Activism:
“it’s much less confrontational now”
Jonathan Grimshaw and Robert James conclude their look at how HIV activism has changed in the UK. The appearance of effective antiretroviral therapy (ART) against HIV in 1996 brought about a revolution for people with HIV and those who cared for them. An almost universally fatal illness was transformed to one that could be controlled by therapeutic drugs; pretty horrible drugs sometimes but ones that actually worked. Treatment was not the only major change that happened in HIV over the course of the epidemic with a revolution in the laws around HIV and those most affected by it in the UK; gay men. The dominant mode of HIV activism also changed from protest to involvement. We have moved from activism by groups of people who, as one eminent doctor put it, “were quite used to taking on society and saying ‘No! This won’t do’” to activists as knowledgeable negotiators working with doctors, nurses and civil servants to try and improve the lives of people with HIV. In the last article we looked at social issues in HIV over the past 30 years; this one looks at activists’ involvement in treatment issues, the law and why ‘involvement’ is the main tactic for activists now. The idea of involvement in decisions about their treatment and care was a long standing 24
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demand of people with HIV appearing in the ‘UK Declaration of the Rights of People with HIV and AIDS’ in 1989 and internationally recognised in the GIPA (Greater Involvement of People with AIDS) principles. Involvement has also become mainstream government policy: the NHS, local councils and even the Crown Prosecution Service want to consult people, they may not listen but they do at least ask now. In the UK the impact of involvement by activists in treatment has been significant. Although there was some involvement in treatment issues before 1996, treatment activism really took off with ART. In 1989 there had been a couple of ‘patient representatives’ on the AIDS trials group of the Medical Research Council and some HIV organisations produced information about AZT, the only HIV drug available then. After ART, activists began to work with medics but perhaps inevitably, this started with a protest about the first treatment guidelines issued by the British HIV Association (BHIVA). These guidelines were published April 1997 and were bluntly denounced as not involving people with HIV and as scientifically poor, “they do not represent the best medical thinking,” as Raffi
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Summer 2012