The Long, Strange Journey of Mycetoma Research

First came the photos and videos.

Labs and offices ransacked. Computers, medical supplies, and laboratory materials looted. Thousands of biological specimens collected over four decades ruined after electrical power shut down. Ahmed Fahal, director of the Mycetoma Research Center in Khartoum, Sudan, was looking at the destruction his life’s work.

“I did not believe my eyes because all the time, I was thinking, ‘This center is not going to be destroyed by the war, because we are doing a lot of good work for the patients, we are doing a lot of work for the communities,’” Fahal says.

The work is research and treatment focused on a flesh-eating, bone-destroying neglected disease called mycetoma. Its fungal form (eumycetoma) eats away at bones and can require the amputation of limbs, if untreated. 

A devastating civil war between Sudan’s Armed Forces and the Rapid Support Forces (RSF) erupted on April 15, 2023, and eventually spilled over into Fahal’s center (he doesn’t know the exact date). When it was finally safe to visit the destroyed center almost a year later, the reality overwhelmed him.

“I could not keep my tears, my emotions, and I was really crying, actually, when I saw this,” he says. “For quite a long time, whenever I talk about mycetoma, I start to cry—still, still, still, all the time.”

The assault on the center, which Fahal founded in 1991, was a “a huge loss to the scientific community, to the mycetoma community,” says Dallas Smith, a CDC epidemiologist who leads the Global Mycetoma Working Group. “If you look at all the major studies, look at all the major advancements in mycetoma over the last 30 years, it's all come from the Mycetoma Research Center.” The center’s destruction has pushed back mycetoma science by several years, he adds.

While the center—recognized as a WHO Collaborating Centre on Mycetoma—is clawing its way back to its prewar research and treatment efforts, the atmosphere there remains distant from the heady days 10 years ago when the World Health Assembly voted to lift mycetoma from obscurity and place it on the list of neglected tropical diseases (NTDs). 

The subsequent decade has not worked out as Fahal wanted. He points to a lack of international funding and the global failure to make more advances in diagnostics and treatments. Other mycetoma scientists revere Fahal but say significant progress has been made.

High Hopes, Then Gloom

On May 28, 2016, Ahmed Fahal was happy.

He had finally succeeded after pushing the WHO for years to recognize mycetoma, researching the disease, publishing 300+ journal articles, and caring for patients whose lives are shattered by the disease.

Many are farmers who work barefoot and may have stepped on a thorn. A bacterium or fungus (the disease is caused by either) penetrates the skin and can cause severe disfigurement and threaten their livelihood and life.

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One reason the disease struggled for attention is the people affected—“the poorest of the poor” who often lack formal education and struggle daily for adequate water and food, says Borna Nyaoke, head of the Mycetoma Global Program at Drugs for Neglected Diseases initiative (DNDi). “The governments have forgotten about them, even the NGOs have forgotten about them,” says Nyaoke.

Other reasons mycetoma has been ignored: Most people are not aware of the disease, and no one knows how many people are affected. The data that do exist are mostly based on hospital visits. But an untold number of cases aren’t counted because so many people can’t afford to travel to a distant hospital. Instead, they rely on traditional medicine and suffer. Pressed for an estimate of new global mycetoma cases that emerge annually, Wendy van de Sande, an associate professor at Erasmus University Medical Center in Rotterdam who has studied mycetoma for 25 years, says “I think a million per year is too much, but I'm not sure. I think 10,000 is too low.”

In spite of its unknown prevalence and its impoverished patient population, mycetoma finally received global recognition that day in May 2016: The World Health Assembly voted to name mycetoma as the 18th disease on its official NTD list. (There are now 21.) 

Global Health NOW sent journalist Amy Maxmen to Sudan in 2015 to document the “most neglected disease,” and Fahal’s efforts to save lives and expand the science of mycetoma. Maxmen’s series of articles was published in December 2015, six months before the WHA's vote. Fahal says the coverage was “essential in bringing this ‘forgotten disease’ out of the shadows.”

Fahal remembers the elation he felt then ... that “the sky is the limit for our expectations and hopes and dreams,” he says. “Including mycetoma on the list, that means a new era, new activities, new research, new training, and new funding.” 

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While the significance of mycetoma being added to a list that contains dracunculiasis, onchocerciasis, and soil-transmitted helminthiases may be lost among people fortunate enough not to worry about such diseases, it is genuinely a big deal.

“It's just a list, but it gives so much political and scientific backing, because you're in this club now, you're in the NTD club,” says Smith. “It doesn't mean there's going to be funding, doesn't mean there's going to be any action, but just because it's on that list, that gives us an in to talk with ministers of health that have NTD departments; that gives us an opportunity to talk to funding organizations that work on NTDs; and it allows us to work more collaboratively, to think about integration with other NTDs.”

