HIV: witnessing the realisation of raw human rights

Fear of HIV disclosure and subsequent violent reactions are experienced globally. We know that rights-based approaches can create resilience and hope. So where is the political courage and will to make them happen?

Alice Welbourn
9 December 2014

As we end 2014, I reflect on three basic Rs in the context of HIV: namely resources, rights and resilience. UNAIDS has just published its 2014 World AIDS Day report, entitled “Fast Track: Ending the AIDS Epidemic by 2030”. AIDS-Free World Co-Director, Stephen Lewis, points out that it can be hard work keeping up with UNAIDS’ ever more ambitious targets. UNAIDS’ mathematical modelling proposes “959595”: that by 2030 there should be 95% of the world tested for HIV, 95% of those who test positive put on antiretroviral therapy (ARVs) and 95% of these with an undetectable viral load (which means we cannot pass HIV to anyone else).  Lewis views such “preoccupation with statistical data” with some scepticism. Given last week’s report of low UK medication adherence levels amongst people with various conditions, many would argue that UNAIDS’ targets are overly ambitious. But that aside, what really struck me most in the report was:

“Community services will become a larger part of the AIDS response and UNAIDS estimates that resources for community mobilization will increase from 1% of global resource needs in 2014 (US$ 216 million) to 3.6% in 2020 and 4% in 2030. This includes antiretroviral therapy and HIV testing and counselling. Community system strengthening aims to bolster the role of key populations, communities and community-based organizations in the design, delivery, monitoring and evaluation of services, activities and programmes.”

I had to read that paragraph several times because I am naively incredulous - that after all our years of campaigning for community involvement - such a small percentage of the AIDS funding pot is spent on community initiatives, including testing, counselling and ARV provision – most of which take place in health centres anyway, not in communities. By my maths, with 35 million of us in the world with HIV, that is currently an average of $6.17 spent on each of us in terms of community resources. And the plan is to quadruple that by 2030 to 4% at $24.69.  So where will the other 96% of AIDS funding still go?

No wonder civil society is feeling extremely ill-resourced.

I am not alone in continuing to emphasise the importance of community-led initiatives. At a meeting hosted by Paediatric AIDS Treatment for Africa (PATA) last week, 160 health professionals highlighted the huge need for non-clinical, community education issues, such as parent to child disclosure and ARV adherence amongst adolescents.  As I reported in July, the group dying from AIDS at 50% increase globally is 10-19 year olds. If paediatric health staff themselves see how lack of community initiatives is hampering their work to support this group, why is there still such a miniscule resource allocation to community initiatives at global strategy level?

I am just home from one especially resource-poor setting, Dar es Salaam, Tanzania. The largest city in E Africa, 75% of its 4.5 million population has no water or electricity. I was working with PASADA, supporting Dominique Chadwick train some of clients to make their own films about their lives. Founded in 1989, its dedicated staff now supports 108,000 clients in Dar, most of them extremely poor. Half of those who have tested for HIV in Dar were tested by PASADA. Those who need to be on anti-retroviral (ARV) treatment have to come every month because of drug shortages. This costs clients (and staff) extra time - and money in terms of transport, childcare costs and lost potential income time. By contrast, I get 6 months supplies of ARVs, delivered to my rural door in Britain by Royal Mail, an immeasurably easier experience.

The participants whom Dominique is training are all caregivers of children affected by AIDS. Mostly they are grandparents or aunts and uncles. There are far more women than men. Occasionally they are older siblings. Several caregivers and children also have HIV. I met them first last year when observing a two week pilot workshop of “Stepping Stones with Children”, an adaptation, led by Gill Gordon, of the original long-running Stepping Stones programme which has been recognised to reduce intimate partner violence in many communities from the Gambia to Fiji, South Africa to Uganda, and beyond to child marriage in communities in India. The pilot of this adaptation last year produced positive preliminary results, confirmed by the stories of the film-training participants, one year on.

