Introductory
Paper
by
Dr Shereen El Feki
Some events change the world in an instant; others shape our lives over decades. It is now more than 20 years since scientists first identified the cause of a baffling new syndrome ravaging immune systems and destroying lives: HIV. Since then, AIDS has gone from being the scourge of relatively small groups, such as gay men and injecting-drug users in rich countries, to arguably the biggest threat to life and prosperity in the developing world.
The body count is staggering: an estimated 39 million people with HIV, 5 million of them newly infected and 3 million dying of AIDS last year alone. Numbers this big are both impressive, and curiously meaningless. When scientists say that 60 million people have been infected since the epidemic began, or that more than a third of the pregnant women in some southern African states have HIV, or that average life expectancies have fallen to 40 years because of AIDS, it is hard to absorb the full political, economic and cultural implications of this grim accounting.
Epidemics are more than medical phenomena: they are shaped by, and in turn influence, complex social interactions. This conference will look beyond the science and statistics of AIDS to the disease’s broader, and subtler, effects – on political governance, international security and human rights. We will examine the practical challenges and ideologically controversies in scaling up prevention and treatment worldwide. Finally, we will look ahead to how HIV will shape our world over the next two decades.
How AIDS affects individual lives today is painfully clear. Last year I visited a young man called Mahari, who lived in one of Addis Ababa’s teeming slums. What Mahari most wanted in life was to play the krara, a traditional musical instrument, with his band at a local nightclub. All he could do, however, was lie in the tiny tin shack he shared with half a dozen relatives, and waste away. Mahari was in the final stages of AIDS. His elderly mother sat by his side in silent sorrow and confusion, staring at an icon on the far wall. No one in Mahari’s family ever acknowledged that he had AIDS – the stigma was too great and the knowledge brought little comfort without the possibility of treatment.
Mahari received a steady stream of visitors from various NGOs, making sure he had enough to eat and that he was kept as clean and comfortable as possible. But they lacked what he needed most: treatment to tackle HIV. Last summer, a month’s antiretroviral therapy cost as much as $85, which patients had to pay themselves. As the total monthly income of Mahari’s family was less than $12, this pharmaceutical lifeline was well out of reach.
Today, with international support, the Ethiopian government is starting to roll out free AIDS treatment. Unfortunately, I have lost track of Mahari. We are all statistics in someone’s ledger: I would like to believe hat Mahari lived long enough to become a figure of hope – one of the lucky beneficiaries of the “3 by 5” bandwagon, an international push to get half of the 6 million people in developing countries urgently needing anti-retroviral therapy on treatment by the end of this year – and not another body in the annual estimates of AIDS-induced destruction.
Anatomy of a disaster
AIDS is not a single epidemic; like a sad universal melody, the disease plays out in different rhythms and different voices in various parts of the world. Sub-Saharan Africa accounts for almost two-thirds of all HIV infections, and transmission between men and women is the norm. Here the epidemic has reached a “mature” phase, where HIV prevalence has essentially levelled off – at just over 7% across the region – because the numbers of new infections are matched by the numbers of deaths. Averages are deceptive, however: AIDS south of the Sahara is as diverse as the countries themselves. East Africa is showing the most encouraging signs, with declines in HIV prevalence in parts of Kenya and Ethiopia; in West Africa, the epidemic has largely stabilised; but AIDS continues to gallop through Southern Africa and is making a comeback in Africa’s early success story, Uganda. In Asia, AIDS changes its tune not just between nations, but from region to region within the same country. The continent’s two most populous countries are, not surprisingly, the biggest sources of concern. China has an estimated 1.5 million people with HIV; an epidemic which started in a handful of regions through unsafe blood donation, has now spread to all 31 provinces, mainly through injecting drug use and commercial sex. India is home to roughly 5 million people with HIV, concentrated in particular states. In Tamil Nadu, for example, the epidemic is spreading mainly through commercial sex; in Manipur, HIV is running wild, largely in male injecting drug users and their female sexual partners. In some countries, such as Pakistan, HIV is just starting its spread, whereas the longstanding epidemics in Cambodia and Thailand are entering a new phase with a fall in the numbers of new HIV infections.