For a time, the hopes seemed to be realized. Tedros Adhanom Ghebreyesus, WHO Director-General, visited the center in October 2018. The WHO supported a training session in Khartoum the following year. And WHO Africa paid for three trainees from Djibouti, Senegal, and DRC at the center, says Fahal. But funds underwriting research and treatment from the global health agency didn’t arrive. Given that WHO had to slash 21% from its 2026-2027 budget, the agency isn’t likely to bestow funds on the center. (A WHO mycetoma expert didn’t respond to interview requests.)

A mere $5.8 million was directed to mycetoma from 2016 to 2024 by the main public, private, and philanthropic organizations that support global health R&D, per G-finder published by Impact Global Health. Funding from the French and German embassies dried up after they closed when civil war broke out. Fahal doesn’t expect their funding to return anytime soon, though he has received support from donors in Sudan.

The outlook is “very gloomy,” Fahal says. He points to the WHO’s NTD roadmap and its 2030 targets. Most performance indicators for mycetoma remain red, “indicating that nothing has been done in this area, and no progress, and no improvement,” he says.

He ticks off a lack of advances in “research, management, community activities, field surveys,” that leave mycetoma behind the successes of other NTDs. There’s still only one approved drug for eumycetoma treatment: itraconazole, which requires two doses per day for at least a year. Doses must be taken with food to be effective—a high bar for poor people who already struggle to eat twice a day. It’s also very expensive: A year’s supply of the difficult-to-access drug can cost up to $2,000.

The Positives

In addition to opening doors to funding organizations (if not the funding itself), mycetoma’s addition to the NTD list has brought new people and ideas to the field. 

Prior to mycetoma's recognition in 2016, only a few scientists were working on the disease with most publications coming from Fahal’s team, DNDi, and van de Sande’s group. Now, researchers are working in Senegal, Kenya, Somalia, Ethiopia, and across Europe, van de Sande says.

Smith says the Global Mycetoma Working Group counts more than 200 members in 36 countries, creating an ecosystem of research that’s taking place in countries like Senegal and Kenya. The field is also drawing younger researchers who can benefit from experienced scientists like Fahal, he says.

Research, too, has advanced. DNDi and the Mycetoma Research Center launched the first-ever double-blind randomized clinical trial in 2017 for a new mycetoma drug made by Eisai, a Japanese pharmaceutical company. The trial of Fosravuconazole, which treats eumycetoma and only needs to be taken once weekly instead of twice daily, had positive results, says Nyaoke. It is now heading into a phase III trial, which is expected to begin by the end of this year. (Bacterial mycetoma treatments using antibacterials have an efficacy of more than 90% within three to four months, she says.)

For a project seeking new drug options, van de Sande and partners in Australia, the U.K., and Germany have screened nearly 10,000 existing drugs to find medications that could be effective against mycetoma. They are working with chemists to optimize candidate drugs to make them more potent—a longer-term project, she says. 

Now and Tomorrow

Today, the Mycetoma Research Center in Khartoum is treating patients—about 200 in April—and conducting research, but Fahal estimates that $250,000 is needed for restoration and equipment. He’s raised about $100,000 so far, he says. He once dreamed of constructing a new center that would cost $2–3 million, “but this is not in the near future,” Fahal says.

When the RSF attacked Khartoum, Fahal shifted its operations to Gezira, Sennar, and Kassala states, doing more than 1,000 operations—all free of charge. The sister centers in Sennar, and Kassala are still operating.

And other experts say they’re optimistic about the future and possibilities:

A point-of-care test that works like a COVID dipstick but has two lines that delineate between bacterial or fungal mycetoma would be ideal, says van de Sande. “But unfortunately, we're not there yet,” she says.

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Beyond Fosravuconazole, the drug being evaluated by DNDi, mycetoma researchers hope for better drugs (perhaps combination therapies) that don’t need to be taken for a year or more. 

In addition to the phase III trial of Fosravuconazole, DNDi has launched epidemiological studies in Senegal and Ethiopia to begin teasing out the prevalence of mycetoma in different settings—important information to persuade health ministry officials to dedicate scant resources to prevention and treatment of the disease.

Wider use, too, of ultrasound that can diagnose mycetoma and distinguish between bacterial or fungal origin—a process pioneered by Fahal in 1997—would be a significant benefit, notes Nyaoke. 

10 years since Ahmed Fahal finally secured global recognition for mycetoma, people still suffer from it––but researchers are also pursuing solutions to treat and prevent “the most neglected” disease.

“We are optimistic,” says Doudou Sow, a professor of Parasitology-Mycology at the University Gaston Berger of Saint Louis who leads research into mycetoma and other NTDs in Senegal. “We are always optimistic because we are scientists. Without optimism, we cannot go far.”

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