Helen Epstein is one of a rare species: the scientist turned storyteller, the specialist turned generalist. As she recounts in her illuminating new book, “The Invisible Cure: Africa, the West, and the Fight Against AIDS.” Epstein went to the east African country of Uganda in 1993 as an idealistic young Ph.D. after hearing a presentation on research problems raised by the spread of HIV/AIDS in Africa. She decided to abandon her research in San Francisco on obscure aspects of an obscure aphidlike bug and place her formidable skills in the service of the largest public health emergency in the world.
At some cost to her academic career, Epstein joined the race to discover a vaccine that immunizes people against HIV/AIDS. In the early 1990s, the virus was still spreading, especially in sub-Saharan Africa, and the disease was then considered a death sentence. Having volunteered to work on a vaccine, Epstein traveled to a cancer institute in Uganda, best known for the bloody rule of Idi Amin but also viewed as a Mecca for AIDS researchers because of the virulence of the virus there and the vigor with which Ugandans were fighting back.
Within a few months of arriving, Epstein was smitten with the extraordinary resolve displayed by Ugandans in the face of a roaring epidemic. Alone among African countries, Ugandans drove down the rate of infection in the 1990s through means that remain both controversial and misunderstood. Epstein was only dimly aware of Uganda’s achievement as it was unfolding around her, and years later, when she returned to the country, she wrote, “I felt like a pilgrim exploring a place where a miracle was said to have occurred long ago. Everyone had a different story about it and half the evidence was missing.”
Piecing together an explanation for how (and to what extent) Uganda rolled back AIDS is one engine of Epstein’s narrative. The other is the repeated folly of foreign-aid donors and the very experts who intervene with scant effectiveness. Her blunt, informed critique of the attempt by Westerners to save Africa from AIDS begins with herself: Epstein’s own vaccine project is a failure. Analyzing strains of HIV/AIDS among Ugandans, she finds many types: not the answer her American sponsor — the drug company Chiron — wants to hear for the simple reason that the more varied the virus, the more difficult to craft a vaccine. Chiron asks Epstein to study her disease samples more closely, but the samples get lost in transit — and with them Chiron’s funding for further vaccine research.
Epstein’s pursuit of an AIDS vaccine didn’t last long, but her African expedition changed her life. She has worked extensively in Africa (where HIV/AIDS remains the biggest killer) ever since. And her engagement with the epidemic never ended.
- – - – - – - – - – - – - – - – -
Epstein first came to notice as a writer of trenchant essays on HIV/AIDS for the New York Review of Books. Her background as a molecular biologist gave her the scientific chops to “decode” the mumbo jumbo surrounding the medical aspects of the disease. But she also had a flair for describing the social context surrounding the illness — and the courage and honesty to critically scrutinize the way aid donors, such as the Bill and Melinda Gates Foundation, the U.S. government and the United Nations, as well as global pharmaceutical companies, dominated the public health response to AIDS, both technically and financially. Because of Epstein’s incisiveness, “The Invisible Cure” has been eagerly awaited. And the book does not disappoint.
As Epstein’s title suggests, she is a skeptic about the entire international response to HIV/AIDS. “Much of this book is concerned with donor-funded AIDS programs that failed in some way, beginning with my own vaccine project,” she says early on. “I tell these stories not with a sense of satisfaction. I could not have done better myself at the time. But in science, failures are often as important as successes, because they tell us where the limits are. Only by looking honestly at our mistakes can we hope to overcome them.”
In many ways, Epstein is telling an insider’s story of technocracy, how a closed community of experts try to deliver a “silver bullet,” a one-size-fits-all cure for a many-headed, diverse menace. Her writing is indeed a form of therapy for misguided experts who either ignored or dismissed or merely failed to comprehend Africans and the context of their lives. These experts, Epstein shows, were not selfless interveners, either, but part of an international business — a kind of AIDS Inc. — that avows to serve ordinary Africans and too often benefits chiefly foreigners. In a telling meeting with a Ugandan doctor, she recounts the common view among Africans that there are only two types of AIDS: the “slim AIDS” that afflicts (and ultimately kills) them and the “fat AIDS” that “afflicts doctors, bureaucrats, and foreign consultants with enormous grants and salaries.”
Epstein — virtually alone among popular writers on the subject — treats people with “fat AIDS” with cynicism and outrage. For them, “AIDS is a career move, an adventure, an experiment,” she writes.
