Activism and courage
The book is also a story of resistance and struggle and of how a social movement can step in when society's institutions fail. For example, the concept of 'safe sex' was invented by the HIV activists. In 1983, the activists Richard Berkowitz and Michael Callen (1955 – 1993) published the pamphlet How to have sex in an epidemic: one approach, with the guidance of the doctor Joseph Sonnabend. All of them were trendsetting activists. The point they made was that sex and love between men is not in itself risky; it is the way they have it. Promiscuity in itself should not be made an issue, only sex without a condom. The message came from people who were directly concerned. They knew 'the lingo' and where the shoe pinched.
This knowledge can be transferred to preventive harm-minimisation efforts in general: people need help where they are, not in light of our own notions of how they ought to live their lives, but by helping them to make the best possible informed choices. Studying a phenomenon on its own premises also makes it clear that practices and patterns of action often have explanations other than our first assumptions. In this sense, Benny Henriksson's Swedish ethnographic study 'Risk factor love', published in 1995, was unique, in that he sought out gay men in places where they had sex, such as in the saunas (3). He showed that anal sex without a condom was a strongly symbol-laden act. For these men, dropping the condom was a demonstration of intimacy and love of their partner, i.e. an explanation quite different from the view that people who dropped the condom acted 'irresponsibly'.
HIV/AIDS activism was gradually professionalised. The activists realised that to achieve influence, they needed not only to take to the streets, they also needed access to the boardrooms and a place at the table in the Food and Drug Administration, National Institute of Health, research groups and pharmaceutical companies. The activists needed to learn the language of the politicians and researchers, and they needed to understand virology, immunology and statistics.
It is striking to see the extent to which the story of HIV/AIDS activism is also an early narrative about user participation in research. The activists succeeded in portraying themselves as legitimate representatives of the test subjects – people with AIDS. They demanded not only drugs for all ('Drugs Into Bodies') and lower prices for these drugs, but also influence on the research process itself. For example, they were vehemently opposed to the testing of AZT in a placebo arm and not providing the drug to all patients with AIDS. The usual course of testing of the drug was circumvented, the Phase II study was terminated because of its promising results, and the drug was released to the market pending a final approval, due to the seriousness of the situation (also referred to as 'compassionate use') (4).
Dideoxyinosine (ddI) was introduced through a so-called 'parallel arm' to release the drug more rapidly to people with AIDS. This meant that the drug circumvented Phase II and III testing.
The issue is equally relevant today, for example in testing of experimental therapies for metastasised cancers: How do you explain to a patient with a death sentence that there is a 50 % chance that he/she will receive sugar pills? During the testing of AZT, the test subjects went out of their way to ensure that the drugs they took were active ones: they learned to taste the difference between placebo and AZT, they swapped pills with other study participants to reduce the risk of receiving only placebo, and they went to local laboratories to have the content of their capsules analysed.
In his study of the HIV epidemic, 'Impure Science' the sociologist Steven Epstein demonstrated the extent to which the credibility of the study results depended not only on the study and its results alone, but on the success of various stakeholders in presenting themselves as credible representatives or interpreters of research experiments (5). The HIV/AIDS epidemic thus helped change the way in which biomedical research is conducted, and especially the views on involvement of users in the research process. Frank Miedema, one of the founders of Science in Transition, an organisation that works for more transparency in the publication of research and increased user involvement, has stated that the HIV/AIDS activists made him realise the importance of user involvement in research – to enable the researchers to ask the right questions (6).
The activists questioned the gold standard of medical intervention research – the randomised, controlled trial – and showed how a series of normative assessments are made in all medical research, for example how study groups are composed. Thus, the activists succeeded in undermining the status of the randomised, controlled trial as representing an indisputable truth that was directly applicable to the real world.