AIDES founder Daniel Defert dies at the age of 85
Daniel Defert, sociologist, activist and founder of the association AIDES, died on 7 February 2023 at the age of 85. ANRS | Emerging Infectious Diseases pays tribute to this key figure in community health and the fight against HIV.
In 1984, following the death of his companion, philosopher Michel Foucault, Daniel Defert embarked on the fight against AIDS by creating the association AIDES, of which he was president until 1991. Defert and AIDES worked for the respect of sexual minorities and to ensure that people living with HIV/AIDS are perceived, not as vulnerable, but as essential players in the response to the disease – including politically. He conceptualised the role of AIDS patients as social reformers and devoted himself to affirming and building their active roles in their relationships with doctors, researchers and public authorities in all aspects of the disease response: prevention, management and research.
From the very first years of ANRS, AIDES, alongside other associations such as Arcat and Act Up, brought the patients’ experience to the attention of research, participated in the work of ANRS and incorporated its entities, resulting in the creation of TRT-5 in 1991. His critical and demanding view of the role of human and social sciences influenced their organisation, contributing to the development of community-based research by ANRS.
By creating new ways to prevent and treat the disease based on the experience and aspirations of those concerned, AIDES has helped to construct new practices, bringing together the patients, their loved ones and their allies to construct a broad social movement. Defert was the inspiration for the philosophy of the association that its successive presidents have perpetuated.
Bruno Spire, Inserm researcher at SESSTIM, co-coordinator of ANRS’ partner site in Cambodia and president of AIDES from 2007 to 2015, adds: "In creating AIDES, Daniel sparked the big bang in terms of mobilising associations and community health in France. He created the concept of the patient as social reformer: it is by mobilising various marginalised groups affected by the disease that society has been able to progress regarding the rights of patients, the rights of homosexual people, reducing risks for drug users, etc. The community-based research conducted at ANRS is one of the legacies of Daniel's fight".
Prof. Michel Kazatchkine, director of ANRS from 1998 to 2005, also pays tribute to Defert: "I am very saddened by his death. So many beautiful memories spring to mind. Such as a dinner in Montparnasse during which, thanks to Daniel, the idea of evening consultations came about. It was about adapting the hospital to the patients’ needs, and not the other way around, by offering the possibility for evening consultations outside the patients’ working hours to best ensure confidentiality and avoid disrupting their professional lives, at a time of strong societal and occupational stigma. At ANRS, it led to the first debates on health democracy. Daniel was a friend and an attentive and generous advisor throughout those forty years of epidemic in France".
Françoise Barré-Sinoussi, 2008 Nobel Prize in Physiology or Medicine, recalls: "In 1984, Daniel, attentive to others, modest and discreet, showed us the way when it came to fighting HIV together and, beyond that, the inequalities. The most beautiful tribute we can make is to continue the combat embarked upon by this humanist of unparalleled intelligence who has recently left us".
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