Continuing my latest 'project' - bringing myself up to date on the global AIDS epidemic, the history, the science, and the realities of life with HIV - I picked up a book I'd seen recommended in several articles on AIDS narratives, Helen Epstein's The Invisible Cure: Why We Are Losing the Fight against AIDS in Africa. I was particularly looking forward to comparing Epstein's views with those expressed by Craig Timberg and Daniel Halperin in Tinderbox, which also addressed the specific issues and conditions surrounding the fight against AIDS in Africa.
Epstein is an American writer and journalist. She is also a molecular biologist and has worked as an independent consultant specialising in public health in developing countries for organisations as diverse as The Rockefeller Foundation, Human Rights Watch and the Population Council. Her career as as a molecular biologist working on the development of an AIDS vaccine took her to Uganda, where she conducted research. Though she was unsuccessful in making any progress on the quest for a vaccine, her experiences in Uganda and later research in other countries served as the basis for this book on AIDS in Africa. The book is partly a personal narrative and partly an exploration of the specific conditions surrounding the AIDS epidemic in Africa.
As Epstein notes in her Preface, the way that the AIDS epidemic has developed in Africa differs in certain key dimensions from its progress in other areas.
"The worldwide AIDS epidemic is ruining families, villages, businesses, and armies and leaving behind an immense sadness that will linger for generations. The situation in East and southern Africa is uniquely severe. In 2005, roughly 40 percent of all those infected with HIV lived in just eleven countries in this region—home to less than 3 percent of the world’s population. In Botswana, Lesotho, and Swaziland, roughly a quarter of adults were infected, a rate ten times higher than anywhere else in the world outside Africa."
Epstein's narrative is an attempt to identify the reasons for the scope of the epidemic in Africa. In terms if the early spread of the disease, and the conditions which facilitated its continued growth and the difficulties in designing effective treatment and education programs, Epstein appears to have come to some of the same conclusions as Timberg and Halperin, particularly on the role that colonialism and globalisation have played in the social disruptions that allowed AIDS to flourish. She says: "... its spread has been worsened by an explosive combination of historically rooted patterns of sexual behavior, the vicissitudes of postcolonial development, and economic globalization that has left millions of African people adrift in an increasingly unequal world. Their poverty and social dislocation have generated an earthquake in gender relations that has created wide-open channels for the spread of HIV."
Further, she suggests - as do Timberg and Halperin - that projects and programs imposed from outside the communities by people with little understanding of African life and society are unlikely to be successful.
"Like many newcomers to Africa, I learned early on that the most successful AIDS projects tended to be conceived and run by Africans themselves or by missionaries and aid workers with long experience in Africa—in other words, by people who really knew the culture."
However, Epstein focuses primarily on the causes and consequences of major differences in the epidemiology of the disease in Africa when compared to other areas where the disease has reached epidemic proportions.
"In other world regions, the AIDS epidemic is largely confined to gay men, intravenous drug users, commercial sex workers, and their sexual partners. But in East and southern Africa, the virus has spread widely in the general population, even among those who have never engaged in what health experts typically consider high-risk behavior and whose spouses have not done so either."
It is these significant differences in the pattern of AIDS epidemiology in Africa that make fighting the disease so much harder. Harm reduction policies that have worked well in other countries have had little success in stemming the rate of new infections, because the behaviours that lead to transmission and the populations affected are not the same as are seen elsewhere. Further, the connection between HIV infection and behaviours often seen as immoral or criminal - prostitution, anal sex, intravenous drug use - tend to convey an attitude of shame, which limits communicators' ability to convey a message if harm reduction behaviour to ordinary people who are not part of a high risk population.
"... in this book, I suggest that outside of Uganda and Kagera, health officials misunderstood the nature of the AIDS epidemic in this region, in particular why the virus was spreading so rapidly in the general population. As a result, the programs they introduced were less effective than they might have been and may have inadvertently reinforced the stigma, shame, and prejudice surrounding the disease.
