AIDS

The AIDS-drug warrior

Activist Jamie Love says pharmaceutical companies must be forced to yield their patents to save hundreds of thousands of lives. Is he a visionary -- or a dangerous radical?

Every day a new headline emerges touting a victory in the global fight against the AIDS epidemic. One day, a pharmaceutical company announces it will deeply discount its drugs for the African market. The next, Yale University and Bristol-Myers Squibb announce they will no longer enforce their patent on an AIDS drug used in HIV-ravaged South Africa. Then 39 companies abruptly withdraw their lawsuit against the South African government over a 1997 law that would make it easier for the country to produce generic versions of patented drugs or import brand-name drugs from other countries to sell at cheaper prices.

All good news, right?

Wrong, says Jamie Love. It’s just slick humanitarian-flavored spin.

For Love, one of the leading — and most outspoken — activists on the front lines of the AIDS-drug pricing wars, the real issue is that the major pharmaceutical companies still maintain control over who can manufacture their patented drugs and how much they cost. As the head of the Ralph Nader-founded Consumer Project on Technology, Love has been trying for years to persuade governments in developing nations to wrest control of AIDS-drug policy and pricing from the pharmaceuticals. Love argues that by issuing so-called compulsory licenses that would allow generic drug manufacturers to create cheap and ubiquitous versions of AIDS drugs, developing nations would drive down the cost of raw materials, increase competition and make the drugs more widely available.

Love is unimpressed by the fact that pharmaceutical companies, pressured by public opinion and media coverage, have taken positive steps to make AIDS drugs cheaper and easier to get. In almost every case, as he points out, they are simply dropping prices or just giving the pills away rather than granting licenses for local manufacture. And he doesn’t believe that corporate largess alone will be enough to stave off one of the worst epidemics in human history.

Love has been engaged in the drug intellectual property debate since the early ’90s. His absolute and uncompromising pursuit hasn’t won him any friends in the pharmaceutical industry or in bureaucrat-magnet Geneva: He accuses officials in the nongovernmental organizations (NGOs) that control the global AIDS agenda of being lazy, timorous salary collectors who go out of their way to protect the interests of pharmaceutical companies.

More fundamentally, Love denies that the pharmaceuticals even own the rights to the drugs in the first place. He points out that many of the anti-retroviral drugs used to treat HIV and AIDS today stem from the government-funded cancer drug research of the 1980s. The rights to government-created innovations were sold to pharmaceutical companies at low prices (not at the astronomical rates demanded in recent airwave spectrum auctions, for example), guaranteeing companies like Bristol-Myers Squibb huge returns on investment. Given the public investment in these drugs, Love doesn’t believe drug companies have the moral authority to determine who can or can’t access them. And the fact that thousands of people in Africa continue to die because they can’t afford the drugs adds urgency to his argument.

Love’s position that Big Pharma doesn’t own its medicines is an extension of his earlier work on cancer medicine patents. In 1991, he testified before Congress about a patent agreement between the federal government and Bristol-Myers Squibb that allowed the company to extend its patent protection for the cancer drug Taxol. The drug was invented by the National Institutes of Health’s National Cancer Institute — and it brought the drug company $1.6 billion a year in profits. Scrutiny led Congress to demand better accounting of the relationship between government-funded operations and pharmaceutical companies to determine whether the government was getting an adequate return on its investment. The Taxol case turned out to be a major precedent, since government funds have also been used to create other drugs for cancer, AIDS and other chronic or life-threatening conditions.

“Jamie, it seems to me, starts from a simple but hard-to-refute premise,” says New York University journalism professor Merrill Goozner, who covered the drug industry as a reporter for the Chicago Tribune for years. “If the taxpayers paid for the development of the intellectual property, then they ought to get some kind of return on their investment when that I.P. turns out to be a significant scientific advance that leads to new products.”

The biggest hurdle in the way of compulsory licenses are strict international intellectual property laws, which protect the patents and the bottom lines of pharmaceutical companies and thus encourage them to continue investing the millions in research required to develop new medicines. Western countries, led by the United States, have fought strenuously on the international front to protect those patents — in effect, placing a greater value on intellectual property, in the name of spurring innovation and saving more lives in the future, than on saving lives currently at risk.

