This book concerns HIV prevention. The authors argue that until the world focuses its attention on the social issues carried and revealed by AIDS, it is unlikely that HIV transmission will be eradicated or even significantly reduced. Currently we are witnessing the remedicalisation or the continuing biomedicalisation of HIV prevention, which began in earnest in 1996/7 after the development of successful HIV treatment. This biomedical trajectory continues with the increasing push to use HIV treatments as prevention, and it appears to have undermined what has been - at least in many countries - a successful prevention response.
This book's argument is that at least until such time as biomedicine develops an effective prophylactic vaccine and a cure for HIV, the world must rely on the everyday responses of people and communities to combat the virus. Effective HIV prevention hinges on communities and the social practices forged by these communities that reduce the risk of HIV-transmission (primarily safe sexual and safe drug injection practices); people's willingness to be identified as infected with HIV (HIV testing practices); and, for people living with HIV, people's commitment to keeping AIDS at bay (HIV treatment practices).
Combating HIV also relies on governments to ensure access to HIV prevention tools, including condoms and sterile needles and syringes, as well as to biomedical prevention technologies including those derived from successful antiretroviral treatment (ART) - pre-exposure prophylaxis (PrEP), microbicides and post exposure prophylaxis (PEP), and male circumcision. It requires that governments develop robust health infrastructures to support and enable regular HIV testing and provide access to treatments for those living with HIV. Effective HIV prevention needs governments to adopt pragmatic policies that are not deflected by moralistic or conservative ideologies. Effective responses to HIV, on the part of communities, health professionals and governments are all underpinned by public discussion about sex, sexuality and drug use. More broadly, combating HIV depends on civil society resisting HIV stigma and discrimination against those infected and affected by HIV, and enabling people and communities to discuss sex, sexuality and drug use in ways that promote the development and adoption of safe sexual and drug injection practices.
About the Author
Susan Kippax is Emeritus Professor at the University of New South Wales, Sydney, and a Fellow of the Academy of the Social Sciences of Australia.
Niamh Stephenson is a Senior Lecturer in Social Science at the University of New South Wales.
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Socialising the Biomedical Turn in HIV Prevention
By Susan Kippax, Niamh Stephenson
Wimbledon Publishing CompanyCopyright © 2016 Susan Kippax and Niamh Stephenson
All rights reserved.
MAPPING A SOCIAL DISEASE
As the Joint United Nations Programme on HIV/AIDS (UNAIDS) annual country reports demonstrate, there is not one HIV epidemic but many (UNAIDS, 2014a, 2104b). There are differences in the patterning of HIV prevalence and HIV incidence, in HIV-transmission routes and also in terms of HIV-prevention responses and treatment uptake, all of which vary from country to country and from region to region. There is no singular HIV epidemic: the patterning is local and particular. For example, HIV prevalence ranges from zero in Nauru, a small island in the Pacific that currently has no case of HIV/AIDS, to Swaziland, a country in southern Africa that has one of the world's highest HIV prevalence rates: 31 per cent among adults aged 18–49 years (2014b), a rate that has not changed significantly since 2001 (Whiteside & Strauss, 2014). Because there is not one epidemic, the promise of one 'silver bullet' HIV-prevention strategy is illusory. Rather, we argue here that understanding what kinds of HIV-prevention efforts work, and how they work, demands engaging with the specificities and contingencies of particular epidemics. Understanding and enabling an effective HIV-prevention response demands input from social scientists.
A Brief Review of HIV/AIDS
AIDS was first documented in the United States among gay and other homosexually active men in 1981 and, although not identified until later, it was also affecting people in that country who injected drugs. However, it is now clear that long before its identification in the United States – and perhaps as early as the 1920s – AIDS was taking a toll on people in Africa, the majority of whom were heterosexual. Since that time HIV, the human immunodeficiency virus that causes AIDS, has spread from a few widely scattered 'hot spots' to virtually every country in the world. Globally, in 2013 between 32.2 and 37.2 million people were living with HIV, although since 2001 new infections have fallen by 38 per cent (UNAIDS, 2014a).
