In HIV programs, “treatment interruption” is often reduced to numbers: “defaulters”, “missed appointments”, or clients “lost to follow-up”. While these metrics are important for monitoring program effectiveness, they can inadvertently strip away the complexity of people’s lives, causing the realities behind the statistics to fade into the background. Yet, each missed appointment is a poignant indicator of the significant barriers individuals face daily – barriers that can compel them to step away from treatment, even when they profoundly wish to remain in care.

Throughout my years working in HIV care, I’ve encountered clients who couldn’t attend clinic appointments or completely stopped treatment for reasons that rarely make it into our reports. For instance, a young mother in Okobo confided that her real struggle was affording school fees for her children. “I couldn’t be thinking about medicine when my children were sitting at home because I couldn’t pay their school fees,” she told me, prioritizing her children’s education over her own health. Another woman in Omoku discontinued treatment entirely, fearing her husband would discover her HIV status and expel her from their home. She chose family over medicine. Then there was this man from Uyo who had taken his pills faithfully for 11 years, but one day, the routine simply wore him down. Swallowing those tablets every single day felt like an endless grind, and he burned out. These individuals are not merely “defaulters” in a report, nor are they just numbers or “factors” on a list; they are people confronting profound fears, exhaustion, and impossible trade-offs.

The Human Cost of Interruption

When someone interrupts treatment, the medical risks are severe: the virus can come back (viral rebound), drug resistance can develop, and illnesses like tuberculosis can strike. However, the impact extends far beyond clinical outcomes. Beyond laboratory figures, interruption profoundly affects the individual as a human being. Someone who was once healthy can quickly become ill again, battling infections that drain both their physical strength and financial resources. The emotional toll can be equally heavy, with feelings of guilt, shame, or fear of judgment often preventing people from returning to care. Families also bear the brunt: when a parent falls ill, children may miss school, meals become uncertain, and household stability is jeopardized. Treatment interruption is, in essence, an interruption of dignity, well-being, and everyday life.

Life Happens Between Clinic Visits

People do not live in clinics; they live in the real world. Many individuals remain out of care or delay returning despite these risks. Some travel back to their villages for extended periods during planting or festive seasons, far from any clinic. Others rely on daily labour or petty trading, where a clinic visit means losing that day’s only income. Religious and cultural beliefs sometimes lead individuals to pause treatment when promised healing through prayer or traditional remedies. For young people, particularly adolescents, moving between schools, cities, or guardians often disrupts the continuity of care. While HIV treatment is important, it is rarely the only thing in people’s lives; it is but one of the many competing realities of everyday life.

The Human Side of Re-Engagement: Putting People First

Traditional approaches to re-engagement often speak of “tracing defaulters.” Chasing down “defaulters” with phone calls or visits is helpful, but it can feel like treating individuals as problems to fix, not humans to support. What if we flipped the script? Here’s how a more caring approach could look:

• Welcome Them Back with Open Arms: When people return, they should be welcomed, not reprimanded. Many already carry heavy burdens of guilt or shame; hearing “you are still welcome here” can be the crucial difference between staying and disappearing again. Every return signifies resilience, not failure.
• Start with Listening: When someone returns after a missed appointment, the initial question should not be, “Why did you default?” but rather, “What made it difficult for you to continue?” Sometimes it’s transport, sometimes school fees, sometimes relocation. Listening demonstrates respect and opens the door to genuine, lasting solutions.
• Make It Easier to Get Medications: Bringing services closer makes a significant difference. Options like multi-month refills, community ART groups, or allowing clients to pick up medications at a nearby primary health center or pharmacy can prevent them from sacrificing a full day’s income just to collect their medicine.
• Wraparound Support: HIV care cannot exist in isolation. Linking clients with social services like food support, small business grants, or even assistance with school fees directly addresses the very issues that often pull them out of treatment in the first place.

Keeping the Door Wide Open

Let’s be realistic; interruptions will happen because life is inherently unpredictable. The key lies in how we respond. Do we only see “defaulters,” or do we see people juggling school fees, work, family responsibilities, and illness all at once?

Our experience in ECEWS consistently demonstrates that when care is flexible, respectful, and grounded in trust, clients return. And they stay. Because HIV care and treatment isn’t just about suppressing a virus; it’s about standing with people through life’s inevitable ups and downs and ensuring they always know the door to care remains wide open.