Bloomsbury Patient Network

Day Three – AIDS Conference Melbourne

Day Three – AIDS Conference Melbourne

Hi All

Apologies for the delay in getting yesterday’s report to you, but several other things came up that demanded my attention and I had to prioritise. However, here’s my update for Tuesday 22nd.

After a good night’s sleep (at last!), the morning started with a catch up Plenary Session with Mark Dybul, who is the Executive of the Global Fund to Fight AIDS TB and Malaria. He was delivering a talk on ‘Better and smarter investments in the HIV response’, looking at the progress made since the tipping point at the turn of the century when the success of ARVs heralded the possibility of being able to turn the tide of the epidemic. Although there was then a 33% decline in new infections in the period between 2002-20012, his talk focused on the need to provide targeted combination methods to reduce new infections, exploring each method’s relative efficacy in doing this. The various methods are condoms, treatment to prevent mother to child transmission, harm reduction for drug users, circumcision, behaviour change and delaying onset of sexual activity, PrEP and TAsP (treatment as prevention – the most effective method he listed, with 96%+, depending on adherence). He stressed that different methods needed to be prioritised for different people at different times, since people’s circumstances and situations change so much over time. He talked about the Global Fund’s method of addressing regional variations in prevalence, not only on a country by country basis, which is what has ben done historically, but to deal with the local variations in epidemics and address the needs of those most at risk in smaller local areas, as there can be incredible variation from district to district. They need to examine national results but give local ownership for interventions.
Although there have been successes in reducing new infections among younger women in many areas, maintaining current programme levels will in a short time result in an increase in new infections again. This is even more relevant for those key groups at higher risk of contracting HIV – trans people, drug users, migrant workers and men who have sex with men (MSM), who have 19 times higher risk than the general population. The issue with HIV therefore, is that it is a discriminatory plague, targeting people who are marginalised and vulnerable within wider society. This is why a public health approach is needed, which harnesses scientific advances, epidemiology, delivery and humanity, and why the response must focus on community engagement and provide choice for each group. His commitment was to ensure that the Global Fund prioritised those most vulnerable and provided the means to ensure that each community has what is most helpful for their own needs.
It was an impassioned and decisive speech, made all the more impressive by the early interruption of a member of the International Union of Sex Workers, who shouted up to the stage – although most of the audience could not hear what she said, he shouted back that he had every intention of allowing the voices of sex workers to be heard, and she proceeded to climb on stage and take to the microphone, as he quietly stepped aside. She was joined be several colleagues carrying banners and placards and made a plea to have the voices of sex workers included in the discussions of what support should be made available to them. Once she finished she got off stage and he continued with his presentation where he left off, after once again committing to include people from every marginalised groups in the decision-making process. It was a wonderful example of the kind of protest that happens at this conference – it is not only tolerated, but expected, with some of the world’s most powerful decision-makers stepping aside willingly to allow the voices of protesters to be heard. It is always surprisingly moving to see this happen, and never fails to credit the presenter who acknowledges the rights of the community to have their say.

There was an excellent lunchtime discussion in the Global Village – ‘Sex Drugs and HIV – the risks and implications of current trends of drug use in the gay community in Europe’, delivered by Tamas Berecky, a Hungarian member of the European Treatment Action Group (EATG). Some of the topics discussed also came up strongly in the following session on self stigma (see below), but issues of depression, peer pressure, escapism, transgression and equal gratification were all mentioned as reasons for increased drug use. Some of the difficulties that this increased drug use were causing included lower adherence, increased unsafe sex leading to higher risk of other STIs, increased viral load and potential transmissions, aggressive behaviour, other health problems (heart, kidney, liver etc), potential drug interactions, dependency issues, sex work and drug-related crime. There were discussions on what attendees were seeing in their own countries (with some seeing potentially devastating problems in their own gay communities, but others like the UK having a significant problem for a relatively small section of the community). It seems that the response in London of having a drugs worker located within the GUM/HIV clinic was an idea that many others felt would be useful. There was also general agreement that adopting a judgemental moralistic approach would do no good and that it was more important to find neutral ways to engage with gay men and find out what their individual levels of drug use might be, whether they were happy with that and if not, what help they might need in order to make the changes with that, whether behaviour change that might require to promote harm reduction.

Annoyingly Tuesday afternoon had the most programme clashes of any day, when there were several things I wanted to see and do. There was the inevitable Mobilisation March through the city to raise awareness and demonstrate unity (Working together we can end HIV/AIDS), but that clashed with two sessions – ’20+ positive dialogues: people who have lived with HIV for 20 years or more’ (which I really wanted to attend) and ‘ From within: Understanding and addressing self stigma among people living with HIV’.
Addressing self stigma won out in the end, despite (or perhaps because) being a 3-hour session! This seemed to me to be the best use of my time and the workshop turned out to be excellent, expertly facilitated by members of the Global Network of Positive People (GNP+) and team members who carry out the Stigma Index. There were perhaps 50-60 participants, who were split into four smaller groups where we each looked first at how we would define and understand self stigma. This raised issues relating to the fact that self stigma needed to be addressed because defeating our own prejudices and negative beliefs is the first point in the process of making change. Once we are able to override our own negativity and self-judgements, through personal understanding, we will no longer be powerless in the face of external factors. Some of the areas that were discussed related to low self esteem, thinking that someone else’s beliefs (including the media) about you or the virus are more important than who you are, a feeling of a lack of personal power etc. From these discussions each group was allocated a theme to find out how best to deal with the issues raised, looking at the goals and how to get there. The themes and discussions were:

From these discussions we explored what successes we had each had in making these changes and suggested tools and methods to take away and use. Many of the solutions proposed across the four themes will come as no surprise, as they included peer support, role models and greater visibility of people openly living with HIV, doing work/volunteering that makes you feel a valuable member of society/your community, identifying changes you need to make and taking action, mentorship programmes, speakers programmes, counselling, exploring mindfulness/meditation and/or spirituality, recognising our own personal strengths and playing to them. This is not a complete list, but provides a good overview.

The intention at the end of the workshop was for the facilitators to present the findings from the various national stigma indexes that had been carried out, but the group had in fact dealt with every issue and solution that they had already considered, so it was back-paring all round. The energy and enthusiasm of so many people living with HIV, most if not all involved in providing support and services to their own communities was to date my highlight of the conference. There was a real sense of bonding and shared experience, which made the 3 hours zip by.

With the workshop ending just after 5.30, and at such a high energy level, I made a decision to skip the 6pm candlelight vigil in the town centre and went home to rest before heading out for a performance piece on disclosure, staged in a leather bar! Just one of the weird and wonderful events on offer this week in Melbourne.

All the best

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Richard, London

Thank you for sharing your time, knowledge and experience and courage with us!

Mohammed, Westminster

Thanks for giving me back my life and thanks for giving me hope. From now on I will be seeing my life differently. Thanks for everything over the last three weeks it has been a great course.

Ola, 43, Bow

May I take this opportunity to thank you for your time, support and more importantly faith that we can embrace our HIV status with a degree of confidence and pride

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