Much of the stigma and confusion surrounding AIDS has to do with its common association with perceived 'irresponsible' or 'immoral' sexual behavior."
This sense of shame associated with AIDS may well have ben intensified by the cultural influence of colonialism and Western racist attitudes toward Africans. A prevailing racist narrative, traceable to the earliest reports of Europeans visiting sub-Saharan Africa, is that of the hypersexual African. Education and prevention programs designed in the West and imported to Africa were influenced by assumptions that AIDS in Africa was spreading so widely because of extreme promiscuity. Not only did this result in programs that would widely miss their mark, but in sone cases it generated resistance among Africans, highly sensitive to the perceptions of Westerners, leading them to downplay or deny the severity of the epidemic because of its association with sexual immorality. "In a speech given at the University of Fort Hare in 2001, [South African President] Mbeki railed against those who were 'convinced that we are but natural born promiscuous carriers of germs, unique in the world. They proclaim that our continent is doomed to an inevitable mortal end because of our unconquerable devotion to the sin of lust.' "
Indeed, Epstein found that in many areas, discussion about AIDS is virtually non-existent, and many people acted as if it was not an issue in their communities. People refuse testing, deny their positive status, pretend that deaths of friends and family are from other causes. In South Africa, where rates of infection are among the highest in the world, an entire multi-million dollar educational and social marketing campaign, called loveLife, and aimed at reducing high-risk practices among youth, rarely if ever mentioned the term AIDS. In many cases, Epstein was told that this silence is due to the fact that AIDS has been presented as a disease of prostitutes and criminals. To admit that you are HIV positive, or that someone in your family is, is to admit gross personal immorality and invite shaming, social isolation, and even violence.
The truth, however, is that in Africa, unlike most other regions, AIDS predominantly affects people in the general heterosexual population, particularly women who have never engaged in what are commonly seen as the high risk behaviours. Many HIV-positive Africans have had few sexual partners, and most of their sexual relationships have been long-term, based on some degree of emotional commitment, and no more prone to unfaithfulness than relationships conducted by Westerners. The difference which increases the risk of infection for heterosexual Africans is a cultural one - in many areas of Africa, the pattern is not one of serial monogamy, but of concurrent polygamous relationships.
"... what many people—from policy-makers, to public health experts, to ordinary African people at risk—did not realize is that most HIV transmission in this region results from normative sexual behavior, practiced by large numbers of people. It’s not that African people have more sexual partners, over a lifetime, than people in Western countries do—in fact, they generally have fewer. However, in many African communities, both men and women are more likely than people in other world regions to have more than one—perhaps two or three—overlapping or “concurrent” long-term partnerships at a time. A man may have two wives, or a wife and girlfriend, and one of those women may have another regular partner, who may in turn have one or more other partners and so on. This “long-term concurrency” differs from the “serial monogamy” more common in western countries, and the casual and commercial “one-off” sexual encounters that occur everywhere. But long-term overlapping relationships are far more dangerous than serial monogamy, because they link people into a giant network that creates a virtual superhighway for HIV.
Concurrent sexual partnerships have strong cultural, social and economic roots in East and Southern Africa, and this has made fighting HIV very difficult. Fifteen years of vigorous condom promotion in many African towns and cities has had little effect on the epidemic, probably because most transmission occurs in long term relationships in which condoms are seldom used. As family planning experts have known for decades, people use condoms mainly in casual and commercial relationships, and inconsistent condom use offers poor protection against either pregnancy or STD transmission in long term relationships. Urging African people to abstain or be faithful has its limitations too, because most people are faithful already, if not to one person, then to two or three. Many of those at highest risk of infection are the faithful partners of men or women with only one other trusted long-term partner; others are in mutually faithful relationships, in which one partner had concurrent partners in the past."