High prevalence (the proportion of the population living with HIV in a given year) is associated with 'generalised' epidemics, where the major route of transmission is vaginal sexual intercourse in the 'general' (heterosexual) population, while in 'concentrated' epidemics HIV is transmitted primarily through anal intercourse among gay and other homosexually active men, or via injecting practices among people who inject drugs, as well as between sex workers and their clients. Concentrated epidemics, in which HIV is limited in the main to the above sub-populations of people, tend to have lower HIV prevalence rates.
The majority of people living with HIV acquired the disease during their adult years, most as a result of engaging in sexual (primarily vaginal and anal intercourse) and drug injection practices, both profoundly social practices related to intimacy and pleasure. HIV is also transmitted from HIV-infected mothers to their children when giving birth and breastfeeding. It can also be transmitted by the use of contaminated blood or blood products, although most countries have now secured their blood supplies.
The advent of effective treatments in the form of antiretroviral treatments (ART) in 1996 changed the face of the HIV epidemic – in both anticipated and unanticipated ways. ART has meant a huge reduction in AIDS-related deaths among those who have access to these treatments. Although access continues to be a problem in low-income countries, it has increased exponentially in recent years, and in 2013 UNAIDS estimated that around 35 per cent of people living with HIV who were eligible for treatment did not have access to ART (WHO, 2013a). As a result of ART, the number of people dying of AIDS-related causes fell to between 1.4 to 1.7 million in 2013 (UNAIDS, 2014a), down from a peak of between 2.2 to 2.6 million in 2005, which means that globally HIV prevalence has grown and will continue to grow. ART enables the majority of people living with HIV to have reasonably normal lives as long as they continue to adhere to the treatment regimen – and they need to do so for the rest of their lives. There is concern about the long-term impact of treatments and evidence that many stop taking ART. A recent estimate (WHO, 2013a) based on 23 countries found that around 28 per cent of those on ART stop taking their medication after five years, many doing so because they no longer feel ill. Similarly, there are some people, although far fewer, who resist taking up treatment as they do not feel ill. Notwithstanding the challenges of providing access to treatment and of the issues related to uptake and adherence, treatment in the form of ART, although not a cure, has meant that the vast majority of people with HIV live with a manageable chronic disease and no longer face an almost certain early death.
Furthermore, as recently demonstrated by Vernazza et al. (2008) and Cohen et al. (2011), because ART reduces the viral load of those living with HIV, it reduces the risk of HIV transmission to others with whom they have sex or share injection equipment. It therefore has a prevention benefit, and this fact has informed a prevention strategy referred to as 'treatment as prevention' (TasP). HIV incidence (the number of new HIV infections in a population in a given year) has fallen and continues to fall. Worldwide, 2.1 million people became newly infected in 2013, a drop of 38 per cent since 2001, and in the same time period new infections declined among children by 58 per cent as a result of the prevention of mother-to-child transmission programmes (PMTCT) (WHO, 2012, 2014). While some of the decline in HIV incidence may be a function of lowered population viral load and the role of ART in prevention, the decline in HIV incidence began well before the advent of – and widening access to – effective treatment. It is clear that a range of prevention initiatives were and are working – at least in some places and to some degree. With reference to sexual transmission, the use of condoms and reduction in the number of sexual partners have proved successful HIV-prevention strategies, as has the provision of sterile needles and syringes and opioid substitution treatment for those who inject drugs.
Prevention is not simply a biomedical matter and should not be restricted to the clinic. While biomedical prevention strategies such as TasP and male circumcision may reduce the likelihood of HIV transmission, unless we focus attention on the social, as Fassin (2007) has cautioned, we will fail to eradicate HIV. Coates et al. (2008, 676) also note that HIV transmission is a 'social event'. HIV-prevention strategies need to move beyond an attempt to modify the behaviour of individuals who interact with health facilities and are receptive to HIV testing and counselling. Unlike people living with HIV, who are likely to take the advice of public health authorities, those who are uninfected may not be so easily accessed or persuaded. Even if they come forward for frequent HIV testing, they are far less likely than people living with HIV to follow the advice of medical authorities, as we discuss in Chapter 5.
For HIV-prevention strategies, including biomedical strategies, to be effective, they need to acknowledge and engage with the very varied local sexual and drug injection practices of communities and networks of people: community engagement is central to HIV prevention. Effective prevention strategies are rarely generalisable – unlike treatment which, when an efficacious remedy is found and made easily available, almost all individuals benefit from adhering to the treatment regimen.
