Kenya “How are you doing?” Vivian asks 14-year-old Mary*. The pair sits next to each other on an old sofa in a mud house close to Butere. Mary lives here, in tropical western Kenya, with her parents and five siblings. They all have HIV. Like most people in the area, they live on subsistence farming. Mary’s parents cultivate maize and vegetables all year round; in front of the house a cow is grazing with its newborn calf. 

“I’m well,” answers Mary, “I’m feeling good. And look at my grades from last term.” Twenty-one-year-old Vivian, who herself is HIV positive and now works for DAMKA, looks at the report and makes a note of something in the open folder. 

Vivian not only records what Mary says, but also observes her physical appearance. For example, if she has a rash on her skin, it would indicate an excessive viral load. Vivian then takes the dose of medication from Mary and counts the remaining tablets. She gives a satisfied nod. “All good.”

Medication alone is not enough
This close support is important for Mary. She is precisely at the age when life gets particularly difficult for those living with HIV. There is such a stigma attached to the disease in Kenya that many children and young people wouldn’t even tell their best friend about it. The fear of social exclusion is great. But when they move to secondary school, which here is a boarding school, keeping things secret becomes very difficult. There is an increased risk that students will fail to take their medication regularly, or stop taking it altogether.

What’s more, some people only discover at this age the real reason they have had to take medication every day since childhood. They may have heard of HIV but not been aware they were infected. Their families may have tried to protect them. When they then receive an HIV diagnosis in their teens, it comes as a shock. Many struggle to accept that the illness will be with them for life. As a result of these difficult circumstances, young people with HIV are more likely to be sick, miss lessons, suffer from psychological stress and as a result lose hope of living a normal and healthy life. 

“Children and young people living with HIV need more than just access to medication,” stresses Carolyne Mabunde, director of DAMKA, SolidarMed’s local partner organisation. “Not only do they need to have access to medication, they also need to be able and want to take it,” she says. Yet services tailored to children and adolescents are lacking in rural Butere. The children and young people usually only pick up their medication from the small hospital every three months – but hospital staff can’t control what happens in the intervening period. “We can’t know whether children and young people adhere to their treatment, what their day-to-day life is like at home and in school and whether someone urgently needs psychological support,” explains Sharon Walata, a healthcare professional at Butere Hospital. 

To improve the support available to children and young people, Carolyne Mabunde set up the organisation DAMKA (Don Amolo Memorial Kids Ark) in 2012.  The name pays tribute to her brother Don Amolo, who died of AIDS a few years before. DAMKA is currently fully funded by SolidarMed and now supports more than 250 children and young people living with HIV in Butere. Besides individual home visits, like for 14-year-old Mary, the team works closely with schools and vocational training centres. Selected teachers know that certain children are sick and can call on DAMKA when problems arise. In addition, all beneficiaries of the project attend the monthly club meetings that provide various support, including information on HIV and AIDS and the chance to build relationships with other young people living with HIV.

An example for others
Twenty-one-year-old Vivian knows only too well the difference that close supervision and peer support can make. When staff at DAMKA first met her at the age of 12, she was covered in lesions and rashes. “For years, I struggled to accept that I had got HIV from my mother, but my siblings hadn’t,” she says. Trying to block it out and not take her medication made everything worse because she was constantly sick. 

By the age of 14, she was in a critical condition. The hospital in Butere contacted DAMKA which from then on monitored her closely. It was only through this support and the fact that both her parents had since died of AIDS that she finally managed to take her medication regularly. She is now studying at university and is a shining example for others. 

Through home visits, like this one with Mary, and through presentations at the monthly club meeting, she shares her experiences with others. “I don’t want children and young people to feel they have been left alone to cope with their illness,” she says. “They need to know that despite having HIV, they can still lead a normal life.” During her university holidays, Vivian therefore travels around as a peer mentor for DAMKA and tells her story to inspire other young people affected by HIV. She knows many children and young people who have learned to cope with their illness thanks to DAMKA, some of whom have become her best friends. 

Tackling poverty and prejudice
A major challenge in caring for young people living with HIV remains the widespread poverty. “We can’t tell a poor family to take their child to hospital if they can’t even afford to eat,” explains DAMKA director, Carolyne Mabunde. Families with sick children don’t invest in their children’s education out of a fear that the investment won’t pay off. But poverty and a lack of education increase prejudice against people with HIV.

Since DAMKA was set up ten years ago, there has been an ever greater focus on tackling poverty besides providing medical and psychological support for children and young people living with HIV. DAMKA helps with the cost of school uniforms and examination fees for almost all the children and young people enrolled on the programme. This ensures the children have access to education and the prospect of a bright future despite HIV. DAMKA also organises rapid transport to hospital where necessary and covers the cost of treatment so that students don’t have to miss lessons. In some cases, the organisation also enables small-scale renovations of homes and toilet facilities to rectify poor hygiene conditions, or provides families with a goat to improve its economic situation.

Since SolidarMed took over the project from the Aids & Kind foundation in 2020, DAMKA has also been able to invest in a targeted way in vocational training. This provides opportunities for young people who could not attend secondary school due to poverty and low average grades. Sixteen of the young people supported by DAMKA are currently doing a two-year apprenticeship at a vocational training centre. 

* The names have been anonymised to protect privacy.