AIDS marks a great divide between eastern and western Europe. Russia and the Ukraine are struggling with HIV, which is spreading among injecting drug users and increasingly their sexual partners. One of the grimmest aspects of the eastern European epidemic is the age of its victims; 80% of Russia’s estimated 860,000 HIV infections are less than 30 years old. In western Europe, transmission between men and women now accounts for most new HIV infections; in Britain, for example, as many as three-quarters of these new cases are among people born in sub-Saharan Africa – yet further problems to add to the hard lot of immigrants and plenty of fuel for fierce political debates on immigration policy. While infection rates are rising and testing remains low in certain populations, deaths from AIDS in western Europe have plummeted and stayed steady thanks to effective anti-retroviral drugs and other treatment services introduced in the 1990s. The emergence of drug-resistant virus and drug side-effects are, however, growing concerns.
In America, HIV is gaining ground among African-Americans, who make up 12% of the population but now account for a quarter of the country’s million or so AIDS cases. This epidemic, spreading mainly among heterosexual men and women, is fuelled by poverty, limited access to healthcare and needle exchange services, as well as high rates of incarceration of African-American men which exposes them to that hothouse of HIV transmission – prison. There is also resurgence of infections in men who have sex with men, as a new generation makes its sexual debut without the memory of blanket safe-sex campaigns and the death toll of the 1980s and 1990s. As in Europe, widespread anti-retroviral therapy is a blessing, but drug resistance and side-effects are already a problem.
Further south, AIDS has a firm grip on the Caribbean – the region with the second highest rates of HIV and AIDS after Africa. In the Caribbean, HIV is principally spread between women and men, yet there is significant (and sometimes hidden) spread between men, complicated by prejudice and stigma against homosexuality. With an overall prevalence of 2%, AIDS is now the leading cause of death among adults 15-44 years old. Even Cuba, which had managed to keep the epidemic in check thanks to sound measures (strong prevention programmes, good healthcare services, universal free access to anti-retroviral therapy), and more questionable ones (such a quarantine in the 1980s), is seeing a rise in new infections. AIDS has also taken hold in Central and South America, notably in Guatemala and Honduras where national adult prevalences now exceed 1%. Brazil’s epidemic, still mainly amongst men who have sex with men and injecting drug users, is spreading into the population at large through sex between men and women. The country’s policy of universal, free antiretroviral therapy now reaches 140,000 people with HIV – more than 80% of those in need of treatment – and has led to a remarkable rise in survival rates, a model for the developing and developed world alike.
For all the epidemics’ diversity, one feature is depressingly similar: the rising tide of female infections. Women and girls are particularly hard hit by HIV, as the virus ripples through heterosexual intercourse from high-risk groups into the general population. For every 10 men infected with HIV in sub-Saharan Africa, for example, there are 13 women who also have HIV. Young women are especially hard-hit: in South Africa, women aged 15-24 years old are three to six times more likely to be infected than young men.
Women are more vulnerable to HIV infection than men, through ignorance of AIDS and a lack of preventive measures within their control, coupled with a poor economic opportunities and cultures which limit their choices. In many parts of the world, women and girls engage in so-called “transactional” sex for the bare necessities of life – food, housing, school fees. This is not prostitution, but simply the way women with little education and low-paying jobs get by. Their partners are very often older men, who are more likely to be HIV-infected than their own peer group, thus raising women’s risk of contracting HIV. Sexual violence, in the home and on the street, is another point of female vulnerability; an additional worrying development is systematic rape in times of war, particularly during recent central African conflicts where AIDS itself has become an offensive weapon. Social convention in times of peace can be just as dangerous: girls and women are often kept in the dark about the basic facts of life, and prevented from speaking openly to their husbands and partners. AIDS is a double curse for women and girls: whether or not they themselves are infected, caring for family members usually falls on their shoulders, further hampering their education and economic opportunities.
