For close to two decades, the U.S. Agency for International Development has partnered with countries around the world to combat neglected tropical diseases, or NTDs. The term refers to a group of diseases that affect more than a billion people, causing severe pain, disfigurement, disability and in some cases death.
They're referred to as "neglected" because they disproportionately affect populations living in extreme poverty and thus don't attract investment from the pharmaceutical industry.
Now, as part of sweeping cuts to foreign aid that began on Inauguration Day, the Trump administration has frozen $114.5 million appropriated by Congress for the NTD Program's 2025 budget. If that funding isn't restored, advocates say, nearly a billion dollars' worth of medicines donated by private pharmaceutical companies is likely to go undelivered or expire.
That's according to a statement submitted to Congress by the Neglected Tropical Diseases Roundtable, a U.S. nonprofit organization that advocates for the control and elimination of these diseases worldwide.
NTDs are parasitic and bacterial diseases that typically have complex, unfamiliar names — like "onchocerciasis," "lymphatic filariasis," "schistosomiasis," and "human African trypanosomiasis," to list just a few of the 21 NTDs prioritized by the World Health Organization.
Recognized by researchers as one of the most cost-effective interventions in global health, the control and elimination of NTDs accounts for a minute portion of U.S. foreign assistance — less than 1%. But that funding has had a major impact, primarily because private pharmaceutical companies have donated billions of dollars' worth of drugs on the condition that USAID covers the cost of distributing them. Indeed, to date the USAID NTD Program has delivered more than 3.3 billion treatments to more than 1.7 billion people. It has helped 14 countries eliminate at least one NTD and put 15 other countries on track to do so within the next five years.
Now that the program has been eliminated, advocates fear those lifesaving drugs may not reach the communities that need them.
"The pharmaceutical firms guarantee delivery of the drug to a country's storehouse, but then it's up to the country and the [nonprofit] partners to figure out how to distribute it," said Darin Evans, a former contractor with USAID. "And the big question now is how to get the drug that is already sitting in warehouses out into the field — to the communities that need it."
Advocates also worry that the pharmaceutical firms that manufacture the drugs could decide to revisit their commitments and potentially halt production entirely. "The reality is that when we go, the NTD donor space will collapse," said a former USAID staffer who asked to remain anonymous, fearing retribution from the Trump administration. "We're talking complete collapse."
The USAID NTD Program was created in 2006 when Congress appropriated $15 million for the scale-up and integration of control efforts targeting five of the most common NTDs. Researchers with the Bill and Melinda Gates Foundation wrote in a 2011 book about NTDs that the program was so effective within its first few years that it "resulted, even with a change in administration, in a significant increase in U.S. government investment." (The Gates Foundation is a sponsor of NPR and this blog.)
The lynchpin of this success, advocates say, has been the outsized contribution by pharmaceutical firms of free medicines to ministries of health in countries where these NTDs are a heavy burden. That includes 880 million treatments valued at $975 million slated for distribution in 2025. "I don't know of any other health program where the pharmaceutical [companies] have stepped up like this," Rep. Chris Smith, R-N.J., said in 2019 as he urged his colleagues to pass the End Neglected Tropical Diseases Act.
That law was passed and reiterated U.S. government support for distribution of the donated drugs, as well as mapping and surveillance of cases, spraying for mosquitoes and other vectors of disease transmission, and integrating efforts to target multiple NTDs, many of which can be addressed simultaneously.
That public-private partnership has proven to be so cost-effective that it's described by the Centers for Disease Control and Prevention as one of the "best buys" in global health. "Every $1 invested in NTDs by the U.S. government leverages $26 in donated treatments," according to the CDC, which develops global policy and guidelines for NTD control programs and conducts research aimed at improving diagnostic tests and other tools. According to the NTD Roundtable, U.S. support has led to more than $32 billion in donated medicines to date.
The former USAID staffer said that for years, Rep. Smith was a passionate champion of the bill in the House. "Now he's not saying anything," they said. "Republicans started this program and now Republicans are trashing it." Smith's congressional office did not respond to a request for comment for this article.
A model for public health programs
The global fight against NTDs began in earnest in 1974, when USAID joined other donors and national governments in establishing the Onchocerciasis Control Program. Spearheaded by the World Bank, the program aimed to rid areas of the black flies that transmit river blindness, or onchocerciasis, an ancient scourge caused by parasitic worms that can rob people of their sight. For years, that effort focused primarily on aerial spraying of the fast-flowing rivers and streams where the black flies breed.
