December 2006 - January 2007


The margins of our attention

By Dennis Altman
The margins of our attention
25 Years of HIV & AIDS

In August, more than 20,000 people attended the biennial international AIDS conference, held in Toronto. The event passed almost unnoticed by the Australian media, except for Bill and Melinda Gates's call for action. The UN's special session on HIV and AIDS, in June, received similarly scant attention. Apart from occasional news stories about dying women and children in Africa, AIDS has largely vanished from public consciousness, reflecting the fact that in Australia it is largely confined to homosexual men and internationally it chiefly takes its toll on the already poor and miserable. Indeed, the very lack of interest is partly due to Australia's early success in responding to AIDS, which ensured that the nation, along with a handful of countries in Western Europe, became the yardstick for an effective response to the epidemic. The broad outlines of the Australian response have been in place for 20 years, and there are now only a few hundred new infections each year - hardly a reason for great concern beyond those immediately affected.

But while Australia's rate of new infections is less than the annual road toll, every day 6000-plus people die from AIDS across the world (roughly the total number of deaths from the epidemic in Australia to date). AIDS has shattered communities across much of Africa; it threatens the very survival of some small states, such as Swaziland and Lesotho. In much of southern Africa, life expectancy is plummeting and development gains are being reversed, all because of the epidemic. More than 20 million people have died; millions more are infected and suffering terribly. And, as is true of every cataclysmic event, the repercussions go far beyond those who are infected: there are, for example, the millions of orphans who try to eke out a living in affected areas. What was first recognised as a new disease when it affected middle-class homosexual men in US cities has now become largely an epidemic of the Third World, and is relegated accordingly to the margins of our attention.

Yet HIV and AIDS continue to influence Western life. It has changed behaviours surrounding sex and drug use, of course, but it has also made the medical and pharmaceutical industries more accountable. More broadly, AIDS has affected ideas and institutions of global governance and security. In retrospect, the period through which we are living may seem to have been more marked by the impact of the epidemic than by terrorism, which, though far more visible, has exacted a minuscule death toll compared to AIDS.

I first heard about AIDS before the term itself had been invented. I was living in New York in the early 1980s, the time of Ronald Reagan's "morning in America", when rumours began circulating about a new disease afflicting otherwise healthy young gay men. It took several years for scientists to name and define it as a retrovirus that was spread by bodily fluids and broke down the immune system, making the body defenceless against a variety of diseases.

Since then, AIDS has been central to my life. When I walk the streets of Sydney, I am struck by the knowledge that I have fewer contemporaries and longstanding friends than I would have if the epidemic had not occurred. This sense is even stronger in Paris, where I lived for about a year in the late '70s. Almost everyone I knew well at that time has now died, including my then lover, Antoine Pingaud, and the Australian filmmaker Philip Brooks, who died in 2003 after recording his life in the documentary My Dear Antipodes. Shortly after Antoine's death, I went to Paris for a meeting of AIDS organisations, and decided to dedicate my speech to his memory. I began in French, but after two or three sentences was choked with tears; I switched to English, and the emotion immediately disappeared.

The experience of widespread loss from the epidemic cuts across borders: it is shared by gay men and drug users in large Western cities, but most significantly by millions in sub-Saharan Africa. One of my early memories of the international struggle is of the founder of Africa's first significant non-government AIDS organisation, Noreine Kaleeba, a Ugandan. Kaleeba had been discussing the devastation left in her country by Idi Amin. When she first visited San Francisco, she said, she recognised a similar experience: young people dying in large numbers, and denial among those around them.

Today infection rates continue to rise in many parts of the world, fuelled by massive social inequalities that make casual, often forced, intercourse and drug use commonplace. Prevention should be relatively easy - we know how the virus is transmitted - but, because transmission involves intimate behaviours around which taboos and hypocrisy thrive, too many people are exposed needlessly to the risk of infection.

"Just say no", the illicit-drug strategy originally espoused by Nancy Reagan, is a meaningless injunction for most of the world's citizens. Imagine a young woman forced by family and community pressure to marry at 13 and have sexual relations with a man older than her father whom she has never properly met, and then consider the prospect of her insisting on his using a condom - if, indeed, she even knows the dangers of unprotected intercourse. Imagine a young man having to flee his home to survive, perhaps living in a makeshift camp, introduced to drugs as a means of escape, and then imagine the chances that he'll have the means or incentive to reject the short-term euphoria of a hit because the needle may not be clean.

The first decade of the epidemic changed gay life as fundamentally as had the liberationist early '70s. In 1985, I returned to live in Australia after four years in and out of New York. On the night I returned, I attended a Gay Rights Lobby dinner in Sydney, where I spoke alongside the federal health minister, Neal Blewett, and the Liberal senator Chris Puplick, both of whom later became key figures in the development of a bipartisan Australian response to AIDS. There was a degree of partnership between government and the gay community unimaginable when I had left for the US. The framework for the state AIDS Councils had been established by meetings of the gay community in 1983, and the first leaders were already meeting with government officials in ways unprecedented for gay men.

