The new activism

Guest writer Robert James looks at how the whole idea of being an ‘AIDS activist’ has changed in the era of treatment and long life.

When I decided to do a PhD thesis on how HIV activism has changed in a developed country since the arrival of antiretroviral treatment (ART), I found it was just about the only study of this subject. This article describes a few of the changes I found. 

What is an HIV activist?

Firstly, what is an activist? Perhaps more than in any other disease area, people with HIV have always been subject to stigma and discrimination, jeopardising their lives, rights and dignity. HIV activism grew out of the response to this and its philosophy was enshrined in the Denver Principles of 1983.¹

Now, I found a lack of clarity about what an HIV activist is among the people I interviewed. This may, in itself, be an indicator of how much HIV activism has changed. Activism is often seen as being strongly linked to protest; the process of ‘involvement’ can seem too professional or sedate to be real activism. Some considered activism to be an unpaid activity, adding to the uncertainty of those employed in organisations working to promote the rights of people with HIV. As one interviewee said, “Am I an activist? I don’t know… I don’t know whether other people would call me an activist”.

AIDS activism in the United States had a reputation for being loud, brash and dramatic, and the UK also saw its fair share of protest and drama. But activism has changed since effective ART became available to stop HIV turning into AIDS.

At the start of the epidemic, AIDS and HIV activism attracted huge interest from writers, academics and journalists,² but I found that almost the only activism studied now is about expanding access to HIV treatment beyond the developed world. Changes in activism in developed countries, although significant and profound, have been virtually ignored.

To find out about current treatment activism I interviewed 15 HIV activists and 15 professionals, including doctors, nurses, commissioners and policy makers working in HIV. Many had been involved for over a decade but some for only the last few years; they included British and African people, men and women, gay and straight.

Everyone agreed that HIV activism had changed from protest to involvement: activists who had started as outsiders, demanding the right to be involved in discussions about their treatment by medics and the state, were now talking with clinicians and government departments. In the words of one activist, “People won’t listen to you these days if you just rant and rave.” 

Dialogue and engagement

The activists interviewed felt involvement and dialogue were effective approaches: “Engagement, does it make a difference? I’d say, absolutely, and I can give you examples.” Instances highlighted as areas where involvement played a role include the development of guidance by the Crown Prosecution Service on prosecutions for HIV transmission, the shift in drug trials to include more women, and the development of equality laws to include everyone with HIV.

Although the HIV voluntary sector may now appear to be a group of professional organisations which have a calm and considered working relationship with medics and the government, many started out using very different tactics to get their messages across. A good example is the relationship between activists and BHIVA, the British HIV Association, which – amongst other things – writes the clinical guidelines about managing HIV treatment and care. 

The first set of guidelines, produced in 1997³, prompted angry protests from activists, including the disruption of conferences, for not allowing positive people a voice in the writing of the guidelines and for over-cautious recommendations on the use of new treatments. Now, not only do people with HIV sit on the BHIVA guideline writing committees, but a draft version of guidelines is also made publicly available for people with HIV, activists and other interested parties to comment on. BHIVA also has a ‘community representative’ on its management group and most, if not all, of its other committees.  These representatives are chosen by a network of HIV activists and organisations (called UK-CAB) and not by the medics. 

Getting involved in treatment activism, patient involvement in the NHS, or volunteering in – or even setting up – a community organisation means engaging with systems that all have their own structures and languages, whether relating to medicine, commissioning, management or law. This knowledge barrier can be intimidating and a deterrent, but those who overcome it become empowered by their deeper understanding to debate with professionals on a more equal basis. 

The change from protest to involvement has brought a greater emphasis on knowledge of where and how to get involved; this has become a common goal of conferences for people with HIV in the last few years.⁴ Patient involvement was a relatively new and unusual development in health care at the time the HIV epidemic started, and the success of partnership working between patients and doctors in HIV gave added impetus for it to become one of the primary goals of NHS policy. 

Patient groups

Another important change since effective ART became available has been the formation of patient groups rather than community groups.

From the 1980s onwards, a multitude of community-based HIV organisations appeared:  some, such as the Terrence Higgins Trust in London and George House Trust in Manchester, were set up to do HIV prevention work and provide services to people with HIV and AIDS; others were self-help groups where people with HIV met to support each other. In London, Body Positive, Positively Women (now Positively UK) and later the UK Coalition⁵ formed as self-help groups and went on to become large organisations employing staff and providing services. Many local groups adopted the Body Positive name and attached the name of their town or area, such as Brighton Body Positive or Thames Valley Body Positive (now Thames Valley Positive Support).

Many smaller groups have since closed, partly as a result of funding cuts but also because needs changed with the arrival of ART. Community groups, such as Positively UK and OPAM (the Organisation of Positive African Men), continue to exist, but ART, and the fact that many people with HIV are now working, has led to a relocation of peer support from the community to the clinics. During the last ten years, patients and staff at a number of clinics, particularly in the London hospitals, have set up groups for people with HIV using those clinics. Although these groups are concerned with social issues affecting people with HIV, their primary focus is the clinic and care of people with HIV at their hospital.

The internet, too, has enabled a migration of peer support to online, virtual communities such as PozFem and myHIV.org.uk.  

In summary

The change that ART brought to people with HIV was extraordinarily dramatic in its impact on lifespan and quality of life.  But it has changed activism too:  if you liked angry, dramatic protest it can feel as though HIV activism has disappeared, but in reality it has mutated into a more subtle form.  From being outside protesting about decisions made by other people and demanding to be let in, activists have now come inside.

Since his HIV diagnosis in the late 1980s, Robert James has, for much of his time, been involved in HIV groups and advocating for people with HIV.  He has recently completed a PhD thesis looking at the history of HIV activism in the UK. He is planning to co-author a book on HIV activism and would like to contact people involved in HIV activism in the past. You can contact Robert by email at: r.james@bbk.ac.uk