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 about Blue Roof here.
Read more from my time at AIDS2016 here: