Here’s my last write-up for the World AIDS Conference, from Friday’s final day.
With only the morning providing a choice of sessions before the afternoon’s round-up and close, I chose the workshop on Ageing with HIV, delivered by the local HIV support organisation, the Victorian AIDS Council (VAC). Facilitated by Lizzi, one of their support workers who is herself in her early 60’s and living with HIV, she first talked about the kind of issues affecting older people with HIV in the Melbourne area. Perhaps unsurprisingly, given the similarity of their ageing population, the issues and anxieties were very similar to those we have in the UK. Financial insecurity, health concerns and anxieties about ageing and care were most common.
Most of the session was dedicated to exploring the care anxieties of people who feared encountering discrimination and judgement either with any home help they might receive or in care homes. VAC had done a piece of research similar to THT’s 50Plus, called the Future study, which found that people were most concerned about potentially having hide their status, their sexuality and as a result their meds, memorabilia such as rainbow flags, photos of same sex partners etc. There were unfortunate incidences of nurses and carers disclosing their status to family who didn’t know and of extremely poor knowledge of HIV, transmission issues, need for regular ARVs and adherence, as well as confidentiality issues within homes.
The solution they felt was most needed was training and education for healthcare professionals in universities, teaching schools, councils etc., given the fact that the experience of ignorance around transmission risks was common (dentists were clearly pointed out as being poor in this area as well). There was a desire to receive gay and HIV-specific support from many, given experiences of people who find that whenever they tried to access care for other age and heath-related issues, the focus always ended up being on their HIV, which for them was the least of their worries, being as well controlled as it was. Although the regional council had recently put together an LGBTI Age Strategy, VAC had to fight hard to have any mention of HIV included (this was a common recurrent theme throughout the conference – gay organisations often seem very reluctant to consider HIV as being anything to do with them, which is reflected in Stonewall’s lack of engagement here in the UK).
After some role-play from two of the VAC volunteers, there was time for audience discussion and sharing of problems and solutions. Organisations from around the world spoke of their difficulties in this area and the sudden awareness of how big an issue it is and will be. One of the participants raised the issue of needing insurance companies to potentially recognisers that age-related problems may arise earlier in an HIV-positive person and therefore provision may need to be made at an earlier age. While there was a worry that this might be a tough ask, with current medical research highlighting the issues, there was potential to lobby and campaign for this. Other than a participant from S Africa, who spoke about a culture of far greater openness and support within families (given that it was often the case to have 3 generations of people living with HIV in a family), there was nowhere which had gotten to the stage of service development that THT have achieved in England with the Health Wealth & Happiness Programme. So it was great to be able to share the information and resources available via our website and signpost people to the practical guidelines for providing appropriate and sensitive services to people with HIV.
The afternoon sessions consisted of a round-up of the week’s conference highlights by the rapporteur team leaders (the person who managed the reporting team for each ‘track’ of the programme). The tracks are the specific areas of research, which are made up as follows and include the main take home messages I got form the presentations:
Track A: Basic and Translational Research: Excitement about new methods of reactivating latent virus and flushing it out so that we have the potential to eradicate HIV by then using gene therapy and potential vaccines and neutralising antibodies. Research is exploring ways of reducing long term inflammation, which seems to be implicated in much of the age-related health issues.
Track B: Clinical Research: Recognition re-above that long-term inflammation is a bad thing which needs to be addressed, that chronic pulmonary obstructive disease (COPD) may be one of the more pressing issues that we have to address as we move ahead (especially if we can’t get people with HIV to stop smoking!). Successes in the HPV vaccine and new Hep C drugs were hailed, but wider roll-out of treatment and inclusion in studies were needed There was recognition of price issues being crucial to the success in treating hep C and in one of the more inspired moments of activism of this conference, a team of protesters delivered a human liver to the hep C session and then on to drug-makers Gilead, who have priced their drug at a ridiculously high level.
Track C: Epidemiology and Prevention Research: The evidence around a wide range of prevention strategies really does mean that we have the potential to AIDS and to reduce levels of HIV infection to a negligible level. This is especially true with potentially promising new oral and injectable PrEP strategies. as well as new microbicides, vaginal rings and nanofibre films. The one thing that would currently make the biggest difference in preventing new transmissions around the world would be changes to discriminatory laws.
Track D: Social and Political Research, Law, Policy and Human Rights: The negative impact of criminalisation was highlighted as being the worst barrier to effective strategies. A need to provide local tailored solutions to those most at risk is crucial and it is foolish to ignore the issue of sexual pleasure when addressing these issues. The end of AIDS will never come unless the interlinking issues of poverty are addressed. New media has the potential to make a he difference in terms of combatting isolation and exclusion and in making people’s voices heard.
