For the next several years, I worked between labs, finishing medical school and getting my PhD, but this career track started to bore me. It was around that time that I became a volunteer at AIDES, the main organization in France. AIDES was involving all kinds of professionals, as well as the people who were affected by HIV: the patients, and the people who were most exposed to HIV.
And suddenly, in 1997, I became HIV positive myself. After the initial shock – because it’s always a shock – I decided, “now, I have to do what I really want to do”. So, I changed direction and through INSERM I was able to work for one year at AIDES. At AIDES, I set up projects, such as a university for people living with HIV; this was a self-support programme that allowed people to study HIV medication and adherence at the same time. This was at the very beginning of triple therapy, and a lot of people were finding it complicated; so my role was to support and convince people that it was important to take these drugs and to take them well.
At the time, many people in the community were not convinced by antiretroviral therapy and were quite reluctant to take these drugs, in part because there had been so much disappointment with monotherapy and double therapy. We had to change the way of thinking and convince people that this was a genuine revolution.
After that experience, I actually returned to an INSERM lab – this time as a social scientist working with Jean-Paul Moatti, who was the head of a social science research unit in Marseille. I actually define myself more as a community-based researcher because I run my projects with community-based organizations in which lay stakeholders have a role in research. To elaborate further, I am defining lay people as individuals who are not necessarily academic by training, but who can discuss issues with their academic partner as equals because of their life experience. In my mind, lay people are a critical pillar in the AIDS response and the GIPA principles.
The GIPA principles are great. “Nothing about us without us” is exactly the right approach. What I don’t like is the way the GIPA principles have been applied. The idea that people living with HIV should always have their own organization is a kind of “ghettoization” of people living with HIV. To me, GIPA ought to mean that people living with HIV must have key positions in society. They should not be parked in specific roles or organizations. I think that it’s important to have community organizations of lay people who are concerned with HIV, organizations in which people living with HIV are equal to people not living with HIV.