2023-05-20 05:03:22
Forty years following the discovery of HIV, Bruno Spire, director of research at Inserm and former president of Aides, discusses the role of associations of AIDS patients and the evolution of their collaboration with researchers.
Of “misunderstanding” to one “trust”. 40 years ago, on May 20, 1983, a French team discovered the HIV, the AIDS virus. In four decades, the daily lives of patients have greatly improved, in particular thanks to triple therapies and PrEP, a preventive treatment for people at risk of exposure to the virus. Advances made possible in particular by the work carried out in partnership with patient associations, which work with researchers to find a vaccine or a definitive treatment once morest the virus which has killed more than 40 million people worldwide.
“THE militant associations have really made it possible to raise the question of AIDS in the public square”, remembers with franceinfo Bruno Spire, doctor and director of research at Inserm, specialist in questions related to HIV. The former president of Aides between 2007 and 2015 looks back on the path taken since the discovery made by researchers Luc Montagnier, Jean-Claude Chermann and Françoise Barré-Sinoussi and on the role of activists in this work.
Franceinfo: How was the AIDS virus discovered in 1983?
Bruno Spire : In the early 1980s, researchers found a virus from a lymph node of a patient who developed AIDS a few years later. It was the first time that we had seen this type of virus. And what was difficult at the time was to be certain that this virus was indeed the cause of what was happening to patients. It was necessary to confirm it, to take samples from other patients and to do research to design screening tests. We did not say to each other overnight, all at once: “It’s the reason”.
It was a team of researchers that was new and little known at the time. There were many doubts in the French scientific community, which said: “Who are these people we don’t know who think they have found the causative agent of AIDS?” The doubts of the French colleagues were, as if by chance, lifted a little when, a year later, an American team reproduced these results, saying that they were the ones who had discovered the cause of AIDS, whereas it was the same virus they had rediscovered.
You speak of doubts from the scientific community. What regarding French politicians?
The political world was generally not interested in the issue of HIV. They didn’t want to get too wet and take a stand. The subject seemed to them a little sulphurous, because of the mode of transmission of the virus, sexual or through drug use. They did not want these themes to be in the public square. At the time, research on AIDS was really a technical affair and the politicians did not get involved at all in the beginning. This is something that we, the researchers or the associations, we regretted.
Associations, such as Aides or Act Up-Paris, were very active in alerting public opinion through sometimes punchy actions. For what result?
These associations and their activists have made it possible to really impose the subject of AIDS. It is this activism that made it possible to create, in particular, the National Agency for Research on AIDS (ANRS). It then became the National Agency for Research on AIDS and Viral Hepatitis, which now extends to emerging infectious diseases. We must not forget that it was pressure from associations that made it possible to obtain specific funding for HIV research.
“This pressure must continue today, because we still have neither a preventive vaccine nor a definitive treatment that can completely cure the sick.”
Bruno Spireresearcher at Inserm and former president of Aides
The research did not stop with the discovery of the virus. What was the relationship between the researchers and the associations?
At the beginning, there was a lot of mistrust on the part of the associations in relation to the researchers, simply because the scientists were not going fast enough. The situation was catastrophic. Every day we went to funerals of comrades. The associations had a lot of questions that no one answered.
And then, little by little, there was an integration into the community of researchers of association representatives who came to give their opinion. The researchers were also invited to the associations to explain how they worked. A relationship of trust was created and we reached a third phase at the end of the 2000s. Associations can now carry out research projects in collaboration with researchers.
You were talking regarding political disinterest in AIDS in the 1980s. Where are we in 2023?
There is always funding for HIV research. We are far from being the worst off. But we still have to qualify, because research in France is not as well funded as in other countries. That said, if we still have funding, it’s because the associations are constantly present. They put this essential pressure to be able to lead, one day, to a vaccine or a definitive treatment.
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