Intanda Bwanga

On Wednesday 16th March, Christina is due for her next appointment at Ipusukilo rural health centre. I travel with our medical team, arriving before 9 o’clock, and scan the faces of the women who are already waiting. I can’t see Christina amongst them.

On Wednesday 16th March, Christina is due for her next appointment at Ipusukilo rural health centre. I travel with our medical team, arriving before 9 o’clock, and scan the faces of the women who are already waiting. I can’t see Christina amongst them. I reason that since she lives close by, perhaps she’ll wait until she or a neighbour sees the MSF vehicle arrive in the village before setting out.

Ipusukilo rural health centre is a shadow of what it once was. This was a mission hospital, with a large in-patient capacity and probably several dozen staff. Before Luwingu District Hospital opened, I’m told in 1965, this was the referral hospital for Luwingu District’s estimated population of 139,000. Today, most of the former hospital buildings lie eerily abandoned. In some rooms, rusting bed pans or medical notes which have gathered years of dust lie strewn across the floor. The scenes here take me back to Sierra Leone and Liberia, where I have seen endless derelict buildings consumed by nature - former banks, hotels and offices no longer serving their original purpose, their open doors and broken windows instead welcoming curious wild animals and birds, not to mention a steady trickle of individuals and families seeking shelter. Zambia, unlike these countries, has not seen more than a decade of war and the associated mass displacement of its citizens, and these buildings show little evidence of human occupation. But squatters or no squatters, there’s something very depressing about a formerly bustling hospital left to decay in this way.

Today the health services on offer at Ipusukilo rural health centre only occupy half a dozen rooms of what was once a large complex. Therefore it is not difficult to find an empty room in which to hold my pre-arranged meeting with some of the local Headmen (and one Headwoman!) who have travelled from the surrounding villages. I realize when I enter the room that I was not expecting such a high attendance, there are at least 15 people waiting for me – a few of them very elderly men and many of them dressed in what looks like their Sunday best. My Bemba greeting ‘Mulishani!’ is met with appreciative laughter, meanwhile I’m pretty mortified that all of the more formal greetings that I was recently taught have escaped me at just the moment when they would be extremely fitting. One of the Headmen, a tall man called Eugene, offers to translate for me, and the meeting kicks off.

Headmen and women

Headmen and women

I planned this meeting with the intention of introducing myself as the new Field Coordinator for MSF’s Luwingu project, and explaining what MSF is doing in the district. I have been told on several occasions that local acceptance of our interventions will improve significantly if we have the support of traditional community leaders such as these, therefore I’m determined that they will leave with a favourable impression and clear understanding of what we are trying to achieve here. Through Eugene, I explain that MSF is an international medical and humanitarian organisation, working in over 70 countries worldwide to alleviate suffering of vulnerable populations affected by war, natural disaster and poor access to healthcare. I tell the gathering that MSF has worked in Zambia in different regions and capacities since 2001, but that our activities in Luwingu District only started in June 2010, and our objective for this project is to reduce maternal and neonatal illness and death through improved sexual and reproductive health services, including the prevention of mother to child transmission of HIV. I take the opportunity to emphasise that we are not in Luwingu to set up a parallel health system to that of the Zambian Ministry of Health, but to work in government structures and to integrate government staff, so that when MSF leaves Luwingu (currently planned for 2014), the same services will continue.

So far so good. What happens next is surprising even to me. When I decide to test the water and assess the Headmen’s (and woman’s) knowledge about HIV/AIDS, I have no idea how they will react – after all most of the men are old enough to be my father and our backgrounds are so dissimilar that it may be considered positively impertinent for me to raise such a delicate subject in their presence. It therefore comes as a huge relief when my questions are not met with stunned silence but with openness and curiosity and occasionally, laughter. The collective knowledge about the most common methods of HIV transmission and prevention is far better th an I expected. However I’m also aware that I’m amongst representatives of very male-dominated communities – where women have little if any say over if and when they have children, and how they manage their pregnancies and deliveries. Although the men are quick to mention condoms as an HIV prevention method, I point out that many men in Zambia believe that having sex with a condom is like ‘eating a sweet with its wrapper on’. Since I have a sweet with a wrapper on in my bag, I pop it in my mouth. Of course this prompts applause and laughter – but my question is serious: how can a woman protect herself from infection if her husband is unfaithful and he refuses to wear a condom?

