KHARTOUM—Researchers in Sudan are working on a clinical trial to treat one of the world’s most ignored diseases, mycetoma, which has been on the rise in the country.
Mycetoma is a chronic inflammatory condition caused by fungi or bacteria that infect the skin. It is most common among barefoot field workers, like farmers, and results in lesions and disfigurements that grow on the feet. The symptoms make it hard to continue with manual labor, creating financial hardships for patients and their families.
The social stigma of the disease also makes patients less likely to seek medical attention early, which hampers the success of treatment.
Last year mycetoma was officially listed as a neglected tropical disease by the World Health Organization, which has brought the few researchers interested in the disease some much-needed support. Prior to 2016, the disease got so little attention that, ironically, it didn’t even make it on the neglected-diseases list.
The Mycetoma Research Center in Khartoum has seen almost 7,000 cases between 1991 and 2014, making it clear that Sudan is a regional and global hotspot for the disease. The illness is also present in Somalia, Chad, Ethiopia, India, Mauritania, Senegal, Venezuela and Mexico.
The research center was established in 1991 by Ahmed Fahal—a general surgeon with a special interest in mycetoma and tropical surgery—at the University of Khartoum. It has come to be recognized as a leading institution in mycetoma research.
“It is a center of reference and excellence,” says Nathalie Strub Wourgaft, medical director at the Drugs for Neglected Diseases Initiative in Geneva, Switzerland.
Wourgaft and the initiative want to develop new treatments for neglected diseases. It took a long time to include mycetoma in the neglected tropical disease list, she says, but it will eventually help improve treatment since mycetoma, which mostly affects very poor people in rural and isolated areas who sometimes can’t afford shoes or choose not to wear them for cultural reasons, is finally being discussed.
Others agree. “This is a big achievement and now that we’re on the list we can levy support,” says El Sheikh Mahjoub, a researcher at the Mycetoma Research Center.
When mycetoma is caused by bacteria, it can be treated with a course of antibiotics, but approximately 70 percent of cases in Sudan are caused by fungi.
Studies have shown that fungal mycetoma needs a combination of medical and surgical therapy and this treatment also requires a prolonged administration of drugs and the close monitoring of patients. These drugs are available, but they are expensive. They also have significant side effects, and their efficacy is yet to be properly scrutinized. Experts also say there is a need to develop guidelines of best practice; treatment currently varies on a case-by-case basis.
In a bid to improve treatment, the Mycetoma Research Center and the Drugs for Neglected Diseases Initiative have started working with Eisai, a Japanese pharmaceutical company. The team is running a clinical trial for a new antifungal drug called fosravuconazole.
“We hope that fosravuconazole will have a higher efficacy in comparison with any other treatment,” says Wourgaft.
But while this is going on, Wourgaft says researchers need to continue gathering information that will help them to ferret out a better treatment. Accurate statistics on prevalence are lacking, and experts don’t yet fully understand how mycetoma spreads.
“The disease evolves slowly, is very invasive, and patients are not reporting it early,” she says.
One patient at the research center said she had a growth on her feet for four years before it was diagnosed at the center in the late stages of the disease.
“My advice to patients with mycetoma is to report it as early as possible and seek medical attention,” she says.
Mahjoub says the lack of a simple means to diagnose the disease makes it difficult to cure it in its earlier stages. “Currently there is diagnosis by culture, histopathology, serology and imaging, but these are a little bit in vain and take time,” he says.
To make things worse, these investigations are rarely available in the rural areas where the disease is most common.
There is currently no effort to totally eliminate mycetoma because the medical community simply doesn’t know enough about it to mount such a campaign. For that, we need “more people and more funding,” says Wourgaft.
But meanwhile Mahjoub has an optimistic outlook. “The center is under good supervision,” he says. “There are also excellent young researchers coming up.”
“We are all doing our best,” he says.