AIDS

See no AIDS, hear no AIDS

In Swaziland, villagers spend every weekend burying their dead, but they still can't admit what's killing them. A report from ground zero of the African holocaust.

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See no AIDS, hear no AIDS

The news reaches me silently.

“Manizi lawyer and PUDEMO stalwart Dominic Mngomezulu is dead after a long illness.”

I am stunned. The news comes as I am preparing to leave to report on the 13th International AIDS Conference in Durban, South Africa. I type the name of my old friend into a search engine to find a recent contact number for him. I’d hoped to visit him in neighboring Swaziland, a country where I’d taught high school 11 years earlier, after the conference. Instead, this brief article from a Swaziland newspaper appears at the top of the screen, announcing his death two years earlier. No cause is listed.

In shock, I e-mail Brenda, a Canadian friend who still lives in Swaziland. Her reply comes swiftly: Yes, she had heard of his death. So sad; it was AIDS.

But how was this possible? He was straight, highly educated, more enthralled with politics than women. Then I do a Web search on AIDS in Swaziland, and a whole new reality of a country I thought I knew comes up on the screen.

Swaziland is one of the countries worst affected by AIDS in the world. As many as one-third of its young adults are infected. And the rate of infection is rising with depressing speed: From 1997 to 1999 alone it jumped from 26 to 32 percent. Life expectancy has dropped more by than 13 years since 1992, and is now at a low of 47. Three out of every four Swazi deaths are from AIDS. And according to UNICEF, over the next decade and a half, as many as 40,000 Swazis will die each year of AIDS. This gentle country of fewer than a million inhabitants was crumbling.

The next week I’m attending the AIDS conference, whose slogan is “Break the Silence,” and I learn more about the dire situation in southern Africa. Two-thirds of the world’s more than 40 million AIDS cases are in Africa, most of those in the sub-Sahara. Sixteen thousand Africans are infected with HIV each day. One in 10 African children is an AIDS orphan, and many of them will end up dying of AIDS themselves. And if this sounds bad, the conference presenters repeatedly emphasize, wait a year or two, or God forbid 10, because things are only going to get worse.

The numbers overwhelm me. They are almost impossible to comprehend. But the news of Dominic’s death gives some small, personal meaning to this horrendous loss of human life and potential. I keep him in my mind while I’m doing the math.

Then halfway through the conference something strange happens. Brenda reaches me again, this time by phone. She tells me she has good news about Dominic. My heart races. Perhaps the article was a mistake; perhaps he is still alive …

“He didn’t die of AIDS,” Brenda tells me excitedly as I catch my breath. “Yesterday I bumped into a friend who knew him quite well and who told me he died of sugar diabetes. Undiagnosed.”

Brenda pauses. “So that’s good news, isn’t it?”

For a moment I can’t answer. Good news? He’s still dead. But Brenda seems to think so, albeit hesitantly. I can hardly blame her. Who, after all, would choose AIDS as a way to die? But the relief in her voice isn’t just because Dominic avoided an especially cruel illness, I think. It’s because more than 15 years into the epidemic, AIDS is still the most shameful thing on earth to die of.

I’ll go back to Swaziland, I decide. After only a few days at the conference, I’m already tired of hearing about the devastation. I’m tired of learning more atrocious statistics that I can’t possibly comprehend. I need to see the effects of AIDS for myself and in a place I knew before AIDS strangled its people in a deadly grip. And, I realize, I need to find Dominic’s children. He was the sole breadwinner for his large, extended family and they undoubtedly need some financial help. If, as was discussed so much at the conference, we all need to do something now, his children are the place to start for me.

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My friend Brenda picks me up at the airport. We head into the rural expanse of the north, the shrubby hills gradually leveling off to a steady, swaying sea of sugar cane. Swaziland is a nation slightly smaller than New Jersey, surrounded by Mozambique to the north and South Africa everywhere else. It’s a conservative country that takes its traditions very seriously. One of the worst insults a Swazi can make is to accuse another of “un-Swazi” behavior. Polygamy is perhaps its most sacred tradition and is still widely practiced. Swaziland is also one of the few remaining monarchies in Africa, and King Mswati III, barely in his 30s, has just named his eighth wife. His father, King Sobhuza II, had 80 wives by the time he died and fathered more than 100 children.

