Glad to be in a room away from the scorching sun, Nicko tried to steel himself as he intently watched the Clinician at the Kauwi Health Facility’s – Comprehensive Care Clinic (CCC) counting tablets and filling the medicine bottles. He tried to hold back tears, questions racing through his young mind after making a shocking discovery only moments before, that he was HIV positive. His was a case of accidental disclosure, he was only 13 years old.
Earlier that day his aunt had sent him to Kauwi Health Facility, a CHS supported facility in Kitui County with an appointment card to pick medication. They had been to the facility many times before and for the same reason, but he was always in the company of his aunt. On that fateful day, he was alone and he had curiously read through the appointment card, unaware of the revelation in waiting.
“We had been taught about HIV in school so when I saw ARV on the appointment card with my name on it I knew what that meant. I should have never read that card, I was mad! I did not know where I got it from or why they were giving me medication for a disease with no cure, I just wanted to die,” remembers Nicko.
After his mother passed away, Nicko had been left in the care of his aunt Genesi Mukungi, “I did not know his status then but when I found out I decided to take good care of him, I had strongly thought about how I was going to break the news to him, I did not intend him to find out the way he did,” said Genesi.
Nicko was embarrassed and afraid of what people would think once they found out that he had HIV. This greatly contributed to his failure of taking his medication which greatly affected his health. “He would sit quietly through the counselling sessions and only speak when he needed to,” remembers Genesi. In 2018, the situation went from bad to worse, when he had to drop out of school because his health was quickly deteriorating. He was in and out of the hospital, he could no longer walk without support and had started developing sores on his arms.
Changing Tides
Gilbert Kiptoo, a CHS driver, had just dropped the program team at the facility when he spotted Nicko and his aunt walking in. “Nicko could barely walk, he seemed weak and sickly. I offered to help walk Nicko to the Comprehensive Care Clinic (CCC),” he recalls.
Kiptoo waited outside the CCC counselling room aware of the challenges HIV patients experience during their treatment journey. Deep within him, he wanted to find out more about the boy and what he could do to help.
What started as a short conversation at the facility grew into a long-lasting friendship. “Kiptoo was nice, somehow I connected with him, I felt like someone finally understood what I was going through,” said Nicko.
Kiptoo frequently visited Nicko and helped identify Nicko’s barriers to adherence and together they have developed an adherence plan to address each of the issues raised including receiving SMS reminders from Kiptoo for appointments and medication as well as motivation messages. Due to their relationship, the *Multidisciplinary Team (MDT) assigned Kiptoo as Nicko’s case manager. The duo has since agreed on follow-up dates in the month when Kiptoo conducts home visits where they meet to talk and catch up on his wellbeing.
During the first interview in March 2019, he confidently showed us the sores on his arms which he said were healing and slowly fading away. He can also walk without support and has enough strength to go back to school as well as participate in his favourite sport football. Currently, Nicko sores are barely visible, he has attained viral suppression and has fully taken up his favourite social activities such as football, helping his aunty in the farm and looking after his pets.
A Clinical Intervention for Non-Adherent Patients
Ensuring that patients, such as Nicko, receive high-quality care and treatment services is paramount and necessary for improved health outcomes. Every CHS supported facility has a Multidisciplinary Team (MDT) whose role is to; ensure that people living with HIV are following their treatment plans, help in the identification of treatment adherence barriers, discuss patients failing in treatment or are non-adherent and formulate a way forward on supporting such patients through their treatment journey.
Patients fail in treatment for various reasons including poor adherence due to stigma, side effects of the medication, lack of disclosure, drug abuse among others. The MDT assign a case manager for such patients to ensure close monitoring and follow up. Case managers are individuals that are close to the patient and serve the role of being a link between the patient and the MDT and coordinate other adherence supports systems that may best serve the patient. In addition to this, the case manager provides both moral and social support including reminding the patient to take medication and accompanying them for some of their clinic appointments.
With support from United States President’s Emergency Program for AIDS Relief (PEPFAR), through the U.S. Centers for Disease Control and Prevention (CDC), CHS through its NAISHI project supports 213 health facilities in Machakos, Kitui and Makueni Counties to implement and expand sustainable high-quality HIV services specifically comprehensive HIV prevention, care and treatment with improved yield and retention of patients on treatment.
*Children of school age should be told of their HIV-positive status; younger children should be informed incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure. Disclosure can be seen as a step in the process of adjusting to an illness and the life challenges it poses (World Health Organisation – Guideline on HIV disclosure counselling for children up to 12 years of age)