The French version of this text is available here.
François Berdougo, Bruno Brive and Gabriel Girard (August, 1st, 2013)
Is AIDS prevention among gay men a battlefield? At first glance, probably less so today than a few years ago. Since the late 1990s, violent conflicts have consistently opposed activists and participants in the fight against AIDS, crystallizing – and often paralyzing – debates, initially focused on the issue of the ‘bareback’ question, the controversy has spread to the notion of sexual risk reduction.
In recent years, the terms of the debate have shifted. The rise of the medicalization of prevention has contributed to a new distribution of the cards. Undetectable viral load, TASP, Prep … have become a part of the new preventive grammar of individuals to varying degrees. Sexual risk reduction, if it is still debated as public health recommendation, is now relatively meeting general consensus among organizations and scientific and medical experts in the fight against AIDS worldwide; LGBT organizations are less involved on this subject … and the French health administration remains silent. In this context, the ANRS IPERGAY trial may at first seem a striking example of these developments (1). A new paradigm is being established: planning, management and reduction of risk, all while evaluating the efficacy (and partly, effectiveness) of antiretroviral prevention. But doesn’t this apparent rationalization of biomedical prevention behaviors obscure certain political issues? Aren’t the numerous scientific advances in HIV transmission, however important they may be for our communities, preventing access to the social and cultural dimensions of ordinary uses of prevention?
In recent years, the technical debate on the level of efficacy of harm reduction strategies has often been given greater importance than an inquiry into whether affected communities can accept them and them into line with the diversity of their members’ practices. This text aims to contribute to the debate on prevention, situating some of the political issues that today seem to be attracting too little attention. In the current state of scientific knowledge and the progress of the European Medicines Agency, the authors are in favor of continuing the ANRS IPERGAY trial.
The shifting terms of a community debate
Developed in 2009, the IPERGAY trial project immediately sought to involve the HIV/AIDS volunteer and community-based sector, from AIDES (2) as an operator (for the recruitment and support of volunteers) to TRT-5 (3), then starting in 2011, LGBT organizations and HIV/AIDS organizations together in a unique framework for exchange in France, an “Associative Committee” (4). There was tension and there were debates, but over time, IPERGAY allowed (or forced, according to one’s perspective) an associative commitment on issues of HIV prevention. Until the trial began, the crystallization of debates on « sexual harm reduction » seemed to have blocked all attempts to take part in discussions with « AIDS specialists » from AIDES, Act Up-Paris, or Warning. Many AIDS and LGBT activists maintained a cautious stance during this period in the face of often virulent conflicts where entrenched positions were the ones most often heard. For others, the sophistication of discourse on risk and the continual use of scientific and medical arguments made it difficult to appropriate the terms of debate. This was the context at the end of 2009 for TRT-5’s launching of a community consultation process to explain the research project IPERGAY, but also to give a framework to identify the needs of the gay world in terms of prevention. Management for this experiment gathered representatives from various (AIDS and LGBT) community-based organizations. Fourteen meetings were held in 10 cities in France, bringing together nearly 400 participants. Thirty associative organizations were associated in one way or another during this process. As a process, this consultation allowed many community members to take part once again in debates on prevention and risk, to feel legitimate in expressing a point of view on complex issues. The “Associative Committee” created along the lines of this community consultation is a space for exchange and discussion, which do not necessarily aim to find a consensus.
On 18 January 2011, the results of TRT-5 community consultation were published in the form of a report. If the main findings clearly concern the trial project, they also raised political questions concerning research, ethical aspects of the trial, prevention policies or scientific understanding… By giving keys to the understanding of these complex issues, the consultation also highlighted the political nature of interpretation of scientific research data. Two years after the report was published, it is clear that its dimensions have remained largely under-exploited by both public and volunteer HIV/AIDS prevention actors. One should of course mention that the scientific context changed at the same time, with the publication of the first data from the U.S. trial I-Prex in November 2010. At any rate, political issues have yet to be addressed.
Major scientific and political issues
The first results of I-Prex have indeed (partially) changed that situation. With 44 % risk reduction, the Prep proved relatively effective, but not negligible. In other words, the concept of Prep has been validated, but further studies are needed. The discussions that followed the first results of I-Prex have also clearly illustrated the highly political dimension of interpreting scientific data. What is the acceptable level of risk, individually and collectively, to move from a trial to a public health recommendation? It is very difficult to provide a definitive answer to this question. At any rate, the I-Prex results justified further investigation, in particular to discover whether an intermittent strategy could achieve greater efficacy than a daily regimen.
Since these early publications, the AIDS community has frequently debated the subject in the context of international conferences (the last CROI (5) provides yet another illustration of this fact). Analysis of I-Prex data brings new insights into the strategy currently under evaluation. It comes as no surprise that compliance is of the utmost importance. In the United States, these data has led to a change in public health recommendations, with the July 2012 approval of Truvada® (6) for prevention, under conditions of strict supervision. The World Health Organization is developing new guidelines for the research and experimentation of Prep. The European Medicines Agency (EMA) opened a ‘Prep’ file in 2011 and entrusted it to the Agence nationale de sécurité du medicament (ANSM), the French Medicines Agency.
