Feature

Don’t die of poverty

Contrary to the slogan, AIDS is prejudiced. Both the spread of HIV/AIDS in the population and our response to those affected are characterised by poverty, argues Neil Small

The world-wide pandemic of HIV/AIDS is seen as essentially linked with behaviour. Transmission is mainly via sex or through sharing drug-injecting equipment. The conventional view is that education offers the most effective response. People can be told the nature of the risk and encouraged to adopt behaviours which minimise their chance of exposure to the virus.

The method of transmitting the virus might remain the same but there is an increasingly persuasive case to be made for shifting the general heading under which we understand the pandemic from a behavioural explanation to one that sees HIV/AIDS as a disease of poverty. As with cholera and typhoid so with HIV and AIDS, poor people are more likely to contract them and to suffer and die with them. If we think of a disease as one of poverty then we can, perhaps, move beyond individualising cause or cure and look at reasons for susceptibility. Collective solutions might emerge that offer more hope than the individual behavioural change that we now rely on.

Identifying something as a disease of poverty does not deny the biomedical dimension. There is still a virus to be faced. But it does mean that we need to examine the interaction of the virus with susceptible populations in suitable environments. In each of these three crucial areas poverty plays a part.

Absolute poverty

The prevalence of HIV in sub-Saharan Africa, India and some other south-east Asian countries, can be closely identified with both the poverty of the populations most affected and also the poverty of the preventive and treatment facilities available to combat the virus. Pre-existing illness makes one more susceptible to contracting the virus and rapidly developing severe symptoms. The prevalence of poverty corresponds with a shortage of primary and tertiary care facilities and, indeed, of basic preventive care, clean needles and other sterile equipment for example. In the US, rates of infection among people living on the street in the great metropolitan centres exhibits, in microcosm, the picture of poverty and illness evident in parts of Africa and Asia.

Where poverty and HIV/AIDS co-exist we can also see a return of an older enemy, HIV-associated tuberculosis. Responding to the link between two of the most feared conditions of the 20th century underlines many of the challenges healthcare systems face. The established response to tuberculosis focuses attention on identified and compliant individual patients. It includes complex drug regimes and a heavy laboratory load. An alternative approach would emphasise that maximum public health impact is achieved by aiming for adherence to effective therapy after diagnosis, delivered in a simple way with minimal subsequent investigation. It is an approach that recognises the shortcomings of concentrating resources on the ‘good’ individual and emphasises looking for the way of reaching the widest possible group.¹

Relative poverty

HIV infection is increasingly identified with economically disadvantaged groups. In the US it was evident some years ago that in cities like New York the distribution of those infected was shifting from the areas with a high proportion of male gay residents to areas of poverty, and specifically of poor people of colour - from lower Manhattan to the Bronx and Brooklyn.

As the HIV epidemic moves into economically disadvantaged and ethnically identified minority communities it takes on a new character. It includes more women and children and, more generally, people without the social or financial resources to combat the disease. Many of these communities lack a medical or social services infrastructure.

In recent years something of a balance has been achieved in the US as the annual number of sero-conversions (of about 44 to 50,000) equals the annual number of deaths. But this macabre ‘steady state’ of around 890,000 positive people in the US hides two things: first, improved treatment may reduce the death rate; second, the preventive strategies that have had some success may not work with a new sort of population and infection rates may rise again.²

Socio-economic status is an important predictor of mortality. It is no surprise that there is an inverse relationship between income and mortality in HIV infected people.³ Both high rates of poverty and of inequality have substantial impacts on a population’s health.⁴

Poverty of provision

The Terrence Higgins Trust has consistently been at the forefront of responses to HIV and AIDS in the UK. It is increasingly being asked to provide advice and support for people who are homeless, or sleeping on other people’s floors. Twenty-four members of staff work with 800 volunteers, 500 of whom are ‘Buddies’ - people who take on a commitment to offer help to one person living with the virus. In 1994 the telephone helpline dealt with 22,500 calls, with a projected 15 per cent increase in 1995. Costs are already low because of the reliance on volunteers, but available funding has now been cut to £30,000 a year. Overall, central government has cut the trust’s grant by £300,000 and it now has to negotiate for funding with health and social care purchasers, many of whom do not have the needs of HIV positive people high on their agenda.

The 1995 policy that ends both the AIDS support grant (a Department of Health award to local authorities) and ring-fencing of allocations to health authorities is being implemented at a time when the rise in purchasing for health and social care have generated widespread uncertainty and insecurity.

The picture is the same all over the country: George House Trust in Manchester, more demand but fewer paid staff; Leeds AIDS Advice, a full-time social services-funded post lost; Merseyside AIDS Support Group, cuts in money for staff and for a transportation service.⁵ The list could go on.

Poverty of imagination and will

The HIV epidemic has called into question many of the tenets of the established model of infectious disease epidemiology. It has further questioned our knowledge of sexual behaviour. When we consider, for example, the widely different patterns of HIV infection rates between injecting drug users in the cities of Glasgow and Edinburgh, or the complex changes in sexual behaviour identified in gay men, we see that we need not only the imagination to ask the right questions but also to make sense of the answers.⁶

But the challenges to our imagination move outside and beyond the methodological. How far can health education, and models of caring about and for people with HIV and AIDS, take on the examples of commitment and challenge evident in the world-wide response of gay men to the epidemic? How far can we incorporate what this epidemic teaches us about the place of medicine in our society, its potentials and its limitations? Most importantly, can we look at the pandemic and accept that narrow parochialism, the retreat behind national frontiers, has no rational justification in the global village?

But it is not just our imagination that is challenged and in many cases found wanting. It is also our will.

Two sorts of poverty of the will are most prevalent. First is the widespread discrimination and stigmatisation that still exists. There are many examples; in the UK, the government’s hostility to legislation that would make it unlawful to discriminate against people with disabilities and the bitter fight that ensued through 1994 is just one.

Second is the reluctance with which national governments support international health initiatives. Sometimes ‘reluctance’ is just a polite way of saying that they do little. Other scenarios are more complicated. For example, the decision by the European Union to extend its existing programme to combat AIDS to cover the other communicable diseases might be seen as a realistic assessment of AIDS as one among many related diseases. Or it might provide a rationale for putting AIDS lower on the priority list. What it will certainly mean is that an agenda designed to combat discrimination and to seek empowerment will not be pursued as the new, generic priority. Are such changes best understood as mainstreaming or marginalising? (A question I have examined before, healthmatters issue 20.)

Internationally the observations of leaders of the effort to combat the epidemic are sobering. Professor Jonathan Mann recognises the achievements of the World Health Organisation’s global AIDS strategy and the need to build on its successes and think again in the areas in which it proved to have little impact. But, he argues, ‘in the face of a continually expanding and intensifying pandemic, political and societal commitment to HIV/AIDS seems to be declining’.⁷

Mobilisation not procrastination

There have been world-wide mobilisations to eradicate smallpox and polio. They succeeded because of the recognition of the need to address the biological, the social and the environmental. We have to see what something truly is before we can respond effectively to it. HIV/AIDS is a disease of poverty. Poverty is not only about individuals and communities. It is also about health and social care systems and about the imagination and the will.