Epstein sees the pattern of multiple concurrent sexual relationships as the primary reason that AIDS in Africa is not primarily a disease of high risk groups, but a disease affecting the general population, most of whom are neither promiscuous nor engaged in what is normally recognised as high risk activities. The reasons for these concurrent relationships vary widely. In some communities, polygamy is still the norm, such that each man has multiple wives. In some cases, if the man is a migrant worker, he may also have a girlfriend in his place of work - and because he cannot financially support both his wives and his girlfriend, she may have a second lover as well. At home, one or more of his wives may have a longterm clandestine relationship with one of the many unmarried young men who cannot yet afford a bride price.
In urban areas, many women engage in transactional relationships - they agree to be someone's girlfriend in return for gifts or some financial support. A young man with some income to spare may have such relationships with several women at the same time. One or more of these young women may have a second lover, either to augment her financial situation or to 'pay back' her first boyfriend for his infidelities.
Until recently, education programs focused on the kinds of high risk behaviours identified as key means of transmission in other regions, and did not discuss concurrent relationships as a risk. Further, prevention education focused on condom use. But because these programs did not take into account the realities of sexual behaviour in many areas of sub-Saharan Africa, such programs did little to reduce harm in the relationships most likely to spread infection.
"The condom campaigns were intended to encourage frank discussion about sex among normally reticent African populations and reach out to high-risk populations with the message that casual sex was nothing to worry about as long as condoms were used. But it is possible to imagine how they might have had the opposite effect. By associating AIDS with beer drinking, premarital sex, prostitution, and—in the case of the boxing glove and basketball ads—womanizing and rape, the lusty condom ads might well have clashed disastrously with local sensibilities concerning decency and self-respect and further inflamed the prejudice, denial, and rumormongering that have featured so strongly in the AIDS epidemic, and in virtually all epidemics since biblical times. 'The campaigns were totally wrong,' said Nkosazana Ngcobo, who works with a South African organization that helps orphans. 'The message was you had to be a prostitute or a truck driver to get AIDS.' "
One thing that runs through many of these patterns of concurrency is the role played by poverty, particularly among women, and by the concentration of work for men in geographically distant areas, which results in partners being separated for long periods of time and thus seeking out secondary relationships for comfort. Epstein does not hesitate to place much of the blame for these economic inequities and dislocations on colonialism, globalisation, and the policies of Western development and investment organisations such as the World Bank:
"The reasons why sexual behavior had been so slow to change in response to HIV in many developing countries were complex and mysterious. ... It is also possible that people in communities that have been broken by war, migration, and continuing economic hardship will be slow to take HIV awareness messages seriously. It is also possible that improving the social conditions that make the poor vulnerable to HIV is difficult when their fate is sometimes in the hands of remote economists, officials, and businessmen."
In the first section of the book, Epstein reports on the reasons she sees behind the rapid spread of AIDS in most of sub-Saharan Africa. She then turns, however, to look at one area where infection rates declined, without significant access to Western AIDS programs or anti-viral pharmaceuticals. Initially, the spread of HIV infection in Uganda and the adjacent Kagera region of Tanzania was rapid, fueled by border conflicts between Uganda and Tanzania in the 1970s, which resulted in mass movements of soldiers and civilians, and attendant prostitution. But by the late 1980s, the prevalence of AIDS had fallen dramatically, even as it was rising in surrounding regions.
The phenomenon has been studied and many explanations have been put forward for this drop; Epstein attributes it at least in part to something she calls 'collective efficacy':
"It seemed to me that what mattered most was something for which public health experts had no name or program. It was something like “collective efficacy”—the ability of people to join together and help one another. Felton Earls, the sociologist who coined the term, was trying to explain varying crime rates in American cities, but the phenomenon is present everywhere there is a spirit of collective action and mutual aid, a spirit that is impossible to measure or quantify, but that is rooted in a sense of compassion and common humanity.
