Around 2018, Diango Tounkara started having trouble seeing at night.
"I didn't know what was wrong," she says in Bambara, a language spoken in her native Mali. "It was getting worse and worse by the day."
Eventually, a doctor told her she had trachoma, the leading infectious cause of blindness. Chlamydia trachomatis, a bacterium, causes the eyelids to swell and scar. Eventually, eyelashes can turn inward, and their continuous raking across the cornea leads to vision loss. Tounkara's problems suggested that had already started.
But the 51-year-old's problems ended in 2022, thanks to a program financed by the United States Agency for International Development. USAID paid for her antibiotic treatment and surgery to turn back her eyelashes as part of the agency's effort to fight a group of debilitating conditions known as "neglected tropical diseases," or NTDs, like trachoma.
"If this wasn't done on time, I'd be sitting at home as a blind person," she says.
In fact, Tounkara had long known about trachoma. For about two decades, her job has been to distribute drugs in local communities to treat and prevent NTDS. That work, funded by USAID, has paid off. In 2023, Mali eliminated trachoma. It's also close to snuffing out lymphatic filariasis — a disease that causes debilitating swelling of body parts — and is fighting several others.
That progress is now under threat. In January, the Trump administration cut funding to USAID's neglected tropical diseases program. "We were planning to go meet the communities when we heard about the freeze," Tounkara says. Now she's out of work. "I felt totally deceived," she says.
Mamadou Coulibaly, who coordinates several NTD elimination programs for Mali's Ministry of Health, felt similarly. "It was like a thunderbolt," he says. "This lack of financing has completely stopped our activities," he says. That includes work to help rid communities of diseases but also routine testing after treatment to ensure that a disease is actually gone.
USAID had paid for diagnostic testing kits to do that monitoring — and helped pay people to administer the tests. Without those staffers, the tests are sitting in warehouses, Coulibaly says, set to expire in February.
"We've looked for partners left and right, but as of today, we still haven't found any secure funding," he says. That could pave the way for eliminated diseases like trachoma to come back — in Mali, and more than a dozen other countries USAID worked with.
"These are diseases that make someone completely invalid, like they're unable to work, and have a very heavy impact on the development of the country," says Coulibaly. That's especially true in lower-resource areas where it's harder to live with a disability. "We are going to take a step back," he says.
A list of 21
Neglected tropical diseases got their name because they tend to be overlooked in global health efforts. There are 21 diseases in the category, including onchocerciasis or river blindness, schistosomiasis, a snail-borne infection that causes fever and diarrhea, and cysticercosis, caused by tapeworms that can infect the brain. They affect more than 1 billion people and can cause profound disability. And they've been around for a long time.
"You can go back and see examples of these diseases in hieroglyphics," says Emily Wainwright, who led the USAID NTD program's strategy until she was fired in January. But because NTDs usually aren't lethal and tend to impact the most marginalized populations, they've not gotten the same attention — or dollars — as bigger killers like HIV or malaria.
But the diseases weren't neglected by a group of researchers who in the early 2000s began hatching a plan for what would become USAID's NTD program.
"A group of scientists went to the Hill and made the point that there is a known strategy in treating communities that are infected," says Wainwright. "You go in, treat them once a year and if you do it for a set number of years, you can either eliminate or control the disease."
In 2006, USAID's NTD program officially launched with bipartisan support and a budget of just $15 million. That's not enough to buy the huge quantities of drugs necessary to flood a region and treat people. But pharmaceutical companies were offering to donate the drugs provided they get distributed. USAID also helps countries monitor areas after treatment.
"The program is built off of the private, public partnership with pharma companies, who donate the medicines to the countries and the U.S. program," says Lisa Rotondo, a global health consultant who worked on a variety of USAID-funded NTD programs. Since the NTD launch, pharmaceutical companies have donated more than $31 billion in medicines. They did so under the assumption that the U.S. would support countries in delivering them, says Rotondo, so they didn't go to waste.
Even though the money came from the U.S., it was largely locals in affected countries, like Tounkara, who got the medicines to those in need, going door-to-door. Folks in the communities knew the burden of these diseases and were usually excited by the campaigns, says Tounkara. "It is a kind of celebration before the campaign starts."
In just under 20 years, USAID's NTD program has made a significant dent in these diseases. With about a billion in taxpayer funds over that time, the program treated 1.7 billion people and eliminated at least one NTD in 14 different countries.
"When the program started, the idea of eliminating a disease was aspirational," says Wainwright. Before the cuts, she says about a dozen more countries were on track to eliminate another NTD over the next few years.
"I think it was one of the most effective and cost-efficient programs that USAID has ever had," says Angela Weaver, vice president of neglected tropical diseases at Helen Keller Intl, a nonprofit that had received USAID funds to help countries eliminate NTDs. That's backed up by research suggesting the approach can treat NTDs for less than 50 cents a person.
Last year, the NTD program's budget was $114 million. "It's a rounding error for the bigger global health budgets, but those are still U.S. taxpayer dollars.," Weaver says. "To see that just wiped away is really devastating."
A definite "farewell"
Countries that have relied on funding are struggling to keep these programs going.
In Mali, "we're currently in the process of mobilizing domestic resources and seeking financing from various sources," says Coulibaly. "We are able to obtain some money, but it's just going to be insufficient," he says, since the U.S. had provided roughly 90% of the funds used to fight NTDs in Mali.
"I worry that neglected tropical diseases are going to be even more neglected," says Weaver. Foreign aid cuts have impacted other disease programs too, from HIV to malaria. "Countries now have fewer resources, and they're going to have to make really difficult decisions," she says.
Non-profits like Helen Keller are trying to drum up additional support, with some success. But without the stability of federal funds, they've been forced to scale back their activities.
"The beauty of the USAID support was that it was consistent," says Weaver. "We might be able to fill some of the gaps this year, but what about next year? That's where I'm really concerned."
After the tumultuous dismantling of USAID, there was some hope that the U.S. would resume funding at least some of these NTD programs through the State Department, since both Republicans and Democrats have supported the effort in the past. But in September, the Trump administration released its 40-page America First Global Health Strategy with no mention of neglected tropical diseases.
In response to an NPR request for comment on the rationale for cutting funds for NTD programs and whether any such programs were still being supported, a USAID spokesperson responded via email with a screenshot of an NPR story headlined Farewell to USAID: Reflections on the agency that President Trump dismantled and a statement — "What do you think farewell meant?"
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