It is hard to remember the speed with which concern about AIDS entered the national imagination, and the effectiveness of the response. Homosexual sex, condom use and needle exchanges remain controversial subjects but, more than most countries, Australia accepted that AIDS prevention required sound public-health policies rather than moralism or denial. I recall sitting behind Ita Buttrose at the first National AIDS Conference, in Melbourne in 1986, watching as she continued to do her nails while listening to a heated discussion about anal sex, and thinking how much Australia had changed.

People like Buttrose, who was persuaded to become the chair of the federal government's advisory committee, created the space for governments and communities to introduce measures that largely prevented the spread of HIV beyond homosexual men and those with haemophilia. Australia introduced a national needle-exchange system - something still not achieved in the US - and effectively prevented an epidemic among drug users, a considerable public-health achievement.

Perhaps the greatest achievement of those early days was to prevent the stigmatisation of homosexuals - in the face of some on the religious Right, who saw this as a God-given opportunity ¬- and instead to legitimise the gay community as a partner of government. A new generation built full-time careers as AIDS organisers, educators and researchers. So successful was this model that there were attempts to replicate it in sex workers and drug users, but in both cases there was a far smaller pool of people willing to build identities and careers around those roles.

The response to AIDS was based on principles of peer support and education, and the first organisations, pioneered in almost all cases within the gay community, would become models for the rest of the world. The most visible metaphors of AIDS - the red ribbon, the Memorial Quilt, the identity of a Person Living with HIV - were born in the US, but have entered into the cultural repertoires of many societies.

Today a generation has grown up with AIDS - it is part of the social landscape - even though they are unlikely to have direct contact with anyone who is HIV-positive. The Australian Study of Health and Relationships showed that during the late '80s there was a major increase in condom use, which is now normalised in casual sexual encounters (and in much pornography) as a consequence of 20 years of AIDS-prevention messages.

Australia's national strategy could not have come into being without the full commitment and involvement of Neal Blewett, and the fact that the prime minister, Bob Hawke, was prepared to leave the responsibility for AIDS policies to his health minister. As part of that process, a number of ‘expert' panels toured the country in 1986, to engage in public hearings. Through a hot summer we heard from AIDS groups, lawyers and the occasional fundamentalist, in six capital cities. It was a tiring and repetitive process; it was also an important part of developing a bipartisan approach to AIDS which continues, albeit in a weakened form, to the present.

I saw first-hand the power of a relatively small group of people, drawn from those infected and their communities, their health professionals and researchers, who managed to preserve the commitment to respond to the epidemic despite changes in government and in the nature of the disease itself, from one involving almost certain death to at least the possibility of medical management over a long period. Now, as the first survivors enter their fifties and sixties, medical management means combining potent pharmaceutical interventions with care for other ailments connected with ageing. In their dependence on a grudging welfare system, and their need for constant intrusive medical management, people with AIDS increasingly resemble others with long-term chronic illnesses.

While the popular memory of the epidemic is that of street demonstrations and theatre, the reality was more one of earnest organisation-building and training. The AIDS activism associated with ACT UP that flourished in the early '90s (a period captured in Tony Kushner's play Angels in America) was in part a product of the anger and frustration of a generation of people who expected governments and medicine to keep them alive. Out of their anger came major shifts in the ways in which new therapies were tried and approved, the involvement of patients, and the relationship between doctors and those they treat. AIDS produced a new identity in the affected person, one that rejected the passive role of the patient and replaced it with the impatience of the activist.

There is evidence that the rate of HIV transmission is steadily increasing among homosexual men in Western countries, leading to a new and controversial campaign in Los Angeles, where billboards erected by the Gay and Lesbian Center proclaim, "AIDS is a gay disease: Own it, End it." One might argue that some increase in infections is no more than could be expected, given that in rich countries those who are HIV-positive stay healthy, and presumably sexually active, for longer periods, so the reservoir of HIV is greater than it was a decade ago.

One might also argue that the initial success among gay men of ‘safer sex' messages was so great that it would inevitably decline: humans grow weary of taking precautions. Currently, there are measurable increases in infection through homosexual contact in all Australian cities except Sydney. There is no accepted explanation for why Sydney is the exception. Nor, despite some media hype, is the increase most marked among young men (defined as those under 26) - not surprisingly, since the reservoir of infection in that age group is relatively small, and most sexual contacts take place between people of similar ages.

Colin Batrouney, the education manager of the Victorian AIDS Council, argues that the success of the early campaigns created an image of the good gay citizen, leading many men to rebel (often unconsciously) against the model. In any case, prevention programs for homosexual men are poorly funded: Batrouney manages a program with a budget of $500,000 a year. This is roughly equivalent to the real cost of two healthy adults becoming HIV-positive.

