Mayowa's story: Defying the odds and living positively with HIV
By Omena Mimi Eghaghara
Omena Mimi Eghaghara is a Supply Chain Management Specialist for the USAID Care and Treatment for Sustained Support (CaTSS) Project, based in Kwara State, Nigeria.
One September day in 2018, while providing supportive supervision to one of the CaTSS-supported facilities in Kwara state, I made the first of many calls to Mayowa, a 21-year-old medical student living with HIV. Mayowa was exhausted and losing hope. After hearing his story, I committed to getting him the emotional and psychosocial support he needed to beat the virus.
Mayowa recalls that when he was 11 years old, his mother took him to the hospital for recurrent episodes of fever, oral thrush, and rashes on his skin. He was diagnosed with the HIV virus and started on antibiotics to prevent and treat further infections; his CD4 cell count at the time was within the normal range at 640 cells/microliter.
Although he didn’t fully comprehend it at that young age, he was aware that he had an illness that must be kept a secret and that he would have to take medicine every day for the rest of his life. The burden of keeping such a secret made the already introverted Mayowa even more reticent, and he distanced himself from his friends.
Four months after his diagnosis, his mother, who was his only support at the time, died from what appeared to be complications from HIV and diabetes. This plunged Mayowa further into a life of isolation and loneliness.
Mayowa believes that his own HIV infection was not a case of mother-to-child transmission, as he enjoyed a healthy childhood until his 11th birthday and has three older siblings who are HIV negative. He recalls that in 2006, his father became very ill and spent almost three months recovering in the hospital. He believes that both of his parents were aware of their HIV-positive status and began antiretroviral therapy during this period, without disclosing this to their children.
Some months after his father became ill, Mayowa did as well and was admitted to a hospital. When he needed a blood transfusion, his father stepped in as a donor to save his son’s life. Mayowa clearly remembers how unhappy his mother was at his father’s decision to donate blood to their son. Although he cannot be sure and no longer bears a grudge, he believes that this blood transfusion may have been the source of his HIV infection.
After his mother died, Mayowa’s father took on the responsibility of taking him to clinic visits. He was started on antiretroviral treatment (ART) in 2012 but refused to adhere to his medication and his condition quickly worsened, with a drop in CD4 cell count to 125 cells/microliter. He was switched to second-line therapy in August 2016 but continued to be non-adherent; according to him, the regimen was negatively affecting his studies. By August 2017, his CD4 cell count was down to 64 cells/microliter and he was admitted to the Civil Service hospital for complications of HIV. Although his body recovered from the complications, Mayowa no longer cared if he lived or died. He stopped dreaming and felt he’d had enough of life.
In September 2018, the CaTSS project got involved in Mayowa’s case. My attention was drawn to his case during one of my supportive supervision visits. The pharmacy’s focal person at the facility was concerned that Mayowa was no longer taking his medicine and had observed his lack of desire to live. I spoke with Mayowa by phone and listened to his life story, and I remember telling him that day that he would live to practice medicine. I followed up with him weekly. The patient-centered approach that is central to the work of CaTSS led me to become his psychosocial support and together, we worked through his issues, including his personal barriers to adherence and challenges with his ART and clinic visits.
To support Mayowa and other patients for whom initial treatment didn’t work or stopped working, CaTSS worked with the pharmacy focal person to ensure inclusion of a second-line treatment, ATV/r, in the requests and logistics report. As soon as ATV/r, a more tolerable treatment regimen, was available at the facility, I made sure that he was among the first to receive it in December 2018. Mayowa was happy about the reduced pill burden and became adherent. He remained adherent through the next year, and in February 2019, a blood sample was collected for viral load assay. Full of excitement, Mayowa called and proudly informed me that his last viral load test result was 179 copies/ml. He also called his father and his two older siblings to inform them of the good news. He was really excited and looking forward to living again! He now receives a three-month supply of medicine, reducing the frequency of his clinic visits.
Mayowa told me, “The beginning of your communication with me changed everything. I am grateful, my father is grateful.” He said that he is getting to the point of no longer caring what people think or say about his status. While his father has still not disclosed his status to him or his other siblings, Mayowa hopes to sit with his father someday and tell him that he knows he is on ART and that he has never held any grudge against him.
Mayowa has once again found a purpose for his life. His choice of study at the university was heavily influenced by his own experience, as he wanted to know more about HIV. He wants to do community medicine or pathology so that he can help others, and he is looking forward to wrapping up his studies in 2020.
I am happy that I took a chance on Mayowa. We are now working on improving his social life: he hopes to make at least one friend and travel out of Kwara state for the first time in his life before the year ends.
On behalf of Mayowa, I say thank you to the American people. Because of you, a doctor is coming through!
The Care and Treatment for Sustained Support (CaTSS) Project strategically supports the maintenance and uninterrupted delivery of quality and integrated HIV/AIDS and TB care and treatment services in 5 states of Nigeria, covering 107 health facilities. A patient-centered comprehensive care and treatment approach has helped strengthen health facilities, improving testing and counseling, linkage to treatment, adherence and retention, and viral suppression among people on HIV treatment.