By Ross Benes
International organizations have repeatedly deceived donors to ensure ever more funding for AIDS-relief efforts. In the mid-1990s, large NGOs and U.N. agencies began to overestimate infection rates and create heart-rending but misleading storylines to imply that general populations across the world were on the verge of HIV outbreaks.
In some ways, the strategy worked. Billions of dollars flowed to these groups, and they helped treat millions of individuals with AIDS. But their false narratives distorted the world’s understanding of the crisis. While pharmaceutical companies and giant nonprofits benefited, money was steered away from programs where it could have been most effective.
Epidemiologist Elizabeth Pisani, a former consultant to groups like UNAIDS and the Centers for Disease Control and Prevention, helped craft some of these reports designed to dupe the public. In her book, The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS, she writes that she contributed to a UNAIDS publication that promoted the “innocent wives” thesis, which argues that the virus spreads from high-risk groups primarily by promiscuous men having sex with their faithful spouses. The report stated, “The virus is firmly embedded in the general population, among women whose only risk behavior is having sex with their own husbands.”
This generalization came from one small study in Pune, India. Women who participated in the study were tested for HIV and other STDs and then were given questionnaires to gather demographic and sexual behavior information. The conclusion that women were likely being infected by their adulterous husbands, though, is based on skewed data—the sample was entirely made up of women who visited STD clinics. Their situation doesn’t necessarily represent the “general population.” But Pisani and her colleagues deliberately wrote the document to suggest that HIV was harming scores of Indian wives. As she puts it:
We weren’t making anything up. But once we got the numbers, we were certainly presenting them in their worst light. We did it consciously. I think all of us at that time thought the beat-ups were more than justified, they were necessary. We were pretty certain that neither donors nor governments would care about HIV unless we could show that it threatened the “general population.”
The organizations that Pisani worked for constructed emotional stories and often ignored statistical validity. In one case, an already flawed study suggested that 8 million Indonesian men buy sex every year. Using the innocent-wives theory, Pisani and her colleagues intimated that this could lead to millions of infected spouses. In reality, their own estimates showed only about 16,000 Indonesian women were potentially at risk in the scenario, since most of these men had neither a wife nor HIV.
Despite evidence demonstrating that women in some countries infect their husbands about as often as their husbands infect them, the innocent-wives narrative is backed by compelling anecdotes of women being wronged by devious, philandering men. Stories of victims elicit strong emotions and can open checkbooks for AIDS groups, marketing firms, condom producers, and pharmaceutical companies. Even though reality differs from the narratives of cheating husbands or a “disease of poverty” best curbed with more outside resources, it’s in the interest of AIDS groups to sell stories of helplessness.
Regarding how the international AIDS relief community has functioned in the last decade, Daniel Halperin, a former senior HIV prevention and behavior change adviser for USAID, and Craig Timberg, the former Johannesburg bureau chief for The Washington Post, write:
More alarm, and more politically appealing victims, meant more programs, more staff, more money. … If AIDS was not just a public health problem but also a substantial development issue, the World Bank and the United Nations Development Program had a claim to rival the WHO’s original one. If its list of victims included children, so did UNICEF. Soon UNAIDS became like a snowball tumbling downhill.
Overstating the global AIDS threat has helped keep money pouring in. By the late 1990s and early 2000s, it became clear that some researchers’ fears of AIDS rampaging through most of the world’s general populations would not be realized. Even though population-based surveys showed HIV rates declining, UNAIDS continued to tell the media that the epidemic was getting worse. James Chin, former chief of surveillance for the World Health Organization’s Global Program on AIDS, told Timberg, “It’s pure advocacy really. … They keep cranking out numbers, that, when I look at them, you can’t defend them.”
In a 1996 Science article, executive director of UNAIDS Peter Piot implied that one in three adults in many African and Asian cities could have AIDS. Giving a keynote lecture at an AIDS conference in Manila one year later, Piot warned, “HIV will cut through Asian populations like a hot knife through cold butter!”
For years, Piot issued dire statements based on exaggerated statistics. At a 2004 lecture at the Woodrow Wilson Center in Washington, D.C., Piot said, “The situation we face in China, India, and Russia bears alarming similarities to the situation we faced 20 years ago in Africa. The virus in these populous countries is perilously close to a tipping point. If it reaches that point, it could transition from a series of concentrated outbreaks and hot spots into a generalized explosion across the entire population—spreading like a wildfire from there.”
When Piot made those assertions, rates in Asia were nowhere near what he suggested. What, then, inspired him to make such claims? It may have to do with one of the “key challenges” to fighting AIDS, as identified in the summary of another Science article he co-authored: increasing global funding. As Piot issued his warnings, annual global AIDS spending increased from $292 million in 1996 to $1.6 billion in 2001.