During the 1980s and early 1990s, while people in most African countries were ignoring the AIDS crisis, hundreds of tiny community-based AIDS groups sprang up throughout Uganda and Kagera to comfort the sick, care for orphans, warn people about the dangers of casual sex, and address the particular vulnerability of women and girls to infection. Yoweri Museveni’s government developed its own vigorous prevention campaigns and the World Health Organization provided funding, but much also came from the pockets of the poor themselves. Their compassion and hard work brought the disease into the open, got people talking about the epidemic, reduced AIDS-related stigma and denial, and led to a profound shift in sexual norms. This process was very African, but it was similar in many respects to the compassionate, vocal, and angry response to AIDS among gay men in Western countries during the 1980s, when HIV incidence in this group also fell steeply."
Epstein also notes that "... the people in this region understood earlier than others that in this part of Africa, AIDS was not just a disease of prostitutes, truck drivers and other stigmatized high-risk groups." The post-Amin government of Yoweri Museveni undertook a serious education campaign that featured frank talk about sex and popularised the slogans "Love Carefully" and "Zero Grazing" - encouraging a reduction in concurrent relationships. A strong feminist movement brought about legal and social changes that empowered women to assume greater personal autonomy in sexual relationships. But at the time, Western AIDS workers and researchers dismissed all this.
"Through the 1980s and 1990s, officials from the World Health Organization, USAID, and other development agencies largely dismissed Uganda’s AIDS programs. 'It seemed like chaos,' Gary Slutkin, a WHO official who worked in Uganda in the late 1980s, told me much later. 'For many of my colleagues, the problem was there was no theory behind Uganda’s approach.' Public health programs were supposed to be “rational,” “budgeted,” and targeted at those groups thought to be most at risk. They were not supposed to be a free-for-all. But what WHO officials did not understand at the time was that there was a theory. It just wasn’t their theory. The intimate, personalized nature of Uganda’s early AIDS campaigns—the open discussions led by government field workers and in small groups of women and churchgoers, the compassionate work of the home-based care volunteers, the courage and strength of the women’s-rights activists—helped people see AIDS not as a disease spread by disreputable high-risk groups or 'others' but as a shared calamity affecting everyone."
In recent years, the frank campaigns based on reduction of partners have disappeared. In their place, abstinence-only programs operated by evangelical Christian organisations and funded by a US government opposed to any other preventative approaches have become standard. Shame and stigma are increasingly directed toward 'immoral' AIDS sufferers. And the prevalence of AIDS in Uganda is no longer falling.
Epstein concludes her book with an examination of the kinds of locally designed and operated programs that may help to alleviate suffering and change behaviours, and how these are often undermined by programs designed and funded by Western organisations. Ultimately, she says, there is a place for both, but each must be allowed to do what it is best suited for.
"The failure of so many donor programs has left many with the mistaken impression that when it comes to behavior change, “nothing works”. But a growing number of initiatives ... are working, sometimes with words alone.
However, words alone are not enough. The billion-dollar aid agencies such as USAID, the World Bank and the Bill and Melinda Gates Foundation must continue to make condoms and counseling and testing services as widely available as possible, and should also continue to extend the offer of AIDS treatment to all who need it. But they should be aware that these programs, though vitally important, are unlikely to bring the epidemic under control on their own. They also need to do more to support programs that promote a sense of solidarity among all those who care about the disease. Too many donor programs have divided people—rich from poor, old from young, HIV positive from HIV negative, “moral” from “immoral.” Microfinance programs, home-based care and orphan programs, women’s rights programs and other initiatives that are truly locally conceived and controlled need to be expanded. This must be done carefully and in good faith; episodic, self-serving efforts to boomerang funds back to donor agencies themselves can be worse than useless, as can opportunistic “projects” spontaneously generated in response to new donor funds.
The African AIDS epidemic is partly a consequence of patterns of sexual networking that have evolved in response to the insecurity of living in a rapidly globalizing world that is leaving the continent behind. Therefore, the industrialized countries should also reexamine their policies in trade and foreign investment so that African nations can compete on fairer terms in the global economy."
Epstein's familiarity with Africa, gained through years of research into public health issues in multiple areas if the continent, makes this book an invaluable resource tor understanding what has gone wrong with the fight against AIDS in Africa, and what can be done to set it right.
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