Earlier this year I applied for, and was honoured to accept, a full scholarship to enable me to attend the International AIDS Society’s biannual 21st international AIDS Conference, hosted by South Africa in Durban. With flights, hotel and per diem allowance provided I grabbed the opportunity. The BF also grabbed the opportunity to join me there and we got booked onto the same flight! Turns out he makes a great PA – thanks SP!
Before we left I’d poured over the conference schedule and become quite overwhelmed with the breath of content, sessions, events and talks I could attend. The handy mobile app helped me star and prioritise the sessions that I really wanted to be at – at several time slots there were 3 or 4 concurrent sessions so I had to prioritise and choose carefully where to spend my time. The venue was HUGE – equivalent to the whole of NEC I would guess with 3 main areas; the main conference halls, the exhibition hall (mainly pharma) and then the Global Village, bursting with grassroots organisations from all around the world showcasing their responses to HIV in their communities. Interestingly to note – the general public can visit the exhibition hall and the Global Village – you do not need a delegate pass to access these! This was news to us upon our arrival and meant that the BF could see and access so much more from the conference than we ever imagined. There were many many sessions and workshops every day in the Global Village, all available to the general public. So anyone wanting to attend AIDS2018 in Amsterdam – do it – the general public can access loads of the conference!
I felt distinctly different ‘vibes’ from the three areas of the conference; the main conference rooms were clinical, straight laced and had an ‘ivory tower’ feel often devoid of actual positive people on their panels, the exhibition had the £££ of the pharmaceuticals and their swish exhibition stands and collateral to boot, juxtaposed with the Global Village, with their passion, their stories and their shoestring musings to convey on a global platform their amazing work and needs.
I’ve pick out a handful of my musings from a selection of the sessions I went to in both the main venue and the Global Village. I’ve notes from so many more to still formulate into something more cohesive.
Personally one of the greatest outcomes from the conference was the people that I’ve met. Many advocates and activists that I’ve followed on social media for many years became real people to embrace, and I met their friends, their colleagues, their projects and their stories. It was refreshing to attend a conference and not to be sold to! Attendee wanted to genuinely engage with each other, exhibitors wanted to share, storytelling was rife and so very powerful.
I am worried though. I kept coming back to the clear lack of mental health support available to my fellow peers, activists and advocates. No one was talking about the pressure, the anger or the wellbeing of the activists and advocates, the toll that can take on people, in their individual communities or throughout the conference as a whole. Self care was wholly lacking. This concerns me. I’ve seen in many a time here in the UK, it needs talking about. It needs addressing.
On our last night in Durban I was invited to have dinner with Mark King, the very gent whose ‘Top 16 Advocates to Watch in 2016‘ list I’m sure, in no small measure accounted for the scholarship I was given to attend the conference. Around the table of guests, there were amazing women from USA, Mexico and Nigeria all individually achieving masses in their communities, regionally, nationally and globally – all equally enthused and exhausted from a full on week on the conference circuit! The conversations were abundant and enlightening and it really was the most perfect evening to end the week on and I can’t wait to see many of those faces again in Amsterdam 2018!
Read more from my time at AIDS2016 here:
Entering the Global Village you were greeted by sounds, sights and colour truly reflecting the ‘Global’ in the entrance sign! First thing I spotted was the row of mannequins, each wearing the most amazing dresses in rues of reds. As you get closer you realise – each is created from condoms.
Adriana Bertini is an artist living in Brazil who takes old or faulty condoms and uses them to create art. She goes into schools, gets the young people used to handling and talking about condoms, whilst smashing the shame around carrying them, all while together creating amazing works of art!
The dresses provoked much conversation and I was thrilled to catch the fashion show of the dresses on the last day of the conference as the final session on the Global Village mainstage.
‘Adriana Bertini, an artist living in São Paulo, Brazil, transforms expired or defective condoms into raw material to be used to make pieces of art. These frames, sculptures, and brightly coloured women’s dresses are intended to raise awareness and inspire reflection about condom use. On another level, Bertini hopes that, by using the very material at the centre of effort to prevent HIV/AIDS to create something new, she can inspire reflection, foster discussion, and challenge taboos.’ Read more on Facebook.
Read more from my time at AIDS2016 here:
The Red Ribbon Awards held a ‘Special Session’ to congratulate the 2016 Red Ribbon award winners and to celebrate the vital work being done by these grass level community based groups.
