“We are just blind there”: institutional invisibility of female genital schistosomiasis in South Africa

Introduction Female Genital Schistosomiasis (FGS) remains severely overlooked within neglected tropical diseases (NTDs), disproportionately affecting women in sub-Saharan Africa (SSA). Despite its high prevalence and association with adverse reproductive health outcomes and increased HIV susceptibility, FGS receives minimal attention in research, policy, and clinical practice. Understanding how FGS is or isn’t prioritised within policy implementation is critical for addressing this gap. Therefore, this study examined how FGS is recognised, prioritised, and rendered visible or invisible within South Africa’s evolving NTD policy and implementation processes across different levels of the health system. Methods A qualitative approach guided by Institutional Ethnography and Lipsky’s Street-Level Bureaucracy was adopted to map the institutional relations shaping NTD activities and understand how frontline discretion influences the prioritisation of FGS. Thirteen semi-structured interviews were conducted with stakeholders at the national, provincial, district, and facility levels, complemented by non-participant observation during a Communicable Disease Control (CDC) stakeholder meeting. A hybrid (deductive–inductive) approach to thematic analysis was used to examine how policy texts, governance structures, and everyday implementation practices collectively contribute to the marginal positioning of FGS within the NTD Master Plan. Results Four interrelated themes showed how FGS invisibility was produced across policy, programme, clinical and data systems. Awareness was uneven and unsupported by pathways for diagnosis, referral and routine care. Although some stakeholders held a view that FGS was included within general schistosomiasis programming, they conceded that it was not explicitly named in the draft Master Plan and lacked a defined mandate, programme ownership, operational guidance and routine indicators. Consequently, even when FGS became visible to individual actors, recognition rarely generated sustained institutional action. Discussion Female genital schistosomiasis will become visible when awareness is embedded within a policy framework that mandates action, supported by clinical guidelines that define practice, equipped with approved diagnostic tools that enable identification, and anchored within an institutional home that has the authority and the resources to coordinate a response.