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Generations at Risk: Navigating the Challenges of Adolescent HIV Infection in the Modern Era

Mai Tendai approaches Chipo, the young 23-year-old mother sitting on the clinic bench, cradling her baby son Tapiwa in her arms. Tapiwa's big brown eyes, wide with curiosity and contentment, fix on his mother as he comfortably suckles at her breast. At just 2 months old, he symbolizes innocence, an innocence that his mother is determined to protect. Chipo, born with HIV before prevention of mother-to-child transmission and antiretroviral therapy was readily available in Africa, is no stranger to life's hardships. Chronically unwell as a child with recurrent pneumonias and ear infections, her diagnosis came later in life. Today, she is here for a review visit, and, anxious but resolute; she will do everything in her power to ensure that Tapiwa does not contract HIV.

Chipo’s father was a teacher. He was well respected in the village and known for leading his students to consistent success in national examinations but was not without flaws. On Friday and Saturday nights, he would retreat to the local growth point bar, perhaps to drown the weight of family expectations as the eldest son, or to vent his frustration at being passed over for the position of head teacher. These Friday nights were likely a retreat for him; sometimes he would come home late, and sometimes not at all. Despite his weekend restlessness, he remained a consistent provider for his family, a respected teacher, and well-loved by his wife. The village turned a blind eye to his drinking, hoping it was a passing phase and that maturity would eventually prevail. Unbeknownst to them, a virus was spreading through the village, country, continent, and indeed the world. By the late 1990s, her father had unknowingly contracted the disease and passed it on to Chipo's mother. He died when Chipo was a baby, and her mother followed a few years later leaving Chipo behind as an only child.

At the age of five, Chipo was sent to live with her grandmother, her father's mother, who had adored her son and now poured all her love and attention onto Chipo. But Chipo proved to be a sickly child, often requiring trips to the clinic and expensive medications to treat her infections. Her growth seemed stunted in comparison to her parents: her father had been a tall, handsome man, and her mother had been known as the village beauty. Yet Chipo was always below average weight on the clinic charts, her small frame marked by chronic skin rashes that scarred her face, her back, her arms.

When Chipo was 8 years old, she was admitted to the district hospital, where a young doctor with a keen interest in HIV had recently been posted. Concerned about undiagnosed pediatric HIV infections in the community, the doctor's attention was drawn to Chipo's recurrent infections. She took the time to educate and counsel Chipo's grandmother about HIV, recommending that blood samples be sent to Harare for testing. Chipo's grandmother recognized the significance of the test, understanding that it might also shed light on the illness that took the life of her son. Several weeks later, the results returned, confirming that Chipo was HIV positive and urgently needed to start treatment. In those days, treatments were not available in district hospitals; Chipo would have to go to the city. Aware of the challenges the regular visits to the clinic would pose, particularly as she herself was struggling with diabetes and hypertension, Chipo's grandmother arranged for Chipo to stay with her aunt, Valerie. Valerie was her mother's sister and a nurse. Chipo’s grandmother had faith that Valerie would love and care for Chipo as she started treatment.

Chipo's aunt Valerie, a kind, smart, loving woman with no children of her own, had initially wanted to care for Chipo after her Chipo’s mother's death but had deferred to the custom of the father's family determining the fate of children left behind. Heartbroken to learn of Chipo's HIV infection, Valerie nevertheless knew she was well-equipped to handle the situation and provide Chipo with the care she needed. Under Valerie's nurturing guidance, Chipo began antiviral therapy, and her condition quickly improved. Her skin healed, and she began to grow, transforming into a healthy pre-teen who embraced life with a zeal that promised a bright future. Gone were the days of hospital admissions; Chipo not only caught up with her peers in school but also made friends and became active in sports. With Valerie's steadfast support, Chipo's life had taken a turn for the better.

Valerie cherished and nurtured Chipo as if she were her own daughter, but as the economic situation grew more challenging, and her nurse's income could barely stretch to cover her needs, Chipo's needs, and the extended family's, Valerie was compelled to seize an opportunity to move to the UK to work as a nurse. Valerie planned to work diligently and send money home for Chipo's education and health. She left when Chipo was 14 years old. The departure was a devastating blow to Chipo, who was sent to live with her father's brother's family. Unlike Valerie, they were neither kind nor loving to Chipo, viewing her as a financial burden and making no secret of their resentment. Though Chipo knew that Aunt Valerie was sending money for her, none of it reached her. She pleaded with Valerie to come and take her to the UK, but Valerie, still navigating her own immigration papers, was unable to do so. Chipo's despair grew into depression. Without Valerie's companionship and support for her clinic visits and treatment, and with her uncle's family's indifference, Chipo's health declined. She missed visits, prescriptions went unfilled, her viral load increased, and her CD4 count dropped. By the time she was 16, her disease had progressed, leading to a severe bout of tuberculosis that hospitalized her for three weeks and caused her to miss her O’ Level exams. Her uncle's anger at her non-adherence to treatment became an excuse to send her to the village, claiming she had become unruly and needed the structure and hardship of village life to mature.

