Screening of Positive Hell: Q&A panel

The film Positive Hell is a 30-minute exploration of five Spanish AIDS patients and their rationale for rejecting mainstream antiretroviral therapy. Positive Hell was initially selected for public screening by the organisers of the London Independent Film Festival (LIFF) but was then “pulled” from the schedule. Positive Hell was subsequently screened at an alternative venue before an audience of approximately 50 people at the Soho Screening Rooms, 14 D’Arblay Steet, London W1, on Sunday 17th April 2016. This commentary is about the screening of Positive Hell and the subsequent Q&A Panel after the screening.This film Positive Hell (directed by award winning film maker Andi Reiss) is the work of the British Medical Association award-winning journalist, Joan Shenton, a noted UK “AIDS dissenter”, who together with a group of renowned scientists, challenges the infectious hypothesis for HIV/AIDS, despite decades of evidence on research and HIV testing confirmed by the AIDS scientific mainstream

The agendas of "empowerment" in HIV & AIDS care

"Empowerment" may be a diffuse and enigmatic concept or process but is gaining a currency within the ideologies of care. The largest group of service users in HIV & AIDS care are gay men and empowerment could be characterised as agency within existing social networks and volunteer organisations through their struggle with "expert systems". Whilst differing discourses of self-help and empowerment are emerging their coexistence may serve different agendas from the a priori controlling influences of the unequitable power of professionals

"Empowerment" and self-help in the care experiences of people with HIV

Empowerment is an ill-defined concept within the ideology of health promotion but is central to the field. The utility of the concept of empowerment whilst much debated has only attracted few empirical studies which detail the effects of empowering interventions. Whilst empowered self-care behaviours and empowering interventions by carers and professionals may be described, they defy measurement and quantification. Hence interventions, strategies and policy making remain rhetorical. The present day association of empowerment appears to be with the conscious surveying and construction of needs to conform to market models of health and social care. Such operational definitions of empowerment remain at variance with the origins of the concept which lie within the relationship of individuals with authority and to a wider tradition of community participation aiming to redress social inequalities. The United Kingdom policy response to the current HIV and AIDS "epidemic" in Health of the Nation stresses the need for community empowerment without either definition of the concept or through addressing the epidemic from within the perspective of those infected and affected. This proposed study will define empowerment in people affected by HIV and AIDS from the current discourses of those infected and their carers. Through analysis of individuals lived experiences it aims to characterise empowerment in people affected by HIV and AIDS and strategies which people affected and their carers identify as contributing to their struggle

Contesting AIDS/HIV: the lay reception of biomedical knowledge

This paper analyses the diversity of lay responses to the medical screening and testing technologies used in HIV and AIDS (Corbett 2002). These technologies (namely, HIV antibody-tests, T cell counts and Viral Load tests) are used in the clinical surveillance and monitoring of the health of diagnosed people. The paper develops a conceptual framework from within the sociology of scientific knowledge using the work of Bijker and Foucault. It is argued that HIV/AIDS screening and testing technologies embody degrees of certainty over diagnosis, prognosis and treatment. It is further argued that lay theorising and global activism over such technological indeterminacies has helped to foster diverse meanings for these health technologies. The paper draws on a discourse analysis of interview data drawn from a U.K. sample of diagnosed people. This analysis showed a spectrum of articulated affinity with various propositions and presuppositions about the nature of HIV/AIDS and the associated screening and testing technologies. The paper analyses how individuals actively engage with various technological frames when speaking, thinking and acting in relation to HIV, AIDS and their response to the results of HIV technologies. The paper argues that the latter response to these health technologies constitutes a lay epistemology of HIV and AIDS characterised by uncertainty and resistance underpinning a continuum of responses (‘response-styles’) for living with a diagnosis of HIV and AIDS

Researching the discourses of empowerment and self-help in people diagnosed with HIV antibodies: analysing experiences of the "hallmark" of AIDS (the t-4-cell count)

Gaining information and developing understanding about any medical condition is a central activity in self-help (Wann, 1995). Scant attention has been given to individual experiences of the technology deployed in AIDS care, as social science focuses more on gender and social policy issues with this syndrome. For example, individuals' "lived experience" of the clinical technology, such as the T-4-cell count, remain poorly understood. This paper draws on transcribed interviews with people diagnosed antibody positive, in order to analyze the knowledge and understanding of such technologies. Individuals' experiences of the "clinical reality" of AIDS (Treichler, 1992) may prove empowering but there is a dissonance with orthodox perceptions. When AIDS was initially identified, the T-4-cell count was proposed as measuring loss of immunity. This tool quickly evolved into a prognostic "test" for identifying the "hallmark" (defining characteristic) of AIDS: the reducing number of T-4-cells. Individuals report many "frames" of reference to contextualize their experiences of AIDS which contest such orthodox perceptions of the clinical reality. This self-help process parallels debates on "empowerment" both as a strategy for resistance against, or assimilation within, the dominant paradigms of thought (the "medical model" of AIDS). It is shown how discourses of people so diagnosed reveal that orthodox AIDS knowledges are representative of a science which is "dialectical/undetermined/underdetermined" (Fujimura and Chou, 1992)

Inside the “black box” of the antibody test: deconstructing the official classification of “risk” in test algorithms used for identifying the Human Immunodeficiency Virus

This paper interrogates the last 20 years in the British experience of using official antibody test algorithms to detect the human immunodeficiency virus (HIV). Case definitions of the Acquired Immunodeficiency Syndrome (AIDS) cite antibody test methodologies licensed since 1985 for screening purposes and derived from laboratory identification of HIV. Two common (yet surrogate) methodologies are the enzyme-linked immunosorbent assay (ELISA) and the Western blot (WB), both used for screening human populations. Test manufacturers publicise the interpretative flexibility of these tests, which may produce false or indeterminate results, given laboratory identification of HIV is cited as problematic, time-intensive and as using surrogate techniques. Globally, public health officials publish differing algorithms for testing of human subjects. The paper shows how these algorithms (whilst aiming to balance test specificity/sensitivity), are based on perceptions of ‘risk’ of exposure determined during pre-test dialogue: how the test subject is positioned as ‘high’/‘low’ risk and within a hierarchy of exposure categories. The interpretation of indeterminate results is problematic given the possibility of false results, which are ruled out by estimating the risk of exposure (‘window period’) and the seroprevalence in the population of the test subject. It is argued that during the last 20 years experience with these test algorithms the interpretation of the test ‘result’ is not wholly ‘objective’ or laboratory-determined, as it relies as much upon the classification of the test subject as being ‘at risk’ during pre-test dialogue as it does upon the “epidemo logic” of the ELISA or WB, data which often remains ‘black-boxed’ from a critical public scrutiny. Using data from tested subjects and published accounts/texts, the paper deconstructs the classification of ‘risk’ embodied by official test algorithms and analyses how the ambiguity/uncertainty characteristic of antibody-test methodologies have sociological implications for ethical decision-making, self-identity and social movements