Neglected Tropical Disease
When Thuy Le went to Vietnam in 2008 to conduct research on HIV drug resistance, what she saw in the country’s AIDS hospitals changed the course of her career.
About one in 10 patients she encountered were suffering from a mysterious infection she had never seen before. Most had dark, bumpy lesions on their face and arms, signaling a dangerous attack in their bodies. While the local doctors were familiar with the disease, there was no consensus and little medical guidance on how to treat it. And the disease was stunningly brutal, killing nearly a third of those it afflicted. Just diagnosing the infection took weeks, and sometimes patients died before the tests came back positive.
“I had never seen anything like it,” says Le, M.D., Ph.D., an associate professor of medicine, molecular genetics and microbiology and a faculty affiliate in the Duke Global Health Institute. “For a disease that common, and that kills one out of three people, to have no treatment studies was just unacceptable.”
The disease, known at the time as penicilliosis, is one Le now knows better than just about anyone in the world. She helped give it a new name – talaromycosis, to be in line with the fungus causing it, Talaromyces marneffei – and defied the first clinically tested treatment, which became the standard of care in 2019.
And now, after a decade of fighting to put talaromycosis on the medical and scientific agenda, Le wants to see the disease neglected.
But neglect, in this case, would be a good thing. Le is spearheading a campaign to have talaromycosis added to the World Health Organization’s official list of neglected tropical diseases (NTDs), which carries significant weight in shaping public health research and policy.