Chipo relocated back to the village, where she gradually acclimated to rural life. Contact with Valerie dwindled, hindered by Chipo's lack of funds for telephone calls and the unreliable network in the village. In her loneliness, Chipo found companionship with a village boy three years her senior. Initially charming, he soon revealed a darker, more abusive side, his jealousy manifesting in unfounded accusations of infidelity whenever Chipo traveled to the local clinic. Feeling trapped and under pressure, Chipo abandoned her clinic visits and, consequently, her medications. Her health declined, and she became pregnant. The village boy, unable to face the responsibility, turned his back on her, leaving Chipo alone and vulnerable once again.

Chipo, having lived the consequences of mother-to-child HIV transmission, was determined not to let her baby suffer the same fate. With the departure of the abusive boyfriend from her life, she renewed her commitment to her health, returning to the clinic and meticulously resuming her medications. Recognizing Chipo's resolve but aware of her past struggles, the nurse at the clinic appointed a peer counselor to visit her weekly soon after restarting her treatments. Now, more than ever, Chipo understood the gravity of her situation and the importance of adhering to her medication regimen, not just for her sake but for her baby's as well. The visits from the peer counselor, a young woman living with HIV herself, became a cherished part of Chipo's routine. Together they discussed the medications, how they can prevent transmission to the baby, and the counselor shared her own experiences, struggles, and triumphs living with HIV. More than just a mentor, the counselor became a fast friend to Chipo, introducing her to a supportive community of young mothers who were successfully raising children and pursuing their education through adult classes at the local church. In this circle of understanding and encouragement, Chipo found a renewed sense of hope and empowerment.

Chipo diligently adhered to her medication regimen, and her viral load was undetectable by the end of her third trimester. The birth of a healthy baby boy, Tapiwa, filled her with immense pride and joy. However, today's visit to the clinic is fraught with anxiety as she awaits the results of Tapiwa's 6-week early infant diagnosis test, fervently praying for a negative result. She's also eager to learn everything possible about preventing HIV transmission to Tapiwa through her breast milk. Sensing Chipo's worry, Mai Tendai reaches out with comforting reassurance. She candidly shares her own story, including her deep regret that she was unable to prevent transmission to her own child. In the shared experience of motherhood and the complexities of living with HIV, a bond forms between these two women.

Chipo’s story reflects the ongoing challenges associated with perinatal and adolescent HIV infection. Despite tremendous strides in preventing mother-to-child transmission, more than 120,000 babies are tragically born with HIV each year globally. Cracks in the healthcare system can lead to a lack of easy access to antenatal care, particularly for HIV infected adolescents and young adults like Chipo, who may face obstacles of stigma, fear of disclosure to partners, and social instability. These complex factors make them vulnerable to poor clinical outcomes, and in some tragic cases, may lead to three generations of HIV transmission within a family. As the global community concentrates on advancing therapies for adults, it's crucial to adapt these innovations to cater to the unique needs of adolescents and young adults living with HIV. This adaptation may include investing in personalized counseling that addresses stigma and disclosure, enhancing accessibility to antenatal care, especially in rural or underprivileged areas, and supporting research into therapies specifically designed for younger populations. Fostering community-based support networks that connect young adults with peers who have shared experiences can be invaluable in mitigating social instability. In addition to reinforcing the healthcare infrastructure to provide enhanced support to adolescents living with HIV, it is vital to pursue clinical trials that explore innovative therapies tailored for this age group, complementing this with implementation science research to discern the most effective methods for deploying novel therapeutic interventions. Adolescent focused research will aid in creating sustainable strategies that foster long-term adherence among adolescents, particularly as they navigate the multifaceted challenges of adolescent life.

Tariro Makadzange is an infectious disease physician and the founder of CRMG Mutala, a research organization dedicated to understanding an improving health in Africa. This fictional piece of storytelling highlights the urgent needs in perinatal and adolescent HIV infection. If you found value in this article, please share and subscribe. Image courtesy of Microsoft Office stock images.

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