Last night I was invited to chair a panel discussion following the projection of the awards winning documentary ” How to Survive a Plague” by director David France.
The documentary is a powerful history of ACT UP the AIDS Coalition to Unleash Power, and Treatment Action Group, pioneers of AIDS Activism who were instrumental in bringing about HIV treatment. I urge anybody who has an interest in activism and campaigning – not just AIDS specific to go and see it. The film shows how incredibly focused, applied, creative and clever. those activists were, and the historical scale of the change they achieved.
Personally the film touched me for many reasons but I will list 3:
1) As a woman living with HIV I would probably not be alive if shortly after my diagnosis in 1997 I hadn’t been put on the very same drugs that Act Up was instrumental in making available.
2) Act Up changed the protocol of clinical trials so that women could be included in studies of new drugs (all drugs not just HIV drugs). Before this we were excluded from trials because of the fact that we can have babies and protecting the health of a potential baby was considered more important than researching treatment that worked for us (the common idea of reducing women to vessels). Researchers were obviously also concerned that trials would be jeopardized by women dropping out when they got pregnant. To this day women”s involvement in clinical trials is poor with on average less than 20% of women recruited . But at least Act Up opened the door for us, so that drugs can be studied on our bodies.
3) Act – Up and Treatment Action Group brought about historical change well beyond HIV and AIDS. They revolutionized the way science is produced. They were ordinary men that in the face of extinction educated themselves so that they could not only understand research, but influence its agenda .Patients involvement in research and health is now a common occurrence, beyond HIV.
The panel discussion was really interesting and a highlight of my ‘activist career’ , I was seating next to some of my heroes! The panel featured David France the director of the film, Peter Staley, one of Act Up and TAG core activists, and Simon Watney , a British HIV activist who collaborated with ACT UP , writer and Art Historian. As you can imagine the discussion was thought provoking and moving. Among the many things we shared something that Peter Staley said stood out for me . He reminded us how AIDS Activism brought gay people and gay rights to the forefront , in the news, and in trough the television in every American living room. Stonewall had gone unnoticed to mainstream America, but though AIDS activism – suddenly- they had to pay attention to gay people and their rights.
I really wished we had more time for discussion. Watching the film it was clear that back in the 80’s and 90’s HIV activism was a matter of life and death, and it is not a surprise that hundreds of people turned up to ACT UP meetings. However, in a matter of just over a decade ii I can get 15 people in a room to talk about HIV activism, I consider it a success. What has happened? Of course we are not dying anymore, but new diagnosis are still growing, especially among young gay men. People with HIV in the UK live dark lives, under the shadow of stigma, silence, isolation, violence,. Not surprisingly we have worryingly high levels of very poor mental health and high rates of suicides. What can we do to reignite some of the spirit of activism and fight complacency?