As the AIDS industrial complex grew, bureaucracies stuck to initiatives that could produce evidence justifying their own existence. Some researchers worried this crowded out inexpensive, homegrown African solutions. According to Helen Epstein, cheap and effective campaigns aimed at reducing sexual partners are unlikely to resurface for several reasons:
For one thing, there is no multimillion-dollar bureaucracy to support it. For condoms, there are the large contractors like PSI [Population Services International] with headquarters in Washington and thousands of employees in plush offices all over the world. Abstinence-only education is supported by a similarly well-endowed network of faith-based and abstinence-only education organizations, mainly in the U.S. … Now that AIDS is a multibillion-dollar enterprise, donors with vast budgets and highly articulate consultants offer health departments in impoverished developing countries a set menu of HIV prevention programs, which consists mainly of abstinence and condoms. Beleaguered health officials have no time, money, or will to devise programs that might better suit their cultures.
For years sounding the alarms drove donations, but around 2007 UNAIDS acknowledged that new HIV infections had been declining worldwide for nearly a decade. Previous claims by UNAIDS that there were 42 million people with HIV, and rising, were false. The organization admitted that, in fact, 33 million people worldwide were HIV-positive, and the number of people infected appeared stable. By then, $10 billion was being spent annually to fight AIDS.
Piot defended the overestimations. He told Timberg that his job was “really to make sure AIDS was taken seriously.” Piot writes in his memoir, “In those days there was simply zero tolerance among some for anything other than advocating for more money, and while non-AIDS interest groups claimed that AIDS got too much money, they lobbied hard to get their issue included in AIDS budgets—often with success.”
Several researchers believe that the global decline in HIV infections during the 2000s had very little to do with the prevention programs sponsored by organizations such as UNAIDS. They argue instead that much of the drop came from people limiting their sexual partners and increased circumcision, which WHO says can reduce HIV-infection risk by about 60 percent. In countries where partner reduction was negligible, much of the decrease in HIV infections was likely just part of the natural cycle of epidemics. An article in the Lancet on the global downturn in HIV infections concludes, “Most important surely are purely epidemiological phenomena—those most susceptible become infected first (because of sexual behavior and networks) and the susceptible pool shrinks. Moreover, at some point the chain reaction derived from the infectiousness of newly infected people subsides.”
The Lancet findings reflect the trajectory of many epidemics, which often begin slowly before climbing to a rapid peak, followed by a gradual decline. Chin, the former WHO epidemic tracker, has written that organizations such as UNAIDS claim credit for drops in infection rates that are actually just natural declines. Chin writes that UNAIDS was “riding to glory on the down slope of the epidemic curve.”
In sub-Saharan Africa, where the majority of the world’s HIV infections occur, UNAIDS estimates new infections dropped almost 40 percent between 2001 (2.6 million) and 2012 (1.6 million). In a 2012 UNAIDS report, the sharp decrease is attributed to the “sustained investments and increased political leadership for the AIDS response” as well as “a concurrent scale-up of HIV prevention and treatment programs.” With more money, the statement implies, UNAIDS could eradicate the virus.
The report, however, fails to mention that in Kenya and Ethiopia, HIV transmission began to decline before significant outside funding came in about 10 years ago. Nor does it include the fact that Zimbabwe’s remarkable 12-percentage-point drop in HIV prevalence happened despite only relatively small sums coming in from donors. Nowhere does the report say that Uganda was already one of the world’s biggest AIDS success stories before foreign donors began to take notice. And when outside money did arrive, HIV rates crept back up. UNAIDS also ignores the evidence that partner reduction has had a major contribution everywhere HIV rates have declined, not just in Africa, but in Asia and the United States, too. And it certainly doesn’t point out that most of the money UNAIDS advocates for will likely end up in the hands of U.S.-based organizations that will spend it to maintain bureaucratic structures and promote ineffective prevention methods.
Uganda’s partner-reduction program cost just 29 cents per person per year. Circumcision cost about $40 per man in Zimbabwe. Both methods were found to be effective in slowing HIV transmission. But as AIDS relief ballooned to an industry worth over $20 billion a year, many Western donors structured their AIDS-prevention programs around expensive biomedical products. It’s estimated that, in 2011, 6 percent of global HIV program funding went toward condoms, while more than 75 percent went toward drug-related categories (such as treatment and mother-to-child transmission). Behavior change programs and male circumcision, which have shown to be most effective at limiting the spread of HIV in generalized epidemics, received only 4 percent of funding.
It’s easy to think Big Pharma has too much power over AIDS-relief programs, especially after 2003 when the former CEO of pharmaceutical firm Eli Lilly and Company, Randall Tobias, was appointed to lead the President’s Emergency Plan for AIDS Relief (PEPFAR). All the money the U.S. government spends on fighting AIDS is funneled through PEPFAR, whose stated aim is to improve HIV prevention and treatment in developing countries.