My friend Dominic was a charming mixture of Swazi tradition and astute political awareness. He was raised, like all other rural Swazi children, on a homestead with several mothers and dozens of siblings. But he was also committed to bringing change to his country. He and a small group of friends formed the core of the democratic movement in Swaziland, and most of his adult life was dedicated to the struggle.

As we drive, Brenda tells me that she has arranged a meeting tomorrow with a relative of Dominic’s who knows the whereabouts of all his children. Not only that, Brenda says, but this relative also has some intriguing news about his death.

When I lived in Swaziland 11 years ago, AIDS was a joke. Literally. It went like this: What does AIDS stand for? As you tried to recall what each letter stood for — this was before acquired immune deficiency syndrome rolled so easily off the tongue — the punch line came: American Instigation to Discourage Sex.

Now a spoiled sex life is the least of the country’s concerns.

On my first morning there, I peer at two pages of obituaries that fill the local newspaper. The notices quaintly and evasively refer to the passing away of a whole generation of young Swazis: Friends and relatives of Roda Betfusile Magagula are notified that she is late. Night vigil on Friday. Friends and relatives of Mlungisi Makama of Ngwenya village are notified of his death after a short illness. He will be laid to rest on Saturday at 7 a.m. A night vigil will be on Friday. Relatives and friends of the Maziya family at Zandondo are notified that Sibusiso Maziya is late.

It’s a language composed of code words. Sudden death. Short illness. Late. All meaning the same thing. All the notices are accompanied by photos of mostly young people in their 20s and 30s, even some children.

We head through the cane fields to church, with the pungent, too-sweet smell from the sugar mill in the distance reaching our nostrils. As we pull up outside the company garage that serves as the church, the parking lot is deserted. Inside, fewer than a dozen worshippers stand swaying and singing. I look to Brenda, questioningly.

“Yeah,” she acknowledges, in an embarrassed, hushed tone. “Everybody’s away at funerals on the weekends. It’s hard to keep the church going.”

After the service, we stroll through the town, passing hardly a soul. When I lived here a decade ago, the roads were lined with families in their Sunday best streaming to and from church.

Now Swazis spend weekends on their homesteads burying their dead.

Hundreds of funerals are held each weekend across the country. They used to be held during the week, says Brenda, but there were simply too many and people couldn’t afford any more time off work. So now Swazis spend almost every weekend at funerals. Sometimes, Brenda tells me, you can hear the soulful wail of the mourners drifting over the sugar cane fields at sunrise. Swaziland has entered an endless season of mourning.

- – - – - – - – - – - – - – - – - – - – -

Later in the day, on the veranda of a local clubhouse, we sip soft drinks while waiting for Margaret, one of Dominic’s relatives. (I’ve changed some of the names in this story to protect her and Dominic’s other loved ones.)

“Shame!” she exclaims, the southern African catchall word for sympathy, before she wraps her arms around me. A large, slightly disheveled woman with a maternal glow, she looks to be in her mid-40s, but may well be 10 years younger, because of a lifetime of overwork. She holds me and we cry together for a few minutes. Then, grasping firmly onto my hand, she pulls me into a chair and we get down to the business of Dominic’s children. But first, she has some news about his death. She shakes her head and tsks in typical Swazi fashion.

“Haye, it was so sad,” she begins. “You know, he was poisoned.”

“What?”

Margaret pauses dramatically and grips my arm.

“Haye! You see, this is the kind of country we live in.”

“But what do you mean? I thought he died of diabetes …”

“He fell ill and went to the hospital with that. But, you see, he was sent to a government hospital, and they realized they could get him finally. The government used the opportunity to poison him.”

I sit there, dazed. It sounds so conspiratorial, yet it was possible. Dominic had been jailed and others had been tortured. I ask Margaret if there was any proof. She says she heard an independent doctor had conducted a separate autopsy and found signs of poisoning. Also, a team “from outside” was called in to investigate the possibility. Yet, when I press her for details, her answers grow vague. She will find out more, she promises, and write me with the information.

Margaret is only slightly less equivocal when it comes to Dominic’s children. She is pretty sure he had five or six. Five or six! Three years ago he’d told me about two. How could this be? She counts them out on her fingers: two in South Africa and four in Swaziland living with various relatives. One of his children, she says, a young boy, is living in dire conditions. He surely could use some help. Again, she will find out more and write me with all their names and particulars.

