LIONEL BONAVENTURE / AFP
French journalist, writer, LGBT activist and former president of anti-AIDS organisation Act Up France, Didier Lestrade poses during a photo session in Paris on August 2, 2017. (Photo by Lionel BONAVENTURE / AFP)
HIV – A pioneer in the fight against AIDS, Didier Lestrade co-founded Act-Up Paris in 1989, to “put pressure on public authorities and pharmaceutical companies”. In Act-Up, a storyoriginally published in 2000 and now reissued by La Découverte, the journalist recounts years of activism, marked by memorable actions, such as the setting up of a condom giant on the obelisk of the Place de la Concorde, on December 1, 1993. If he did not escape the controversialat 64, this major figure in activism LGBT+ is one of the last memory keepers of the struggle against AIDS. He regrets today a disinterest in young people about the sickness – “Young people see it as a problem for old people” – and expressed concern that “the memory of HIV is lost”.
The HuffPost: How do you explain that, as you say, “the memory of HIV is lost” ?
Didier Lestrade: I think that’s what happens after every war. The fight against AIDS has been a real associative and militant conflict in the LGBT community and outside. When there is such a fight, often people want to move on. Young people don’t know what we’ve known. They are not interested because the information is not available. In other European countries, there are LGBT culture centers where it is possible to obtain information, to look for documents or to attend conferences and exchanges. It is something culturally strong. This is not the case in France. As an activist, I have a truly unique archive and collection but I don’t know who to give it to if I die. HIV-positive people have been disappearing for decades and, with them, a past, an experience, objects, books and documents. Everything related to memory is fundamental. I do not understand why in France, the City of Paris or the Ministry of Culture are not interested in this subject.
You insist on the importance of discussing his serological status. Why ?
Learning about and managing one’s HIV status is still important today. Just because HIV is a chronic disease doesn’t mean it shouldn’t be addressed. For me, it is essential to talk about it with your family.
I think if my health has been good, it’s because I didn’t have this stress of hiding something. Families have a right to know, especially parents. Often they want to help and when it is said a few years later the first question is “Why didn’t you tell me earlier”. You have to incorporate them, without getting eaten either, and give them time to evolve on the subject and absorb it. Often, it strengthens the bonds, especially in the families of LGBT people.
Despite therapeutic advances and the fact that HIV is now considered a chronic disease, does serophobia still exist?
Serophobia has evolved a lot. In the 90s, people were really scared. Today, this applies less. On some dating apps, for example, HIV-positive people say so and can indicate that they are “undetectable”. I can’t say it’s that simple at work or in rural communities. Don’t think that people always react positively.
And as there is less information about HIV, people are starting to think about completely silly things again, like the possible infection with a kiss or a mosquito bite. These types of beliefs are beginning to rise. If we don’t continue to inform, old mistrust of HIV-positive people will reappear. The fact that this epidemic is forgotten generates these types of problems. Serophobia feeds on the lack of education, the lack of visibility and the disinterest of society. And then, people also forget the fundamentals of prevention.
Precisely, do you fear that this lack of information will lead to an upsurge in STIs, especially among young people?
Prep protects HIV-negative people from HIV but not from STIs. The more sexual activity you have, the more essential it is to get tested, every three to six months. In girls, for example, chlamydia are a big problem in high school or college. Transmission rates remain high. Sex education should not only focus on the danger but also on rapid screening, which allows an STI to be treated quickly.
You have been HIV positive since the 80s, you are now 64 years old and have years of treatment behind you. How do you age with HIV?
The treatments are effective and the important thing for doctors and the search is that we go well. However, it should not be forgotten that for people of my generation, the succession of not very effective, even toxic drugs, led to significant side effects such as weight loss, as well as bone problems and osteonecrosis. We also have big dental problems: we lose our teeth because our metabolism has changed and absolutely nothing is done to try to help people, like me, who cannot meet their needs at this level.
The other problem is loneliness. Even if everything is better, for our generation contaminated in the 80s and 90s, this phenomenon is all the more important when we think about the end of life. Currently, the nursing home are not formed when a generation of people arrives LGBT, who have a different culture and experience. There are beginning to be structures, with community apartments, but it is not developed.
You seem generally quite pessimistic about the prevention and memory of AIDS. Is there anything that makes you optimistic for the future?
I am optimistic about HIV treatment but pessimistic about access to these treatments in developing countries.
But I am above all disappointed by the lack of interest of people under 30 in the work of people of my generation, which has been fundamental. I don’t see any intergenerational exchanges. We old people have no place.
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