Speakers at this one-hour Special Session were:
- HRH Princess Mabel van Oranje of the Netherlands
- HRH Princess Tessy of Luxembourg
- Former President of the Republic of Fiji, H.E. Epeli Nailatikau,
- UNAIDS Deputy Executive Director, Jan Beagle,
- Minister of Health and Child Welfare of Zimbabwe, David Parirenyatwa
- Moderator: Mary Ann Torres, Executive Director, ICASO
I jotted down some quotes from the speakers:
‘HIV is a development issue, a rights issue and a respect issue. These awards honour those innovators tackling the global epidemic one community at a time.’ Jan Beagle
‘No person should be infected by a virus that can be prevented.. We must leave no one behind. We must care for each other.’ H.E. Epeli Nailatikau
‘Women and girls are carrying the burden of care globally. Grassroots organisations are making the difference for this group.’ HRH Princess Tessy
‘Governments worldwide now know they can not function without the work of grassroots. We underestimate what they do. We need to return and revisit what you are all doing. Truly value it and get funs to enable progress.’ David Parirenyatwa
‘If we don’t prevent, we will not win this war. If you office is flooded, the first thing you do is close the tap, not scoop the water.’ David Parirenyatwa
HRH Princess Mabel van Oranje of the Netherlands made two points in her speech:
- There will be no end to the epidemic without grassroots. She spoke of grassroots being taken for granted and that ultimately change will only happen with the work of these groups we’re acknowledging (as Red Ribbon Award winners). These groups are delivering the actual solutions and we need to put money where our mouths are – ‘it is these guys doing the work, not the UN, not the top levels who take the majority of the cash.’
- We must prioritise girls and women. The numbers are shocking. Princess Mabel spoke at numerous other sessions championing the need for prioritising girls and women.
Read more from my time at AIDS2016 here:
Conference delegates had the option to sign up for one ‘engagement tour’ – there were so many projects and clinics I wanted to visit, but chose to visit the Blue Roof Wellness Centre. The AIDS2016 website pitched it as follows:
‘The Blue Roof Wellness Centre was designed and built by Keep a Child Alive (KCA), an organization founded in 2003 by AIDS activist Leigh Blake and 15-time Grammy Award-winner Alicia Keys, as an emergency push to get life-saving HIV medication to children needlessly dying of AIDS in Africa.
The centre currently provides comprehensive HIV services to 2,319 adults, adolescents, and children living with HIV. It offers a variety of services, including: HIV counselling and testing (HCT), HIV care and antiretroviral therapy (ART), psychosocial and adherence support (including specialised psychosocial support for children and their caregivers, as well as a youth support group), nutritional support such as hot, nutritious meals, tuberculosis (TB) screening, cervical cancer screening, and linkages to substance abuse counselling.
With the new Zoe-life management and input the center is moving towards a vision of a child- and adolescent-focused wellness center. It has been introducing new elements, events, services, and activities to draw children and youth into the Blue Roof, where they not only receive a wide range of services, but where some of the critical drivers of the HIV epidemic can be addressed in their lives, within a safe environment which is equipped to best meet their holistic needs.’
We were driven out to the centre by minibus through areas of massive disparity; whizzing past the plush Audi & VW salesrooms, through the docks and factory areas before arriving in the Wentworth Township neighbourhood. The clinic is like fort knox, tucked away in a corner, in a secured compound with no view in whatsoever from the outside. In stark contrast to the exterior, once the electric gates slammed behind us, we were welcomed into what felt like a family home. We weren’t allowed to take any photos, to respect the privacy of everyone there. The photos above I’ve sourced online.
The centre is vast, full of light, so spacious and welcoming. There are treatment rooms, rooms for blood work, counselling rooms, pharmacy, huge drug stores, a canteen, classrooms, nursery rooms, the list goes on.
At the time we visited there were very few patients (mid morning), most opt to get in early, are seen very quickly, collect their medications and then they’re off to continue their days. The clinic sees around 100 patients per day, 5 days a week. We were told of the epic journeys many of their patients go through to attend the clinic far away from there home areas to avoid being seen at a ‘HIV clinic’.
The clinic have a huge battle on their hands to tackle stigma – for so long they have been solely known as a HIV clinic. They are now trying to build a reputation beyond HIV, to encourage all into the centre and to be a community hub. It was interesting to hear of their outreach work where they’d go to local factories, refineries and paper mills; offering blood pressure checks, diabetes checks, oh and while you’re at it, lets test you for HIV 😉
It was a reoccurring conversation through the conference, and one the clinic can testify to, that ‘Sugar daddies’ and ‘Blessers’ are having a devastating impact on their community and patient numbers. These men aren’t being tested or accessing treatment, but the young girls are falling pregnant and then, as its a legal requirement in pregnancy, being tested. In South Africa, sex has become a commodity for trade between the poor and the richer; the price being paid that every week around 2000 women aged 15 to 24 are infected with HIV. Read more about the ‘Blessers’ here in The Guardian
It was also personally poignant to hear of the sex education or sexual health conversations that the youth in South Africa are party to, or not as the case often seemed to be. I saw condoms freely available in many places in South Africa; from toilets in the petrol station to the toilets in the shopping mall, however speaking with the team at Blue Roof, many youths in South Africa simply don’t know how to use them, won’t access them or aren’t able to use them in their sexual encounters. After all, protection takes two, and sadly assumes mutual consent.
