Preventing Blindness Before It Starts: Nikki Hafezi on Pediatric Keratoconus, Public Health, and Policy
Keratoconus is often framed as a refractive or corneal disease. In reality, it is a public health challenge with lifelong consequences if left undetected—particularly in children. In a recent podcast discussion with Dr. Madhi Wahib on his podcast, Wahibtalks, Nikki Hafezi, MAS IP ETHZ, CEO of the ELZA Institute (Zurich) and CEO of EMAGine AG, outlined why early detection, epidemiology, and policy are now central to how keratoconus should be addressed globally.
Keratoconus in Children: A Different Disease Profile
From a clinical perspective, pediatric keratoconus behaves differently from adult disease. Progression is typically faster, more aggressive, and closely linked to hormonal changes around puberty. By the time visual loss becomes symptomatic, significant structural damage to the cornea may already have occurred. This biological reality underpins the rationale for systematic screening rather than symptom-driven diagnosis.
Why Early Detection Matters More Than Treatment Alone
Through her work with the Light for Sight Foundation, Nikki Hafezi has helped shape a framework built on four pillars: access to technology, outreach to at-risk populations, medical education, and research. At the core of this approach lies epidemiology. Large-scale prevalence data do not simply quantify disease burden; they redefine how keratoconus is classified within healthcare systems.
The K-MAP Study and the Myth of Keratoconus as a Rare Disease
The K-MAP (Keratoconus Mapping and Prevalence) study exemplifies this shift. Beginning with a pilot cohort in Saudi Arabia and expanding globally, K-MAP has now enrolled nearly 20,000 children and adolescents. Early findings demonstrate prevalence rates far higher than historically assumed, challenging the long-held notion that keratoconus is a rare disease. This distinction matters: diseases classified as “rare” are often excluded from national screening programs and reimbursement pathways.
Barriers to Screening and the Role of Portable Imaging
However, detection alone is not enough. Current gold-standard diagnostic devices, such as Scheimpflug-based corneal tomography, are accurate but costly and logistically unsuitable for large-scale school screening. To address this gap, new approaches are being developed, including portable, smartphone-based corneal imaging solutions designed for field use—mirroring recent advances in making corneal cross-linking more accessible worldwide.
From Clinical Data to Health Policy
Beyond screening, Hafezi emphasized the importance of translating clinical data into policy language. Health technology assessments demonstrate that nationwide pediatric screening is economically favorable when compared with the long-term societal costs of vision loss, educational impairment, and workforce exclusion. In this context, prevention is not only clinically sound but fiscally responsible.
A Public Health Model for Keratoconus Prevention
This public-health perspective also informs broader initiatives in Central Asia, where epidemiological data are being used to guide infrastructure development, attract investment, and design sustainable ophthalmic care networks.
The message is clear: keratoconus management can no longer begin at diagnosis alone. It must start earlier—before visual loss, before progression, and before opportunity is lost. For ELZA, this aligns with a core principle: preserving vision means acting early, acting systematically, and grounding decisions in data rather than assumption.
