As we mark World AIDS Day once more, I am en route to Tanzania to work with colleagues in PASADA to support children orphaned by AIDS and their caregivers to build new relationships and resilience in the face of the catastrophe that has left them parentless. In this part of the world, where caregivers are often grandmothers, themselves living with HIV or trying to nurse their partners with HIV, caring for their grandchildren is something that they will, of course do. Yet these carers are also feeling bereft and desperate, at once both grieving for and angry with their adult children who have died on them and left them unsupported in their old age. They daren’t speak the “A” word openly, for fear that they and their children will be further stigmatised by this condition and the multiple secrets and deaths that engulf them all. They often have to take or keep the older girls out of school to help them look after their younger siblings. They have often also experienced the gender-based violence (GBV), which is both a cause and a consequence of HIV for so many women around the world, as I have often described. And yet these elderly women caregivers are some of the strongest, most resilient people on the planet and it feels an honour and a privilege to meet and work with them.
Some of the most innovative work being done comes from and touches the heart, born out of the profound wisdom of living with this virus and knowing what is needed to support others with it. My colleagues Dominique Chadwick and Nell Osborne travelled first to Malawi, to meet Annie Banda and Steven Iphani of the Coalition Of Women Living with HIV and AIDS (COWLHA) and their colleagues. They worked with COWLHA members, their husbands and children in one community, trained them in participatory film-making and then filmed their collective account of how they have worked together to overcome the gender-based violence which has, until lately, also been endemic in their communities.
COWLHA last year conducted a study of GBV amongst its members. This found that they often felt terrified that they would face GBV as soon as their partners and other family members learnt of their having HIV. The report also found that the main consequence of GBV was depression and thus women’s reluctance or inability to take their HIV medication. In many countries this fear of disclosure and its violent consequences has meant that women dump their medication in health centre latrines or enroute home, rather than daring to be found with it. Or they hide it in the bottom of flour bins, or in neighbours’ houses, which makes it hard to take regularly. So overcoming GBV is not just a nice idea – it is a crucial ingredient of enabling HIV medication to do what it is supposed to: ie to keep women healthy, happy and able to work.
Using the community-based training programme, Stepping Stones , and related materials, the COWLHA women members, all rural women living with HIV, have supported one another to build new relationships with their husbands. Instead of anger, violence, blame and shame, they have moved to a new space of trust, mutual respect, sharing of income and consensual decision-making. As great-grandmother to be, Bianca Jagger, pointed out in her powerful Longford Lecture on the global gender based violence pandemic last month, “opinions, attitudes and prejudice are learned at home. It is family that first influences a child’s view of the world.” The women in the community in Malawi describe how their children can now laugh and play and grow happily together, now that gender based violence, through their community programme, is almost a thing of the past. The girls in this community can now move around safely, without fear of sexual assault. And, as the women in the film describe, their partners are now supporting them to take their HIV medication - and are also getting tested.
In England too, inspiring work is afoot, also led by women living with HIV, supporting one another to make a difference. We have also trained women involved in the “From Pregnancy to Baby and Beyond Project” (FPBB), created and led by Angelina Namiba of Positively UK. The project has trained women living with HIV who are also mothers to make two films of their own about issues they face. It has also made a short documentary of the project. As volunteer peer mentors, they support other women with HIV, some of them newly diagnosed, as they go on their pregnancy journey. 99% of babies born to women with HIV can now be born HIV-free, through normal vaginal delivery. Again, however, women need care, respect and support to enable them to believe that HIV is no longer a death sentence and that, if they take their medication well, there is life beyond an HIV diagnosis. GBV is a big fear – and reality – for many women with HIV in the UK also. Navigating these issues during pregnancy, which is a time of heightened risk for GBV anyway, requires all the support a woman can find. As Specialist Nurse Midwife Kay Francis of the North Middlesex declares proudly, no baby has been born with HIV in her care since 1999. A proud record indeed. Her passion is shared by the other health staff in the London film: doctors Jane Anderson of Homerton Hospital and Alison Wright of the Royal Free, together with Matt Wills of Homerton who provides the social care support. They are all totally committed to high standards of care, respect, support and quality of life for all those with, or affected by HIV in their care. Working closely with the dedicated Positively UK staff and the FPBB project volunteers as they do, there is so much for other healthcare providers around Britain and across the world to learn from their example.
The plan with the film-training and documentary filming in London too is to share information about the work globally, to illustrate once more how funding for love, care, respect and support in the face of calamity can make extraordinary difference to people’s lives. One striking aspect of this filming in England is how few of the women feel safe to speak openly about their own HIV status, despite the inspiring work that they are doing, for fear of censure and rejection by British society. This is in marked contrast to the community spirit which COWLHA has achieved through its work in Malawi. Another curt reminder that labels of “developed/developing world” are curious to say the least.
On a final note, Lancet Editor, Richard Horton last month, in a commentary entitled How close are we to an AIDS-free world?, commented upon his disappointment at a colleague writing: “I object to Orwellian news-speak, where the end is not really the end.” I also find this “news-speak” around “getting to zero” hard to stomach, especially when talking to colleagues in rural parts of Africa. To be fair, Horton does acknowledge the need for us to address the “neglect…. of key populations—for example, men who have sex with men, people who inject drugs, sex workers, migrants, and prisoners. The world will never reach low endemicity, let alone become AIDS-free, unless we do more to take these key populations seriously.” The multiple challenges facing these key populations, including criminalization, marginalization and lack of access to medication, do indeed need addressing, and urgently. Yet Horton concludes by still promoting research on vaccines and a cure to HIV as the bright way forward, as if we can still somehow medicate our way out of this pandemic. Sadly, vaccines and cures still haven’t rid us of polio or TB, both of which are, again, on the rise in different parts of the world, owing to politics and poverty – conditions which breed HIV also. By contrast, the leadership of women with HIV in Tanzania, Malawi, London – and many other points of the compass – has taught me that the way out of the HIV pandemic is not through medication alone but through nurturing respect, care, dignity, support, rights, happiness – and safety – for everyone affected by HIV, everywhere. I look forward – still – to the day when these women’s rights initiatives also will be given the credit and recognition they deserve. And they too need proper funding - not just the vaccine and cure initiatives of the "Brave AIDS-free World"