Sex and Relationships Education (SRE) does meet with resistance within many schools in South Africa, and it is often grassroots community organisations addressing those conversations with young people instead. I read with interest the paper by Leigh Adams Tucker, Gavin George, Candice Reardon and Saadhna Panday from Health Economics and HIV and AIDS Research Division, University of KwaZulu-Natal, Durban, South Africa and UNICEF, Pretoria, South Africa on ‘Sexuality Education in South African Schools: The challenge for civil society organisations.’
The paper looked and spoke with 14-18 year olds in 16 different settings and witnessed great collaborations between schools and ‘civil society organisations’, whilst identifying the need for a whole school approach, exactly as we advocate daily at Think2Speak, with effective monitoring and evaluation of any services involved. Read the paper here: Sexuality education in South African schools: The challenge for civil society organisations
Blue Roof themselves visit local schools and educational setting speaking with Grade 7 (age 12) upwards, factories and workplaces trying to instigate frank and open dialogue with all about wellbeing, health and sexual health. These engagement programmes do however hinge on people being in education or at work though; neither of which the majority are in South Africa. Trying to access those not in education or work is ‘harder’, in their words but crucial to tackle the epidemic.
We were shown a recent film that had been made in an outreach collaboration between the clinic, Lalela, a non profit arts group from Cape Town, and youths from around the Blue Roof neighbourhood. The 5 day programme, run as an open house, started on the Monday with 10 young people, by the Friday they had over 100! The aim of getting young people into, and familiar, with the centre, regardless of their status, was smashed and the resulting film footage we watched that the young people had produced was really fantastic to see. It was also 100 more young people aware of where they could go to for sexual health advice, contraception, testing, treatment and the wealth of other services the centre could provide for them.
On the tour we were shown the huge spaces where they store the antiretroviral (ARV) medications used to treat their patients, and met the pharmacist who daily hands over around 100 scripts. The drugs themselves are provided ‘free of charge’ by the government to clinics such as Blue Roof, however none of the ‘wrap around’ care that they provide is funded by the government; from the counsellor who sits with you to discuss taking a test, to the nurse who draws your blood, to the equipment to test you, the chair you’re sat on, to the transport lorry that needs to collect the medications from a central distribution point to get them to the centre. There were shelves and shelves of AZT..
When someone accesses HIV testing at Blue Roof and is diagnosed HIV positive, they have their CD4 measured. At counts of 500 and below treatment is started. Viral load is checked after six months on treatment. After one year, CD4 counts and viral load are checked again. Post the first year anniversary of starting treatment the CD4 count is not checked again. The clinic desperately need safe and cheap ways to check not only the viral load and CD4 counts, but for resistance and side effects. Treatment options can not be tailored to the patient when resources are so restricted.
Currently the clinic treats at CD4 counts of 500 and below – the government’s plan is to implement, from September 2016, test and treat. Test and treat implies once a positive result is received for a patient, they are offered medication immediately. The centre, although knowing the benefits of test and treat, are fearful of the practicalities. Their patient numbers will swell, yet their resources and capacity are already stretched and funding is in decline.
The centre was built and launched on generous swatches of grants and funding, but must now become a sustainable model, as these come to an end. A price list graced the walls with a sliding scale of fees to see the nurses; if you’re under 16, a grandmother or unemployed there is no charge and if you’re employed you must show your payslips.
Chatting with a tour guide on a separate trip, she explained to us how ‘cash in hand’ work was a big issue, in her opinion, in South Africa. There are income caps, below which you qualify for free housing, and as such many employers choose to pay below that level ‘officially’ and then top up salaries in cash.
One of the highlights of the visit was meeting Gerrard, the centre’s chef. He’s one of those characters who everyone can’t help to love. He’d been a patient at the clinic, struggling with multiple AIDS defining conditions – swathed in Kaposi’s sarcoma, barely able to walk, yet volunteered there and was the first to welcome the new centre manager, Tessa when she arrived for her first day at work. Tessa bought him some trainers the next day and asked him to walk, then walk a little more the next day and to just keep on walking. He then went on to join her running club and has since run numerous marathons and even completed the gruelling 89km Comrades Ultra marathon in South Africa! Read more about Gerrard here.
We also went into one of the nursery room’s to see how they talk about HIV with the children affected. We met about 15 two year olds who regularly attend the clinic to learn about ‘germs’ and why they visit the doctor, why they take medication each day. The nurse chatted through the book they use to discuss ‘the germs’, the language they use and the various age appropriate conversations that they have, grouped by under 6, 6-9, 9-12. The clinic do not disclose to any of the children, under 12, that they are HIV positive – the programme ensure that that conversation is had between parent or carer and the child, and they guide it to happen around age 12.
On the journey to the clinic, the minibus was a hive of conversations, we were a mixed bunch from a gene therapy researcher from Australia, a public health student from USA to 3 nurses from different European countries. We all climbed back aboard the minibus in silence. We all had so much to process, think about, swathed with appreciation for the health care settings we each have access to.
Read more from my time at AIDS2016 here:
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.