Abstinence until, and fidelity within, marriage is advocated by religious conservatives and by America’s flagship anti-HIV programme, the President’s Emergency Plan for AIDS Relief (PEPFAR), as protection for women against HIV. Ironically such a policy can actually put young women at greater risk of infection than their unmarried peers. Young brides are often less educated than single women, and many wives have little power to abstain from sex or negotiate condom use with their husbands, even if the latter are known to be infected or at risk of contracting HIV. The most effective means of protecting girls and women from HIV is basic education, which in turn offers them a ticket to better jobs and social empowerment. Teaching boys and men to eschew sexual violence and develop more responsible sexual behaviour is another important, yet often overlooked, approach. Technology, in the form of microbicidal gels (which block vaginal or anal infection) and vaccines, may one day give women and girls new options to tackle HIV. In the meantime, stronger laws to protect women’s rights to property and inheritance, as well as social policies which take better account of women’s interests, can pack a powerful punch.
Then there are the orphans of this storm. Today there are roughly 11 million children in sub-Saharan Africa who have lost at least one parent to AIDS, 10 million more than in 1990. The situation is set to worsen dramatically. By 2010 there could be as many as 20 million children orphaned by AIDS in sub-Saharan Africa; even if widespread treatment were available, it would, at best, spare 1.8 million children that pain of losing a parent to the disease.
Orphaning rates above 5% are extremely worrying because they exceed the capacity of the local community to care for such children. So how do places like Zambia, where almost 12% of children have lost one or both parents to AIDS, cope? Not well enough. Orphaned children tend to be poorer than non-orphans, and face a higher risk of malnutrition, stunting and death, even if they do not have HIV themselves; those who are infected have a hard time accessing treatment, and there are few drugs formulated for children. Such children are further burdened by the psychological trauma of caring for parents who are dying of AIDS. Then there is pain of separation from siblings, as orphaned children are farmed out to relatives – often to grandmothers who have limited energy and resources to care for their growing broods. And though such domestic tragedy is depressingly common across sub- Saharan Africa, children still face a heavy load of social stigma and discrimination which comes from growing up in an AIDS-affected family.
Nor are their prospects any brighter. Orphans – especially girls – are less likely to attend school, in part because they lack the money for fees, uniforms and books, but also because they are pulled out of class to care for those at home, and secondary caregivers may not put the same emphasis on education as a parent. Many orphans drift onto the streets and into crime, as the teeming slums of Nairobi and Lusaka attest. Many go to work: in Zambia, for example, more than two-thirds of child prostitutes have been orphaned by AIDS, and their risky business further exposes them HIV. This tragedy is now passing on to the next generation as these orphans begin to have children of their own, without the benefit of parenting and other life skills taught by their own mothers and fathers. More than half of Africa’s population is under the age of 16; the long-term repercussions of such a massive blow to the continent’s youth are serious indeed.
There are now some attempts to break this awful cycle. In Uganda, for example, Plan, an international NGO, is supporting “succession planning” to help parents and their children come to terms with impending death, training guardians and helping families to prepare “memory books” so that children at least have some meaningful record of their parents. Some of the worst affected countries in sub-Saharan Africa have recently formulated national plans to respond to the needs of orphans and other children made vulnerable by AIDS. Both Uganda and Kenya are offering free primary education, which is allowing millions more children, among them AIDS orphans, to go to school; elsewhere, extra efforts are being made to attract orphans to classrooms with free meals and cash grants. While such initiatives are welcome, they require careful handling, because special treatment for those orphaned by AIDS can have the perverse consequence of even greater stigma, and prompt poor families to abandon their children in order to access any benefits orphans might enjoy. Much more needs to be done across Africa to come to grips with the orphans crisis, including laws to protect children’s rights to inheritance and freedom from abuse, and more money from international donors: one early estimate has put the cost of tackling Africa’s problem at $250 per orphan per year.
