Dorothy takes three days to walk to and from the hospital that stocks the medication she needs to stay alive. Carrying food and blankets to see her through the unwelcome trip, the elderly Zambian woman takes days to recover when she returns home, nursing legs swollen from tramping through the bush.
Like Dorothy, Margaret goes on a-three, four-day journey to get her pills. The journey takes one day when she asks her son to take her on his bicycle. But then he misses a day of school.
Emery’s brother sometimes takes her on a bicycle to collect her medication but that’s an expensive choice: it can cost their grandmother one or two chickens to rent the bicycle.
Bridget walks for four hours to reach the hospital and sometimes she waits for three hours in the queue with other patients. Sometimes she arrives too late to have necessary blood tests taken, so she needs to return the following day.
Eunice (pictured above) cannot walk properly because she suffers the after-effects of a stroke. So she takes transport, with a dizzying number of connections, and the journey takes her all day anyway.
Sonia is a young orphan who is looked after by her grandmother. When no transport is available, Sonia cannot go to pick up her medication, so she stays without, a dangerous option because not adhering faithfully to her treatment might jeopardize its success.
Sonia, Dorothy, Margaret, Bridget, Eunice and Emery share a few things in common: all come from the Jesuit parish of Chikuni in southern Zambia, all are living with HIV and all take antiretroviral medication (ARVs) to keep the virus at bay.
The women and girls come from villages scattered over a sprawling rural area – Chikuni Parish serves 180 villages – and find it very difficult to travel to the centralized health facility in Chikuni to pick up their drugs. They take an inordinately long time to reach the Chikuni Mission Hospital and the trips take a taxing toll on their health, their work or studies and their pocket.
Their appeal is a simple one: bring ARVs closer to home. “Now I am very hot when I walk so much, I can’t manage,” says Dorothy ruefully. “If the place to get the drugs is near, it can be easy for me, and I will rejoice if something like that could happen.”
The Chikuni patients shared their experiences in research undertaken by the African Jesuit AIDS Network (AJAN) in several African countries about real access to treatment of people living with HIV. We have seen how the inconveniences and expenses involved in picking up ARVs are a problem that afflicts the delivery of HIV care across sub-Saharan Africa.
This is why UNAIDS, NGOs delivering HIV care and all the latest studies are proclaiming that community service delivery is the way to go. In its 2014 report, UNAIDS estimates that 95% of HIV services are still based in the traditional big facilities and says that “much greater emphasis” is needed on increasing community-based delivery to at least 30% of the total of services offered.
Fr Kelly Michelo SJ, director of the home-based care project of Chikuni Parish, said: “The focus should be mainly on how the community can participate in the delivery of care.”
Dorothy and the others could not agree more. Not only is it hard to reach the hospital, people often find long queues once they get there. Dorothy recalls one time earlier this year when she spent the night near the hospital so she could join the queue early in the morning. But still she ended up waiting from 7am to 2pm – a full seven hours.
“It’s a very big problem for me,” she says. “It reminds me of the time before Zambia got independence, in 1964. We used to stand in queues in order to buy whatever we need. It is just the same to get our drugs.”
It’s not only waiting that is a problem, it’s taking the morning dose on a empty stomach. “When I go to the hospital, I find a lot of people and sometimes it takes a whole day. I take my ARVs early and it is not easy for me to take them before eating anything,” says Eunice.
Due to frequent shortfalls in stocks of ARVs, patients are being asked to go to collect their supplies more often than before – for example, once every few weeks instead of months, multiplying the number of tough trips.
“Sometimes when I get there, I find that the ARVs are not enough, so they just give you for two weeks, but they are supposed to be given for three months,” says Bridget.
Considering the shortcomings in the centralized way their treatment is administered, the people living with HIV are remarkably patient. They go time after time to get their medication because they see and feel the drastic difference it has made in their lives. Now they can go to school, they can work. Before all were confined to bed; Eunice says, “I couldn’t even turn my head”.
Those we interviewed in Chikuni appreciate the fact that their ARVs are available, that medication for opportunistic infections is free of charge and that the staff at Chikuni Mission Hospital are helpful, organized and caring.
But there is no denying that the travails involved in picking up their drugs do make many people with HIV default on their treatment – with potentially fatal results. And yet evidence of community-based programs shows it is entirely possible and, in the long run, cheaper to decentralize the distribution of ARVs. Different models of community-based approaches are being implemented in many African countries – among them neighbouring Malawi, Zimbabwe, South Africa and Mozambique. They rely on task-shifting, on training community health workers and on peer support to deliver ART at community level.
For example, Médecins sans Frontières (MSF) works with local networks of people living with HIV to establish community ART distribution points. These points are managed by people living with HIV who are trained to provide ART refills, adherence support and follow-up health assessments.
It is not only the practical implications of such programs that lead to their success. It is the underlying significance too, because they switch the focus away from overburdened health facilities to the person in need. Fr Kelly put it well: “It is about the individual needing ARVs, not about the institution that is failing to deliver. We are looking at the person and asking how we can make it easier for him or her to access to ARVs.”