THIS MONTH'S THEME
Photo: Gisele Wulfsohn / Panos Pictures
They are the dead who walk again: the Lazarus men. Invisible to most of us, these are the gay males, now in their 30s and 40s, who first contracted the HIV virus 10, 15 and even 20 years ago. Through a combination of raw courage, determination and powerful new drug therapies, they have managed to keep the disease at bay.
Steve Mueller is one of those survivors. He is a warm, articulate 42-year-old with sharp, sculpted features, a halo of black curls and a hacking cough – the legacy of a battle with HIV which is not yet over. We’re sitting in a crowded lunch spot in the heart of Toronto’s Little Italy, straining to hear each other amidst the jangle of crashing cutlery and the hum of animated conversations ricocheting around the room. ‘I could fill these tables with guys who are gone,’ he nods, glancing quickly across the crowded restaurant.
Steve has been through a lot since he discovered he was HIV positive back in the early 1990s. Then he was teaching psychology at a small community college in the city, enjoying life, financially secure, with a partner who was an affluent executive in the advertising business. Life was good, he was living ‘by the rules’.
Then he got sick and his world shattered. He lost his job; his partner, also HIV positive, died within a year. And then Steve contracted meningitis, one of the often deadly ‘opportunistic diseases’ that strike the battered immune systems of people with HIV.
‘The doctors told me in June 1995 that I was unlikely to see Christmas. I’d gone from 180 to 120 lbs and I was still losing weight. Then I started on the AIDS cocktail; it literally pulled me back from the edge. They called guys like me, who were dying and then bounced back, the Lazarus men.’
Steve’s life, and the lives of many other people with HIV/AIDS (PHAs), was turned around by the discovery of effective ‘antiretroviral’ medications (ARVs) a decade ago. These drugs are not a cure for HIV but they can be a way of controlling the virus, enabling many people to work and lead otherwise normal lives again.
But as important as they’ve been in the West, they have made scarcely a dent in those parts of the world where HIV rages unchecked. Soon after HIV was identified in North America it leapt from the homosexual to the heterosexual community, and then from the gay ‘ghettos’ of Seattle and New York to the slums of Port-au-Prince, Bangkok and Mumbai.
Today, the disease once branded as a ‘gay plague’ has become, overwhelmingly, a heterosexual disease: 75 per cent of worldwide HIV transmission is now due to heterosexual sex. And while the spread of HIV across the North has slowed due to vigorous treatment and prevention campaigns, the virus continues to cut a widening swath across the South.
The numbers are brutally stark. Twenty-two million people dead from AIDS-related illnesses since the disease was first discovered just 20 years ago – more people than died in Europe during the Black Death of the Middle Ages. Three million people dead last year alone. Thirty-six million people are now infected – 25 million in sub-Saharan Africa where the disease threatens to hobble human development for decades. In Botswana, 36 per cent of adults have the HIV virus, in South Africa more than 5 million people are infected – 20 per cent of the adult population.1
AIDS is eroding economic progress and fracturing social stability across sub-Saharan Africa and will do so in other parts of the world unless urgent action is taken. Average life expectancy in more than a dozen African countries has dropped by 17 years due to AIDS – from 64 to 47 years. Zimbabweans have to cope both with the septuagenarian autocrat, Robert Mugabe, and with an AIDS epidemic which has shaved 26 years off their average life span. Families without breadwinners are thrown into a downward spiral of poverty and hunger. A quarter of all families in Botswana can expect to lose a wage earner in the next 10 years, slashing household income and forcing those who remain to do whatever they can to make ends meet. According to the UN Food and Agricultural Organization (FAO) more than 16 million farm workers will die from AIDS in the next 20 years with incalculable impact on food production and hunger. The Zambian Government says it has lost one-in-three teachers to AIDS.1
‘Let us not equivocate,’ warns Nelson Mandela, ‘AIDS today in Africa is claiming more lives than the sum total of all wars, famines and floods, and the ravages of such deadly diseases as malaria. It is devastating families and communities.’
Millions of people are being cut down in their prime leaving a continent of old people and orphans. There are more than 13 million AIDS orphans in Africa – Zambia alone has a million kids who have lost their parents to the virus. With the adult workforce so depleted, more kids are forced to leave school to support brothers and sisters. The Tanzanian sociologist, Gabriel Rugalema, reports that in the province of Kagera in Northwest Tanzania orphans make up nearly 20 per cent of the population. Rugalema worries that AIDS is upending the tribal clan structure and tearing apart the social fabric. It’s a catastrophe in the making, a breeding ground for crime and social chaos.
But describing the terrible consequences of this disease doesn’t confront the most fundamental question: what’s driving the epidemic? Why is it that HIV infection rates vary so dramatically from one part of the globe to another? Just as there is no reason to believe that people are more sexually active in Lusaka than they are in London, so there is no reason to believe that human behaviour is the sole determinant of the rate of infection.
The great French pioneer in epidemiology, Louis Pasteur, wrote: ‘The microbe is nothing; the terrain, everything.’ That was Pasteur’s way of saying that epidemics are never merely biological. They are shaped and amplified by social forces which are in turn set in motion by economic change. Just as the bubonic plague thrived in the crowded, pestilential European cities which provided the breeding grounds for the rats which spread the disease, so too AIDS spreads along the fault lines of poverty, gender and class inequality.
In recounting the case histories of three of his patients in rural Haiti the medical anthropologist and doctor, Paul Farmer, notes that in all three cases ‘the declining fortunes of the rural poor pushed young adults to try their chances in the city. Once there, all three became entangled in unions that the women, at least, characterized as attempts to emerge from poverty. Each worked as a domestic, but none managed to fulfill the expectation of saving and sending home desperately needed cash. What they brought home, instead, was AIDS.’ 2
Commercial sex work, urbanization and poverty-driven job migration are exacerbated by imposed economic adjustment policies and debt. Colonialism set the template for African labour migration, tearing men away from their villages and families to work in mines and plantations. The collapse of rural economies across the South in the wake of mechanized farming and the spread of cash-crop exports continued the forced exodus of peasants to the cities in search of work. The South African photographer Gideon Mendel, who has chronicled the AIDS epidemic for more than a decade, has this to say about his country’s migrant-labour scheme:
‘You go to some of the mines and there are between 20,000 and 30,000 men working there. They go home for two weeks a year. The mines are surrounded by squatter camps full of sex workers, many of whom are infected with HIV. If an evil genius were asked to design an ideal scenario for the spread of AIDS, he couldn’t come up with anything better.’ 3
More recently, structural-adjustment policies intended to ‘modernize’ Southern economies have accelerated labour migration and urbanization. Spending on health and education has been slashed, fueling illiteracy and ignorance which foils AIDS prevention. In the midst of a skyrocketing AIDS epidemic in the early 1990s the World Bank instructed Kenya that public clinics should charge a user fee of $2.15 for an examination which revealed the presence of sexually-transmitted diseases (STDs). Attendance fell in some cases by as much as 60 per cent. When health clinics are too expensive or too far away, untreated STDs multiply the chances of contracting and spreading the HIV virus.4 Chronic malnutrition due to poverty weakens natural defenses, making people more vulnerable to infection.
Up to now the ABC of AIDS prevention has focused on changing individual behaviour to arrest the spread of the disease: (A)bstain, (B)e faithful to one partner and use a (C)ondom. This tactic has put a brake on the virus in parts of Africa, notably Uganda and in Asian countries like Thailand and Cambodia. The prevalence of HIV in pregnant women in Cambodia fell from 3.2 to 2.3 per cent from 1997 to 2000 due to a concerted education campaign.1 And there’s no doubt the safe-sex message has helped curb HIV transmission rates across the West, where AIDS deaths and new infection rates have edged steadily downwards over the past decade.
But handing out condoms will never be enough. As Pasteur might have said, they may stop the microbe but they don’t change the terrain. HIV spreads by exploiting cultural and economic conditions. How do you deal with the claim that in Zimbabwe: ‘It is very difficult for a man who is married to use a condom with his wife, since condoms are for prostitutes.’5 Or the fact that more knowledge may not result in more use. The Indian journalist, Radhakrishna Rao, writes that ‘health workers in India speak of how males have worn condoms on their thumbs or middle fingers during coitus, just like in the demonstrations. And one young female AIDS educator who distributed condoms among women in one of the slums in Hyderabad was aghast to find that many women were not so happy with the “strange-looking device” as they had difficulty swallowing it.’6
And then there is the shadow of stigma. As UNAIDS notes: ‘It is always easier to blame others for the spread of HIV, but progress against the epidemic is only possible when communities own the problem of AIDS themselves.’ Being honest and open is the first and most important step in dealing with the virus. Yet everywhere HIV-positive people are reluctant to be tested, for fear of censure and discrimination. This sets in motion a cycle of guilt, shame and denial which impedes both treatment and prevention. More than half of a group of HIV-positive women in Kenya hid the news from their partners because they feared they’d be beaten or abandoned.1 And in Swaziland last year prominent politicians proposed that PHAs should be forced to wear identification badges and be herded into special segregated areas where they would not be able to contaminate ‘normal people’.7 But prejudice is not confined to the South. A March 2002 survey published by the American Journal of Public Health found that half of all Americans still believe they can get HIV through everyday contact with a person infected with the virus and half also support mandatory testing of groups most at risk of HIV infection.