As we discuss in the remainder of this chapter and in the chapters to follow, countries and regions have different epidemics and have responded in different ways. Certain HIV-prevention strategies are effective for some people and not others, in some places and regions and not others and at some times and not others. HIV is spread by profoundly social practices, and its prevention is aided or thwarted by social practices, which differ from population to population, from region to region and from time period to time period.
Here we indicate some of this variation. Our purpose is not to provide a comprehensive overview of the global epidemics but to indicate some of the known differences and the often very particular HIV epidemics that those involved in prevention across the globe are continually challenged to address.
Sub-Saharan Africa is most severely affected: 24.7 million people were living with HIV in 2013, with nearly 1 in every 20 adults (4.9 per cent) infected, and accounting for around 70 per cent of the people living with HIV worldwide. Notwithstanding the very high prevalence in this generalised form of the HIV epidemic, new infections declined in sub-Saharan Africa by 33 per cent between 2005 and 2013. Treatment coverage is 37 per cent of all people living with HIV, and since 2009 there has been a 43 per cent decline in new infections among children (UNAIDS, 2014a).
Although the regional prevalence of HIV infection is nearly 25 times higher in sub-Saharan Africa than in Asia, 4.8 million people are living with HIV in Asia and the Pacific, and new infections declined by 6 per cent between 2005 and 2013; however, in Indonesia, new HIV infections have risen by 48 per cent – a cause for concern (UNAIDS, 2014a). In Latin America, where 1.6 million people are living with HIV, there was a small decline of 3 per cent in new infections between 2005 and 2013. In the same period, in the Caribbean, with 250,000 people living with HIV, new infections declined by 40 per cent (2014a). In Asia and the Pacific, Latin America and the Caribbean, HIV transmission occurs among 'key populations': men who have sex with men; people who inject drugs; and sex workers and their clients. Treatment coverage varied across these regions, with 33 per cent coverage in Asia and the Pacific, 43 per cent in Latin America and 42 per cent in the Caribbean (2014a).
Going against the recent trend in most countries of relatively stable HIV or declining incidence rates, HIV incidence rose by 5 per cent between 2005 and 2013 in Eastern Europe and Central Asia, which together had 1.1 million people living with HIV. And in the Middle East and North Africa, with 230,000 people living with HIV, incidence rose 7 per cent in this time frame (2014a). Treatment coverage is comparatively low: 21 per cent in Eastern Europe and Central Asia and 11 per cent in the Middle East and North Africa.
With reference to Western and Central Europe and North America, with a combined 2.3 million people living with HIV, although there were dramatic declines in HIV incidence up until about 2000, the HIV epidemic appears to have stabilised in these three areas. Treatment coverage is 51 per cent in these regions. However, there have been small increases in HIV incidence in many gay communities, the major at-risk population, across North America and Europe as well as in Australia and New Zealand.
The differential patterning of HIV infections is a function of many factors, including social, cultural and economic factors that influence the responses of countries to HIV and their ability to provide treatment and also the manner in which they support HIV prevention. Drawing on the UNAIDS Country Progress Reports, augmented where available by other data and reports, we provide some snapshots of several of the different dynamics of HIV epidemics – again, to illustrate the very particular and local nature of the patterning of the HIV epidemics and to raise questions about the nature of effective HIV prevention. We give examples of countries with high HIV prevalence and a more or less stable HIV incidence as well as examples of countries with low HIV prevalence. We also give an example of a country with increasing HIV incidence.
High prevalence countries
The countries with high HIV prevalence rates are, without exception, in southern Africa and, without exception, these counties have generalised epidemics. In some of these high prevalence countries there are also high rates of HIV transmission in particular sub-populations, such as homosexually active men (Baral et al., 2014), but in all of these countries heterosexual transmission is the main route of HIV transmission, and more women than men are infected, especially young women. There are no high-income countries with what is considered to be high HIV prevalence.
We present here the sobering picture of HIV in South Africa and other parts of sub-Saharan Africa. In general, HIV incidence in most countries of sub-Saharan Africa appears to be declining slightly or stable. Data from population-based seroprevalence surveys and sentinel surveillance of pregnant women suggest that the HIV epidemic has reached a plateau in South Africa, with adult HIV prevalence at around 17 per cent. In antenatal care (ANC) clients, HIV prevalence has gradually levelled off at around 30 per cent, after steeply increasing for more than 10 years from 7.6 per cent in 1994 to 29.5 per cent in 2004. In 2010 HIV prevalence was 30.2 per cent among women attending antenatal clinics (see Figure 1.1).