Track E: Implementation Research, Economics, Systems and Synergies with other Health and Development Sectors: Likely that indigenous people and young people will be included as key populations in the response to HIV and AIDS in the next year. We cannot allow PrEP, TAsP and other biomedical prevention methods to push aside other prevention methods. Funding that relates to prevention and support for sex workers and drug users has traditionally been a tiny percentage of the overall aid response but that needs to change. (There was a large focus on drug use and sex work at this conference, given that they are a major issue in the region, but I have reported less on these issues, given that they are far less representative of the experiences in the UK). Community involvement is not about delivering messages in order to get us to do things, but must be about empowerment, listening to, and learning from affected communities! This must include funding community-led initiatives. Essential – ending criminalisation, integrating HIV services into accessible and sustainable health services, integrate practice-based evidence into research.
As well as these, there were also reports back from several other programmes – the Leadership and Accountability programme spoke of the need to have more cross-working, to have more clinicians engaging with the community racks and vice versa, inclusion and social interaction is essential across all regions. HIV is not simply a biomedical issue as with many infections, we must address marginalisation, supported by effective clinical, political and community leadership.
The talk by the Community Rapporteur was the session I was most looking forward to and most disappointed by. The spokesperson chose to spend 10 minutes speaking about the ‘community tapestry’ of diversity which makes up those affected in the epidemic, ensuring that we don’t define people by the one ‘risk’ characteristic but look at their needs holistically. He then took another 5 minutes looking at what the messages and discussion were from 10 years ago. So when he finally came to speak about the key messages from this conference, he had run out of time and had to step down! Duh!!
The report from the Global Village again raised the key issue of human rights, the need to have ownership of our services and to see the decriminalisation of our identities. He spoke of the Global Village as being the heart and nerve centre of the conference, which for me was very much the case in this particular conference, where I felt it the one place that addressed the needs that I feel are most important for those living with HIV (as opposed to those at risk of contracting it).
The Youth Programme rep was passionate about the need to include the voices of young people in conversations about HIV care, treatment and prevention. Young people are the people most likely to die of HIV-related ill health on a global level, which is why education is essential, especially in relation to sexuality and sexual activity. Policy and law reform must happen to enable peers, health workers, teachers and governments to provide a loving response with acceptance at its core.
The final closing session saw speeches from the local clinical host and the Mayor, the current outgoing and incoming Presidents of the International AIDS Society (Francoise Barre-Sinoussi and Chris Beyrer, respectively), as well as the local host for the next conference which will be in Durban S Africa in 2 years. It was notable that Chris Beyrer is the first out gay President of the IAS and Dr Violet Banda will be the first African woman to host the next conference. There were speeches from community representatives from the drug using community, the gay community and a young woman form S Africa. All of these, along with every other speaker in the closing session made explicit reference to discriminatory laws and policies and the need to prioritise funding and support to make all the potentially ground-breaking innovations work alongside past methods to reach the goal of ending AIDS.
The final speech of the day was by Sir Bob Geldof, who spoke in his own inimitable way about what needed to be done, which was basically about ending the 20st century mantra of competition and making the 21st century about cooperation, consensus and compromise. Global communication technology has the potential to change the world and its systems, which needs to be done, since our global institutions do not operate in collaboration but in co-dependency, which is unhealthy. As in his previous talk at the conference, he slammed a number of countries for not meeting their financial commitments in supporting the Global Fund Against HIV, TB and Malaria and was clear that poverty anywhere in the world in this day and age was a monstrosity when so many lived in such obscene wealth.
In closing, and from my own perspective, I would say that as far as the range of the programme was concerned, this looked to be the most uninspiring and least relevant world conference programme I have seen to date. I usually have to try and choose between 5 and 10 sessions a day that I would like to attend but have to whittle down to 3. This year, after going through the whole programme, I had 20 sessions marked as interesting, most of which I was able to attend and report back on here.
My overwhelming sense was of a conference programme that was so driven in its rush towards the end of AIDS that it had forgotten that we will still be left with millions needing support to live well with HIV. The biomedicalisation of HIV is to be greeted inasmuch as we now will have long lives and pretty much no risk of passing on HIV, thanks to ART, but if we do not address the underlying inequalities and difficulties that result in an HIV diagnosis, we will have learned nothing and still run the risk of being marginalised and isolated. Thankfully, the 20 sessions that I did highlight and attend were of an incredibly high standard and afforded me the wonderful opportunity to meet other activists campaigners and support workers form across the globe, whose enthusiasm and experience will inform the work I do for both THT and the Bloomsbury Patients Network. I look forward to sharing many of these solutions and tools with you as we work together to have and ensure the best care and support that can be provided to people with HIV, by people with HIV. It was my peers at the conference that informed me most, and I am committed to doing the same with you all, so that we have the best way forwards in addressing all the tough issues we face here in the UK.
I hope you’ve found the updates useful and interesting. Sorry if I’ve gone on a bit, but I wanted to ensure that you got more than just a headline out of the sessions I attended.
All the best