When we later visit Margaret’s home — a squat cinder-block structure with a corrugated-iron roof — a toddler in a scrap of a white dress rounds the corner into view. I ask Margaret if the child is hers.

“No, I brought this child here yesterday. Her parents are not right,” she says, without further explanation.

The care of children is fluid in Swaziland; they pass casually among the arms of an extended family, flowing with the currents of need and capacity to care for them.

“I don’t think she was getting enough to eat,” Margaret adds. She reaches down and lifts the girl’s dress, revealing a tummy bloated from malnutrition.

“How long will you keep her?” I ask.

“Well, I told her parents that I would just take her for a few days,” Margaret confides. “But I think, really, I will be keeping this child.”

The next day, a sunny Monday morning, a handful of people lie on the front lawn of a sugar cane company medical center, strewn like broken branches after a windstorm: women with babies suckling at their breasts, men with the shingles scars — an AIDS “marker” — glistening on their shoulders and necks. Too exhausted to stand, they lie here waiting to see the doctor.

I, too, am here to see the doctor, to ask him about the AIDS epidemic in Swaziland. He agrees to meet me only if I promise not to identify him. If his name is linked to any story on AIDS in Swaziland he could lose his job, he tells me.

His fear is justified. Less than two years ago, a small, successful appliance manufacturer called Fridge Master discovered just how explosive breaking the AIDS silence could be. The company was a major success story for the government’s efforts to bring in foreign investment. Then, in 1998, the Swazi government learned of “mysterious deaths” among more than 1,000 of the firm’s workers. Swazi members of Parliament instructed the labor minister to investigate rumored “lethal chemicals,” which allegedly were the cause of the deaths. In response, the company proclaimed its safety standards and explained that the workers had died of AIDS.

Fridge Master couldn’t have been less prepared for the uproar that ensued. Its workers suddenly found themselves shunned by local women and began to be denied credit in stores. The workers then demanded a retraction and apology from Fridge Master. The press, Parliament and labor organizations joined in, accusing the company of “cultural insensitivity.” Workers staged a three-day strike. Shortly afterward, Fridge Master announced it would move a planned factory expansion to Botswana because of Swaziland’s “head-in-the-sand denial of AIDS.”

This doctor isn’t going to risk bringing that kind of backlash upon his employer.

Our interview is brief and tense. The only point at which he expresses any personal opinion is when I ask him about HIV testing. He tells me he thinks patients should be tested even without giving their consent. His view surprises me. At the AIDS conference, I learned that HIV testing without consent not only is a human rights violation but is also far less effective in preventing the spread of the virus than testing with consent followed by counseling.

But I understand his frustration. Hundreds of sick people are coming to him, but refusing to be tested for fear of the result. The lack of testing and even of a standardized system of reporting cases has led to disparities in estimates of infection even by various international bodies. In March 1999, for instance, UNICEF reported that 31 percent of all Swazis were HIV positive. It went on to project that up to 40,000 Swazis would die yearly of AIDS over the next 15 years, while estimates of UNAIDS (Joint United Nations Programme on HIV/AIDS) and the World Health Organization were lower. The disparity allowed the government to hotly contest the UNICEF predictions. UNICEF’s attempt to wake up Swaziland to the epidemic raging through its land was effectively derailed, and the subsequent debate focused on whose numbers to trust, not on what should be done.

When testing has been done, however, results are chilling. One 1998 study showed that roughly half of all patients admitted to Swazi hospitals were HIV positive. Another study looking at HIV in pregnant women found that, in 1992, 4 percent of Swazi women were infected with the virus. Six years later, 32 percent were infected.

Swazi reaction to the epidemic has been painfully slow. This spring, the king finally pronounced AIDS a national disaster and the prime minister inaugurated a crisis team to deal with the problem. But the quality of discussion around AIDS is disturbing. Last year, for instance, a Swazi royal and member of Parliament recommended branding or tattooing infected individuals and quarantining those infected. Moreover, Ben Dlamini, head of the government School Exams Council and a weekly newspaper columnist, insisted that AIDS had been sent by vengeful ancestral spirits angered by promiscuous sex. In one Swazi newspaper report, I read of M.P.s jovially expressing their distaste for condoms, saying it made them lose their interest in sex.