Since the first population-based survey in 2002, national HIV prevalence in the general population has shown an overall downward trend in children (primarily as a result of the scaled-up national PMTCT programme) and a slight upward trend in adults. Among youth aged 15–24 years, HIV prevalence declined from 10.3 per cent in 2005 to 8.7 per cent in 2008 (UNAIDS, 2012a). However, as Leigh et al. (2012) noted, further data are needed to confirm the downward trend, and a recent survey (Shisana et al., 2014) did not show the hoped-for decline among young people.
Part of the reason for these continuing high rates is the decline in condom use over the same periods. In 2012 condom use at last sex decreased to 36.2 per cent, returning to levels similar to those in 2005 of 35.4 per cent, well below the peak of 45.1 per cent in 2008 (Shisana et al., 2014, xxxiv). And although condom use is highest among those aged between 15 and 24 years, these figures are of concern, especially for young women. The HIV incidence rate among female youth aged 15 to 24 years was over four times higher than the incidence rate found in men in this age group (2.5 per cent vs. 0.6 per cent), and young females (15–24) represented nearly a quarter (24.1 per cent) of total new HIV infections. The highest incidence rate in the country in 2012 (4.5 per cent) was among black African women aged 20–34 years (by comparison, adult incidence during the period 2008–2012 was 1.9 per cent). Furthermore, in the context of declining condom use, there has been a slight increase in the proportion of young people reporting 'first sex' before the age of 15 years. There has also been a steady increase over the same time period in the number of respondents who had had more than one partner in the previous 12 months, from 11.5 per cent in 2002 to 18.3 per cent in 2012.
On the basis of their findings – and because of the risk of behavioural disinhibition in the context of the wider availability of ART – Shisana et al. (2014) recommend accelerating social- and behavioural-change communication campaigns. As the authors note in the Executive Summary (2014, xxxix), there was a 'false sense of security observed among some respondents in this survey whereby, based on inaccurate information, some people do not feel that they are at risk of HIV infection'. They also note that the beneficial impact of increased ART coverage on HIV incidence (through viral load reduction in HIV-positive individuals) has been more than offset by the disturbing trends of increased HIV-risk behaviour. They conclude: 'The NSP (National Strategic Plan) for 2012–2016 states as its primary goal a reduction of new infections by at least 50%. In view of our survey findings, this will be extremely difficult to attain given the prevailing transmission dynamics in the country' (2014, xxx).
Botswana, Lesotho, Namibia, Swaziland, Zambia and Zimbabwe also continue to bear the global burden of HIV and AIDS, and all have predominantly heterosexually transmitted epidemics with HIV prevalence over 10 per cent. In two of these countries, Namibia and Zimbabwe, there are signs of a decline in HIV infections (UNAIDS, 2014b) – although in Namibia there are concerns about whether the decline has stalled, and the absence of population-based data means that prevalence can only be estimated through models. There are no indications of declining transmission in Swaziland, Lesotho, Zambia and Botswana (2014b). The 2013 Botswana AIDS Impact Survey (BAIS) (2014b), the fourth of periodic nationally representative behavioural surveys, estimated that 18.5 per cent of the total population was living with HIV, up slightly from 17.6 per cent in 2008. HIV prevalence in the adult population appears to have stabilised at around 24 per cent (Whiteside & Strauss, 2014). With the help of donor funding, Botswana has made significant strides in treating people with HIV. However, it appears that the overwhelming investments in responding to HIV in Botswana have been in the form of treatment provision and, regarding prevention, significant efforts have been made to provide PMTCT, but less has been done to address people's sexual practices. In general, to the extent that the HIV epidemic in these high prevalence countries has stabilised, it has done so at a very high level and appears resistant to the prevention strategies that are currently in play.
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Table of Contents
Acknowledgements; List of Figures and Tables; Introduction; 1. Mapping a Social Disease; 2. ‘Owning’ Uganda; 3. The Australian Partnership; 4. The Biomedical Narrative of HIV/AIDS; 5. Risk and Vulnerability; 6. Social Practices of Communities; 7. Researching Social Change, Working with Contingency; References; Index