HIV/AIDS programs, out of a budget of $4.9 billion.

In other words, there’s very little to prevent employers and housing providers from discriminating against people with HIV, especially because the state doesn’t have any anti-discrimination laws and Mississippi also ranks 49th in funding civil legal services for the poor, according to the state’s Access to Justice Commission.

Even those who can afford a lawyer might have trouble. “I’ve heard stories of even lawyers turning clients away when they have AIDS,” says Marni von Wilpert, a fellow with the Mississippi Center for Justice. “People think they can get it from handshakes or hugs.”

Human Rights Watch also indicted the state for “punitive, stigmatizing, and discriminatory policies that undermine efforts to reach the population’s most vulnerable to HIV … leav[ing] people with HIV/AIDS without treatment at rates comparable to those in Botswana, Ethiopia, and Rwanda.” Advocates report hearing stories of public health officials showing up at workplaces and homes without any regard for confidentiality — terrifying in small rural communities where the stigma of HIV is brutalizing.

Robin Webb, executive director of A Brave New Day, which provides support services to people with HIV/AIDS, says this fans long-standing mistrust of government medical services in the African-American community going back to the Tuskegee syphilis studies. “The government actually plays out that whole Tuskegee scenario when it becomes a punitive force. The way they handle public health is all about authoritative punishment.” They are also terrified of what will happen to their lives if their infection is discovered. ”The No. 1 punishment is to kick people out of the church,” says Webb. “These are the people who talk about Jesus and the lepers.”

One MCJ client, admitted to the hospital for seizures, woke up to discover the doctor had informed a relative, in violation of medical privacy laws, that the patient had AIDS.  ”People are not going to seek care if they think everyone in their family is going to find out,” says Von Wilpert. Meanwhile, Von Wilpert says, the state has chosen only to distribute free AIDS drugs at limited Department of Health locations. “People are traveling two or three counties over to even get the drugs,” she says — or not traveling at all.

The good news is that advocates believe they have an ally in the state’s new STD/HIV director, Nicholas Mosca. Von Wilpert and her colleagues are launching a new medical-legal partnership program, as well as an office in the hard-hit Delta region. Webb, who grew up in the Delta but lived in New York during the AIDS crisis and subsequent activism, says he’s trying to import that language of empowerment and self-management to his home state, and try to undo the shame and stigmatization. “I think most of us realize that diseases, especially lethal diseases, love secrets,” he said.

 

Continue Reading Close
Irin Carmon

Irin Carmon is a staff writer for Salon. Follow her on Twitter at @irincarmon or email her at icarmon@salon.com.

The art of the AIDS poster

A new collection shows 30 years of fascinating, frustrating, beautiful attempts to educate the world about safe sex SLIDE SHOW

  • more
    • All Share Services

The art of the AIDS poster

View the slide show

Each of the more than 6,000 images in Dr. Edward Atwater’s peerless collection of AIDS-related posters — now owned by the University of Rochester’s Rare Books and Special Collections Library — freezes its viewer at a particular social, cultural, political and geographical point in the 30-year history of the disease.

Some of the posters are provocative, explicit or overtly sexual; others are straightforward, tame — even prudish. Some rely on shock-and-awe tactics to make a general point; others offer detailed advice for HIV protection. Some, created in the 1980s or ’90s, are already very clearly dated; others are triumphs of evergreen design. All offer glimpses of past understandings of the disease, its dangers and its prevalence.

The posters themselves hail from more than a hundred different countries — translating fears, concerns, misconceptions and public service announcements into languages as familiar as English and Spanish or as exotic as Latvian, Slovakian, Hebrew and Icelandic. What connects them is the wide-ranging interest (and prodigious curiosity) of Atwater himself — a former professor at the university’s medical center — who donated his collection to the institution several years ago in the hope that its contents would continue to educate viewers about the disease and its history.

Almost 1,500 of Atwater’s posters have so far been made available on the university’s browsable online database, and more are being added continually. See some of the highlights of the collection in the slide show that follows — and then head over to the database itself for further browsing.

View the slide show

Continue Reading Close

Emma Mustich is a Salon contributor. Follow her on Twitter: @emustich.

The terror of a bogus HIV test

After a false-positive shut down the porn industry, an actress opens up about her testing scare

  • more
    • All Share Services

The terror of a bogus HIV test

The details of how a bogus test result reportedly shut down the billion-dollar adult industry for a week are still shrouded in secrecy — but porn actress Dylan Ryan says she understands what the performer, known as “Patient Alpha,” must be feeling. That’s because she experienced firsthand the terror, and unparalleled relief, of a false-positive HIV test.

It happened before she entered the business, so she has unique insight on both the adult industry and what it’s like to experience an HIV scare as a non-performer. Eight years ago, she went to a reputable testing site in San Francisco — she was starting a new monogamous relationship and wanted to play it safe. They gave her an FDA-approved rapid fingerstick test that can turn around results in a mere 20 minutes — but 40 minutes later she was called into an office by a man “who had a worried look on his face,” she said in an email. He told her she had a positive result — but, as she started to cry, he added that a confirmation test, which would take a couple of days to process, was still needed. “It felt terrifying but also like it couldn’t possibly be,” she said. “I ran through all the possibilities over and over.”

She debated whether to tell anyone and ultimately decided against it: “It felt too shameful, too scary and if there was a chance I wasn’t positive, I wanted to hold on to that for as long as possible. I dreaded having to call partners and possibly tell and then lose my new person.” When the test results came in, she was called into the office and “sat in the waiting room, feeling like I was going to vomit at any moment,” she said. “I could have sworn that everyone was staring at me.” The same counselor from before called her into the same room where she had received the bad news just days before, but this time, as soon as he shut the door, he said, “I have good news.” Ryan started to cry, “even harder than the last time I was in the room,” she says.

False positives can arise because of certain medical conditions (like lupus, Lyme disease and syphilis), sample contamination, or clinicians’ failing to follow proper follow-up protocol. It’s estimated that the enzyme-linked immunosorbent assay (ELISA) test, which is currently the standard screening approach for the general population, has a false-positive rate of one to five per 100,000 tests. ELISA is sensitive enough that if someone gets a negative result, a follow-up test generally isn’t needed — but a positive result always calls for a confirmation test, most often by the more targeted Western blot test. That brings the rate of false positives to roughly 1 in 250,000 cases, according to the AIDS charity AVERT. The adult industry has relied on a different test with a smaller “window period” between exposure and possible detection: The pricey and specialized PCR/DNA technique can yield results as early as two weeks after exposure by detecting HIV itself rather than the antibodies caused by the virus.

The Free Speech Coalition, the organization currently working to create a new testing system following the bankruptcy of Adult Industry Medical (AIM), hasn’t revealed any specifics about how the performer in question received a false positive. Most have chalked that up to respect for patient confidentiality or the chaos of a business in transition, although one conspiracy-minded pornographer has suggested it’s a coverup. One thing is certain: Uncertainty and paranoia isn’t unusual following a false positive.

“I wouldn’t wish that on my worst enemy,” Ryan said of her experience with a false positive. “I know that testing has improved exponentially since [then] and I am glad that fewer people will experience that kind of momentary life upheaval.”

Continue Reading Close
Tracy Clark-Flory

Tracy Clark-Flory is a staff writer at Salon. Follow @tracyclarkflory on Twitter.

Page 1 of 33 in AIDS