Increasingly, those battles are pitting industrialized nations against developing countries. Ninety-five percent of the world’s HIV and AIDS cases are concentrated in developing nations, with the vast majority dying in Africa, but Africa comprises a minuscule 1.3 percent of the global pharmaceutical drug market. The World Health Organization estimates that only 10,000 to 25,000 of the 25 million HIV-positive or AIDS-infected people in Africa have access to the drugs they need.

Such dreadful statistics raise profound questions about how strict drug patent laws should be — and explain Jamie Love’s fixation on compulsory licensing. Compulsory licensing allows governments to suspend intellectual property laws — either because they’re impractical or because they interfere with a country’s ability to deal with a health crisis. “I believe developing countries should be permitted to embrace weak levels of intellectual property protection on medicines, and specifically either exempt essential medicines from patent protection or use compulsory licensing liberally,” Love recently told participants of a joint WHO/WTO meeting on intellectual property in Norway.

In fact, Love goes further: He believes pricing controls should be applied to essential drugs not just in the developing world but in the United States and other industrialized nations as well. He also calls for limiting patent protections for biomedical innovations.

It’s this kind of quasi-socialist thinking that scares and angers conservatives, pharmaceutical companies and the politicians on Capitol Hill they funded to the tune of $26 million during the last election. In a recent article on the Wall Street Journal’s editorial page, public health policy expert Robert Goldberg accused Love of being “more interested in eliminating profits from the pharmaceutical industry” than in eliminating AIDS. Calling Love’s organization “selfish,” Goldberg charged that pursuing Love’s policies would “suck profits out of companies and eliminate research funding.”

Not surprisingly, AIDS activists take a more positive view of the work of the fiery Love. “Jamie has played a pivotal role in establishing the framework of much of the treatment access campaign,” says Kate Krause of the HealthGap Coalition and ACT-UP Philadelphia. Krause attributes the recent round of brand-name drug discounts in Africa to Love’s work with Indian generic-drug manufacturer CIPLA. “He has been among the first to investigate issues that no one touches, such as drug company costs; and realizing that the stakes are so high, he makes audacious demands of the drug industry.”

Journalism professor Goozner says that while Love is only one of hundreds of activists dedicated to the AIDS fight, “he’s an awful important player.” He notes that Love’s Internet list-serv, where he posts virtually every significant news story and government report on intellectual property issues in the healthcare field, “knits that entire community together and serves as a forum for instantaneously keeping it informed of the latest and most significant developments.”

“He’s a tireless lobbyist in the cause,” Goozner says, “traveling to all the major meetings around the globe and firing off instant e-mails to those not in attendance … That he does it for a fraction of the pay of the hundreds of industry flacks and bureaucrats arrayed against him, yet exposes them at their own game time after time, never ceases to amaze me. I won’t say that forcing the drug companies to back off in South Africa is his greatest victory, because it wasn’t his alone. But it’s hard to imagine it would have happened as soon as it did without him.”

Love is a blue-eyed firebrand whose silver-streaked locks of brown hair are the only thing that hint at his 51 years of age. The day I visited Love’s modest digs at the Carnegie Foundation offices in Washington — Love’s operation runs on a fraction of the budget of most NGOs involved in AIDS policy — he had just returned from yet another trip to Europe, where he attended an international meeting on AIDS and intellectual property. He took me on a quick tour, through a fortress of bookshelves and metal filing cabinets, where he gave terse orders to colleagues and tried to make the world of intellectual property policy more thrilling for a reporter.

Love explained that he is pursuing a three-part strategy in his push for compulsory licensing, with South Africa as the centerpiece. First, he’s working with CIPLA, the generic drug manufacturer, to demonstrate what it actually costs to manufacture AIDS drugs: Love and CIPLA claim that it costs less than $1 a day to manufacture a three-drug cocktail for one patient. Second, he’s turning to the private sector, lining up the international mining company Anglo American and healthcare providers to demand compulsory licenses from the South African and other governments. Finally, if those licenses are issued, he will work with CIPLA to get drugs to the corporations and healthcare providers that want to provide them to their employees and patients.