Symptoms and side-effects
AIDS affects societies in myriad ways; the ones that get the most attention are those with big numbers attached. Among these are the economic consequences of AIDS. The disease scythes societies’ most economically-productive age group, reaping doctors, teachers, managers, workers, farmers: in Mozambique, for example, labour force losses due to AIDS are projected to increase 10-fold between 2000 and 2020, to 20%. The direct and indirect costs of AIDS – from medical treatment and funerals to lost days from work – are chopping the income of households in Côte d’Ivoire in half. Extrapolate that nationwide, and you end up with such alarming estimates as a 0.5-1% annual loss in growth of per capita GDP in countries with an adult prevalence of HIV of more than 10%. While a blow to regional development, African AIDS has little impact on global economy since the region accounts for only 1% of world GDP. But AIDS in Brazil, Russia, India and China – the so-called BRIC economies – could have far more serious global economic repercussions, since these countries alone account for 8% of world GDP and are centres of manufacturing and outsourcing. Such figures should serve to focus the minds of finance ministers across the developing world. But it should also give big business pause for thought. AIDS hammers companies through declining workforce productivity and rising costs of medical care, benefit payments, insurance premiums, absenteeism, recruitment costs and disrupted production. While the impact varies according to firm and industry, operations across southern Africa are feeling its force. Xstrata, a mining firm, puts the cost of HIV to its operations at 3-6% of its payroll; on the demand side, JD Group, a South African furniture manufacturer, has projected an 18% fall in its customer base because of AIDS.
Some firms in Africa are fighting back, funding serious epidemiological surveillance and knowledge and behaviour studies to better understand the magnitude of AIDS and how their employees are affected. Corporate responses range from policy-making to tackle in-house discrimination and lobbying governments to do more on the AIDS, to sponsoring HIV prevention and education campaigns, to providing nutrition, psychological and medical support to people with AIDS. Some are ambitiously funding and delivering anti-retroviral treatment, not just for employees and their dependents but to the local community as well. None of these initiatives comes cheap – prevention programmes can cost up to $15 per employee per year, while annual anti-retroviral packages weigh in at $500-900 per employee. But the savings can be substantial: a one-year extension of an infected employee’s life through treatment can reduce net costs to a company by 8%, rising to a 25% savings if that lifeline can stretch out to three years.
There are interesting examples of domestic and foreign companies, as well as business coalitions, responding to AIDS outside of Africa – in India and Thailand, for example. On the whole, however few multinational firms are factoring HIV into their risk assessments of operating in the BRIC economies, nor are they yet implementing the sort of initiatives seen in South Africa. This needs to change, since early intervention packs a bigger, cheaper punch than belated action.
In addition to its economic effects, AIDS poses direct challenges to political governance as well. As a succession of South African leaders has discovered, AIDS raises awkward questions about government competence to acknowledge, let alone manage, this chronic crisis. In a double whammy, AIDS also undermines political structures by culling civil servants and politicians, thereby eroding the human capital of government. Many governments try, naturally enough, to contain the immediate political damage by excluding those who are infected or relegating the response to historically understaffed, underfunded health ministries.
But AIDS is not a disease to be neatly tucked away, and unless the government response tackles gender inequality, poverty, discrimination against sexual minorities, neglect of drug users and other deep-seated problems which promote the disease’s spread, then their efforts will be as effective as bandaids to treat cancer. In Canada or Britain, for example elections are won, and lost, on the state of healthcare; although AIDS is by far the biggest threat to sub-Saharan Africa, there are only a handful of politicians who see it as enough of a political threat to take the lead on AIDS. If health and economics do not grip national leaders, then perhaps worries over national security will. AIDS is compromising the ability of African countries to defend themselves: the US National Intelligence Council estimates that 10-20% of the Nigerian armed forces has HIV, and that 40-60% of the Angolan military is infected. Soldiers are at special risk, being young, mobile and sexually active with an appetite for risky behaviour – the perfect breeding ground for HIV. AIDS undermines military fitness and complicates recruitment, making it harder for countries to deploy forces at short notice and can have serious international implications if those sent abroad, such as peacekeepers, spread their infection. The economic and political stresses of HIV do not help countries keep the peace; war and its aftermath in turn promote spread of HIV through population displacement, disruption to medical systems and less official attention to, and investment in, healthcare.
