Living with HIV: Recent research from France and the French Caribbean (VESPA study), Australia, Canada and the United Kingdom

To the extent that they are available for medically eligible patients, highly active antiretroviral therapies (HAART) have substantially prolonged the life expectancy and improved the quality of life of people living with HIV [1–3]. This supplement is devoted to the responses of people living with HIV and describes their experience of living with long term chronic illness. It contains a number of papers detailing findings from research in social sciences recently conducted in France (7), Australia (3), Canada (1), the United Kingdom (1) and the French Caribbean (1), i.e. in countries where HAART have been widely available for about ten years. The thirteen papers examine a number of issues of relevance to living with HIV. The focus ranges from heterosexuals to gay men, and there is special concern with the needs and experiences of indigenous and immigrant populations. Several papers address access to and take-up of antiretroviral therapy and health-related quality of life, while others examine the day-to-day lives of people living with HIV. These latter papers include discussions of the reproductive desires of those living with HIV, their sexual lives, and their everyday work and domestic lives. Yet other papers focus on issues related to the disclosure of HIV to others and issues related to stigma and discrimination. With one exception, the findings described and discussed in these papers are based on statistical analyses of survey data - data collected in the main from people living with HIV and complemented on occasion by information from medical records. The seven papers describing living with HIV in France derive from the VESPA Study, a large scale survey of almost 5,000 people living with HIV recruited from 102 French hospital departments delivering HIV care [4]. The findings from the one ‘non-quantitative’ study, which are based on analyses of the narratives of Australians living with HIV, document the barriers and incentives to uptake of antiretroviral therapy among the Aboriginal people of Western Australia. While it is difficult to generalise across the findings from these five countries and diverse populations, there are some interesting and, we believe, useful comparisons to be made and general conclusions to be drawn for both policies aimed at fighting the HIV epidemic and future social science research in the field. The ways in which people live with and manage their chronic illness, in this case living with HIV, is similar across some of the studies and countries represented in this issue. Findings illustrate the ways in which social ‘fault lines’ of gender, socio-economic status, and race influence access to and uptake of antiviral therapy (ART). The paper by Dray-Spira et al. (S5–S12), for example, documents how in France, ART treatment failure is associated with being non-native French and being female. This same study also documents the ways in which poverty and poor living conditions are associated with treatment failure; such conditions producing barriers to information and health care. On the other side of the world, the article by Newman et al. (S13–S17), in Australian Aboriginal communities reveals similar concerns but also problematises the concept of ‘treatment failure’. The paper speaks to the need for the medical and health care professions to tailor treatment regimens so that they are sensible of, and appropriate to, the social and cultural contexts of people's lives. The ways in which treatment regimens are made available and administered to suit people from the developed world urban environments may not be optimum for the delivery of treatments to those who are marginalised and/or who have different social and cultural ways of living with and managing chronic illness. Access to health information is also discussed with reference to post-exposure prophylaxis (PEP) in the paper by Rey et al. (S71–S77). Their findings show again how treatment access is related to social and cultural factors. In France where PEP is recommended following unprotected sex, gay men are better informed than others, with lack of PEP awareness being associated with low levels of education, unemployment, and non-native born French heterosexuals. It has sometimes been argued that the diffusion of effective antiretroviral treatment will induce a ‘normalization’ of HIV care with a subsequent decrease in discriminations endured by people living with HIV [5]. However, there has been a recent resurgence of interest in HIV-related stigma and discrimination triggered, at least in part, by a growing recognition that negative social responses to the epidemic remain pervasive even in the context of HAART [6]. Issues of shame, stigma and discrimination are raised in a number of papers of this supplement. Health-related quality of life is affected by discrimination and, more widely, by fears of discrimination. Preau et al. (S19–S27) in this issue points to the fear of unwanted disclosure and discrimination especially among members of social and ethnic minorities in France and how these fears undermine the quality of life of those living with HIV. This same paper points to the ways in which societal inequalities of gender, race, and socio-economic status are exacerbated by HIV. That fear of discrimination is alive and well is confirmed by the study reported by Dray-Spira et al. (S29–S36); their findings show that most people living with HIV in France (70%) had not disclosed their HIV status to their employers, in spite of formal laws and regulations supposed to protect them from any discrimination at the workplace. This same paper and the paper by Fogarty et al. (S37–S42) describe the manner in which unemployment exacerbates the difficulties of living with HIV. While unemployment is associated with illness as indicated by a history of HIV-related hospitalisation, severe immunodeficiency and hepatitis C co-infection, it is also a function of social and cultural factors. In France unemployment was found to be more likely among immigrants and women, while gay men in Sydney were more likely to be employed if they were young, and had a university education. Disclosure of HIV was also very low in Bouillon and colleagues' study conducted in the French Antillas and French Guiana, with one third of people not disclosing their HIV serostatus to anyone (S91–S96). Furthermore as reported in this study, 15% of people had not disclosed to their regular partner. On the one hand, disclosure is expected to alleviate the stressful burden of concealment, to increase material and emotional support, and to facilitate shared responsibility for sex and self-acceptance of one's condition; on the other hand, disclosure exposes people living with HIV to stigmatization and discrimination from significant others and from their broader social environment [7]. Absence of disclosure to a regular partner raises a number of questions about the risk of HIV transmission and studies – from France (Bouhnik et al. S43–S48, and Bouhnik et al. S57–S62) and the United Kingdom (Elford et al. S63–S70) discuss the attendant risks of the sexual behaviour of people living with HIV. Generally, findings of the research reported in these three papers point to the ways in which people living with HIV – both heterosexual and homosexual – protect their HIV nonconcordant sexual partners from the risk of HIV-infection. Although varying from study to study, consistent condom use is the norm among people living with HIV, particularly when engaging in sex with their regular partners. For gay men living with HIV there were higher rates of unprotected sex with their casual partners than was the case for heterosexual men. Furthermore, as reported by Prestage et al. (S49–S55), illicit drug was associated with risk, particularly if the drugs were used to enhance sexual pleasure. While unprotected sex did occur within relationships, it was more likely within regular relationships in which both partners were HIV positive. However, unprotected sex did occur in a small proportion of nonconcordant regular relationships – in both heterosexual and homosexual relationships. For heterosexuals, it was more likely in couples in which an HIV-positive person failed to disclose his/her status, and it was more common for women not to know the status of their HIV-positive partners. Other factors associated with unprotected sex within sero-nonconcordant relationships included being in a relationship more than ten years, being in a difficult financial situation, and regular consumption of alcohol to excess. Recent socio-behavioural research in people living with HIV has profiled clusters of ‘high risk patients’ who simultaneously experience psychological distress, relational and social vulnerability, exhibit non-adherence to treatment recommendations and engage in behavioural risk of HIV transmission [8–10]. But as suggested by previous research [11–12] and papers in this supplement, such approaches tend to be excessively individualistic and underestimate the complex pattern of interactions between individual, social factors and material living conditions that influence the behaviours of people living with HIV. The findings from studies carried out in France (Heard et al. S79–S84) and in Canada (Ogilvie et al. S85–S90) indicated that a sizeable proportion of heterosexual couples in which one or both partners are living with HIV, reported a desire to have children. The proportion of women of reproductive age in both countries who desired to have children was around one third, approaching that of women of equivalent age in HIV-negative couples. For both men and women, this desire was unrelated to the person's own clinical condition and was predicted by being younger and being in a regular relationship with an HIV-negative partner. Overall, what these studies indicate is that since the advent of highly active antiretroviral therapy in 1996, people are increasingly able to live with HIV as a chronic illness; many people are able to lead lives in which they work and play, have sex, and reproduce. However, research also reveals that stigma and discrimination continue to be present in the lives of many living with HIV, especially those already marginalised by gender, race and socio-economic status. Stigma and the associated shame appear to amplify the complexities of living with HIV. As the number of people living with HIV grows, policy makers and health care professionals need to develop tailored programs of support and care to meet their complex needs and requirements. Social research comparing living with HIV with living other chronic diseases would be useful in this regard, as would studies addressing issues related to the ageing of the population of people living with HIV. Research to inform such programs of support and care are sorely needed, especially in developing countries burdened by the largest numbers of people living with HIV.

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