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Around 2018, Diango Tunkara began having trouble seeing at night.

“I didn’t know what happened,” she says in Bambara, the language spoken in her native Mali. “Every day it got worse and worse.”

Finally, a doctor told her she had trachoma, the leading infectious cause of blindness. Chlamydia trachomatisbacteria that causes swelling of the eyelids and scarring. Over time, eyelashes can curl inward, and their constant combing over the cornea leads to vision loss. Tunkara's problems indicated that this had already begun.

But the 51-year-old's troubles ended in 2022 thanks to a program funded by the US Agency for International Development. USAID paid for her antibiotic treatment and surgery to put her eyelashes back as part of the agency's efforts to combat a group of debilitating conditions known as “neglected tropical diseases” or NTDs, such as trachoma.

“If it hadn’t been done on time, I would have been sitting at home blind,” she says.

In fact, Tunkara had known about trachoma for a long time. For approximately two decades, her work involved distributing medications to local communities to treat and prevent NTDS. This USAID-funded work has paid off. Trachoma will be eliminated in Mali by 2023. It is also close to defeating lymphatic filariasis – a disease that causes debilitating swelling of body parts – and is battling several others.

Now this progress is under threat. In January, the Trump administration cut funding USAID Neglected Tropical Diseases Program. “We were planning to meet with the local community when we heard about the freeze,” Tunkara says. Now she is unemployed. “I felt completely cheated,” she says.

Mamadou Coulibaly, who coordinates several NTD eradication programs at Mali's Ministry of Health, shares the same opinion. “It was like being struck by lightning,” he says. “This lack of funding has completely stopped our activities,” he says. This includes working to rid communities of disease, as well as regular testing after treatment to ensure that the disease is truly gone.

USAID paid for the diagnostic testing kits to conduct this monitoring and helped pay people for the tests. Without those staff, the tests sit in warehouses and expire in February, Coulibaly said.

“We have been looking for partners left and right, but to date we have not found reliable funding,” he says. This could pave the way for the return of extinct diseases like trachoma—in Mali and in more than a dozen other countries USAID has worked with.

“These are diseases that make a person completely disabled, as if he cannot work, and have a very difficult impact on the development of the country,” says Coulibaly. This is especially true in low-resource areas where it is more difficult to live with a disability. “We're going to take a step back,” he says.

List of 21

Neglected tropical diseases get their name because they are typically overlooked in global health efforts. There are 21 diseases in this category, including onchocerciasis or river blindness, schistosomiasisa snail-borne infection that causes fever and diarrhea, and cysticercosiscaused by tapeworms that can infect the brain. They affect more than 1 billion people and can cause profound disability. And they have been around for a long time.

“You can go back and see examples of these diseases in hieroglyphs,” says Emily Wainwright, who led USAID NTD program strategy until she was fired in January. But because NTDs are not typically fatal and tend to affect the most marginalized populations, they do not receive the same attention—or money—as bigger killers like HIV or malaria.

But these diseases did not go unnoticed by a group of researchers who, in the early 2000s, began hatching plans for what would become USAID's NTD program.

“A group of scientists went to the hill and emphasized that there was a known strategy for treating infected communities,” says Wainwright. “You come in and treat them once a year, and if you do that for a certain number of years, you can either eliminate or control the disease.”

In 2006, USAID's counterterrorism program officially launched with bipartisan support and a budget of just $15 million. This is not enough to purchase the huge quantities of medicine needed to flood the region and treat people. But pharmaceutical companies offered to donate drugs on the condition that they be distributed. USAID also helps countries monitor territories after treatment.

“The program is built on private and public partnerships with pharmaceutical companies that donate drugs to countries and the U.S. program,” says Lisa Rotondo, a global health consultant who has worked on various USAID-funded NTD programs. Since NTD's launch, pharmaceutical companies have donated more than $31 billion for drugs. They did this on the assumption that the U.S. would support countries in delivering them so they wouldn't go to waste, Rotondo said.

Although the money came from the United States, it was mostly locals in affected countries like Tunkara who delivered medicine to those in need by going door-to-door. According to Tunkara, local residents were aware of the burden of these diseases and were generally encouraged by the campaigns. “It’s kind of a celebration before the campaign starts.”

In just 20 years, USAID's NTD program has made a significant impact in the fight against these diseases. With nearly a billion taxpayer dollars in that time, the program has treated 1.7 billion people and eliminated at least one NTD in 14 different countries.

“When the program started, the idea of ​​eliminating the disease was ambitious,” says Wainwright. Before the cuts, about a dozen other countries were on track to eliminate another NTD over the next few years, she said.

“I think this was one of the most effective and cost-effective programs USAID has ever implemented,” says Angela Weaver, vice president for neglected tropical diseases at Helen Keller Internationala non-profit organization that has received USAID funds to help countries eliminate NTDs. This is supported by research suggesting that this approach can treat NTDs in less than 50 cents per person.

Last year, the NTD program budget was $114 million. “This is a rounding error for larger global health budgets, but these are still U.S. taxpayer dollars,” Weaver says. “To see that just erased is really devastating.”

A Certain Farewell

Countries that relied on funding are struggling to maintain these programs.

In Mali, “we are currently in the process of mobilizing domestic resources and seeking funding from various sources,” says Coulibaly. “We may get some money, but it won't be enough,” he says, since the US has provided about 90% of the funds used to fight NTDs in Mali.

“I'm concerned that neglected tropical diseases will become even more neglected,” says Weaver. Reduction in foreign aid influenced programs for other diseases also from HIV to malaria. “Countries have fewer resources now and will have to make really difficult decisions,” she says.

Nonprofits like Helen Keller are trying to drum up more support, with some success. But without the stability of federal funds, they were forced to curtail their operations.

“The beauty of USAID’s support is that it has been consistent,” says Weaver. “We may be able to fill in some gaps this year, but what about next year? That's what really worries me.”

After the turbulent shutdown of USAID, there was some hope that the US would resume funding at least some of these NTD programs through the State Department, as both Republicans and Democrats had supported these efforts in the past. But in September the Trump administration released its 40-page “America First” global health strategy, which does not mention neglected tropical diseases.

In response to NPR's request for comment on the rationale for cutting funds for NTD programs and whether any such programs are still supported, a USAID spokesperson responded by email with a screenshot of an NPR article entitled Farewell to USAID: Reflections on the agency that President Trump disbanded and the statement: “What do you think goodbye meant?”