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A nurse operates on a patient with trachoma in Ethiopia. Trachoma is considered a neglected tropical disease, caused by bacterial infection and can lead to blindness.

Marco Simoncelli/AFP/via Getty Images

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Marco Simoncelli/AFP/via Getty Images

Around 2018, Diango Tounkara started having difficulty seeing at night.

“I didn’t know what was wrong,” she said in Bambara, a language spoken in her native Mali. “It was getting worse and worse every day.”

Eventually, a doctor told her she had trachoma, the leading infectious cause of blindness. Chlamydia trachomatisa bacteria, causes swelling and scarring of the eyelids. Eventually, the eyelashes may curl inward and their continued raking across the cornea results in vision loss. Tounkara’s problems suggested that this had already started.

But the 51-year-old’s problems ended in 2022, thanks to a program funded by the U.S. Agency for International Development. USAID funded her antibiotic treatment and surgery to recede her eyelashes as part of the agency’s efforts to combat a group of debilitating illnesses known as “neglected tropical diseases” or NTDs, such as trachoma.

“If this wasn’t done in time, I would be at home blind,” she says.

In fact, Tounkara had known about trachoma for a long time. For approximately two decades, his work has involved distributing medications to local communities to treat and prevent NTDS. This work, funded by USAID, has borne fruit. In 2023, Mali eliminated trachoma. It is also close to eradicating lymphatic filariasis – a disease that causes debilitating swelling in parts of the body – and fighting several others.

This progress is now under threat. In January, the Trump administration cut funding in the USAID Neglected Tropical Diseases Program. “We had planned to meet the communities when we heard about the frost,” says Tounkara. Now she is out of work. “I felt totally cheated,” she says.

Mamadou Coulibaly, who coordinates several NTD elimination programs for Mali’s Ministry of Health, shares the same sentiment. “It was like love at first sight,” he says. “This lack of funding has completely stopped our activities,” he says. This includes work to rid communities of disease, but also routine testing after treatment to ensure that a disease is truly gone.

USAID funded diagnostic test kits to do this tracking – and helped pay people to administer the tests. Without that staff, tests remain in warehouses, Coulibaly says, and are set to expire in February.

“We looked for partners everywhere, but to date we still haven’t found secure funding,” he says. This could pave the way for the return of eliminated diseases like trachoma – in Mali and more than a dozen other countries with which USAID has worked.

“These are illnesses that render someone completely disabled, like unable to work, and which have a very heavy impact on the development of the country,” explains Coulibaly. This is particularly true in low-resource areas where it is more difficult to live with a disability. “We’re going to take a step back,” he said.

A list of 21

Neglected tropical diseases get their name because they tend to be overlooked in global health efforts. There are 21 diseases in the category, including onchocerciasis or river blindness, schistosomiasisa snail-borne infection that causes fever and diarrhea, and cysticercosiscaused by tapeworms which can infect the brain. They affect more than a billion people and can cause profound disabilities. 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 strategy for USAID’s NTD program until her dismissal in January. But because neglected tropical diseases are generally not deadly and tend to affect the most marginalized populations, they have not received the same attention – or funding – as deadlier diseases like HIV or malaria.

But these diseases were not neglected by a group of researchers who, in the early 2000s, began developing a plan for what would become USAID’s NTD program.

“A group of scientists went to the Hill and argued that there is a known strategy for treating infected communities,” Wainwright said. “You go in, treat them once a year and if you do it for a certain number of years you can either eliminate or control the disease.”

In 2006, USAID’s MTN program officially launched with bipartisan support and a budget of only $15 million. This is not enough to purchase the enormous quantities of medicines needed to flood a region and treat the population. But the pharmaceutical companies offered to donate the drugs on the condition that they were distributed. USAID also helps countries monitor areas after treatment.

“The program relies on a private and public partnership with pharmaceutical companies, which donate the drugs to the countries and to 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 in medicines. They did this under the assumption that the United States would help countries deliver them, Rotondo explains, so as not to waste their products.

Even though the money came from the United States, it was largely people in affected countries, like Tounkara, who brought the medicines to those in need, going door to door. People in the communities knew the burden of these diseases and were generally enthusiastic about the campaigns, says Tounkara. “It’s 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 approximately one billion in public funds during this period, 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 a disease was ambitious,” says Wainwright. Before the reductions, she says 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-effective programs that USAID has ever had,” says Angela Weaver, vice president for neglected tropical diseases at Helen Keller Intl, a nonprofit that received USAID funds to help countries eliminate NTDs. This is supported by research suggesting that this approach can treat NTDs for less than 50 cents per person.

Last year, the budget for the MTN program was $114 million. “It’s a rounding error for the largest global health budgets, but it’s still American taxpayer money,” Weaver says. “To see all of this disappear is truly devastating.”

A definitive “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,” explains Coulibaly. “We are able to get money, but it will simply not be enough,” he says, since the United States has provided about 90 percent of the funds used to fight NTDs in Mali.

“I worry that neglected tropical diseases are going to get even more neglected,” Weaver says. Foreign aid cuts have impacted other disease control programs also, from HIV to malaria. “Countries now have fewer resources and will have to make very difficult decisions,” she says.

Nonprofits like Helen Keller are trying to drum up additional support, with some success. But without the stability of federal funds, they were forced to scale back their activities.

“The beauty of USAID support was that it was consistent,” says Weaver. “We may be able to fill some gaps this year, but what about next year? That’s where I’m really worried.”

After the tumultuous dismantling of USAID, there was some hope that the United States would resume funding at least some of these NTD programs through the State Department, since both Republicans and Democrats have supported this effort in the past. But in September, the Trump administration released its 40-page America First global health strategy, without any mention of neglected tropical diseases.

In response to a request for comment from NPR on the reasons for the reduction in funds for NTD programs and whether such programs were still supported, a USAID spokesperson responded via email with a screenshot of an NPR article titled Farewell to USAID: Thoughts on the agency dismantled by President Trump and a statement: “What do you think goodbye meant?”