What is the effect of self-identified HIV activism in willingness to participate in HIV cure-related clinical trials? Results from the ANRS-APSEC study.

OBJECTIVES: Enrolling people living with HIV with undetectable viral load into HIV cure-related clinical trials (HCRCT) is challenging. Few data are currently available about the individual factors that influence willingness to participate in HCRCT (WPHCRCT). We hypothesised that WPHCRCT would be more frequent among people living with HIV considering themselves HIV activists. The objective of this study was to investigate the individual characteristics associated with both WPHCRCT and self-identification as an HIV activist. METHODS: The study enrolled 195 long-term ART-treated and virologically suppressed people living with HIV, followed-up in 19 French HIV services, 2016-2017. A Bayesian model averaging approach was used to assess correlates of both outcomes i.e. WPHCRCT and self-identified HIV activism. RESULTS: WPHCRCT was reported by 43% of participants and was positively associated with self-identification as an HIV activist (adjusted odds ratio [aOR] 2.90 95% confidence interval [CI] 2.17-3.63], P<0.05) and self-confidence as an HIV positive person (aOR 1.17, 95% CI 0.99-1.35, P<0.1). Self-identified HIV activists (56% of participants) were more likely to have a higher 'relationship with others' score using the post-traumatic growth inventory (aOR 1.10, 95% CI 0.99-1.20, P<0.1), to obtain information about HIV from a greater number of sources (aOR 1.35 [95% CI 1.00-1.68], P<0.1), and to feel greatly affected by mandatory daily treatment (aOR 2.15, 95% CI 1.27-3.03, P<0.1). All associations had relative importance weight>0.75, indicating strong evidence. CONCLUSIONS: WPHCRCT is strongly related to HIV activism, and also to positive psychosocial characteristics as a person living with HIV, especially regarding relationships with others. The desire to contribute to the fight against HIV for the sake of the HIV community and society should be taken into account to improve participation in upcoming HCRCT.

From loss to repair. A study of body narratives in patient claims for medical injury.

In this article we examine the body's status in the complaints that patients filed with a compensation agency. Taking a corpus of letters, we analyse the way in which the patients mobilise their bodily experience from the angle of the damage for which they demand compensation. To this end, we articulate an approach in terms of the sociology of complaint with an approach rooted in the sociology of medicine, health and illness. To analyse the body narratives, we use the notion of loss. We highlight the manner in which patients approach their losses as 'losses in practice'. These losses are defined by the patients putting forward the concrete experience of a body harmed by the treatment received, and by their formulation of expectations in terms of compensation. We therefore identify four ways in which the reality of the damaged body is given a form in terms of expectations of repair: the 'body-producer', the 'body-ecological', the 'body-help' and the 'body-self-image'. Our analysis adds to studies on the status of the body in care and in complaint by showing: the specific influence of the enunciative situation, the plurality of patient evaluations and their temporal dynamic.

"No-fault" compensation for victims of medical injuries. Ten years of implementing the French model.

CONTEXT: For decades and in many countries, the issue of compensation for victims of medical injuries has led to lively debates. In 2002, a law set up a new model for compensation in France - based on the creation of a "no fault" compensation scheme and of an out-of-court settlement mechanism. This is one of the most recent models to have been adopted in European countries. This article analyses the choices made by the law and discusses the key figures of its ten years of implementation. METHODS: We conducted (1) a study of debates regarding compensation for victims of medical injuries in France; (2) a comparative analysis of the different models of compensation which had already been adopted in different countries; (3) a study of primary sources provided by the bodies in charge of the French new out-of-court settlement mechanism; and (4) a statistical analysis of the exhaustive list of 18,258 claims filed between 2003 and 2009. RESULTS: The article highlights the context which led to the adoption of the 2002 law on the quality of care and patients' rights. It analyses, from a comparative standpoint, the specificities of the new compensation model set up by the law. It shows how the opportunities for victims of medical injuries to be compensated had improved in France. Finally, we discuss the limits of the new model and what the next step might be to improve access to compensation for victims of medical injuries.

Autonomy and objectivity as political operators in the medical world: twenty years of public controversy about AIDS treatments in France.

The article is based on the controversies relating to conducting experiments and licensing AIDS treatments in France in the 1980s and 1990s. We have identified two political operators, i.e. two issues around which tensions have grown between the different generations of actors involved in these controversies: 1) the way of thinking about patient autonomy, and 2) the way in which objectivity regarding medical decisions is built. The article shows that there are several regimes of objectivity and autonomy, and that it is at the meeting point of the two dimensions that very different political forms of medicine have developed. In the case of AIDS, the article identifies four of these forms (liberal and conservative clinical traditions and therapeutic modernity--enclosed, then participative) and analyzes the dynamics of their emergence and opposition. We discuss an "objectivity/autonomy" diagram as a conceptual framework which enables us (above and beyond AIDS) to think about changes in contemporary medicine.

How to build an "active" patient? The work of AIDS associations in France.

"What is an "active" patient?" is a question that arises in most medicine and illness-related social science research. This article examines the normative work carried out by AIDS associations in France to define an "active" patient in healthcare and research. While the fight against AIDS is often presented as being homogenous, we look at the diversity of opinion between different associations (Aides, Act Up-Paris, Actions Traitements and Positifs). We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter. Systematic comparison of these cases shows that these perceptions of the "active" patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients). This article highlights the historical dynamics which allow us to have a better understanding of these differences, especially the major distinction between two generations of associations, which adopted different positions with regard to their public identity.