I am curious about condom use in Swaziland. Nicole Frazer, a Swaziland AIDS researcher who was also at the Durban conference, told me a little about condom distribution here. She said free condoms have been distributed in waves through the country, but they rarely reach rural areas. And Swaziland has plans to promote condoms later this year, but it lacks a national plan that would reach everyone affected by the disease. At the moment, she said, plans are being made and there are promises of big money from various organizations, but government funding has been far from sufficient. In the southern region of Shiselweni, however, one group has begun to hand out condoms at cattle-dipping tanks and hair salons to reach the many young people who are too poor to attend school.

I ask Brenda to stop at a pharmacy so I can see for myself what’s available. I’m especially interested in the female condom, which was hailed at the AIDS conference as the future of prevention in Africa. African men do not want to wear condoms, I heard again and again from African AIDS workers. So now health workers are placing their hopes on providing women with a condom of their own, whose use they can control.

Outside the cluster of stores, a band of small boys in rags loiters by some shopping carts. They reach out their hands, begging as we pass. A decade ago, a Swazi child begging in the streets was unheard of. With the vast network of extended families, needy children were taken in. Now there are street kids in every large town, Brenda tells me, and for the first time ever, there are orphanages in Swaziland.

Inside the drugstore, I approach the pharmacist and ask her about female condoms. She tells me she has heard of them but doesn’t stock them. Perhaps the supermarket might sell them. At the supermarket, I ask for the manager. He, too, tells me there are none in stock but that he hopes to get them sometime this year. He directs me to a rack of male condoms behind a counter in the far corner of the store. They keep them out of site, he explains, because customers are too embarrassed by having them on the shelves.

I wonder what kind of impact the female condom will have whenever it gets here. I recall the angry voices of African women at the AIDS conference: How do you talk about condoms, they demanded, when polygamy still exists? When sex is not negotiated, but taken for granted? When girls and women are coerced into relationships? When the legal concept of rape within marriage doesn’t exist? When little girls are routinely violated because of a widespread myth that a man can be cured of AIDS by having sex with a virgin? To talk about safe sex is a joke, said one bitter activist, when women have no power.

In the afternoon, we visit an elementary school. A nurse from our health clinic visit earlier in the day asked to me to help her give a sex education talk to a class of 11-year-olds, in particular to talk about what I’d learned at the AIDS conference. At the beginning of the presentation, I write the word AIDS in bold on the blackboard and ask the students if they know what it stands for. They all raise their hands. I then ask them if they talk about AIDS at home and, if so, what have they learned. The students squirm uncomfortably. One girl at the back tentatively raises her hand. “My grandmother tells me not to go with boys because if I do I could die.”

- – - – - – - – - – - – - – - – - – - – -

I’d almost given up trying to locate Conrad (not his real name), Dominic’s housemate from 11 years ago. But on my last day in Swaziland, I find the number for his law firm and call. Miraculously, he is just on his way to a town we have to pass through on our way to the airport. We arrange to meet for lunch in an hour’s time.

Over lunch, we catch up. He is now a wealthy man by Swazi standards. He owns cattle and is busy setting up a homestead. He has also become the father of six children by four mothers. “You’ve been busy,” I joke, and he lets out a gentle, guttural laugh.

But it isn’t all good news. Two of his children’s mothers died recently and he’s having trouble finding a family member to look after them. There are so many orphans now.

Our talk turns to Dominic and his children. Conrad says he’s pretty sure Dominic had six children with four different women. Like Margaret, he believes two are living in South Africa. The others are being looked after by family members. He promises to write with their addresses.

Satisfied that I will locate at least most of Dominic’s children, I broach the subject of Dominic’s death. What began as a search for his kids, I realize, is now a personal inquest into his death. I mention the poisoning theory. Yes, Conrad nods, that was a real possibility. Dominic entered the hospital with pneumonia and died very quickly, leading many to suspect murder. Pneumonia? Was he sure? Yes, he saw the death certificate.

I sit in silence, wrapping my mind around this latest cause of death.

“So many people are dying,” says Conrad at last.

“Of AIDS?”

“Of all different things,” he replies, in a tense, stubborn tone of voice.

“You mean accidents or illnesses?”

“Of different things.”

“Like what?”

Conrad is quiet. Then he says, “All I know is that since Dominic’s death, too many people have passed away.”

“Conrad,” I say. “You’re talking about AIDS, aren’t you?”