INTANDA BWANGA is what Eugene writes neatly in my notebook when I ask for the Bemba way of saying HIV/AIDS, and when I ask what this means, several people in the group indicate that it means thin. This is not surprising – even before scientists in the West decided to use the name ‘human immunodeficiency virus’ to describe the illness affecting gay men in America, doctors in several African countries had already nicknamed this new disease ‘Slim’. I ask the group what would happen to a baby born to a woman with intanda bwanga, and the response is a low muttering and sad shaking of heads. The assumption seems to be that this baby cannot be helped. It’s a good feeling to be able to explain that this is not the case, that if a woman attending an antenatal consultation is found to be HIV positive then she can be enrolled on a treatment programme which, if adhered to correctly, will reduce the chances of her baby contracting HIV to less than 5%. Furthermore, there is no reason for the woman to become ‘slim’. After she successfully completes the PMTCT programme – enabling her baby to look forward to a healthy infancy and childhood – she can continue taking anti-retro viral (ARV) treatment for the rest of her life. She may even live to see her grandchildren. Since 2005, the Zambian Ministry of Health has been providing ARV treatment free-of-charge to those who need it. Although formerly MSF was providing ARV treatment to the general population in Zambia, these days we refer them to the national programme, including women such as Christina once she has weaned her hopefully HIV negative baby.

Although the meeting has now lasted over an hour, I can’t pass up the opportunity of mentioning male involvement as a crucial element in ensuring the success of our programme – whether the woman is HIV positive or not. Decisions regarding family health are usually made by men in Zambia, however it’s a rare sight indeed to see a man accompanying his wife or children to the clinic. A Zambian woman can be showered with health education – why her family should sleep under mosquito nets, why she shouldn’t carry heavy items on her head during pregnancy, the importance of delivering her baby at a health facility – but if she gets home and her husband disagrees, then nothing will change. We have had cases of HIV positive women enrolled on our programme, who have later defaulted because their husbands haven’t allowed them to return to the clinic – in some cases they have even been beaten or divorced. Jeanie says she has not yet seen a husband accompany a PMTCT mother to a consultation, and she has been in Zambia since October. The fact that these women may be attending without the support or even knowledge of their husbands will undoubtedly have far reaching consequences – they are at risk of defaulting on their treatment or dropping out of the programme altogether, and if a man doesn’t want his wife to deliver in a health facility in the presence of a skilled attendant, then she will likely deliver at home where both her own life and that of her baby will be in danger.

As a formerly aspiring actress (and since I always used to be cast as old women, who knows what will happen in the future), I enlist the help of a couple of Headmen for some role-playing. The open-minded husband who goes with his wife (I am the wife) to the clinic, has his HIV test with her, and listens to the health professionals explain what they need to do to ensure a healthy pregnancy and delivery, versus the stubborn, authoritarian husband who stays at home while his wife is at the clinic and blames her if she tests positive for HIV, while refusing to be tested himself, who confiscates the mosquito net and pills and refuses to allow her to go back again. The ease with which the role plays are acted out and understood, despite the language barrier, indicates that the second scenario is unfortunately not uncommon. As the meeting closes, I request that we meet again in one month’s time, and meanwhile ask these important community leaders to go back to their villages to talk about these issues. As I do so I wistfully imagine them gathering the male youth in the shade of a tree and telling them to use condoms, to allow their female counterparts to finish school and decide what they want to do with their lives, instead of falling pregnant while still in their teens and continuing the vicious cycle of poverty and female subordination. I snap out of my reverie and head back to look for Christina.

But she’s still not here, and it’s past 11am. The waiting room is now crowded with women and as I examine their faces one by one, dozens of dark eyes looking back at me, I wonder if maybe I have forgotten what she looks like. I double check with Jeanie and David that they haven’t seen her, and then I decide to head back to the office because I have a list as long as my arm of things I need to do. Jeanie agrees that she will call me if Christina arrives, and I try not to panic that she has defaulted already. Ipusukilo is only a 45-minute drive from our office - if Christina shows up I can come back later to meet her.

In the end, I make it about half way back to Luwingu and I get a call from Jeanie: ‘your lady’s here’. When I get back, I head straight into the counselling room and in my excitement it takes me a few moments to realise that I’m blabbering away to two women I’ve never laid eyes on before, assuming that one of them must be Christina. When I do eventually find her, I give her the hug that I wanted to give her two weeks ago – which takes her by surprise a bit, not least because hugging is not a common form of greeting in Zambia; I remember this half-way through and between the two of us we manage to transform the hug into the more socially acceptable shoulder-to-shoulder ‘press’, on both sides, which always reminds me of greetings in Ethiopia. Then I notice the little boy who is with her, peering suspiciously up at this strange white lady who is grabbing hold of his mother. He has large brown eyes, with impossibly curly eyelashes which bend back over his top eyelids; he’s wearing pink tracksuit trousers, a blue towelling t-shirt and sandals with socks. I can make out that his little green socks have a picture of a football goal on them with a ball going inside and the misspelt word ‘goooooooool!!!’. He is gorgeous, but he has the fed up face of a sick child, and in my heart I know why. This is the 3-year old son that Christina told us she was worried about. I will call him Samuel.