Now that « the end of the epidemic” of the struggle against HIV/AIDS is on the horizon, at least in the collective representations of these past few years, Prep has established itself as one of the new tools of prevention. In France, the strategy is being considered for some people from the most vulnerable communities in a perspective of « combination prevention » technologies though it is not yet clear how they could best be implemented. If trials are still ongoing – Ipergay in particular – some actors have their eyes turned towards the next steps: availability and distribution. One example of this is AIDES’s recent request for Truvada® to be approved for Temporary Use Authorization by the ANSM. This pro-active rhetoric nonetheless has a tendency to obscure important issues on which we must focus in order to imagine the future of prevention (7).
The first question we would like to raise concerns the ownership of the Prep as a prevention strategy. It is often noted that with excellent compliance, daily intake of Truvada offers 92% reduction in the risk of transmission. This element embodies a seemingly logical proposal: make Prep available, inform, support and rely on the « common sense » of gays. But such a strategy leaves individuals with the responsibility for their choices. The argument can be reversed: how is it that in a prevention trial, when receiving optimal preventive supervision, adherence has not been strong for all participants? Given that this is the case, how can we be sure that the limits observed in the trial will not be encountered in real life?
The second question is related to the implications of a « pre-exposure » treatment strategy: few observers have worried about the fact that men are offered to “foresee” their risk-taking. This dimension may seem trivial, but it goes against the grain of most HIV prevention recommendations. It involves a high degree of awareness of one’s own prevention practices. This capacity for self-evaluation works quite well under experimental conditions. Enhanced counseling, as is offered in the Prep trials, led to an overall decline in risk-taking. But what would happen without such counseling? What does this tacit injunction to reflexivity presuppose? We know that this awareness of risk depends on access to information, psychosocial support or participation in a comprehensive network of relationships. As such, the gay world is far from homogeneous… In other words the development of reflective skills in prevention is fraught with significant disparities in experience and awareness of risk. The issue is not to say that some are better than others, but to note that because of differences in background or lifestyle, not all gays have the same needs or the same capacities to care for themselves.
The third question yet to be addressed is the moral and political acceptability of Prep and more generally of « Treatment as prevention » (Tasp). Our communities have historically developed a complex relationship to prevention, risk and condoms. At the beginning of the epidemic, condoms were considered as a risk reduction technique, before becoming the public health standard we know today. From a tool for survival, affirmation and mobilization, the condom has become, for some men, a constraint and a barrier. There is nothing linear or homogeneous in these processes – condom use may vary according to the period of one’s life, the partners involved, the desire or pleasure sought. However, over time, the condom continues to codify relations between gays. Unprotected sex is widely subject to moral disapproval; the sulfurous character of the word “bareback” is proof of this. Various social practices exist alongside one another. The condom is a tool for responsibility: an offer to use it may be understood as a sign of seriousness… but also, according to what numerous gay men report, a sign of distrust or of a symbolic distance that limits bodies’ fusion or sharing fluids. Essential for some, it sometimes becomes optional for others. Stopping condom use in a couple is associated with a very strong emotional connotation that involves trust between partners. The heterogeneity of the meanings of risk should be at the heart of community debates on Prep and more broadly on Tasp. Instead, in international discussions on the medicalization of prevention, one often encounters the representation of a calculating and rational gay person, able to objectify his relation to risk and to take responsibility for it. This representation is undoubtedly the positive side of the unconscious gay risk taker who was denounced in the late 1990s, a character we encounter once again during these debates. However, between these two extremes, what is the place for the expression of multiple paths and singular relationships to prevention? One should also add the sociological heterogeneity of geographical and cultural differences: I-Prex took place in Brazil, Ecuador, Peru, Thailand, the United States and South Africa; IPERGAY takes place in France and Quebec. In all cases, the diversity of legal, social and historical contexts of homosexuality and prevention cannot be overlooked when considering the effectiveness of Prep strategies.
Furthermore, the various forms of resistance to the concept of medicalization must not be neglected. They may express distrust vis-à-vis health authorities and / or organizations. If they are sometimes a source of annoyance, these postures are also part of the debate. They may show a healthy concern about the commodification of our lifestyles by pharmaceutical companies. Though they are rarely mentioned, capitalist aspects of prevention are indeed one of the dimensions of the problem. Even condoms, usually available for free in the gay community in France, are a market. These individual or collective forms of resistance raise substantive issues, and in any cases illustrate the heterogeneity of prevention needs in the gay community and the plurality of views on prevention policies.
