Mycetoma: Decade After WHO Listing, Progress Still Fragile
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- WHO added mycetoma to its official neglected tropical diseases list on May 28, 2016, after advocacy by DNDi and partners, but a DNDi leader writes that the hoped-for donor and ministry response has not fully materialized.
- DNDi, the Mycetoma Research Center in Khartoum, and Japan's Eisai launched in 2017 the world's first randomized, double-blind clinical trial for mycetoma in Sudan, showing once-weekly oral fosravuconazole matches the effectiveness of daily itraconazole.
- MycetOS, an open-source drug discovery initiative established in 2018, has screened more than 2,000 compounds with several promising leads identified and all data shared without patents.
- The Global Mycetoma Working Group, formed in January 2018, now has over 200 members from 36 countries coordinating data and treatment strategies.
- The Mycetoma Research Center in Khartoum — the world's only specialized facility for the disease — was destroyed amid Sudan's conflict, with founder Ahmed Hassan Fahal and team rebuilding through a new satellite facility.
- Burden-of-disease studies are now underway in Ethiopia, Senegal, India, and Kenya, marking the first attempts to count the patient population.
- PCR-based molecular diagnostics now allow clinicians to differentiate fungal from bacterial mycetoma, enabling faster placement on the correct treatment pathway.
Why it matters: Mycetoma still primarily affects poor, barefoot agricultural workers and has no widely available curative treatment — the destruction of the Khartoum center means the world's only specialized clinical hub for the disease is offline even as new tools (fosravuconazole trial results, MycetOS leads, PCR diagnostics) are finally emerging after a decade on the WHO list.
