AIDS

Dancing in the dark

I was racing against death when I signed up to write Isadora Duncan's biography -- and winning wouldn't even be my strangest adventure along the way.

On the day I finished my book about Isadora Duncan — a biography it took me 10 years to complete — my computer gave up the ghost. I stopped writing on Nov. 29, 2000, and by midnight my hard drive was gone — melted, disappeared, as if it never existed. My brother, who works for IBM, tells me this really isn’t possible — “It’s in there somewhere,” he says — but he couldn’t find it, either, and he doesn’t know Isadora. I had backups of everything, but it seemed a strange coincidence.

Now, it’s the car. Something to do with the starter — namely, it won’t. A year has passed. “Isadora” is printed, published, shipped to the stores, and the car dies on cue, just when I need to get around and just when a small wad of money comes in from an old royalty account. It’s time for new wheels, even if they’re old ones (which they’ll have to be). My mother says I’ve got “an 11th-hour kind of life,” and a lover I once had in Paris called me a jusqu’au-boutiste — loosely translatable as a “whole-hogger,” and a compliment from a Frenchman, I think. At least, that’s how I chose to take it: 1993 was a difficult year.

I should be grateful; it could be worse. Isadora Duncan died just a few days after finishing her autobiography, “My Life,” in 1927 — strangled by her long silk shawl, as everyone knows, during a joy ride on the French Riviera. Then her first biographer, Allan Ross Macdougall, dropped dead of a heart attack in Paris on the day he mailed his manuscript to New York. True story: He was having lunch at the Cafi de Flore and just keeled over at the table, a fate we might all wish for ourselves — but not now, s’il plait aux dieux, not when “Isadora” is finally out of the box.

Macdougall — Dougie, they called him — makes a quick appearance in Nancy Milford’s new biography of Edna St. Vincent Millay; they were friends, and Macdougall edited Millay’s “Letters” after her death in 1950. What people don’t know is that when she died on the stairs at Steepletop, her house in upstate New York, Millay was holding a copy of “Isadora Duncan’s Russian Days and Her Last Years in France,” the book Macdougall had written 20 years earlier with Irma Duncan, one of the dancing “Isadorables,” Isadora Duncan’s students.

“It was under her head on the stairway,” Macdougall told a friend, “and was spattered by her poor post-mortem blood. The bloody part was torn off by her sister Norma before she gave the book to me; and erased from the top of it … I imagine Edna was going to take the book upstairs to consult when she [wrote] to the Guggenheim Foundation, backing my request for a fellowship to do the Isadora life. That, alas, was never done; and the Guggenheim people would not take the intention for the deed.” Dougie himself died penniless in 1956, and his biography of Isadora wasn’t published until four years after that, just a skeleton of the work he meant to produce.

So, you see, I’m lucky. I signed to do Isadora’s biography 10 years ago, in another world, nation, century, millennium and life. My agent worked me like a dog on the proposal — he kept sending it back. It’s good, he’d say, but not good enough; more of this, less of that. I came down to New York from Vermont to meet some big editors, but ultimately decided to stay with Little, Brown. For a moment, I felt golden and secure. But I had two secrets no one knew about. The first was that I was dying of AIDS. The second was that I knew nothing about Isadora Duncan; nothing at all.

DUNCAN, ISADORA (1877-1927) A pioneer of modern dance, she adopted an emotionally expressive free form, dancing barefoot and wearing a loose tunic, inspired by the ideal of Hellenic beauty.”

– Hutchinson Dictionary of the Arts

Come away! her dancing says. Come out into the splendid perilous world! Come up on the mountain-top where the great wind blows! Learn to be young always! Learn to be incessantly renewed! Learn to live in the intemperate careless land of song and rhythm and rapture! Say farewell to the world you know and join the passionate spirits of the world’s history! Storm through into your dreams! Give yourself up to the frenzy that is in the heart of life, and never look back, and never regret!

– Robert Edmond Jones, “The Gloves of Isadora”

I had to have something to work on, you see. I needed a job and an explanation, not for myself — I was too depressed, much more than I knew — but for other people when they asked: “What are you doing? What are you working on now?” I’ve always hated the question, even when I know the answer. “Oh,” I’ll say, “one thing and another,” or, “You know, it’s just beginning to take shape, and I don’t dare discuss it!” That always works.