Throughout the debate, the question of choice is the main point under discussion. Proposing Prep, and more broadly promoting the idea of « combination » prevention, comes down to offering as many options as possible to gay men. It emphasizes a supply policy that would lead to the expression of people’s needs. In principle, this philosophy for intervention is relevant, but the issue of the social and political conditions for these choices is rarely a subject of these discussions. To benefit from these choices people must still be aware of the options and have effective access to prevention tools. And the issue of accessibility does not resolve eventual negotiations with the medical sector. One can for example imagine that gay men who would be more comfortable with their sexuality will be more likely to ask a doctor for a Prep, but what about the others? And what about those who do not live in a big city or those who do not have access to a gay-friendly doctor? Considering prevention without seriously addressing the issue of health inequalities would reinforce the dividing lines that already run through the gay community. There is a high risk, with this neoliberal model of free choice, to blame individuals who fail, or fail to make the right choice from the point of view of public health. What community safeguards do we offer to deal with these possible shifts? What networks of solidarity and support should be implemented for people who are in trouble with risk… despite combination prevention? These are issues that deserve to be better taken into account!
Getting back to community mobilization
The social sciences, central in prevention trials, have a clear role to play in all these debates. Currently, especially for I-Prex, little sociological data are available, which reduces our understanding of daily Prep strategies and their social and cultural implications. It is also one of the issues of the ANRS Ipergay trial, and one of the reasons that make its further pursuit absolutely necessary: we have much to learn about the logic of compliance (or lack thereof) within the strategy, how Prep changes (or does not change) the perception of risk, prevention behaviors, sexual networks…
And, beyond the knowledge we need to understand the impact of a possible access to the Prep in France, community mobilization on these trials must become a central issue. The four issues raised here (and all the others!) will not find appropriate answers without the strong involvement of those who are the most concerned. This mobilization involves better communication, to support critical discussions and enhanced mechanisms of individual and collective awareness of HIV risk. In this context, it is regrettable that divisions occurred within the IPERGAY community advisory board in autumn 2012. They indeed undermined a slow and patient collective construction with a variety of stakeholders on the issue of HIV prevention. As a result, in recent months, prevention experts have gradually taken over discussions, thus creating a new gap between AIDS and LGBT organizations (8).
The debate initiated on Prep since Ipergay was prepared has offered a historic opportunity to give a new impetus to the prevention of HIV. Far from being mere media buzz, this work will engage gay communities for the next several years. As such, lessons from the community consultation in 2010 remain extremely topical, both in substance and in terms of democratic process at a local and national level. It is essential that we take particular care of the community ties that have reformed in initiatives such as the trial’s community advisory board or the very rare community mobilization initiatives which are taken in France. It is about a matter of contributing to a long-term reflection about the invention of collective success in HIV prevention.
1) The study, which began in 2011 in France and is currently also ongoing in Montreal, Canada, aims to evaluate whether the fixed-dose combination TDF/FTC (Truvada®) can offer protection against HIV infection if taken on an intermittent or an ‘on demand’ basis. Some details here: http://www.cocqsida.com/assets/files/2.dossiers/IPERGAY_HANDOUT_English4.pdf
2) AIDES is the biggest French HIV/AIDS community-based organization, which has been increasingly involved in research projects since the mid-2000s.
3) TRT-5 is the French HIV/AIDS Community Advisory Board (CAB), a coalition of 9 organizations including Act Up-Paris, Actions Traitements, AIDES, ARCAT, Dessine-moi un mouton, Sida Info Service and Solensi.
4) This is a kind of equivalent for « Community Advisory Boards » which are established within other prevention trials.
5) Annual Conference on retroviruses and opportunistic infections
6) The commercial name of the fixed-dose combination antiretroviral therapy of tenofovir and emtricitabine which is evaluated as a Prep tool in the I-Prex and Ipergay trials.
7) Issues we raise here about « Prep in real life » are close to those highlighted by two major stakeholders of the French HIV/AIDS community – the French experts panel on HIV recommandations and the National Council on AIDS. The Ministry of Health asked about integrating Prep as a new tool in national prevention strategies. Since they delivered their position in early 2012, none has been implemented by health authorities, even if they could have been a powerful basis for public debate.
8) Of course, the gay marriage debate has also contributed to focus LGBT communities attention on other matters than HIV/AIDS prevention.
This forum was published jointly on Yagg.com and vih.org.
About the Authors
François Berdougo is an activist involved in the fight against AIDS who is currently living and working in the Democratic Republic of Congo. Former member of Act Up-Paris, he was the Coordinator of the French HIV/AIDS CAB, TRT-5, from 2008 to 2012 and, as such, contributed to the community consultation on the Ipergay trial discussed in this text, as well as the implementation of the trial’s Community Advisory Board.
Bruno Brive lives in Lille and is part of the LGBT organizations: “Les Flamands Roses” and “J’en Suis J’y Reste”- LGBTI Center based in Lille, Northern France. He is a member of the Community Advisory Board of Ipergay. The views expressed are his own.
Gabriel Girard lives in Montreal, he is a sociologist and activist in the fight against AIDS. He is a a member of the research team and the scientific committee of ANRS Ipergay trial and volunteer for the French community-based organization “AIDES”. The views expressed are his own.
The authors of this text are or have been involved in ANRS Ipergay trial from different perspectives in the field of the fight against AIDS. If it was not easy to bring their words together to state a common position, they feel that the issues raised by the ANRS Ipergay trial on Prep and more globally on policies to prevent HIV/AIDS among gay men are important enough to merit a collective statement on these areas of concern.
Thanks to Vincent Leclercq and Will Bishop for translating.