LIONEL BONAVENTURE / AFP
French journalist, writer, LGBT activist and former president of the AIDS organization Act Up France, Didier Lestrade poses during a photo shoot 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”. Within Act Up, a storyOriginally published in 2000 and now republished by La Découverte, the journalist recounts years of activism, marked by memorable actions, such as the installation of a giant condom at the obelisk in the Place de la Concorde, on December 1, 1993. If he has not escaped controversy, at 64, this leading figure in LGBT+ activism is one of the last guardians of the memory of the fight against AIDS. Today he laments the lack of interest of young people in the disease- “Young people see it as a problem for the elderly” – and expressed concern that “memory of HIV is lost”.
The HuffPost: How do you explain that, as you say, “memory of HIV is lost” ?
Didier Lestrade: I think that’s what happens after every war. The fight against AIDS has been a true associative and militant conflict inside and outside the LGBT community. When there is such a fight, often people want to move on. Young people do not know what we have 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, search for documents or attend conferences and exchanges. It’s something culturally strong. This is not the case in France. As an activist, I have a really 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 essential. I don’t understand why in France, the Paris City Council or the Ministry of Culture are not interested in this issue.
You insist on the importance of discussing your HIV status. Why ?
It is still important to know and control the HIV status. The fact that HIV is a chronic disease does not mean that it should not be addressed. For me, it is essential to talk about it with your family.
I think that if my health has been good it’s because I didn’t have that stress of hiding something. Families have a right to know, especially parents. They often want to help and when it is said a few years later the first question is “Why do not you tell me before?”. You have to incorporate them, without being eaten either, and give them time to evolve in the subject and absorb it. Often, it strengthens ties, especially in families of LGBT people.
Despite the 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, people who are HIV positive 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 because there is less information about HIV, people start thinking about completely silly things again, like possible infection from a kiss or a mosquito bite. These types of beliefs are beginning to emerge. If we don’t keep reporting, the old mistrust of HIV-positive people will reappear. The fact that this epidemic is forgotten creates these kinds of problems. Serophobia feeds on the lack of education, the lack of visibility and the disinterest of society. And then people also forget about the basics of prevention.
Precisely, do you fear that this lack of information will cause a rise in STIs, especially among young people?
Prep protects HIV negative people from HIV but not from STIs. The more sexually active you are, the more essential it is to get tested, every three to six months. In girls, for example, chlamydia is a big problem in high school or college. Transmission rates remain high. Sex education should not only focus on danger, but also on rapid detection, which allows rapid treatment of an STI.
You have been HIV positive since the 80s, now you are 64 years old and years of treatment behind you. How do you age with HIV?
The treatments are effective and the important thing for doctors and research is that we are well. However, it must not be forgotten that for people of my generation, the succession of drugs that were ineffective, even toxic, had significant side effects such as weight loss, as well as bone problems and osteonecrosis. We also have major 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. While everything is better, for our polluted generation in the 80s and 90s, this phenomenon is even more important when we think about the end of life. Currently, nursing homes are not formed by the arrival of a generation of LGBT people, who have a different culture and experience. There are beginning to be structures, with community apartments, but it is not developed.
Overall, it seems rather pessimistic about AIDS prevention and memory. 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 above all, I am disappointed by the disinterest of those under 30 years of age in the work of people of my generation, which has been fundamental. I don’t see any intergenerational exchange. The old have no place.
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