Silence.

“It’s AIDS, isn’t it?” I repeat. “Why don’t you just say it? We’ve been sitting here for over an hour talking about all these people dying, and you haven’t said the word once.”

“Break the Silence,” the conference slogan that I’d found trite, suddenly hits me. It’s not an easy thing to do.

Brenda speaks up nervously. “Megan, it’s a small country and people are afraid that what they say will come back to haunt them. It might get around that Conrad is saying people are dying of AIDS.”

Conrad nods. “That’s right.”

“But Dominic died of AIDS, didn’t he?” I persist.

Another obstinate pause. “I don’t know.”

“OK,” I say, finally. “You don’t know. But that’s what you think, isn’t it?”

Conrad casts me a forlorn, helpless look. “Yes, that’s what I think.”

Only then does it dawn on me that Conrad’s resistance to saying the word “AIDS,” that the evasive look in his eyes, doesn’t contain just shame and sorrow but fear as well. He is scared for his own life.

- – - – - – - – - – - – - – - – - – - – -

I reach Radley (not his real name), another of Dominic’s friends, by phone the day I fly out of Swaziland. We arrange to meet at the Johannesburg airport, where I have a stopover.

Radley has been living in the South African city with his wife and two children since the early 1990s, when he was exiled from Swaziland for his political activities. The most sophisticated of Dominic’s friends, he taught sociology at the university for years. We have little time, so I immediately ask him about Dominic’s death. I don’t know why, perhaps it’s a necessary part of mourning, but I need to know with certainty what took his life.

I mention the poisoning theory. Radley sits still, quietly assessing me. Then he says it: Dominic wasn’t poisoned. The doctor who cared for him when he died was a political ally and a friend. He told a small group of Dominic’s closest friends — after Dominic’s death — that he had been HIV positive. Dominic died of AIDS; there is no doubt. Ray’s words are firm, but he looks sorry he has had to tell me.

So here it is: the truth I’d known all along. I’ve been just as much a player in the Swazi denial game as Dominic’s friends and family. Part of me, too, didn’t want Dominic to have died of AIDS. The part that wasn’t ready to have my own stereotypes of who dies of AIDS — gay men, drug addicts, poor, uneducated, marginalized Africans — shaken to the core.

Still, I wrestle with the knowledge. I need some more explanation; I need to understand this better. Dominic wasn’t a womanizer, I hear myself insisting to Radley. He wasn’t a polygamist. He was educated, he knew better.

“Even the progressives, even the ones opposed to polygamy, practice it in some form,” Radley explains, almost apologetically. “It’s culturally acceptable. In fact, a man with many women is seen as hot, a stud. And the women have to some extent submitted to this culture. They’ll go into a relationship knowing the man has other relationships or is even married.”

But something has to change, I flounder. Everyone is dying …

Radley shrugs. “The stigma is still so strong,” he says. “Nobody owns up to being infected, and unless you have a massive education campaign, unless you change the way people actually live, nothing will change.”

Will Swaziland be capable of this change? Or will it instead continue to cling to a tradition, to a quaint, coy silence that is wiping out a generation? Which will be the final teacher: change or death?

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I arrive back home the next morning. Compulsively, I head for the computer, sit down and punch Swaziland plus AIDS into the search engine. A brief Associated Press article appears with the headline “Miniskirts Banned in Fight Against AIDS.”

“Swaziland will ban miniskirts in schools to try to halt the spread of AIDS, a government official said yesterday. The aim is to put a stop to sexual relations between teachers and their pupils in a country where at least one quarter of the population is infected with HIV. School girls are widely blamed with enticing teachers with their short skirts.”

So here is the latest step Swazi leaders are taking against the worst threat the country has ever faced. Banning miniskirts and blaming schoolgirls. If it weren’t so cruelly inept, it would be funny.

But this bit of news is nothing but a horrifying confirmation of the lessons gleaned from my brief odyssey. HIV has resulted in the worst disaster Africa has ever faced. But in the tiny, gracious nation of Swaziland, breathtaking silence and blinding patriarchy are still its most deadly agents.

Megan Williams is a Canadian author and journalist who lives in Rome.

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

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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.

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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

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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.”

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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

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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.

 

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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

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The art of the AIDS poster

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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

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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

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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.”

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Tracy Clark-Flory

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

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