A few minutes after bringing her son into this world, Simba Ncube’s* mother lost her life to AIDS related complications in 2010. Luckily before she died, Simba’s mother had registered her cousin sister, Ms Pride Ncube* as the next of kin and guardian to her child. On the fateful day, the hospital called Ms Ncube informing her that her sister had died and had indicated that she wanted her to raise her child.
By Michael Gwarisa in Mutare
However, a family feud ensued shortly afterwards with Simba’s maternal grandparents demanding that Ms Ncube surrenders their grandchild to them as they were the rightful guardians to their grandson. After intervention of the Zimbabwe Republic Police (ZRP) and nurses who had been told to hand over the child to Ms Ncube, the baby was given to her. The relief was however short lived.
After his mother’s burial, I was given the responsibility to look after him when he was just one week old. The nurses told me that they had already initiated him on Antiretroviral Therapy (ART) since he had been born HIV positive. However, after two months, his maternal grandparents came again and this time, they went away with him to Chimanimani.
“They did not take with them any documentation records or history to prove that Simba was on ART. I just heard they were collecting medications for him but I don’t know how they were doing it. After some time, they returned him after he had fallen sick and was showing visible signs of malnutrition,” said Ms Ncube.
When they returned him, they did not bring or send the ART collection cards over saying they would continue sending the medications from Chimanimani using public transport, something which they did religiously. However, as he grew older, Simba started having numerous questions lingering in his head. Among some of the unanswered questions in his included why he was taking medications and yet his peers at school were not doing the same? All this while, Ms Ncube had not told Simba that she was not his biological mother and that he was HIV positive and the medications he was taking were HIV medications.
“When he started grade one, Simba was registered under a Family AIDS Caring Trust (FACT) program, I would see the team from the organisation coming here regularly to check on Simba if he was taking his medications. Even though we were still receiving his medications from Chimanimani, I would at times make sure he takes the medications in my presence, I was certain that he was taking medications. However, one day he just came back from school and asked me who his biological mother. I am sure that is around the same time he began asking himself why he was taking ARV medications leading to him taking a break from his medications.”
Somehow, he got fatigued by taking the medications and would only take them in the presence of his aunt. This led to some serious health complications. In 2021, when he was about to write his examinations, he fell sick. His aunt took him to Gimboki clinic in Dangamvura where they stay and he was given some pain killers to ease the headache induced pain.
“He proceeded to school after we had passed through the clinic. However, he returned home saying his headache had gotten worse. I was then asked to take him to Mutare General Hospital where a number of tests were conducted. During the tests, I was asked if Simba was taking his ARVs, i explained to the nurse that his ARVs card was in Chimamani that’s where he collected from. There was a bit of a gridlock as the hospital insisted they needed to know his ART history. Eventually, an HIV test was done and Simba was put on ART. ”
However the sickness not go away, he got worse and after an X-Ray was done, it also emerged that he had developed Tuberculosis (TB). More tests also showed that he had meningitis and other opportunistic infections. As if that was not enough, Simba’s viral load had increased to over 100,000 copies. Before he fell sick when he was taking his medications, his Viral Load was around 20 copies per millilitre of blood. His condition worsened and got admitted in hospital. The catastrophic health costs Simba’s aunt incurred in her quest to avert Simba’s situation were unimaginable.
Even though Simba was linked and registered under the Family AIDS Caring Trust (FACT) when he was in grade one, the fact that all his ART history was hold up somewhere in Chimamani and that he had self-transferred from Chimanimani made it difficult for programmers to really track him and link him to relevant assistance in as far as his HIV situation was concerned then.
After his 2021 predicament, Simba is now a full beneficiary of the Children Tariro (CT) programme which targets Orphaned and Vulnerable Children (OVCs) and their caregivers. The initiative seeks to mitigate the impact of HIV and AIDS by providing comprehensive and sustainable continuum of services to communities contributing towards the realisation of the UNAIDS set and PEPFAR adopted 95-95-95 targets towards HIV epidemic control in Zimbabwe. Simba has been re-initiated on ART and he has recovered and returned to school. He is also currently taking TB medications following his diagnosis last year.
In an Interview with FACT Zimbabwe Health Officer, Mrs Miriam Muchadzingwa, she urged parents and guardians looking after children living HIV to be honest and disclose their status to them early to avoid accidental disclosure and discontinuat -ion of ART through fatigue.
“Looking at Simba’s issue, let me just weigh in saying as a program, we have challenges that we face during programing. As her guardian said, Simba would collect his medications from Chimanimani which is a different district from Mutare. For us to get the true picture and information regarding his ART history was a challenge. Before Simba fell sick, his Viral load was below 20 copies meaning that his viral load was almost suppressed. We would get this information from the people who were keeping his card or book in Chimanimani.
“Another challenge that we get we is the issue of care givers. Many children who are born with HIV or living with HIV do not stay at one household for a long time because they are orphans. They may be moved from one relative to another and in the process, it may be difficult to track them and link them to care. Changing of care givers is a big challenge. Care givers are not telling the kids why they are taking ARV medications. At times they just tell them that its medication for headaches or pain. With time the children will find out and might stop taking the ARVs. I urge parents to be honest and tell the children that they taking ARVs for HIV treatment,” said Mrs Muchadzingwa.
She added that failure by Simba’s guardian to reveal his status to him somehow affected adherence to ARVs and in the process led to him developing opportunistic infections. Under the current Ministry of Health and Child Care (MoHCC) Viral Load protocols, Virally Suppressed children should have their viral load tested or checked after every 12 months. This, according to Mrs Muchadzingwa to greater extent puts the young children at a disadvantage.
“I think this period is very long for the children, because a year is a very long period a lot can happen that can interfere with the viral load of children. This period for kids is long and children are not a homogeneous group, the challenges they face vary according to age. The 10 to 14 age group is very critical as it is the same period that children start processing things and asking too many questions. Before disclosing, it is however critical to consider the age of the child. At least from the age of five years, that’s where you just encourage the child to take their medications without divulging more detail. As the child grows, you then open up and teach them on adherence and why they are taking the medications.”
According to latest HIV estimates, AIDS related deaths in adolescent boys have been on an upward trend since 2016 unlike in female adolescents where AIDS induced deaths have been declining. Since the year 2016, an estimated 1,144 deaths were recorded in male adolescents while in 2017, 944, in 2018 and estimated 856 deaths were recorded, in 2019, deaths were at 795, in 2020 they were 762 and in 2021, AIDS related deaths in male adolescents were estimated at 688 which is higher that was recorded in the same in female adolescents.
*Names have been changed and image blurred to protect the identity of interviewee/s.