The foundations of Love’s compulsory licensing push were laid in 1997, when the South African government passed a law that would make compulsory licensing and parallel importing easier. (Parallel importing is the practice of purchasing drugs from a third party in another country instead of directly from the manufacturer. It’s cheaper because pharmaceutical companies usually charge lower prices in poorer countries.) The United States, under the stewardship of then-Vice President Al Gore, pressured South Africa to abandon or revise the legislation, and the pharmaceutical companies sued. In 1998, the South African government backed off, saying it would not issue compulsory licenses. Then, in March, a month before the trial was slated to begin, it also said it would not seek to do parallel imports. A month later, the pharmaceutical companies dropped their case against South Africa.

It’s been over a month since the case was dismissed. Unwilling to take on a difficult legal battle against the South African government, few companies have stepped forward to demand licenses to produce generic versions of AIDS cocktail drugs: Only CIPLA and Aspen Pharmacare, South Africa’s largest generic drug manufacturer, have attempted to do so. Meanwhile, drug companies have been slashing their prices — in order to discourage South Africa from succumbing to the temptation of compulsory licensing. But he says they haven’t dropped them to rock-bottom production cost, and working with CIPLA, he has numbers to prove it.

The pharmaceutical GlaxoSmithKline, for example, announced on June 11 that it would discount Combivir — a two-drug combination — to $2 a day for governments, charity organizations and NGOs in Africa. CIPLA, however, has offered the same drug combination of Lamivudine and zidovine plus a third drug, nevirapine, for between 96 cents a day for nonprofits or $1.64 for governments — at a low-end cost of $350 a year, as much as 50 percent less than Glaxo’s lowest bid, according to the World Health Organization.

Given these numbers, in a situation where even pennies more in cost mean lives lost, Love keeps hammering away on the generic-licensing theme. And he’s lined up some heavy hitters in the private sector to back him: The international mining company Anglo American, the largest mining company in South Africa, has proposed supplying as many as 50,000 of its HIV-positive employees with generic drugs made by CIPLA. In March, CIPLA registered a request with the South African government for a compulsory license for the key drugs it needs to produce the cocktail. The company expects a prolonged legal battle with the government.

Love turned to the private sector in part because of his frustration with the South African government’s slow response to the AIDS crisis — a frustration born of his experiences during the South African trial, when he served as an advisor to the Health Ministry, a party to the suit. South Africa’s hesitations and missteps on the issue are well-chronicled. President Thabo Mbeki has expressed concerns about the safety of cocktail treatments and even questioned publicly, to international dismay, whether HIV is the true cause of AIDS. The South African government has so far refused to declare the AIDS crisis a national emergency — although a staggering 4.7 million South Africans are infected. And it has been reluctant to issue compulsory licenses or support proposals like Love’s. In a recent interview with the U.K. Guardian, South African Health Minister Manto Tshabalala-Msimang said: “To be frank … we haven’t thought it through.” In her Guardian interview, Tshabalala-Msimang asked the reporter whether Anglo American, the company that Love is working with to distribute anti-retrovirals to its workers, would provide the families of its miners with access to the drugs and also what effect the heat in the mines would have on workers taking the drugs. These were not questions that inspired confidence that the minister was fully informed.

To be fair, the South African government also has a more legitimate reason for its ambivalent attitude toward drug treatment: Proper use of retrovirals requires a healthcare infrastructure that the country lacks. Anglo American has a better chance of efficiently delivering and administering the drugs — which is another reason Love is optimistic about private initiatives. Lending credence to his position is the decision made by auto giant DaimlerChrysler earlier this week to provide anti-HIV cocktail treatments to employees and their families, totaling as many as 23,000 patients.