In fact, when I began the research for “Isadora,” my lover had just died of “AIDS-related complications.” (I’ll call him the Phantom, because he swore he’d haunt me if I ever wrote about him, and if anyone could do it, he’s the one.) I had nothing to do but ward off panic. An editor, one of the only people in publishing I saw socially, as it were, mentioned Isadora Duncan over lunch. I had a lot of different lives at that time. I was driven, dashing, never stopping, always leaving. I had a separate life in London from the one in New York, a third life in Paris, a generic life for traveling, a gay life, a writing life, a life for tea with duchesses and a life in Vermont — “home,” where I grew up, went to college, got married and divorced, wrote my first book, met the Phantom and lost him in 1,170 days.

Probably, I should have told them all — publishers, editors — about my health condition, my sero status, before I contracted to write another book. It might even have helped to tell my agent — ex-agent, that is, because, when I finally got sick and fell apart, it was much more difficult to do. I still feel ashamed. It’s the same thing I felt toward old friends when I “came out,” a retroactive guilt over secrets I’d kept and things I should have said, but didn’t. For comfort, I remind myself that I was born on the cusp of gay liberation — “Write that down,” I say — too young to have played a part in the glorious days of Stonewall, too old to have grown up except in fear of discovery and exposure as a faggot — the worst fate an American boy could meet with on this earth.

So, fuck you — it took a while to adjust. And no sooner had one hurdle been cleared than another rose up to take its place, higher and even more threatening. I’d been frightened of AIDS since 1981, when those first poor fools in the Village began to drop. “Thank God we’re not in New York,” I said at the time, and I wasn’t alone: “We’re not in San Francisco, Los Angeles, Miami” — wherever. 1983, 1984, April, May of 1985 — was it only then that I understood, struck dumb with terror in the middle of traffic on Quai Voltaire, after a side trip to the sauna? “Darling,” a friend remarked, pointing to a boy we’d had sex with together, “if she doesn’t have it, nobody does” — something like that. And still I ran, had nightmares and ate flesh in the darkest of dark rooms. Death, somebody said, wasn’t the worst thing that would happen to me, only the last.

By the time I got tested in 1989 my counts were already down, and they started me right away on AZT. I went to Egypt, then Austria — or it may have been Spain and Denmark. I do remember Romania: I was there on assignment, monitoring the first post-communist elections and looking at the murdered Ceaucescus’ solid-gold toilet fixtures. Amsterdam, Budapest, St. Petersburg, Berlin, Vienna, Stockholm, Madrid, Monte Carlo — always, if I could, I went through Paris, where, on my 40th birthday, I had every hair on my body taken off by Tunisian ipileurs. Every single one, apart from a little tuft in the pubic region that was meant to rise out of my Speedo — “pour la plage, Monsieur.” I have no explanation for this episode, except that I wanted to see someone else when I looked in the mirror.

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Category: Film/Stage: She married into the Singer sewing machine fortune in 1909, although while unmarried she’d already caused a sensation in New York by performing pregnant in flowing, revealing Greek robes. When her children drowned in a car that rolled into the Seine, she left Singer and eventually married the poet Sergei Esenin, who left her after she bared her breasts and called them graceful art. For ten points, name this controversial performer who seduced a sports car driver minutes before catching her red silk scarf on the rear wheel and strangling herself in 1927.

– College Bowl Quiz, 1996

All wrong, all of it. In the first place, Isadora never married Paris Singer. Secondly, it was a shawl that killed her, as I said before, not a scarf — a big red shawl with foot-long fringes. And when her children drowned, she cut off her hair and threw it in the sea. “When real sorrow is encountered,” she said, “there is, for the stricken, no gesture, no expression. Like Niobe turned to stone.”

I left Vermont — for good, I thought — after signing for “Isadora,” got an apartment in the city and enrolled in a clinical trial at Bellevue: ACTG 175, the grandmother of AIDS combination therapy. It was a blind study; I took thousands of pills, but it turned out later I was on AZT the whole time, and the rest were placebos. Lucky for me, because when new drugs came along, it meant I’d developed resistance to only one medication. It meant I was in it for the even longer haul. And I did most of the research for “Isadora” in three frantic years.

From the beginning, I felt rushed and pushed. This is going too fast, I said, but only to myself. It was no one’s fault — my life was too fast, both because I made it so and because I was living, secretly, on borrowed time. Secrecy speeds up the clock. You’ve got to do it while you can, while you can — this played over and over in my head.