Why “Stepping Stones with Children”? As Simon Yohana, Executive Director and Nelson Chiziza, Stepping Stones Programme Coordinator of PASADA explain, children are especially wise beyond their years in the face of adversity. They grow extremely sensitive antennae, knowing there is some family secret but that they can’t voice it. Meanwhile adults fear that disclosing their own or the child’s HIV status to him or her will shock the child and that they will not keep the secret, thereby stigmatising them all.  Adults also find it extremely hard to talk about their own or others’ sexuality. So since children have heard everywhere that AIDS is about sex, adults fear all the more to discuss or disclose the existence of HIV in the family. Thus many children have been tested and are being given ARVs while told that they have anaemia or something else. If children find out what they really have from sources other than their carers, they can feel anger that they have been lied to, or guilt that they are alive whilst their parents or siblings are dead. Or they can blame themselves for their parents’ deaths. Meanwhile their bereft and overwhelmed carers can project their desperation onto the children and, when they are inevitably naughty, children are told: “if you don’t behave, you will grow up like your mother or father!” This is of course a fiercely unjust statement, both for the child who needs to remember its parent with love and whose behaviour is largely caused by anxiety and stress; and for the parent who had no intention whatsoever of passing HIV to its child. Yet the desperate caregiver, often with many small mouths to feed, feels overwhelmed by the situation and resorts to anger and violence against the child.  All this can have huge knock-on consequences as children enter adolescence, often resulting in high levels of risk-taking and abandonment of ARVs. You can hear how this resonates entirely with PATA concerns above.

The Stepping Stones with Children programme opens up communication and trust between the generations and builds a new-found resilience amongst children and caregivers alike. These new skills enable them to overcome these challenges.

Our film-training was a five day intensive multi-tasking emotional leap into personal storytelling, scene-setting, filming using flip cameras, directing, sound control, clapper boarding, acting and finally editing, to produce a finished product which gets shown back to the community just before Christmas.  The training is now continuing with the 9-14 year olds and next week with the 5-8 year olds. Altogether about five films are planned – two each for the older age groups and one for the 5-8s.

The two films made by the adult clients reveal deep personal changes for them all. Both stories are composite, rooted deeply in their real lives. In the first, a couple are anxious about whether or not to disclose to their nephew, John, who is taking ARVs and suspects that he has HIV but no-one has told him this. The boy’s older friend, Alex, who knows that he has HIV himself, can see that John suspects something. So then Alex shares his worries about John with his own carers. He says he wants John to be happy like him and know about his own HIV status too. Alex asks his grandparents if they might make use of what they learnt in the training and offer support to John’s aunt and uncle, who are their neighbours. Alex’s grandparents think this is a great idea and agree.

Alex’s grandparents then visit John’s guardians to say that, whilst of course it is their decision, there are advantages in their having the courage to tell him. When they do, he is of course first shocked but they comfort him and are able to explain how well he is, how good he is at remembering to take his medication and how he will be able to grow up and live a long life and have his own children, HIV-free. In the final scene John now plays happily with his friends.

The second film is about a man who felt suicidal and very angry with his wife for "giving" him and their children HIV. Yet thankfully through the training they received last year, he has moved on to a new space, from anger, blame and gender-based violence to understanding that this violence inside him is based on fear, anger and need and that he can also create a space inside him to develop acceptance and hope. So his whole family is now much safer than previously - his young daughter and son have chances of better safer futures, his wife and himself also. And his children are more likely to be able to have HIV-free children themselves. ( Links to the films and related materials will be added to this article once they are finalised.)

No doubt there will be many more pitfalls along the way for the actors in both stories, but they all now have skills of more self-reliance and resilience to know how to deal with difficult situations than they did prior to the training.

I witnessed here this week the realisation of raw human rights, especially of children, in these dramas. I have heard these concerns about disclosure and of violent reactions to HIV voiced repeatedly in many communities around the world. Yet it is very rare to hear their resolution. This is why the proposed increase of community funding to a mere 4% is breathtakingly inadequate.

We know how to turn these tragedies into rights-based stories of resilience and hope. What we continue to lack is the consistent flow of sustained and substantive resources to enable these transformations to happen and continue happening. We don’t pretend that one simple training will turn people’s lives around forever. It took 60 years to get seatbelts accepted or smoking in public places banned in England. Change takes time, sustained political will - and long-term funding. Yet realising human rights isn’t rocket science. What can happen here can happen anywhere - in England too. With resources, rights-based community initiatives can grow and flourish and from these can stem true, lasting resilience. What we need is the political courage and will to make these three basic Rs happen – to sustain them for the sake of future generations - and for us all. And then - just then - “959595” might begin to be a possibility.

Read more articles in openDemocracy 50.50's series on AIDS, Gender and Human Rights, and in 16 Days: Activism Against Gender-Based Violence 2014



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