Prescription for change
Dealing with AIDS is not rocket science. Two decades of experience has shown that the most effective programmes are those that balance prevention and treatment. This includes voluntary counselling and testing for HIV and other sexually-transmitted diseases, public awareness campaigns, the “hardware” of prevention (condoms and sterile injecting equipment) and treatment (drugs to tackle HIV and associated infections, as well as mother-to-child transmission), along with social support services and legislation to combat denial, stigma and discrimination. It takes a wide range of actors to deliver these goods, drawn from government, the private sector and civil society; among the most forceful leaders are those at the sharpest end of the epidemic – people infected with HIV. The world is starting to see success stories, where good science, sensible policies and sufficient resources have enabled local communities to triumph over HIV; the challenge is in “scaling up” these small victories across the world.
After years of parsimony, international support is now pouring into AIDS. An estimated $27 billion has been committed by bilateral donors, multilateral institutions and philanthropic organisations for the fight against AIDS from 2005 to 2007; among the biggest spenders are the Global Fund to fight AIDS, Tuberculosis and Malaria, the World Bank, PEPFAR (which has pledged $15 billion over five years, focussed on 15 countries) and Britain, whose government has promised £1.5 billion ($3 billion) over three years. AIDS is now big business; while such massive inflows of aid are welcome, they do pose serious macroeconomic problems in poor countries which lack the “absorptive capacity” to spend the funds expediently. But the dismal science looks even grimmer when questions of long term economic stability square off against immediate suffering and death.
Despite this newfound largesse, at least $18 billion more will be needed to do the job properly says UNAIDS. Clearly, rich countries will have to pay more than just lip service to their pledges to spend 0.7% of GDP on development assistance, and poor ones will have to give a higher priority to health in their national budgets – and make good use of promises of debt relief now on offer. But new sources of finance – from international capital markets and the private sector, for example – will have to be tapped if this sum is to be raised.
The most potent, and problematic, symbol of this international push is the drive to put millions on anti-retroviral therapy. Two years ago, only 400,000 of the 6m people with AIDS in developing countries who could most immediately benefit from antiretroviral treatment were getting the medicines, a quarter in Brazil alone. Today that number has jumped to roughly 1m, a far cry from the target of 3m by the end of 2005, but welcome progress nonetheless.
What makes this massive campaign conceivable is a sharp drop in the price of drugs. Four years ago, a basic cocktail of anti-retroviral medicines cost $10,000 a year; today, that price has fallen to as low as $150 in some countries. The dramatic decline is largely thanks to the introduction of cheaper generic versions of key drugs from Indian, Brazilian and Thai manufacturers, as well as deep discounting by multinational drug firms.
At this critical juncture, the world needs to focus on the main thrust against HIV, not fritter away its resources on skirmishes which will do little to win the day. One such tension lies in HIV treatment, between those pushing for generic anti-HIV medicines and programmes such as PEPFAR, which rely on so-called “tied aid” and mainly buy American branded drugs. Donors and purchasers should be held to account if they fail to buy from companies – be they generic or branded drug makers – that can match the $150 price, or lower, with safe, effective and convenient formulations. Above all, it is critical for donors to help national governments to develop their own procurement plans and distribution systems.
This new emphasis on treatment has given rise to a second concern, among those who worry that HIV prevention is being side-lined. Treatment is certainly an easier sell for politicians, in part because it is simpler to measure a positive – the number of people you put on pills – than a negative – the number of infections you avoid. And while discussions of treatment can be kept coolly clinical, prevention plunges into the messy business of being human, including sex and drug use. Matters are not helped by the third of these skirmishes, tussles over the value of abstinence and the effectiveness of condoms in stopping the spread of HIV. These, in turn, are related to the fourth of such battles – the involvement of “faith-based” organisations in AIDS programmes, particularly PEPFAR.
In reality, prevention and treatment are intimately linked. If services are not scaled up to deliver both outcomes, neither alone will achieve its full potential. In an age of treatment, prevention is ever more critical, as treatment keeps more people alive, thereby increasing the pool of virus to be spread. Unless the 5 million new HIV infections a year can be reduced, struggling to treat 3 million is just running to stand still. While prevention helps treatment, treatment in turn makes prevention easier, because people are more likely to come in for testing if they know there is some hope of therapy. For the moment, however social barriers make reaching needy, yet vulnerable populations – drug users, prostitutes, homosexuals – extremely difficult. Prevention includes condoms, abstinence or fidelity, depending on individual circumstances; people must be free, with full information and ample opportunities, to make that choice themselves, rather than have it pre-ordained by those providing the service. There is no reason, a priori, why religious organisations should not play a part in this – indeed some of the best medical care in sub-Saharan Africa has been offered for generations by the Catholic church. Faith is a powerful tool against affliction, but when it comes to tackling HIV, it must be informed by sound science. As the global push against AIDS presses on, success depends on several key factors. Given the scarcity of resources in poor countries, HIV programmes must make efficient use of the existing infrastructure and expertise. This includes groups – such as those involved in family planning and reproductive health – which were originally at the heart of the response, yet have become isolated from the main thrust against HIV, often because of squabbles over money and resources. Recent international discussions to link the various camps are helpful, and should be quickly followed by strengthening alliances in the field, and finding ways to overcome donor restrictions, such as America’s so-called “Gag Rule”, that limit the provision of sexual and reproductive health services to women and girls.
Efforts to enhance the global response to AIDS are increasingly complicated by Western donors. While rich countries now offer the hope of new resources, these come with such strings attached and are delivered in such a way as to complicate the lives of those whose efforts are best directed at managing and delivering services and setting national strategies, rather than coping with donor demands. Donors need to do far more to harmonise their efforts – coordinating their activities on the ground, and ensuring that they are not duplicating, or worse, competing with, each other’s efforts. Donors also need to support the recipient country’s priorities, working closely with national authorities and helping them to set in place plans that represent the best national response. Some donors ignore the fact that it will be left to local groups to sustain their programmes long after the foreigners have left. Priorities in donorsponsored projects should be set according to local needs, not simply those which satisfy political interests back at home.
Central to a long-term sustainable response to AIDS is the creation of broad-based healthcare systems, and ensuring that enough people are trained and able to provide a wide range of services, for AIDS and any other condition. The biggest problem facing many poor countries is their lack of doctors, nurses, community health workers and medical administrators; there are more Malawian doctors in Manchester, for example, than there are in Malawi. But the flow of healthcare workers is not just to the West; within poor countries themselves, some donors are siphoning off the best talent for their individual programmes by offering salaries far higher than local operations can provide, leaving the rest of the health service struggling for staff. Workers are also tempted to other countries in the region, by better salaries or more conducive working conditions. Why should a nurse struggle as a de facto mortician in a cramped hospital with beds overflowing with people dying from AIDS, when she could be working in health facilities with modern equipment and the right medicine to treat AIDS just across the border? Training, and retaining, healthcare workers remains one of the biggest challenges in the struggle against HIV.
Above all, those dealing with AIDS must look ahead. Confronting AIDS is not like eliminating polio, where a shot can offer a reasonably quick fix. AIDS is a chronic complaint for those lucky enough to get treatment – but there is still no cure. It is not enough for the rich world to talk about starting poor people on anti-retroviral drugs; it must be prepared to scale up the health services to deliver the medicines, and then keep the cash flowing to continue their treatment, and follow their progress, for as long as they live. The arguments for sustaining treatment are medical, as well as moral; breaks in therapy can lead to the rise of drug-resistant strains of HIV, which is bad news for everyone. And until there is an effective, affordable AIDS vaccine or microbicide, there will be ever more people requiring treatment. All this means that 2005 is just the beginning of a very long and expensive process; few countries, rich or poor, have yet to talk seriously about how to honour such lifelong commitments.