Since the emergence of HIV in Western countries in 1981, more than 80 million people have contracted it, and more than 40 million have died from it. From the early 1980s, those living with HIV organized to wage a vital political battle. For these struggles, which would profoundly shape the activist landscape and the political relationship to health, the introduction of triple therapy in France in 1996 constituted a major turning point.
The year 2026 marks the 30th anniversary of the arrival of triple therapy in France, the first treatment that made it possible to effectively combat HIV[1]. These treatments represent the biggest medical advance in the field since the identification of the virus in 1983 and the development of screening tests in 1985. The availability of this combination of drugs marks a turning point in the history of the disease: in countries where treatments are available, HIV infection is gradually becoming a chronic illness. Indeed, AZT, the only treatment available until then, had limited efficacy and its management was extremely demanding (nighttime awakenings for doses, very intrusive side effects, etc.). While triple therapy remains burdensome, its administration is less restrictive and its efficacy is far superior. For patients, even though new problems are emerging (resistance to the drugs, recognizable side effects that lead to discrimination in friendships, professional relationships, etc.), HIV infection can now be controlled and the disease is no longer fatal.
Anger = Action
This marks the beginning of what is known as the "normalization" of the disease in France. Research is now focused on improving treatment tolerance, simplifying administration, and increasing the number of prevention methods. Associations are fighting against stereotypes and misconceptions associated with the disease, working to inform the public, and, with the future prospects now available to patients, new themes are emerging in media coverage of the epidemic.
Act-Up has successfully combined grassroots activism with impactful communication to advance its demands.
The availability of treatments also represents a success for community activist groups, which formed as early as the 1980s to address government inaction. Until 1986, advertising for condoms was prohibited, but the following year, the first televised prevention campaign aired, urging young people to "get informed" to avoid transmission, without mentioning condoms, which at the time were the only effective means of preventing transmission.
Action = Life
Faced with legal and institutional obstacles to prevention, community organizations have taken on the responsibility of raising awareness about the disease and providing condoms in social venues. While the first months of the epidemic in France were marked by denial from the gay medical association, this was because, in the context of the gradual liberalization of morals that characterized the post-1968 period, society remained violently homophobic and homosexuality was still criminalized. News of an unknown disease primarily affecting gay men thus appeared to be a new attack by conservatives against the LGBTI community rather than a genuine threat. In fact, news reports on the epidemic on Antenne 2 and TF1 regularly broadcast speeches by American pastors throughout the 1980s, equating the disease to "divine punishment," alongside reports on activist groups in San Francisco and New York.
Poster from 1995 signed, among others, by the Belgian Anarchist Federation and Alternative Libertaire Bruxelles.
FICEDL
Information = Power
But very quickly, faced with the growing number of patients and the French government's refusal to react, groups formed to disseminate information. The actions of activist groups like Aides d'abord, and then Act Up Paris a few years later, shaped the implementation of prevention policies still in place today regarding sexual health. Throughout the epidemic, these groups fought for patients' access to information, clinical trials, and treatments. They also pushed for the elimination of the use of placebo in trials when there is no known treatment and the disease is fatal[2]. When the National AIDS Council proposed in February 1996 to distribute treatments by lottery to address potential shortages, advocacy efforts by associations led to the abandonment of this proposal, favoring access by prescription for all individuals whose health condition necessitated treatment. Subsequently, it was under pressure from these associations that the major pharmaceutical companies (Roche, Gilead, etc.) relinquished the patents for the molecules, thus authorizing the production of generic drugs, thereby lowering their cost and increasing their accessibility in countries where they were still difficult to obtain. The associations also identify patients' needs, document side effects and how to manage them, advocate for a needle exchange program for drug users that provides access to clean, single-use syringes, and distribute harm reduction kits.
The Sisters of Perpetual Indulgence is an international LGBTI movement founded in San Francisco in 1979 and in France in 1991. It fights against homophobia and promotes HIV prevention by using drag to subvert religious codes.
The Sisters of Perpetual Indulgence is an international LGBTI movement founded in San Francisco in 1979 and in France in 1991. It fights against homophobia and for HIV prevention, using drag to subvert religious codes. Benjiboi
By organizing the fight against HIV, these associations are also shaping a new patient-doctor relationship: activists, by appropriating the scientific literature, become experts on the disease, establish themselves as equals in dialogue with researchers and doctors, and advise each other in cases of limited access to care. The figure of the expert patient and the concept of peer support emerge, having proven their effectiveness in the field, which allows for the initiation of structural changes in the healthcare system: these organizational methods, which borrow from the crip movements[3], are adopted and imposed on public authorities. By informing patients about treatments, helping them to interpret test results, or even referring them to trained and non-discriminatory practitioners, the associations help to reverse individual power dynamics during consultations.
The Names Patchwork is a memorial project initiated in 1985 in San Francisco and still active today. It invites anyone who wishes to commemorate a victim of AIDS with a 3-foot by 6-foot patchwork, which is then assembled. Still active in 2026, it pays tribute to more than 94,000 people on over 48,000 memorial panels.