Every federal health minister up to and including Michael Wooldridge was clearly interested in the epidemic, and committed to maintaining the involvement of affected communities. Since Tony Abbott took over the portfolio, there has been significant change, and not only because the issue is less urgent at a domestic level than it was in the '80s: Abbott's moralism makes him uncomfortable with the sort of community representation that was part of the original government response to the epidemic. The increasingly conservative Canberra bureaucracy has reigned in spending on programs that conflict with the minister's support for ‘traditional values'. As funding for AIDS organisations has declined, government interference - for example, censorship of HIV-prevention materials - has increased.

In recent times, AIDS activism has been most prominent in countries such as South Africa, Thailand and Brazil, where the call goes up for more rapid responses and access to both treatment and prevention. The issues are rather different from those of the early '90s. The empowerment of ‘patients', symbolised in the repudiation of the term ‘victims', has become global, and has in turn assisted others with life-threatening diseases. But the legacy of over-hasty drug trials remains, meaning that long-term effects and other side effects emerge only after the fact and it is hard to get accountability for them.

AIDS has always been a highly political disease. And, because anti-retroviral therapies have changed it into a usually manageable one, the major divide has become the one between rich and poor worlds. In response, AIDS activism has developed a new face, targeting the structural inequalities in the poor world. International pharmaceutical companies' ‘ownership' of advances in therapies has been one of the most divisive issues in global trade negotiations: the major companies, backed assiduously by the US, have sought to prevent the development of generic medicines.

The focus on AIDS treatments has, ironically, also opened up a space for discussion of two other major diseases, tuberculosis and malaria, which affect people in the developing world disproportionately and, for that reason, were under-resourced and researched. Thanks to both the Global Fund, established as a result of the UN meetings, and the Gates Foundation, now the most significant player in global health, there is a new emphasis on putting resources into fighting these diseases. (And those suffering from the illnesses have benefited from the sophisticated network of advocates that formed in response to AIDS.) The Gates Foundation is particularly important in its funding of vaccine development, although progress on developing an HIV vaccine has been frustratingly slow.

Almost by accident, I became involved with international organising around the epidemic. I remember a very small meeting in an inner-Sydney guesthouse in the summer of 1989-90 which laid the basis for what would become a series of community networks across South-East Asia. I recall, too, images from the early days of meeting with small community groups - which still remain - in Malaysia, Thailand and the Philippines, especially in Manila, where I built friendships with people working with both street sex-workers and gay men.

More recently, in the Asia-Pacific region, the Australian government has taken AIDS seriously: it is one of AusAID's development priorities, and there is a personal commitment from foreign minister Alexander Downer, who understands the potential devastation of an unchecked epidemic. In my several meetings with Downer, he revealed an empathy not apparent in his more bellicose public appearances; he played a crucial role in establishing an Asian Leaders Forum to try to ensure that AIDS becomes a priority at the highest political levels. To date, the prime minister has not shared these concerns, and attempts to get Australia to push for greater responses to the epidemic at CHOGM meetings have not much interested him.

There is a great opportunity for an Australian leader to make his mark by showing a concern for an issue that is decimating not only the African countries of the Commonwealth but also, potentially, our closest neighbour. AIDS threatens to further destabilise Papua New Guinea, and growing Christian fundamentalism means that the disease is too often portrayed as divine punishment for sin. It's unlikely that AIDS alone will cause the country to collapse, but it is adding to the stresses on its stability. There are large numbers of project and development workers trying to stem the spread of the epidemic there, but the morass of taboos, ignorance and denial that surround sexual behaviour, and the realities of male dominance and poverty, make prevention and treatment very difficult.

It is a policy area in which Australia has not followed the lead of the US, which seeks to impose its version of morality upon others in the name of prevention. The Bush administration, which has spent far more on funding for HIV programs than any other government, has also sought to tie much of its assistance to the promotion of sexual abstinence - which, in practice, means denying the provision of condoms and avoiding working with people who, through choice or circumstance, are selling sex. At a recent UN General Assembly session, Australia's representatives maintained a cautious distance from the rhetoric of American officials and their strange alliances with Islamic and Catholic fundamentalists who appear more concerned with promoting a particular version of morality than with effective public-health measures.
Next year's CHOGM meeting will bring 50 heads of government to Uganda, among them, one imagines, John Howard. The Ugandan government will almost certainly use the meeting to promote its own achievements in slowing the epidemic, achievements that it now claims owe much to teachings of abstinence and fidelity. (There is a growing international debate about how to interpret the Ugandan experience, and the evidence is murky, to say the least.) Australia must be ready to play a major role in this debate, for HIV and AIDS will continue to affect the ways in which we imagine ourselves and the world for a long time yet.

Dennis Altman
Dennis Altman is Director of the Institute for Human Security LaTrobe University.

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