“My grandmother used to beat me so that I could take the ARVs. During that period, I was so afraid of the medicines that I would fail to go home when it was time to take them. My friends never made it any better; they would abuse and laugh at me. That hurt me.”
It is Monday mid-morning, and we are sitting in Felix Clinton Owino’s simba (room) catching up on life from where his journey started. This 20-year-old boy came into the lives of CHS staff in 2016 and redefined what our work would be towards ending the HIV epidemic and improving the lives of children in Siaya County.
“I am the only child of my late parents. I can hardly remember their faces since they passed away when I was so young,” Clinton explains.
Clinton, who currently stays with his paternal grandmother, was born HIV positive. No one realised that he had the disease until he started falling sick frequently and became so pale that one could not identify him. His aunt took him to Wagai Health Centre, where he was tested and found to be HIV positive.
“When I turned 8 years old, I started going to the hospital unaccompanied to pick up my medicines. At the facility, they kept teaching me on matters related to HIV/AIDS, and the nurse warned me severally that if I failed to take my medication, I would die,” says Clinton.
At this point, Clinton started fearing stigma, and as a result, he kept running away from his friends and peers so that they would not see him going to pick up his medication from the health center. It was during this period that his fate with CHS was sealed.
“I met Clinton in 2016 at Wagai Health Centre. At that time we had started an approach of adopting a facility, so I adopted Wagai, where I would provide technical assistance and overall support. Among the things that we would do at the facility with the team was patient review. During one of those reviews, is when I met Clinton. I was seated in one of the clinical rooms, and Clinton was sitting in the waiting area,” explains Dr. Jacquin Kataka, the program director of the Shinda Tena project.
“I looked at him, a young man who was wasted, malnourished, and full of ringworms on his head, and his face looked depressed; he was a sad child. Something attracted me to this child, and I engaged him in a conversation,” adds Dr. Kataka.
Pauline Amani, the facility in charge at Akala Health Centre, was serving as a clinician at Wagai Health Centre in 2016. “When I met Clinton, he was staying with the maternal grandmother at Wagai. He was so malnourished that he would default his clinic appointments and would come on his own time. So we decided to find out why he was missing school and was malnourished.”
From the records, how Clinton ended up staying with his grandma after his father passed away, the mother became so sick and went back home to her mother’s place with Clinton. When she died, Clinton became dependent on his grandmother.
“The grandmother used to make the local beer, which served as her source of income to support herself and Clinton. We also found out that during clinic days he had no means of transport to reach the clinic, so he would walk, take a break, sleep along the road, and when he would wake up he would proceed with his journey,” explains Amani.
At barely a tender age, Clinton had been forced by circumstances to become an adult since he had no tangible support to ensure he took his medication or was accompanied to clinic appointments.
According to Clinton, when he reached age ten, he got tired of taking his medication. “Whenever I went to pick up my drugs at the health centre, I would hide from my friends. If I met them along the way, I would either hide the drugs or forfeit going to the hospital till a later time.”
He further adds, “I would throw away the medicines because they were big and sour. But at the hospital, I would lie to the doctor that I was taking my medicines as prescribed. The doctor later realised that my story was not adding up.”
“Clinton was not suppressing and had not suppressed for 2 years. His viral load was so high, in millions of copies. This was a young man who was struggling. In one of our patient review meetings, we reviewed his case and even agreed on action points,” narrates Dr. Kataka.
CHS reached out to the grandmother to empower her. During one of the home visits, we found a lot of stigma; no one wanted to be associated with Clinton. They felt that they would be exposed to HIV just by accompanying Clinton to the hospital. Our efforts went in vain, and CHS opted to empower Clinton.
According to Amani, Clinton would still miss a lot of doses in between, and his excuse would be that sometimes he got so sick that he couldn’t go to the clinic or he would feel so sick and weak that he couldn’t go to school. By then he was using a twice-a-day regimen.
“We also learnt that Clinton would barely eat anything at home. In the morning there was no breakfast, so they would only cook once, an evening meal,” says Amani.
CHS went back to empower the grandmother to give Clinton healthy meals from locally available food. Through partnerships with nutritionists, the grandmother would be given fortified flour to prepare porridge for the grandson in the morning. It worked for a while, but when the flour was depleted, it was back to routine.
Amani further adds that in collaboration with other partners supporting HIV work in the county, the grandmother would be given some money to buy food, but instead, the money was being diverted towards boosting her business.
“When the profits from the business were great, she would buy a small fish for dinner, but still it was only an evening meal. One could not cook during the day since it seemed like wasting cooking oil and flour. We then became tough on the grandmother to provide food to Clinton. She then turned to giving Clinton some fermented ugali used to make the local brew. He would become drowsy after taking it,” explains Amani.