My contract with Little, Brown, much amended since, called for final delivery in 1995. I knew all along it couldn’t be done, even assuming that the author would live and be well enough to try.

“Isadora was no nonentity,” said George Bernard Shaw, “as I found when I met her” — an understatement only a giant could make. Artist, dancer, philosopher, radical, courtesan, teacher, divinatrice — when she wrote her own book in 1927, she told her publishers it would take at least 300,000 words and should be published in two volumes: “First: Memoirs of Youth. Second: Maturity. Kindly pardon me as I again repeat that the quality of my writing depends entirely on whether I have capital to write the book in peace of mind.” She didn’t, and stopped in the middle. American writer Glenway Wescott, in Nice that year with his lover, Monroe Wheeler, recalled:

She told me that it was the only thing she had ever done just for money, and she was ashamed, and having spent the money she could not give it up. It was worse than I knew, she said. Not only was the style poor and stilted, there was bad grammar in it. There had been many objections to her dancing, but there had been no bad grammar in that; and she wept. So I promised to come on the next Wednesday or Thursday and have a look. But when that day came she was dead, in the strangest automobile accident I ever heard of.

I didn’t crack until 1994, when I stopped caring what kind of drugs I was taking and nearly died of pneumonia at Lenox Hill Hospital in New York. I don’t remember how I got admitted to such a place; I lived nowhere near it, and I was delirious when my closest friend brought me there. The doctors said later that I had “the same pneumonia that killed Jim Henson,” creator of the Muppets, and that when I came in I was “six to eight hours from death.” I wondered how they knew. Only 25 more T cells lost and I’d have tipped over into “full-blown” AIDS. I had an affair with my roommate, who was full-blown already. We smoked cocaine and had sex standing up, hooked to IVs, wheeling our bags around.

When I left the hospital, I had another book that I’d agreed to write — short book, long story — and I got it done, by golly! I wrote, drove, scrambled, flew, drank, snorted, smoked, took pills, ran wild and broke friendships, whole alliances, to get it done. I honestly believe this saved my life, hard though it was for my family and friends to witness. “He who hopes to grow in spirit will have to transcend obedience and respect,” says the poet Cavafy. “Half the house will have to come down.” Or Heraclitus, speaking of Greeks: “It is the opposite which is good for us.”

Few understood what I was up to, and neither did I until after the fact. I only knew that I had to keep going and I didn’t care how it was done. Rumors flew, some partly true and the rest mostly false. When I was suddenly dumped from a high-paying magazine gig, where my earlier work had earned me nothing but mash notes from its blond, boyish, stinking-rich editor — “Marvelous! Fabulous! You’re a genius! Brilliant!” — I gave up on New York, crawling back to Vermont. It took a long time to get back on my feet, and I only began to feel some confidence again after my health rebounded on protease inhibitors and I met John Hannah, the man I love and live with now. And escaped drowning myself by the skin of my teeth.

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So Dougie is to issue a Biography of Isadora. Well, well — well — That’s easy — the difficulty is to write it as it deserves — as Montaigne or Byron would have written it.

– Edward Gordon Craig

I’ve kept that quote out of the book — wouldn’t you? Isadora wanted Cervantes for her biographer, and William Faulkner, after reading her memoirs, said that “Shakespeare himself could hardly have done that volume justice.” Nevertheless, I had to write something, sooner or later. Six chapters came out in 1996 — awkward, nervous and woefully incomplete, as I also felt myself to be in those days.

After six, I stopped. Was it money again? I don’t remember. Certainly it always came to that when my editor called. I’d told her everything by that time; she’s a brick, but every now and then she did have to ask — where was the book? I didn’t know. I began to get well on the new drugs, which were expensive and, frankly, mind-blowing, and about which I wrote a great deal. I took on the mantle and persona of “Lazarus” for a small but national audience, wrote columns about AIDS, went to Washington, that sort of thing. Being a spokesman for survival tired me pretty quickly and I quit it abruptly, angrily, “swearing never to desert Art for love again,” as Isadora put it — whereupon I met John, who now answers all questions of that kind. We like to say that we met sneaking cigarettes under the bridge to the 21st century.

