1st of December, World AIDS Day, is often a difficult time for me. Recalling friends lost, and a good part of my life spent trying to make our lives, as people living with HIV better, I often feel we are not getting very far. This is in sharp contrast with the general tone, that in the past few years, has become increasingly self-congratulatory, as there is so much talk of the end of AIDS in sight.
However for many of us who work supporting people with HIV, what has been in sight in past few years has been the destitution, and abject poverty so many people we support are facing. Working at Positively UK, day in and day out we see so many more homeless people, people with no recourse to public funds, people who struggle to access basic public benefits. While, once in our team we used to spend time talking about the best way of managing our health, relationships, telling a partner about HIV, nowadays a lot of our work is about getting people food parcels from the Food Chain (who has recently had to reduce a lot of the essential support it provides to people living with HIV because of shrinking support from funders). We spend a lot of time and energy also referring people to local food banks, or ensuring they get the benefits they are entitled to.
A few weeks ago one of my colleagues spent the whole day calling shelters and temporary accommodations trying to find a place for a homeless men with HIV, who had fought in the Iraq war and was suffering from Post-Traumatic Stress Disorder, and other serious mental health problems. She couldn’t find anywhere. I do not know who was more desperate, him leaving again to spend another freezing night in the street, totally hopeless, or my colleague, feeling that she had left such a vulnerable person down, even if she had tried everything she could.
Last week as part of World AIDS Day events I attended a conference on the prevention of HIV vertical transmission, organised by the British HIV Association.(BHIVA). A good part of the event celebrated the great successes achieved in the UK, where thanks to access to treatment, care and support , HIV transmission during pregnancy has almost disappeared. Many of the presentations also highlighted the incredible socio-economic challenges women living with HIV face in one of the world’s richest country.
Doctor Shema Tariq, a physician and researcher that works very closely with women living with HIV to address the gender gap in research and improving our care, highlighted one of the most terrible shortcomings in the care of mothers living with HIV: the lack of statutory access to bottle feed and sterilising equipment to all women living with HIV, and especially those on a low income. This is a hot issue, as women living with HIV are recommended by BHIVA not to breastfeed, even when they have an undetectable viral load, as there is a very small possibility to pass HIV to the baby. Indeed it is a disgrace that this is not available, especially to the large number of women living with HIV on a very low income, or with no access to public funds. I must say that hospitals go out of their way to link up with charities, or fund their own supply of bottle milk. At Positively UK we have stored emergency milk and equipment to provide to women in need. However, this should be a right for any mother with HIV, no something else to feel stressed about. Many mothers with HIV are already under a lot of pressure about breastfeeding. They may have to lie to family members on why they are not breastfeeding, in order not to let them know they have HIV. On top of this there is the guilt of not being a good mother as all the messaging for the mothers without HIV is ‘Breast is best’. Moreover many women really miss the bonding of breast feeding. Within this difficult context the least we could do to ensure a positive motherhood, and don’t push women into post-natal depression, is to provide easy accessible free milk to all mothers with HIV.
However, I think we need to go beyond this. Once again the outcry is not really about the mother’s health. It is about protecting the baby, and avoiding HIV transmission. What makes me furious, not just angry, is that nobody talks about the fact that many mothers with HIV who live in poverty may not have had enough to eat during pregnancy, and very possibly they will not have an appropriate diet, while the baby is drinking the bottle milk. Once the bottle milk provision is not necessary anymore, nobody asks how the child and mother will eat. We also must remember that poverty happens in the context of high levels of Gender Based Violence for women living with HIV, and creates an ulterior barrier to escaping abusive and dangerous relationships. If we want to look after the health of children born from women living with HIV, we need to look after the health and well-being of the mothers first, making sure that they are safe, well fed, and live with dignity.
It is so hurtful to think that destitution, vulnerability and often violence, in 2016, in Europe, is the reality of so many -and not just people with HIV. It saddens me and makes me angry beyond words that in the UK, a country that seems ready to find the resources to go again into another unnecessary war, cannot commit to support and enable the most vulnerable of us. World AIDS Day is a sad day for me.