Mention the global AIDS bureaucracy, centered in the U.N. organization UNAIDS and spread through innumerable NGOs, and Love scoffs derisively. “I pitched this private-sector stuff because if you sit around and wait for these assholes at the U.N. agencies to get their acts together, a lot of caskets are going to go into the ground,” he says. “They’re not men of action. They’re followers, not leaders. There’s no leadership taking place at the U.N. agencies. There’s a lot of great pensions that are coming down. There are some high salaries being paid and sumptuous meals being consumed and business-class tickets being given out. But I have to say: Leadership? No, I’m sorry. I mean, this is Basic 101 stuff. What are we doing? We’re figuring out how much it costs to manufacture drugs, we’re figuring out how you can solve the intellectual property problems, how you can solve the drug registration problems. We’re trying to get people to act,” he says.

Love isn’t impressed when I point out that UNAIDS has met with CIPLA, and that international organizations monitoring essential drug pricing routinely cite CIPLA’s quotes in their comparison charts. “When things are on the front page of the New York Times, they have to acknowledge them,” he says, raising his voice. “They haven’t been the people pushing compulsory licensing. Instead, they’re the ones making the big bucks. And that’s wrong because they’re the ones with the big megaphone and the big voice.”

The United Nations recently announced that it would create a $7 billion superfund to fight AIDS, malaria and tuberculosis. Details of that plan are expected to be announced at a U.N. General Assembly meeting on the AIDS crisis in New York next week. But Love has little confidence that the money will be used in the most effective way.

Officials from the United Nations and global AIDS organizations, for their part, say that activists like Love, fixated on treatment, ignore the crucial element of prevention. Instead of emphasizing widespread administration of AIDS cocktail treatments, organizations like WHO and UNAIDS have stressed education and prevention programs, which are easier to administer and potentially have the most long-term impact. Pieter Piot, the famous Belgian epidemiologist who helped identify the Ebola virus and is executive director of UNAIDS, recently described his view for how the U.N. plan should work in the New York Times: “We feel strongly that the response to AIDS has to be a balanced one: prevention and treatment. In the current climate, people forget that. I’m really getting tired of the fact that a terribly complex problem of treatment and care for people having H.I.V. is reduced to the price of anti-retroviral drugs.”

Those are exactly the kinds of statements that raise Love’s ire. “Are we supposed to say that since we can’t save all of them, we’re going to let them all die? That’s an appalling, racist attitude. We’re going to do all we can to save them,” he says. “We make our little contribution on the intellectual property side and you’d think we’d raped Queen Mary.”

Love says that when famous AIDS bureaucrats like Piot criticize his work, they fail to see the forest for the trees. He says that what he and his organization are doing is just one part of the puzzle, though admittedly one that’s currently getting a lot of attention. “We’re not saying prevention’s not important. We don’t campaign against those things — everyone knows those are important.”

What of the argument, proferred by pharmaceuticals and the South African government, that sloppy distribution and administration of cocktail drugs not only undermine their effectiveness but could lead to more resistant strains of HIV — that it would be more effective to focus on HIV education and prevention, and on use of the drug AZT, which can reduce transmission of the virus from mothers to babies? Such arguments were recently echoed by the Bush administration’s highest-ranking foreign aid official, Andrew Natsios, who told the Boston Globe that monies given to the United Nation’s new AIDS superfund should be used almost exclusively for prevention.

In his comments to the paper, Natsios cited poor medical infrastructure and a lack of familiarity with Western ways, including the ability to tell time effectively enough to administer cocktail treatments. “You have to take these [AIDS] drugs a certain number of hours each day, or they don’t work,” Natsios told the Globe. “Many people in Africa have never seen a clock or a watch their entire lives. And if you say, one o’clock in the afternoon, they do not know what you are talking about. They know morning, they know noon, they know evening, they know the darkness at night.”

Love joins other AIDS activists (and New York Times columnist Bob Herbert, who accused Natsios of perpetuating stereotypes about African culture) in rejecting the argument that anti-retrovirals are too complex to be effective in Africa. He points out that combinations of different medicines now enable HIV patients who have access to such pills to take as few as four pills each day. This treatment regimen is currently being used on HIV-positive homeless both in San Francisco and in South Africa, where Doctors Without Borders is providing cocktail treatments to one village.

The real issue, Love says, is price. And by teaming with CIPLA, he is attempting to prove that AIDS drugs can be made affordable, even in impoverished nations like South Africa. In CIPLA, Love found a company willing to stick its neck out — and take the heat for doing so. When CIPLA made headlines around the world by quoting $350, the lowest cost ever for a three-drug anti-HIV cocktail, the pricing came as the result of Love’s negotiations with CIPLA CEO Yusuf Hamied — the generic drug mogul who has become a huge thorn in the side of the pharmaceutical giants with his rock-bottom pricing. It was a watershed moment for international activists fighting for inexpensive access to AIDS drugs. Even the international organizations Love scoffs at cite the figure as a standard in international drug pricing.

“It shocked everyone and blew up in smoke the idea that the pharmaceutical companies were making donations,” says Love. “It was a third of the best prices you could get out of the branded guys in what they thought were donations.”

Not surprisingly, the action didn’t exactly elicit praise from the pharmaceutical industry. At a recent industry conference GlaxoSmithKlein CEO Jean-Pierre Garnier described CIPLA as price-undercutting “pirates,” and said the company “is not doing this to get a Nobel prize.” CIPLA’s Hamied responds to such criticism by saying, “Indeed, we are a commercial company. But I market 400 products in India. If I don’t make money on a half-dozen of them, it’s no big deal. I don’t make any money on the cancer drugs we sell or drugs for thalassemia, a blood disorder that’s common in India. We sell these drugs virtually at cost because I don’t want to make money off these diseases which cause the whole fabric of society to crumble. India alone will have 35 million HIV cases by 2005, and it’s something we can’t afford.”

In fact, CIPLA needs to make a profit, however tiny, to demonstrate that the pharmaceutical companies can lower their prices dramatically and still turn a profit on AIDS drugs in developing nations like South Africa. Although the margins are razor-thin, Love says CIPLA will be able to turn a profit on its generic AIDS drugs in South Africa and wherever else it is able to sell them. But to make that profit it will need to get a compulsory license from the government — otherwise, it won’t have a market. Love believes that if the license is granted, a private medical infrastructure can be gradually built, making treatment possible for thousands. And successes in the private sector will increase pressure on South African and other governments to act, Love says.

“At a certain cost, the private sector and people can pay out of their own pockets for drugs. We’re interested in those cases,” he says. He also claims that competition among generic-drug manufacturers could push the price even lower than what CIPLA is offering. “We could get to $250 within a year,” he says.

To bolster that argument, he cites Brazil, where looser intellectual property laws have allowed local manufacturers to produce generic cocktail drugs. The country has a highly developed healthcare infrastructure for a developing nation, and provides treatment to more than 100,000 HIV-positive and AIDS patients. Love, who is a Princeton-trained economist, estimates that the demand for the raw materials in the cocktail drugs in Brazil has reduced their cost from $10,000 per kilo three years ago to $700 today.

In other words, the competition among generics is driving prices down. That’s the sort of economy of scale that Love hopes will be reproduced in South Africa and, later, in industrial nations in Europe and the United States. But with big pharmaceutical companies attempting to undercut compulsory licensing by negotiating with employers and healthcare plans in South Africa to sell them their drugs directly, the question is whether Love and Hamied can outfox the global corporations. So far they have — at least in terms of pricing.

“People have been trying to deal directly with the pharmaceutical companies for years,” says Love, addressing the differences between what CIPLA and the Consumer Project on Technology are trying to do and the ambitions of Aspen Pharmacare, the South African generics company that is seeking licenses directly from the patent holders. “The drug companies want to avoid compulsory licensing because it’s the big stick. If you give a voluntary license, that pulls the rug out from beneath generic-drug manufacturers like CIPLA.”

Even if Love fails in South Africa, there are more fronts in the compulsory licensing battle. As part of its anti-AIDS initiatives, CPT has been developing model legislation countries can use to pass their own laws making compulsory licensing easier and more efficient. The first is likely to be Brazil, which flouted American pressure and issued its own compulsory license for AIDS drugs.