Fighting AIDS in Africa is messy, confusing and often irrational, which makes Epstein’s reliable tour so valuable. With great discipline, humility and verve, she eschews both sob stories (of dying Africans) and praise songs (of devoted foreigners, contemporary Schweitzers) and instead carefully dissects the tactics used in the many battles she witnessed in the African AIDS war.
War stories of this sort can often have the feel of a special pleading, as if the author were out trying to settle old scores whose import (or even existence) few can remember. Epstein avoids this common pitfall, adopting a clear, honest voice that is as unsparing toward herself as toward others. Drawing partly on the techniques of travel writing, and mustering some of the zeal of a muckraker, Epstein fashions a unique account of one of the most hashed-over stories of our generation. In her hands, the subject is fresh, surprising and, perhaps most important, understandable in plain English.
Epstein is especially good on the two questions that have bedeviled others who have grappled with the topic. Why did AIDS begin in Africa? And why has the disease hit eastern and southern Africa so much harder than virtually everywhere else in the world?
Her answer to the first question is succinct: HIV/AIDS jumped from chimpanzees to hunters in central and eastern Africa, as the latest research proves. Why, Epstein asks, if “Africans have been killing and eating monkeys for at least 50,000 years,” did doctors not spot anything like AIDS there until the 1960s? Much like the great historian of Africa, John Iliffe, in his excellent 2006 book, “The African AIDS Epidemic: A History,” Epstein convincingly presents “the possibility that new medical technologies introduced into Africa in the early 20th century [notably the widespread use and reuse of needles to deliver vaccinations in inoculation campaigns] sparked the global AIDS pandemic.”
Epstein’s discussion of why AIDS is so severe in eastern and southern Africa is also illuminating. She cites strong evidence that Africans are “not more promiscuous than heterosexual people in other world regions.” Instead, Africans in these two subregions tend to have “concurrent” relations with a small number of people. The pattern gave rise, Epstein writes, “to a stable interlocking sexual network that served as a ‘superhighway’ for HIV.” In Uganda, widespread encouragement of “zero grazing” (no sex outside a single partner) proved crucial in rolling back the disease, providing evidence for one of Epstein’s central propositions: “When it comes to fighting AIDS, our greatest mistake may have been to overlook the fact that, in spite of everything, African people often know best how to solve their own problems.”
As method or rhetoric, zero grazing never gained favor with international AIDS experts — who instead put their weight behind campaigns for condom use, abstinence and frequent testing — and the failure of this African concept to carry the day illustrates a wider failure to understand AIDS in African terms.
In the end, Epstein’s subject is not just a scary disease but sexual and social relations between men and women in Africa. And her final indictment remains troubling and still all too accurate: Outside experts fail to grasp the social web in which the disease lives and thus continue to fail in their efforts to roll back AIDS.
The closest Epstein comes to identifying a single solution is in her section on the growing awareness that circumcised men are much less likely to contract HIV than are uncircumcised men. The popularity of circumcision among west African men may explain the relatively low rate of HIV in this subregion. In asking whether male circumcision is “a magic bullet after all,” Epstein underscores another paradox: that a low-tech social tradition provides more protection against AIDS than high-tech, high-cost and imported medicine.
Epstein offers scant other solutions beyond urging outsiders to make more space for responses crafted by Africans themselves. Her advice is worth noting, especially since spending on AIDS in Africa, as Laurie Garrett recently highlighted in an article in Foreign Affairs, is soaring. Increased funding for AIDS will only compound past mistakes, Garrett argues. Epstein is similarly concerned that in the coming explosion of international funding to fight HIV/AIDS in Africa, past errors will replicated as foreign donors mistake the size of the checks they write for their potential to help ordinary Africans.
Ultimately, “The Invisible Cure” concludes that success in the war on AIDS in Africa “depends critically on a sense of commitment and will” on the part of Africans. Epstein is right, once again. Yet her conclusion is sobering for those rooting for a quick end to suffering in sub-Saharan Africa. In a timely warning to foreign do-gooders with fat checkbooks, Epstein suggests that an African commitment to fight AIDS effectively “cannot be bought.” Instead, victory must flow out of a rebirth of African self-reliance. Yet if outsiders cannot supply a quick fix to what ails Africa, and Africans themselves must shoulder the heaviest burden, the spectacle of AIDS devastation is likely to persist for years to come.
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.
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.
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.”
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.
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
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.”
(Credit: Reuters/Yiorgos Karahalis) 
(Credit: jocic via Shutterstock) 
