A Decade Since WHO Recognition: Reflection and Future Directions in Mycetoma Research, Care, and Health Equity

On July 22, 2026, the Drugs for Neglected Diseases initiative (DNDi) convened a landmark global webinar titled A Decade of Mycetoma Advocacy and Research, moderated by Lynette Otieno, Head of Communications, DNDi. Marking ten years since the World Health Organization (WHO) formally designated mycetoma as the 18th Neglected Tropical Disease (NTD) in May 2016, the event brought together leading scientific experts, public health strategists, and frontline community advocates to evaluate a decade of progress, analyse ongoing systemic challenges, and establish an actionable path forward. The distinguished expert panel featured Prof. Ahmed Fahal, Founder, Mycetoma Research Center, Sudan; Dr. Nathalie Strub-Wourgaft, General Delegate, PANTHER Platform; former DNDi Clinical Director, Dr. Augusta Kadima Eda, NTD Medical Officer & Focal Point for Mycetoma, WHO AFRO, Dr. Borna Nyaoke, Head of Mycetoma, DNDi, John Ekai, Medical Lab Technologist at Lodwar County Referral Hospital and Community Advocate, Kenya and Dr. Dallas Smith, Epidemiologist, Mycotic Diseases Branch, U.S. CDC.

Reflecting on the historical baseline of mycetoma care, Prof. Ahmed Fahal recalled the harrowing conditions that led to the founding of the Mycetoma Research Center (MRC) at Soba University Hospital in 1991. For decades, medical management was severely constrained by ineffective diagnostics and highly toxic, cost-prohibitive therapeutics such as prolonged ketoconazole regimens. Because early fungal and bacterial lesions are characteristically painless, socio-economically vulnerable patients routinely presented at advanced stages when massive tissue destruction and secondary bacterial infections had already taken hold, leaving surgical amputation as the primary, tragic option.

Dr. Nathalie Strub-Wourgaft detailed the rigorous, multi-year international advocacy campaign coordinated by DNDi alongside the Sudanese Ministry of Health and partner nations. This collective push culminated in the landmark May 2016 resolution at the 69th World Health Assembly, which officially added mycetoma to the WHO NTD list, a critical turning point that catalysed global academic partnerships, attracted essential institutional funding, and established dedicated research networks.

Despite these political and institutional milestones, the global burden of mycetoma remains a formidable public health challenge. The disease is heavily endemic across the global “mycetoma belt”, stretching geographically between 30°N and 15°S latitudes, with severe, ongoing disease burdens documented across Sudan, Kenya, Ethiopia, Senegal, India, and Mexico. A central theme highlighted by speakers was the pervasive issue of epidemiological invisibility. Severe social stigma, fear of limb loss, and limited local health literacy cause widespread community underreporting. Addressing this gap, Dr. Borna Nyaoke presented recent DNDi field surveys and retrospective mapping projects in Senegal, India, and Ethiopia. These field studies uncovered hundreds of previously unrecorded cases hiding in remote villages, providing concrete empirical proof that mycetoma must urgently be integrated into national public health frameworks as a formally reportable and mandatory surveillance disease.

On the clinical research and development front, the webinar underscored revolutionary advancements in drug development and diagnostic pipelines. Dr. Nyaoke detailed the milestone clinical trial executed in partnership with Eisai Co. at the MRC in Khartoum evaluating fosravuconazole. This novel therapeutic agent offers an unprecedented once-weekly oral administration schedule, presenting a massive operational advantage over older standard-of-care regimens that required strict adherence to daily dosing for up to twelve full months. Parallel R&D efforts are actively expanding into the preclinical pipeline, prioritising the discovery of new chemical entities (NCEs), point-of-care rapid diagnostic tests suitable for resource-limited primary clinics, and advanced animal models to decipher complex host-pathogen immunopathology and antifungal resistance mechanisms.

Translating scientific innovation into tangible health equity requires overcoming steep grassroots barriers. John Ekai provided a stark accounting of frontline realities in Turkana, Kenya, describing how vast geographic distances, impoverished infrastructure, and a lack of local diagnostic tools force rural patients to rely on traditional healers long before seeking hospital care. To dismantle these structural barriers, panellists called for a multi-tiered public health strategy: training community health promoters in early skin-NTD recognition, fully integrating mycetoma screening into existing primary healthcare packages, securing reliable supply chains for subsidised essential antifungals, and locking in dedicated budgetary lines from national ministries.

Looking to the future, the symposium emphasised that biomedical cures alone are insufficient without comprehensive social rehabilitation. Prof. Fahal advocated for a holistic, patient-centered care model that pairs early, non-surgical curative care at decentralised rural health posts with micro-finance schemes, vocational training, and psychological support provided through community entrepreneurship centers to combat disability and economic marginalisation. Closing the discussion, Dr. Dallas Smith emphasised that the Global Mycetoma Working Group, which has expanded to over 200 members across more than 40 countries, serves as a vital global paradigm. As climate change, environmental displacement, and escalating antimicrobial resistance alter the distribution of invasive fungal pathogens worldwide, the collaborative blueprint established by the mycetoma community provides an indispensable roadmap for future global fungal threat preparedness.