Two days with 270 people from 78 countries all with one thing in common; each one of us is HIV+.
I am guilty. I am incredibly privileged.
I was aware of how privileged I am; living where I live, the access to treatment and care that I have, being white, being educated, being cisgender, being heterosexual, the list goes on and on.. LIVING2016 amplified each and every one of these. I am often quoted as saying that I am thriving, not surviving, with HIV, but I am wholly aware that this is not the case for many. For many at LIVING2016 surviving is key. I had my eyes opened.
Without therefore being flippant, I did find the regular assumption throughout the whole trip, that I was a doctor or medic in some way became rather grating; often those who know full well that the virus doesn’t discriminate, were doing so. There were a handful of ‘us’ present, the minority that I sit within – heterosexual white women, and we’d all been questioned or had assumptions made as to why we were there. ‘We’ simply don’t fit into the key populations or the high risk groups.
One high risk group that it was great to hear from, although not enough was heard in my opinion, was the transgender community. Bearing in mind that the transgender community are massively disproportionally affected by HIV; 49x higher than the general population, and as a group they are routinely ignored, removed from data, statistics, research and pilots. The numbers are still growing too fast, the services are still being too restricted, the violence is increasing and the action is reducing. Here it was clear – it is the grassroots organisations fighting the fight, championing the needs and wants of their community, frustratingly shouting upwards so needing to be heard.
I also listened to an ‘international’ sex worker whose parting comment summed up the content of her talk – not one of us can judge or stigmatise those who choose sex work…
‘Every one of us in this room is a sex worker; either pre-paid, pays as you go or on contract’
Then came Jessica Whitbread! Oh my she’s awesome! I’d heard about her before the conference as she hosts ‘No Pants No Problem‘. Jessica got us talking about sex, sexual pleasure and sex positivity – starting us all off with the question – When did you last attend a conference for people living with HIV, and felt sexy? The standard rhetoric when discussing sex for positive people is focused on reducing transmission, the clinical data and tends to perpetuate the ‘fear’ and stigma, keeping ‘other people safe’.
It was great to hear the stories of relationships, serodiscordant (such as mine – one negative, one positive) or otherwise, the great sex and the sexual pleasure we’re all rightfully embracing! There was little talk of the PARTNER study, which surprised me. I am painfully aware that the study assumes access to consistent treatment and having achieved a sustained undetectable viral load. Dang my privilege klaxon. The 6 year study’s findings were published just before the conference and showed no linked HIV transmissions in PARTNER study after couples had sex 58,000 times without condoms! I feel that the study’s results are massive turning point in the conversations, narrative and shifting the rhetoric. The results give weight and data to disrupt the messages in the ‘marketing of HIV’ in the sex and relationships, and awareness arenas. Read more about PARTNER Study here.
“LIVING2016 was the greatest experience for me. I met amazing people from different countries and backgrounds who are living positively with HIV. It truly touched me to be in a room full of people, feeling safe and supported to talk about my life with HIV.” It is just one of the many reactions we received from grateful participants of LIVING 2016, the Positive Leadership Summit which took place on 16 and 17 July in Durban, South Africa.
270 people living with HIV from 78 countries contributed to the success of LIVING 2016. The Summit amplified many of the hopes and concerns discussed during AIDS2016, the 21st International AIDS Conference held in Durban, South Africa. Treatment, Rights and Resources were the three main themes of the Summit.
“Discussions and exchanges during the Summit were of the highest quality. I recall thinking that with our combined experiences we can really end the epidemic, “ says Prudence Mabele, National co-chair of the LIVING Summit.
At the Positive Leadership Summit important discussions were held around criminalisation, self-stigma, research tools driven by people living with HIV and the linkages between HIV and sexual and reproductive health and rights services. Perhaps the most burning questions were around how to approach universal treatment in a time of reduced funding and how can networks of people living with HIV can contribute the most.
Crisis or Opportunity
Globally, we are targeting the end of the epidemic, but we do so in a setting of scarce resources. Networks of people living with HIV are struggling to be funded and our programming is suffering.
The movement of people living with HIV needs to join forces along a common and ambitious vision and purpose. We need solidarity amongst ourselves, and we need to be inclusive of all key populations. We can turn crisis into opportunity by defining and reiterating a collective strategy that clearly articulates what people living with HIV can do. We have to claim our role in supporting treatment literacy, access, and adherence.
Ending AIDS by 2030 costs money. With international funding agencies focusing on the poorest countries, more and more countries will need to finance the treatment of their own citizens. While the prices of first line treatment have gone down significantly, second and third line treatment are often still high.
The changing funding streams also means we need to refocus our advocacy efforts. Networks of people with HIV are well positioned to monitor domestic HIV investments, including signaling where it goes well and where it does not. For example for sustainable domestic financing to work, legal environments must be conducive especially in countries where key populations are criminalised and governments do not provide quality services for key populations.
HIV treatment literacy
With the increased focus on treatment, challenges regarding treatment access and literacy are coming to the forefront. Aiming for HIV testing and treatment for all carries a risk of rights violations when it becomes obligatory. It also means safe and cheap ways of checking for viral load, CD4 count, resistance and side effects have to become universally available so treatment can be tailored to the person.
These challenges are some of the central issues of LIVING 2016. There is no place for complacency and failing to end AIDS is not acceptable. People with HIV need to claim this target and their central role in making the HIV response successful. The visions and experiences of the leaders who joined the Summit will form the basis for a global strategy to make that happen. Please stay tuned for the LIVING 2016 report and the next steps!’ Read more here.