AIDS Action Europe Network News no.12, December 2016

I left the UK in 1988, freshly graduated in modern languages and European studies and recently "out" to my family. I went to Grenoble to live with my then boyfriend. During my studies and as I came out, I had been confronted with AIDS. Two of the first gays I met were living with AIDS and HIV. In the 80's being Gay and Gay rights were very linked to HIV/AIDS. The community response was the only response that didn't seem to approach things, nor base messagesin fear and moral judgements. When I went to France and then Germany as a student I saw how similar this was across boarders and how policy (particularly in Bavaria) could provoke discrimination, rejection and fear. The global side to the epidemic seemedto be begging for an international response.What could the EU do? A subject I looked at in my end of studies essay. Nothing ground breaking there, I assure you, except that it gave substance to my realisation that health was an intricate mesh of pathogens, personal and wider social, economic and political determinants. Things I was soon to be putting into practice as a volunteer at AIDES doing telephone counselling, training new comers, setting up outreach with the gay barsand then working in one of the first needle exchanges in France and training healthcare professionals.

Some years later, as my millennium project to mark my 40th Birthday, I embarked on a psychology degree that ended up with me studying Health Promotion. The course put even more flesh onto my acquired experiences and lay knowledge and enriched my working as a training manager with AIDES. A job I would do for over ten years.

AIDES was set up in 1984, inspired by what the Terrence Higgins Trust and the Gay Men's Health Crisis were already doing in the UK and US. It is rooted in the works of Michel Foucault and Daniel Defert. It aims to transform society through mobilising and empowering the populations concerned to participate in innovative and pragmatic responses to their needs. Itis a social movement with over a thousand volunteers and 450 Staff, working in a community development frame. Policy, advocacy and lobbying are clearly central to ourwork in the field. Our grass roots responses are aimed at changing the environment.

France has a strong tradition of research, HIV was found by teams in the publicly funded research labs. At AIDES, the community-based research department provides us with solid evidence backing up our claims for greater involvement of and ownership by key groups in the responses to the epidemic. It was in this way that AIDES got the law changed in order to do lay VCT and brought testing closer to where people lived and socialised. We now do over 40 000 HIV tests a year. The same research department took part in Ipergay, resulting in the proof that on-demand PrEP was an effective strategy and ensuring the inclusion of peer counselling in the French recommendations for PrEP delivery. We have recently conducted Flash! Prep in Europe, the first pan-European study on interest in attitudes towards and use of PrEP. The study was explicitly aimed at contributing to greater PrEP access in Europe.

Complementary to this, internally, we put much work into quality management identifying our best practices and improving on them to be ever closer to the needs of our target populations and checking that we are doing our job of representing and making space for them at decision-taking tables.

Externally, we also do a lot of watchdogging, making sure that recommendations are followed and laws, regulations, rules and charters are respected. Recently this took the form of phoning dentists and gynaecologists for an appointment, sometimesclearly stating being HIV+; The results were then published in the press. They did not make pretty reading for the dental profession! We have also just published a report on the discrimination experienced by people who regularly take part in our activities. Being HIV+, having hepatitis, being LGBT, coming from a foreign country, taking drugs, being a woman are still too frequently a source for discrimination when accessing health care, at the work place as well as socially. Again invaluable data for working with public health authorities.

I could talk about many other examples of what we are doing in France that fit in with European concernsand that should be brought to the European level but I should just mention these two: Our experience in training both volunteers and health professionals, in drawing up specific qualifications for community health-workers and getting them recognised. The hard grind of daily-working and coaching of our successive health ministries on ways to move forward and shape health policy.

AAE:What was your motivation to become a SC member of AAE?
R.S. I suppose it has to be about what I've just said about bringing French experiences to the European level.Put in nutshell, its has a great deal to do with breaking down borders. It's perhaps idealistic, particularly at a time when national frontiers and fences are becoming so fashionable. But we have so much to learn from each other so much energy to put together. In my mind becoming a member of the SC is a case of 1 + 1 = 3; Its an opportunity to maximise efforts and impact to change the environment through being stronger together.
All the more so as I also coordinate a Platform of the 4 European members of Coalition Plus. It is crucial that we pull in a similar direction, create virtuous circles rather than duplicate activities.

AAE: What do you expect from the work as SC member of AAE and which benefits do you expect for your work at AIDES?
R.S.I expect to learn a good deal about how to go about advocating at the European level. I'm looking forward to meeting and working with people from other contexts finding common ground and causes that we can work on. I'm eager to be involved in work bringing East, West together. We have a lot to learn as well as things to share. It will be an enriching experience and probably time consuming.

I hope that AIDES will benefit from the 'hotline' to European issues, fostering effective and creative partnerships with members across the continent, continuing to engage with communities to develop innovative responses, nurturing empowerment and transforming the environment.

AAE.:And last but not least: What does advocacy mean to you and why is it so important in the field of HIV?
Advocacy is a process involving convincing people in power, not only that they can do something about a situation, that the time is right to do it but, that that change will make a significant difference to the way that others live their lives and that a greater good will ensue from this change. It is both value-driven and visionary, and yet constrained by reality and rooted in peoples needs.
Advocacy can also be an outstanding opportunity for people to take part in their health. Petitions, testimonials, trials and even demonstrations are all ways of sharing power at the base and inverting power relations.

I can only flag a handful of reasons why I think advocacy continues to be central to the field of HIV. Firstly because we, in our heavily affected communities, at the so-called fringes of society, are the ones who have the answers. For that, we need our Rights to be respected, our lives to be valued for what they are, as they are. We need inclusive partnerships with policy makers who consider our experiences to be a form of evidence. We need access to affordable medicines, access to competent and equipped medical staff, access to a varied range of prevention services because our lives are varied and vary over time. The list of subjects goes on.

Then there is the question of how to maintain the focus as progress is made and the world's attention moves on. We need to keep moving towards that light at the end of the tunnel keeping the right balance between exceptionalism and making changes that will benefit all.