Before Samuel knows what is happening, his mother has run off, and he is alone with the strange white lady. Understandably, he starts crying and potters after her in a panic. They are soon back, with Christina’s mother in tow and a little girl who looks around the same age as Samuel. After some confusion, I manage to establish that the little girl is Samuel’s cousin, and that her grandmother has just taken her to the general outpatient department because she’s not feeling well. She feels a bit hot, but looks like a healthy child, particularly standing next to Samuel who has skin rashes and swollen glands.

Before proceeding to their consultation, David helps me speak to the family for a few minutes. In the two weeks since I last saw her, Christina has confided her positive status to her mother, and it’s very reassuring that she has accompanied her today. However, the mother is feeling sad. She tells me that three of her eight children have died in adulthood, and it seems that Christina is next. Christina is her fourth child, and the three who died were her first, second and third born – they were born and died in that order. When I ask her how they died, David’s translation is simple – ‘witchcraft’. I cannot hope to challenge such entrenched views, I can only try to reassure the mother – let’s call her Joyce – that Christina is not the victim of witchcraft - she has a treatable illness and can live for many years. I recently finished reading an excellent book called ’28 stories of AIDS in Africa’ by Stephanie Nolen, and I remember a Ugandan Doctor who almost died from AIDS-related complications, but who today is fighting fit and an international AIDS professional. It struck me when she said that the first reason she survived was the love and support from her family and friends, not the drugs. And this coming from a Doctor! I suppose I’m worried that Joyce sees Christina’s impending death as inevitable, and I tell her that Christina will need her love and support in order to survive. I’m put in my place when Joyce almost snaps at me – ‘this girl knows I love her very much’. This makes me feel much better.

The consultation room is crowded with Christina, Joyce, the two children, myself, Jeanie and Anthony – a new MSF Clinical Officer who Jeanie is training on-the-job. During the medical consultation, Joyce and the little girl are in a playful mood – especially when they see my camera. Their mood is in sharp juxtaposition to that of Christina, who is sitting with Samuel on her lap, looking very worried. Jeanie is carefully explaining to her, via Anthony who is translating, that her blood test from two weeks ago has shown that her CD4 count is 248 so she must start full ARV treatment – to suppress the virus in her blood to protect her own health and to prevent transmission to her unborn baby. The CD4 cell is a white blood cell that leads the body’s attack against infections, and in a healthy person there are 1,200 CD4 cells per microlitre of blood. A person is said to have AIDS when his or her CD4 count is below 200, and the recommended level to start ARV treatment is

Samuel screams ‘mummy, mummeeeeeeee’ over and over when his finger is pricked for the HIV test, and within minutes Christina’s worst fears are confirmed. Samuel is also positive. In addition to rashes and sores on his skin, Christina says that he suffers from frequent diarrhoea. He screams and cries again when his blood is taken for the CD4 count – he will undoubtedly now associate this building with having needles stuck in him and will dread coming back here. It will not be MSF who treats Samuel for HIV, he will be referred to the national programme, however we will include his CD4 count on the referral so that the next clinician knows which treatment to put him on. Samuel is also given Cotrimoxazole, which Christina must give him once per day until he is evaluated by the national programme. Before she leaves, we weigh Christina and Joyce down with nutritional supplements formulated for people living with HIV – she needs to eat three 60g bars per day.

When I discuss the Bemba expression intanda bwanga later with some of my staff, they tell me it doesn’t mean thin, it means ‘the disease that can never be cured’. Some of them react angrily, telling me that it is expressions like this that contribute to the stigma and discrimination around people living with HIV. Most of them prefer to use the English acronyms, HIV and AIDS. I think about Samuel – he can’t articulate why he doesn’t have as much energy as his siblings and classmates, why he never feels quite right. He doesn’t know that it’s intanda bwanga, HIV, AIDS or any other thing. I expect he just wants to feel healthy, play football and score a ‘gooooool’. Hopefully he’ll be able to do just that, and soon. As for his new brother or sister, due on 23rd May, Christina and MSF are working together to ensure that he or she will not have to consider such grown-up questions until much, much later in life.