For the past six years, the U.S. has spent about $6.7 billion a year to combat AIDS internationally. But tracking this spending is difficult, because it involves piecing together many organizations and levels of bureaucracy, and because PEPFAR doesn’t release many of its contracts in a timely or accessible way. The Center for Global Development stated in one of its reports: “While the U.S. government collects extensive information about how PEPFAR funding is used, only a small share of this data is publicly disclosed. Even PEPFAR staff are not able to access some of the collected data.”
It’s not clear why PEPFAR’s contracts are so difficult to obtain. It could just be that information gets lost with each added layer of bureaucracy. But the complexity also obscures that as little as 8 percent of PEPFAR money gets directly allocated to governments of developing countries. The vast majority instead goes back to U.S. companies and organizations. In 2008, 22 of the top 25 recipients of U.S. AIDS-relief funds were based in the U.S., collectively receiving around $2.3 billion. This pattern isn’t unique to AIDS relief; a congressional research report suggests as much as 90 percent of U.S. foreign aid passes through U.S. companies and organizations.
Though biomedical companies and AIDS-relief groups have incentives to mislead the public to keep cash flowing, most deception happens subconsciously. These organizations are full of intelligent, sympathetic, honest individuals who are looking to improve the lives of AIDS victims and halt the spread of HIV. Bureaucrats have genuine intentions, and the resources they’ve pumped into African nations have helped improve the quality of life for many individuals with AIDS. But, as Halperin and Timberg write, “The creation of such an extensive industry creates its own political and financial imperatives.”
It makes intuitive sense that condoms would be a good defense against AIDS, and that approach has worked in places such as Thailand and Cambodia. In those countries, however, HIV was mostly spread through commercial sex, so enforcement of consistent condom use in brothels made a difference. In Africa, where condoms are often seen as a Western imposition, many people refuse to use them with their regular partners and only use them irregularly, and sometimes incorrectly, during casual sex. In these cases, some use has been worse than no use, because the availability of condoms lowers perceptions of risk while failing to adequately protect sporadic users.
A randomized, controlled clinical trial can’t accurately capture how culture will impact behavioral reactions to condom distribution and other programs. That’s why observing cultural norms and examining “natural experiments” is so crucial, and why learning from Uganda and Zimbabwe’s successes is so important. Anthropological evidence indicates that cheap, grass-roots campaigns run by locals have been more effective in reducing HIV transmission in Africa than have the expensive biomedical interventions run by Western donors. Western biomedical products were successful in squashing other diseases, such as polio and smallpox. But unlike polio or smallpox, stopping HIV involves confronting sexual and cultural nuances that make people uncomfortable and that Western money alone can’t overcome.
Even if a bureaucrat, donor, or researcher begins advocating for changes in prevention strategy, the person will encounter immense political inertia. Any attempt to improve U.S.-directed programs will face roadblocks because of zealous orthodoxy from both the right and left. The right doesn’t want to acknowledge the benefits of condoms in preventing infections in concentrated epidemics. The left is concerned with protecting people’s rights and freedoms, which, in extreme cases, leads to condemnation of anyone who acknowledges cultural differences or dares to suggest sexual activity should be curtailed. People who subscribe to these opposing philosophies often find themselves in abstinence-versus-condoms debates, which totally ignores that partner reduction has likely played the largest role in lowering HIV transmission across Africa. These debates become so toxic that sometimes an organization will oppose a strategy just because a political adversary promotes it.
Malcolm Potts was the first medical director of the International Planned Parenthood Federation and the former CEO of Family Health International, a group that ran condom campaigns in Africa for decades. Potts admitted to Epstein that he resisted partner reduction and fidelity programs for ideological reasons:
AIDS produces so much emotion. It’s hard to look at the evidence. We’ve never really been on an even keel with respect to strategy. There was a sense that promoting fidelity must be totally wrong if it was a message favored by the Christian Right. We’ve made an emotion-based set of decisions, and people have suffered terribly because of that. And they will go on suffering. Everything we learn about the epidemic goes in slowly and is resisted on the way.
Many of the organizations controlling AIDS-relief money write about the disease as if it were divorced from sexuality, omitting frank sexual talk in favor of discussing resources, poverty, and education. By not directly talking about sex, it’s easier for powerful, money-hungry groups to mask their underlying political doctrines. The abstinence alliance assumes that large swaths of the population should, and will, withhold sex until marriage, while the condom coalition rebukes anyone advocating for anything resembling a sexual restriction. It’s tragic that neither group cares to acknowledge the cheap solutions lying in the middle.
Ross Benes is the author of The Sex Effect: Baring Our Complicated Relationship With Sex (Sourcebooks, 2017), from which this article was adapted.
Featured Image Credits: Obama White House Archives.