Essonnien
Wikimedia Commons/NIH
Silence = death
The HIV epidemic in France also reveals the social dimensions of vulnerability, far more so than Covid-19. Associated from its emergence in Western countries[4]with stereotypical representations of marginalized people (gay men, drug users, Black people and migrants in general, sex workers, etc.), all effective initiatives aimed at limiting the spread of the disease among these groups share several commonalities. On the one hand, most of these initiatives are developed in close collaboration with associations, individuals, or informal groups from these populations, and are recognized by their peers. On the other hand, they all aim to improve, directly or indirectly, the living conditions of these groups, as well as their access to healthcare in general. Conversely, repressive policies, which claim to limit or prohibit practices, result in an increase in infections. In 2018, Aides noted the "catastrophic"[5]outcome of the law criminalizing clients of sex workers. Similarly, the very high number of infections in prisons can be linked to the near absence of harm reduction programs: Sida Info Service reports prevalence rates "6 to 10 times higher in prison than outside" for HIV and hepatitis[6].
Act-Up Paris at ExisTransInter in 2016.
Missbutterflies
The show must go on. Current treatments make the virus undetectable in the blood, thus preventing its transmission[7], and are all the more effective when started early after infection. It is therefore essential that everyone has equal access to prevention tools (pre- and post-exposure prophylaxis, preventive treatment (TasP), single-use injection equipment, internal and external condoms, etc.)[8], and to screening tests (free in laboratories or at CEGIDD centers; self-tests are available at community outreach centers). But above all, it is essential to have access to safe and adequate healthcare to avoid exposure to HIV, and to have stable access to treatment after transmission. Various aid policies for developing countries, often tainted by colonial practices, fail to guarantee sustainable access to treatment, as demonstrated by the Trump administration's policies on this matter, and those of the Bush administration before it. The fight against HIV is fundamentally an anti-capitalist and anti-colonial struggle, against racist, sexist, homophobic, and transphobic discrimination, and for the right to full bodily autonomy. It is also a struggle in support of the demands of sex workers' unions, asylum seekers, and drug users. The colossal work carried out by associations since the beginning of the disease has shown the public what Crips activists have known since the 1970s: the fight for access to healthcare is a collective endeavor. Contrary to what conservative policies against Covid tried to make us believe, through border closures and the delisting of screening tests, we cannot emerge from an epidemic individually. We fight and defeat it together, through collective action, or we lose the battle.
Marco Pagot
Act-Up Paris remains one of the leading organizations campaigning against HIV in France.
Missbutterflies
HIV: 45 YEARS OF STRUGGLE
In 1981, the Centers for Disease Control and Prevention (CDC) in Atlanta received a report of two rare lung infections in two young, seemingly healthy adults, which drew attention. These were the first officially recorded cases of AIDS.
In 1982, the disease was named AIDS (Acquired Immune Deficiency Syndrome). Françoise Barré-Sinousi isolated a virus, LAV, in a laboratory at the Pasteur Institute.
In 1984, the AIDES association was founded by Daniel Defert following the death of his partner, Michel Foucault.
In 1985, the ELISA screening test was launched in France.
In 1986, LAV (or HTLV5) was renamed HIV (Human Immune Deficiency Virus).
In 1987, AZT was launched in France, and the first HIV prevention campaign was launched.
In 1989, Act Up Paris was founded, along with the association Le Patchwork des Noms, the AFLS (French Agency for the Fight Against AIDS), the National AIDS Council, and the ANRS (National Agency for Research on AIDS and Viral Hepatitis).
1994: Successful trial on the effectiveness of AZT against HIV transmission during pregnancy; first Sidaction (AIDS fundraising event), during which Clémentine Célarié kissed an HIV-positive man to combat misinformation about modes of transmission.
1995: Creation of UNAIDS.
1996: Triple therapy made available in France, distributed only in hospitals until 1997.
1997: Post-exposure prophylaxis (PEP) made available for healthcare workers.
1998: Creation of the French Institute for Public Health Surveillance (InVS), responsible for collecting health data and coordinating prevention efforts in the event of a health risk. It remained active until 2016.
2010: Rapid HIV tests (RDTs) became available at community health centers.
In 2016, preventive treatments (PrEP) became available by prescription and were fully covered by health insurance.
Validate
[1]HIV (Acquired Immunodeficiency Virus) is the virus that attacks the immune system, leading to the development of various infections and diseases, including opportunistic infections. Without appropriate treatment, AIDS (Acquired Immunodeficiency Syndrome) is the terminal stage of the disease.
[2]Access to clinical trials offered significant hope for people with AIDS. The use of a placebo group, when the progression and outcome of the disease were already known, provided no additional information about the treatment being tested, while simultaneously condemning the patients who received it.
[3]A movement that emerged in the 1960s and 1970s in the United States, which questions representations of disability and from which the disability rights and anti-ableist struggles in France are mostly indirectly derived.
[4]The virus had in fact been present in West Africa since at least the 1950s.
[5]"Prostitution: Two Years After the Law, a Catastrophic Assessment," Aides, April 12, 2018.
[6]"Harm Reduction in Prison: Let's Respect the Law," Sida Info Service, January 26, 2024.
[7]This is the "U=U" slogan of the associations: undetectable = untransmissible. Under good treatment conditions, the presence of the virus becomes undetectable in the blood, and there is then no longer any risk of transmission.
[8]"Diversified Prevention," Act-Up Paris, 2022.
https://www.unioncommunistelibertaire.org/?1996-Victoires-et-heritages-des-luttes-contre-le-VIH
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Source: A-infos-en@ainfos.ca
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