It’s no accident that the marginalized and the poor are the ones most deeply affected by the disease. A graph of the rates of incidence in the US is telling – with infection amongst Black and Hispanic populations marching ever upwards while that of White Americans continues to decline. The same is true in Canada for native people, where infection rates jumped 90 per cent from 1996 to 1999. Aboriginal people are 2.8 per cent of the Canadian population but made up nearly 9 per cent of all new HIV infections in 1999.8
Poverty doesn’t cause AIDS. But it is the ideal incubator. And gender and poverty are inextricably combined: 70 per cent of the world’s poor are women and poor women are most susceptible to HIV. Violence against women and sexual assault are cornerstones of the AIDS epidemic. Says UN special AIDS envoy Stephen Lewis: ‘Until there is a much greater degree of gender equality, women will always constitute the greatest number of new infections. You cannot have millions of women effectively sexually subjugated, forced into sex which is risky without condoms, without the capacity to say no, without the right to negotiate sexual relationships.’
Unequal power relations mean poor women can be more easily abused or coerced into dangerous sexual encounters. Researchers from Soul City, a health-education agency in Cape Town, found ‘a pervasive sense of male entitlement to sex and the right to discipline disobedient partners’. Said one young girl: ‘When a woman refuses to have sex for no reason, then a man is obliged to beat that woman.’ 9 Without property or skills, women are forced to sell their bodies to feed themselves and their children – a dismal choice but one which is more lucrative than the alternative. Poverty means sex workers are more concerned with day-to-day survival than the threat of an infection whose deadly consequences lie many years in the future.
Treatment for HIV depends not on medical need but on where you live and how much you can afford to pay. It is unconscionable that millions of AIDS patients across the South suffer and die while drugs which could ease their pain and prolong their lives are denied to them. The death-rate from AIDS in the US dropped by 40 per cent over the last decade as a result of antiretroviral drugs. But the current price for a year of triple combination therapy in the West can be as high as $10,000. Compulsory licensing and the opening of Southern markets to manufacturers of generic drugs could dramatically increase their availability. But even for generics to be affordable in the poorest countries the cost will need to plummet.
There has been a high-profile fight against the giant pharmaceutical companies that control the manufacture of ARVs. Countries like Brazil and India are on the front line of this battle. But the multinationals have mostly held their ground, despite insistent demands from ‘treatment action’ campaigns in South Africa and elsewhere. The drugs are not a panacea but they do improve quality of life and boost life expectancy. They provide hope in the midst of despair and, critically, offer an incentive to be tested for those who may carry the virus. And visible, effective treatment also helps overcome the social stigma, which is still so pervasive. Treatment benefits communities and individuals, with fewer hospitalizations, fewer deaths, fewer infected infants and fewer orphans. Those treated can support their families and are likely to be less infectious.
UN Secretary-General Kofi Annan has established a global AIDS Fund with an initial target of $10 billion. So far the Fund has garnered about $2.0 billion in pledges. The Bush administration, which came up with $50 billion to fight global terrorism after the 11 September 2001 attack on the US, has committed a mere $200 million. More resources are urgently needed for care and prevention, as well as treatment.
The hardest-hit countries can’t do it on their own – especially not when global economic conditions are conspiring against them. With healthcare systems limping, debt payments draining national budgets and nations, North and South, diverting millions into anti-terrorism measures and military spending, the prospect of more resources to fight AIDS seems slim.
There are no short-term solutions. But there are solutions. Some of the most inspiring efforts are being carried out by PHAs themselves working in small-scale NGOs. As a group of African women declared at a recent gathering on HIV in Kampala: ‘Without HIV-positive people, researchers can not do their work. We are the real experts in our communities about how HIV infection affects individuals and their families.’10
Steve Mueller is one of those experts. Until his latest bout of oesophageal cancer he worked with the Toronto People with AIDS Foundation (PWA) – a lean, street-smart agency offering practical advice on everything from housing to alternative therapies.
‘Mentally, AIDS is a huge, stigmatized death sentence,’ he says. ‘Suicide is a big concern. So whenever I dealt with clients the first thing I’d say was: “Like you, I also have to live with the disease.” You have to be a role model; you’re sick and you’re back in the work force. You might die next week and you might last another 50 years, nobody knows for sure. All kinds of awful things could happen to you and all kinds of wonderful things. But if you jump off a balcony you’ll never know.’
There are also countless successful projects, like Toronto’s PWA Foundation, peppered across the South. But they are swamped by the virulence and intensity of the virus itself. The time for a fully resourced, international, multi-dimensional programme is now. Already the virus is racing through India, China, Russia and Eastern Europe.
The AIDS historian, Allan Brandt, wrote these words in 1988:
‘In the years ahead we will, no doubt, learn a great deal more about AIDS and how to control it. We will also learn a great deal about the nature of our society from the manner in which we address the disease. AIDS will be the standard by which we measure not only our medical and scientific skill but also our capacity for justice and compassion.’2
The simple truth of that analysis would not be lost on Steve Mueller.
1 AIDS Epidemic Update, UNAIDS/WHO, December 2001.
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