“In our conversation, Clinton mentioned that he would often lack concentration and sleep during afternoon classes in school.” Dr. Kataka further explains that “When the teacher enquired, he told the teacher he was on ART medication. So the teacher told him that he often slept in class because of taking the medication, and yet he was not feeding well. That affected Clinton’s adherence.”
It was then agreed that to help Clinton, it was more efficient to empower an uncle who was staying in the same compound. A community-led organisation helped him start a second-hand clothing business, and he promised he would use the proceeds from the business to ensure Clinton went to school and was well-fed.
After some 3 months, CHS and facility teams re-assessed his condition and discovered that Clinton‘s viral load was still high, the pill burden at home was significant, yet the clothing business was thriving.
“One day we did an impromptu home visit and discovered that Clinton was not in school; instead, he was operating the second-hand clothing business that was supposed to empower him,” narrates Amani.
Amani further adds that “Clinton would sell the clothes, and the profits would be used by the aunty and her children. Clinton was still staying with the grandmother since the uncle and his family were afraid that they would get HIV if he stayed with him. Clinton at that time was also coughing a lot and had an opportunistic infection.”
“When my viral load was taken, I would end up with a high viral load with a million copies. I had also lost weight and had contracted TB. I was put on TB treatment, but my will to proceed with medication was low. The medics kept telling me that I would die. It is at this point that I was taken to a children’s orphanage,” narrates Clinton.
CHS, in partnership with the Children Services Department, went to court, and it was then decided that Clinton would be taken away from the family and taken to a children’s home called Ulamba.
“My stay at Ulamba was different from what I was used to. We had very specific times for taking medication, and someone would watch over you to ensure you took the medicines and ate. I also made new friends with whom we would take our medicines together,” adds Clinton.
Jacob Kangongo, a former program officer supporting the Gem sub-county, explains that after deliberations, they decided to have a case management plan for Clinton. “Since the client had recorded a high viral load for a long time, we forwarded the case to the Regional Technical Working Group Nyawest (RTWG) to deliberate on which medication would work. When we got feedback from Nyawest, we switched the regimen to what was working.”
Later on, the children’s home was closed down, and working collaboratively with the county children’s services department, he was re-settled at Sagam Children’s Home. The uncle visited often until one Sunday, when after the uncle visited, three boys eloped, Clinton being among them.
“We looked for him, and we suspected that the uncle had taken him. After a month, he came back to the hospital, sickly and malnourished, and he was taken back to the orphanage. He started recovering and was later reunited with the paternal grandmother in Alego,” explains Amani.
“I currently take charge of my medication. I ensure that I take it in good time and I eat. I decided to build this room (Simba) away from my grandmother’s house since getting a place to sleep was not easy. Here I also cook once in a while,” says Clinton.
According to Kangogo, “If CHS had delayed for long, the child would have advanced to the advanced stage of HIV. Clinton was special, and we realised he would not survive if we did not provide an intervention.”
He further adds, “It remains a challenge to identify children living with HIV and those that have not been tested. We also have total orphans who have not been tested for HIV, and this is a missed opportunity.”
According to the project director, Dr. Kataka, when the Shinda Tena project began in 2016, the county was not doing well in terms of viral suppression. “In fact, for children, we were only suppressing at about 46%, which is half the number of children since we were taking care of about 7000 children. Clinton epitomised the child who was not suppressing; most of them were orphans living with a grandparent or another relative, and most of them were lucky if they had a meal.”
Since 2021, Clinton has been under the wings of Fredrick Ochieng, a clinical officer at Wagai Health Centre.
.
“Clinton has been consistent in his clinical appointments, and he is generally doing well. Currently, he is in Form 2 and well nourished. It may seem odd that he is at form 2 level at his age, but due to the circumstances he faced liked being sick, missing school and lack of support, affected his education greatly.”
CHS is still playing a big part in Clinton’s life, and through collaboration with partners, we have ensured that Clinton remains in school and strives to achieve his academic and life goals.
“Clinton is a survivor. That boy has suffered a lot, and he saw the bad side of life when he was still young. He missed the joys of childhood out of a lack of support. I wish we could have a proper and active social service system that would respond immediately to ensure we don’t have other Clintons in the future,” adds Amani.
“There have been great strides in epidemic control in Siaya, not only for children but for the general population. There is much improvement compared to when we started. Transmission of HIV from mother to child has also declined. In 2016, it was at 20%, and now, from the last estimate, it was at 4.3%,” explains Dr. Kataka. He further adds, “A lot still needs to be done; we shouldn’t have children being born with HIV. We are using similar medication compared to a country like Cuba, which has achieved elimination of mother to child transmission of HIV. This ideally means less than 5% of mothers living with HIV are transmitting it to their children.”
Clinton is one child whose journey speaks for many other children who have missed the joys of childhood. As CHS, we remain committed to ending paediatric HIV and overall ending the HIV epidemic in Siaya County.