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What is activism? how does it differ from advocacy? Those were the first two questions we asked ourselves at the HIV Treatment Activism training organized by the UKCAB last week.

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We agreed that advocacy was about acting on behalf of others, to ensure they could access good HIV services and receive the social support they needed and were entitled to. Advocacy includes providing accurate information to people living with HIV and signpost  them to services.

Activism is something greater. Activism is about the ambition of creating wider change in people’s attitudes, in people’s hearts, in people’s way of thinking and in people’s awareness.

Activism is a state of mind.

We decided that we were both advocates and activists. This is why we spent the five days, from Wednesday to Sunday, learning some important skills. There were 15 of us in the room, and I was pleased of seeing a good mix of men and women and people from a variety of backgrounds and nationalities.

The training was put together by the UKCAB steering committee, of which I am a member.

We covered a huge amount of topics, including:

  • Science and research
  • Virology and Immunology
  • The importance of good evidence
  • How to formulate a research questions
  • Trial design
  • Analysing finding
  • Ensuring research findings and conclusions are coherent

We also looked at very complex (at least for me) statistical methods, used to ensure that research findings are significant and are not down to chance. Those are called P value and confidence interval.

We discussed why as people living with HIV we need to be involved in research. We all agreed that it is crucial that we are involved on formulating questions which are relevant to our lives. We also have a central role in monitoring that trails are conducted ethically, and safely, as it is our lives that are at stake .

We looked also at the skills we need to be around the table in a scientific committee or anywhere else decisions are made. We had sessions on public speaking, dealing with people in position of authority, how to chair a meeting,  and how to write simple reports. We also had a poetry session with activist Godwyns Onwuchekwa llooking at alternative ways of communicating and being activists. Watch this space… I am planning a video blog performing my poetry!

We looked at the structures of the British HIV Association (BHIVA) and the different committees where there can be community representation. We looked at the structures of the NHS and the opportunities to get involved at local level through Healthwatch and Clinical Commissioning Groups (CCG). We had sessions explaining how the UKCAB works and how people can get better involved.

I was really impressed by the passion and commitment of other professionals who came to facilitate sessions, especially Prof. Caroline Sabine, who is a leading statistician at my hospital, and Dr.  Laura Walters, an HIV physicians.  Their passion made difficult things simpler,and it also made us realise that many doctors and researchers are really welcoming of community involvement and interested in working collaboratively with people with HIV.

The evenings were spent watching films about the history of activism, mainly among gay men in the USA. We watched “We were here”, on the epidemic in San Francisco.  Many of us were in tears, as it brought back memories  of the loss of  loved ones.  We were honoured and privileged to have Ben Collins, facilitating the discussion.  Ben was living in San Francisco in the 80″s and lived through much of the events  shown in the film. Ben really helped us put the film into context.

We also watched ‘How to Survive a Plague’. A film on the history of Act Up the AIDS Consortium to Unleash Power ( the coolest name in AIDS activism history, if you ask me).

The after film discussion was facilitated by Simon Watney who was an active member of Act Up. The film made me appreciate how revolutionary the movement of people living with HIV has been.  Act Up changed the way scientific knowledge is produced, it introduced community involvement in research. It was thanks to Act Up that women started to be included in clinical trials. Up to the 90′s women were excluded in  research for new medications (all medications not just HIV)  because scientists were concerned that women would get pregnant and ‘fall out’ of studies. Women were still only considered as “vessels for babies”, and that had to take prevalence on anything else. Even nowadays we are still struggling to have a fair representation of women in trial studies. But at least we are included!

We worked really hard for 5 days: learning and discussing for over 10 hours each day. But it was worthy. Act Up used to say Silence =Death. I am confident there will be less silence about HIV in the UK, thanks to those 5 days we have spent together.

A huge thanks to Memory Sachikonye and Simon Collins and all the members of the UKCAB steering group for making those 5 days possible.

 

5 thoughts on “HIV activism is a state of mind

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