In 1998 I went back to the book, buffed up my chapters and finished number seven, “Myth,” which follows Isadora Duncan to Athens and Bayreuth, where she turned the Wagner Festival on its head in 1904 and earned a reputation, not yet deserved, for licentiousness and debauchery. She was just about to meet the love of her life, English stage designer Gordon Craig, when my whole family came together in crisis, after my sister Barbara’s two daughters, who had been kidnapped by their father 20 years before, surfaced in Florida with their delinquent parent and refused to have anything to do with Barbara, or with the rest of us.

Before all the world, in a media circus, my sister was accused of crimes against the children she had lost, while their abductor, Stephen Fagan, now a convicted felon, became a hero in the eyes of many. I became “Kurth family spokesman,” a role with special perils, and one I found I couldn’t write about after the first shock and outrage had passed. I tried — I would have forsaken Isadora for it. But what came out was only bile, ugliness and obsession. I lost 18 months of work in that ordeal, and if those poor girls ever think again — but I won’t say it. I wrote about the death of Isadora’s children in a condition of perfect pain. “No,” she replied, when friends inquired if they could help, “there is nothing, nothing, nothing to do.”

By the time Y2K came and went without disaster, I’d written as far as “South America,” Chapter 19. Then I had another collapse, and another pneumonia, when 52 pills a day began to poison my body and mind and I broke with the doctor I once trusted — the same doctor who’d treated the Phantom in his final days. Hands down, this was the hardest thing I’ve ever done. I thought I’d die doing it — I thought it would kill me.

Now, I take seven pills for HIV, two in the morning and five at night, and suffer from the side effects my life-saving drugs entail. My hands and feet are numb and cold from neuropathy, my legs are weak and I have dangerously high cholesterol — I could die at any minute! AIDS, terror, airplanes, anthrax. “Always fire and water,” said Isadora, “and sudden fearful death.”

Five years ago, when I started on HAART — “highly active antiretroviral therapy” — I gave a talk on National Public Radio. I spoke about “the tranquility of hopelessness” and “the torments of optimism,” as if I really knew something about them. But if I have any advantage over other people, after 12 years of this awful thing, it’s that I’m used to being pitched forward, hurled into the next stage of life. And that’s exactly how it came: a summer night, a car in wrong gear, a dock with no rail, bottomless grief and presto! — I’m in the lake over my head.

Be aware that you can’t open a car door underwater — the pressure is too great. Try not to have electric windows, because if they aren’t down already, at least a little bit, as mine were, your goose is cooked. And remember that the mind plays tricks: I could have sworn I was floating in the air when it happened, looking down on my own demise. I know that I dove back into the water three times after I shimmied out, trying to pull the car up by its fender, and that when I finally realized it couldn’t be done, I was laughing — hysterically, in shock, but laughing, just the same. Heraclitus: “If you do not expect the unexpected, you will not find it; for it is hard to be sought out, and difficult.” In a certain way — and it took until now, believe me — I’ve never been afraid of anything again.

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I still haven’t filled out Little, Brown’s author questionnaire, quite simply because I don’t know how to answer: “Besides writing, what activities are you currently engaged in? Do you have any suggestions for promoting your book? Any personal media contacts? Is there anything in your book that you consider ‘newsworthy’?” Among the few reviews I’ve seen so far, one’s good, one’s bad and one’s dumb. The usual, but I don’t know what it means anymore — I’ve been away too long. When Fay Weldon recently announced that she’d taken money from Bulgari to promote its jewels in a novel, I suggested tying a Hermes scarf to every copy of “Isadora” and selling them together. For some reason, my editor never got back to me on that.

And there’s no ending to this story, either — you’ll have to forgive me. On a good day, I can look at my finished work, all 652 pages of it, and thank my stars it got done at all. Still, I make no sudden moves. I don’t ride in sports cars; I wear no shawls or scarves. “I do not doubt that someday someone will discover an instrument which will do for sight what radio does for hearing,” Isadora wrote, “and we will discover that we are surrounded, not only by sounds, but also and invisibly, to our eyes, by the presence of all that is no longer. The music and the voices that we hear do not cease to exist but travel in space indefinitely and in time attain other stars … Each word we speak, each gesture we make continues in the ether on an immortal voyage … In this survival only I believe, and that is sufficient.”

Peter Kurth, a regular contributor to Salon Books, is the author of "Isadora: A Sensational Life." He lives in Burlington, Vt.

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

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

(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

(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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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.

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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

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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