A-Infos (en) France, UCL AL #373 - History - 1996: Victories and Legacies of the Fight Against HIV (ca, de, fr, it, pt, tr)[machine translation]

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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