Transmission Patterns and Factors Influencing High Incidence of Leprosy among Indigenous Penan in Sarawak, Malaysia

Introduction

Although leprosy was declared eliminated in Malaysia in the 1990s, it continues to affect the indigenous Penan community in rural Baram, Sarawak, with prevalence rates of 2.08–35.5 per 10,000—far above the WHO threshold. Previous studies noted delayed diagnoses and geographical clusters among the Penan, but the drivers of ongoing transmission remain unclear.

Objective

This study examined factors contributing to the persistent high incidence of leprosy within the Penan community in Upper Baram, Sarawak.

Methods

Semi-structured qualitative interviews were conducted from January–May 2022 with Penan individuals and healthcare professionals (HCPs), using guides based on the Socioecological Model. Villages with high leprosy incidence and relevant rural health facilities were purposively sampled. Interviews were recorded, transcribed, and thematically analysed.

Results

Thirty-seven participants were interviewed: 22 Penan (aged 19–82) and 15 HCPs (aged 28–62). Three themes emerged: (i) transmission was linked to family-level spread, inter-village movement, and disease characteristics; (ii) community factors included low awareness, nomadic lifestyle, overcrowding, and poor nutrition; (iii) health system barriers included limited access, inadequate diagnostic capacity, fear of slit skin smear procedures, and infrequent active case detection.

Conclusion

Leprosy transmission among the Penan is sustained by cultural, environmental, and healthcare system challenges. Addressing this requires a multifaceted response, including stronger rural health infrastructure, improved diagnostics, regular active case detection, and culturally tailored health education to halt transmission in this underserved community.