1992 feels like another age. Thirty years ago, the world of HIV in Europe was very different. Care was medicalised, and treatments were significantly more toxic and often poorly tolerated. AIDS mortality was high (in the US, the leading cause of death for men aged 25-44), and the patients’ voice severely muted. Stigma was rife and heavily politicised, fed by a poor understanding of HIV, conservative religious views, and general abhorrence against lifestyles seen as ‘inappropriate’. The moral panic towards AIDS, born in the 1980s, was still strong.
Treatment advocacy, led by prominent organisations such as the AIDS Coalition to Unleash Power (ACT-UP), was at the forefront of community efforts to gain access to medicines that, whilst not yet fully approved, would improve on what was currently available. This activism was – by necessity – confrontational and shocking. The French movie ‘120 BPM’, made in 2017 and set in the early 90s, captures some of the passion and energy of activists associated with the Paris arm of ACT UP. They fought for quicker responses from politicians and pharma in the fight against HIV and AIDS, which at the time were seen as slow and unresponsive to the terrible morbidity and mortality experienced by affected people.
It was in this turmoil that plans were made in 1991, between the UK’s Terence Higgins Trust and Deutsche AIDS-Hilfe in Berlin, to hold the first AIDS & Medication meeting for AIDS activists, to strategise treatment activism in the European context. From that meeting came the first European AIDS Treatment Agenda, released in time for the 7th International AIDS Conference in 1991, and the first statement of its kind. In the following year, 1992, the AIDS & Medication meeting was held in Berlin. This was attended by 19 people from nine European countries and included observers from the European Commission and WHO Europe. It was from this that the European AIDS Treatment Group was born and registered in Germany (which it is to this day). The rest, as they say, is history, and details of EATG’s work up to 2017 are available in the publication released for the 25th Anniversary five years ago.
Since 1992, EATG has evolved and adapted. It remains the largest Europe-wide community -led HIV organisation advocating for better treatment and care for people living with and affected by HIV and its comorbidities. EATG provides a vital conduit for the patient’s voice to be heard at the highest levels, and to this end continues to be active in European forums, pharma discussions, partnership building, and present in conferences and events.
During the 30 years EATG, we’ll be celebrating some of EATG’s achievements, reminding ourselves of what we could have done better, and looking forward to our contribution towards an AIDS-free world by 2030. Each month, one or more blogs will be published from activists and EATG members, talking of the early days of EATG, highlighting some of the challenges and opportunities, and sharing accounts and anecdotes. We hope these provide some insights into the lived experiences of people involved closely in HIV activism and EATG’s work across Europe over the last 30 years.
We hope you enjoy reading all the blogs, and if you have comments or stories of your own to share, please don’t hesitate to get in touch with me or Apostolos Kalogiannis at any time during the campaign.
Are you living with HIV/AIDS? Are you part of a community affected by HIV/AIDS and co-infections? Do you work or volunteer in the field? Are you motivated by our cause and interested to support our work?
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