On several occasions, Lydia 6, who is living with HIV, is seen moving around her neighbourhood with the tin that has her ARV drugs looking for whoever can help her open it. She on several occasions misses taking her daily drugs because she fails to get someone to open the container.
Lydia, who was diagnosed with HIV four years ago, lives with her grandfather, a resident of Paicho Sub-County in Gulu District. Agonyo’s mother abandoned her when she was two years old under the guise of going to Gulu Town to search for casual work to make ends meet.
However, four years down the road, she has not returned, leaving her daughter in the sole care of her ailing grandfather.
Her Grandfather says because Lydia would fall sick so often, he was forced to take her to a hospital where he demanded that a full blood check be carried out. He says unfortunately the results came back positive for HIV and he started her on ARVs immediately.
“At my age coupled with ailing health, I cannot do much to support the child. At times, when I go for funerals and stay there for three or five days, she misses out on the medication, which is very dangerous for her health,” he says.
“There are instances when the drugs are finished and I have no means of transport to reach the health centre. This worries me a lot because I know that this significantly affects her quality of life,” he adds.
Even more problematic is when Lydia’s drugs need to be refilled and her grandfather is unprepared to travel to the health centre because he cannot afford to hire a boda boda at Shs35,000 to reach the health facility which is 32 kilometres away from their home.
Whereas no health worker has visited their home to examine Lydia’s condition, in June and July shortage of antiretroviral drugs at the Cwero Health III, almost cost her life when she lived without medication for almost three weeks.
Lydia says she knows that she is supposed to take her medication daily. “When my grandfather is away, I make sure that I get someone who can give me the medicine,” she says adding that on several occasions she has asked her grandfather why she takes this medicine but he gives no explanation.
“Other children are not on medication like me, but I have not been give any answer by my grandfather,” she says adding that many times, her friends have shunned playing with her saying they might contract her disease.
“On several occasions my friends have stopped me from playing with them, calling me all sorts of names. When they do this, I feel like I do not belong to this world and ask myself many questions such as, ‘why me?” Lydia says.
Although she was last year enrolled for Nursery education at Orchard Nursery and Primary School, 300 metres from their home, her grandfather cannot afford the Shs50,000 school fees per term.
Florence Ayaa, a neighbour, says Lydia’s biggest hurdle has been feeding. “Most times, her grandfather cannot afford to buy food even for one meal yet this child has to eat well in order to take her medicine,” Ayaa says.
Should she be told?
Dr Stella Kyoyagala of Mbarara Regional Referral Hospital says there is no particular age at which a child should be told about their HIV status.
“At times it depends on the necessity as to why a child needs to know following several questions as to why she is the only one who takes drugs and demanding to know when she will stop,” she says.
She, however, advises that when telling the child, it should not be a one day matter. “Information should be in bits depending on how the child will respond to the news,” she adds.
According to Francis Obutu, the programme coordinator Health Alert Uganda, a local non-governmental organisation working to support follow up and linkage of children on Antiretroviral Therapy (ART) and expectant mothers on elimination of mother-to-child transmission of HIV, follow up on children on ART has now become a big challenge since their last funding ended in 2015.
“Drugs adherence, counselling and follow up of clients is very important in promoting drug intake for which health workers alone cannot help,” he says.
Follow up of HIV patients who are on ART, especially children, helps in the disclosure preparation of the children and adolescents who were started on drugs without knowing why, Obutu says.
Proper ART education to HIV clients and care takers helps in the reduction of viral load and suppression of the HIV virus, which is the goal of ART initiation.
There is need for bigger NGOs working in the region to provide funding to local organisations who are working directly with the PHAS structures in the community so as to promote meaningful involvement of people living with HIV and Aids.
HIV among children
Drug resistance. According to Ministry of Health, 50 per cent of children living with HIV/Aids, who are started on Nevirapine, a first line treatment, suffer from drug resistance.
HIV prevalence. Uganda has 950,000 children estimated to be HIV-positive, 62,900 of whom are on treatment. Of these, 3,000 are on second line and 48 on third line of treatment. Another estimated 7,000 to 8,000 children who are born with HIV have been exposed to Nevirapine.
*Her names have been withheld because she is a minor*