CPT is pressuring the Bush administration to drop the intellectual property rights action it recently lodged against the Brazilian government with the World Trade Organization. The dispute stems from a Brazilian law that permits local companies to manufacture generic versions of a drug if the company holding the patent does not produce it in that country. Though the U.S. government believes the law is protectionist, it has allowed Brazil’s local manufacturers to produce widely distributed generic AIDS drugs. It’s the kind of success that Love likes to cite when pressing his case for compulsory licensing. But the legal dispute could go on for years.

The U.S. was able to file the complaint under the TRIPS (Trade-Related Aspects of Intellectual Property Rights) provision of the WTO agreement, which requires strict drug patents in all member nations. In fact, however, the U.S. is complaining about the local-producer provision of Brazil’s patent law. If Brazil had declared a public health emergency, it could have legitimately issued the compulsory license for the drugs and the U.S. would have no case. CPT researchers identified three European countries with similar local production provisions. “If the U.S. wants to establish a precedent, why is it suing Brazil? Why don’t they just sue Greece, Ireland or the Netherlands?” Love asks.

According to Love, the Clinton administration wasn’t any better than the Bush White House. Al Gore was often criticized for his heavy-handedness in dealing with South Africa as its legislature moved toward passage of its patent law in 1997. And Love says Clinton’s trade representative often sought unilateral intellectual property agreements with countries that provided even less wiggle room for compulsory licensing than TRIPS.

In the end, the underlying issue raised by Love’s crusade is the ethics of compulsory licensing. The most common argument against compulsory licensing is that taking away the right of pharmaceutical manufacturers to set prices in a given market serves as a disincentive for them to invest the $500 million in research and development costs necessary to create a new drug (a figure widely quoted by the Pharmaceutical Research and Manufacturers Association). It’s an argument that can’t be easily dismissed when talking about the developed world. No doubt, if American and European patients demanded the same generic drugs and low prices — a stance Love has endorsed — profits would be severely threatened. But with the minuscule size of pharmaceutical markets in developing countries, the argument doesn’t hold much weight.

In an attempt to address these profit-incentive concerns, Yale economist Jean Lanjouw laid out a possible third way of addressing the intellectual property problem in a report for the Brookings Institution released last week. In effect, Lanjouw’s proposal would require pharmaceutical companies when applying for intellectual property protections to choose between getting patent protection in industrialized nations or developing nations. Under that solution, patents for all new AIDS drugs would likely be protected in places like the United States or Europe, but generics could be produced in poorer nations where the demand is high but the market small. In contrast, a research-based pharmaceutical company could choose to protect a patent for a malaria drug in developing nations, where cases are clustered, rather than the U.S. or Europe, where there are very few cases.

“Neither price controls nor compulsory licensing offers what the proposal here was designed to provide  a feasible way to allow competitive pricing in some areas while keeping in place incentives for private firms to invest in research on diseases specific to poor countries,” Lanjouw wrote in her policy paper. She argues that the current proposals for compulsory licensing are “indiscriminate” and could serve as disincentives for pharmaceutical companies to produce new drugs.

With typical frankness, Love dismisses Lanjouw’s proposal as “stupid,” not to mention possibly unconstitutional. “It’s based on the idea that somehow, it’s legally possible for countries in the north to take away the rights of their own companies to enforce patents in the south.” Nonetheless, Lanjouw’s proposal has attracted the interest of the World Bank, the United Nations and the Treasury Department, which are all said to be studying it.

Meanwhile, the death toll mounts. And those who believe in compulsory licensing, or weaker intellectual property laws for drugs in developing countries, like to cite the case of Jonas Salk, the inventor of the polio vaccine. As the ancient scourge of polio was rolled back by his vaccine 50 years ago, Salk was asked why he never took a patent out on the medicine — a patent that would have made him wildly rich. “There is no patent,” he replied. “Could you patent the sun?”

Daryl Lindsey is associate editor of Salon News and an Arthur Burns fellow. He currently lives in Berlin and writes for Salon and Die Welt.

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

View the slide show

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

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

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

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

View the slide show

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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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