At the time, river blindness affected an estimated 37 million people worldwide, with prevalence rates of up to 80% in large parts of West Africa. Scientists reported that in the most highly affected areas, 1 in 10 adults had been blinded by the disease and more than 1 in 3 suffered visual impairment, along with agonizing itching caused by an immune response to dead or dying worms. With few able-bodied persons left to tend the fields, food shortages forced villagers to abandon the fertile farmland in fly-infested river valleys and relocate to higher ground.
Dr. William H. Foege, a former director of the CDC who is credited with devising the global strategy that led to the eradication of smallpox in the 1970s, recalled living in villages in Nigeria where river blindness was endemic. "I would see people constantly scratching," he said, adding that the itching was, for many people, "the first thing they knew in the morning and the last thing they knew before they fell asleep."
Then came a breakthrough. A 1982 study in Senegal showed that a single dose of the antiparasitic drug ivermectin could be used to safely treat river blindness, stopping the itching and preventing blindness. Manufactured by Merck under the brand name Mectizan, ivermectin was originally developed to deworm livestock and pets. But Merck researchers suspected it might also work in humans. Though he knew the drug would never turn a profit, Roy Vagelos, then the company's chief executive, approved a budget for research and development.
Several years and millions of dollars later, Mectizan was approved for human use and Vagelos approached Foege, then head of the Atlanta-based nonprofit Task Force for Child Survival (now the Task Force for Global Health), with a proposal: Merck would donate Mectizan — "as much as needed, for as long as needed" — if the task force could devise a system to distribute the drug to affected communities in remote rural areas. Mectizan works by killing the juvenile worms that cause symptoms. However, because it doesn't kill the adult worms that produce the larvae, the drug has to be administered every six to 12 months for up to 15 years, the lifespan of the adult worm.
Thus was born the Mectizan Donation Program, the longest-running philanthropic program of its kind, which has helped five countries eliminate river blindness — including, most recently, the West African nation of Niger.
The program pioneered a model for combatting NTDs and other infectious diseases. In the nearly four decades since its launch in 1987, similar public-private partnerships have emerged to treat trachoma, which causes blindness; lymphatic filariasis (or elephantiasis); schistosomiasis, a parasitic infection that can cause liver damage; and intestinal parasites in children. Together, these programs reach more than a billion people per year in low-income countries through a strategy known as mass drug administration, whereby everyone in a given area is treated — even if they aren't sick or infected.
In addition to helping eliminate the various target diseases, mass drug administration has yielded important collateral public health benefits. "We've actually been knocking off these diseases we didn't expect," said Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine and co-director of the Texas Children's Hospital Center for Vaccine Development. Studies have shown, for example, that mass administration of ivermectin reduces the prevalence of scabies, the prevalence of African eye worm (loiasis), and the spread of malaria.
"And then there's this really extraordinary observation of declines in overall child mortality," says Hotez. Indeed, University of California San Francisco-led research supported by the Bill & Melinda Gates Foundation has shown that a twice-yearly dose of azithromycin for the elimination of trachoma, a blinding eye disease, is associated with a 14% reduction in deaths among children under 5.
Hotez, who has long crusaded against parasitic worms and co-authored the 2005 paper that rebranded them as "neglected tropical diseases," worked closely with the George W. Bush White House and members of Congress to secure the initial $15 million in funding for the USAID program.
"The support for it was so bipartisan," he says. "I would literally go from talking about NTDs at a prayer breakfast with Sam Brownback, the very conservative Republican senator from Kansas, to the office of [Democratic] Senator [Patrick] Leahy, and they would work together on it, and it wasn't a big deal because the program is so cost-effective and it was so obvious that we should fund it."
Decades of progress in peril
Now those hard-won gains are at risk of unraveling.
"It's a very long, intensive process to get rid of [river blindness]," said Evans. More than 99% of cases of river blindness occur in sub-Saharan Africa, where a number of countries are nearing elimination. While Niger is the only African country to be declared free of river blindness to date, "others — Mali, Senegal, Burkina Faso, Tanzania — are getting close," Evans said. "Now we stand to lose 40-plus years of investment toward achieving that goal."
This year the USAID NTD Program, with a budget of $114 million, had planned to distribute roughly 200 million doses via mass drug administration campaigns. About half of those were to be tablets of Mectizan, which is also used to eliminate lymphatic filariasis, a painful parasitic disease. Also known as elephantiasis, the disease can lead to abnormal enlargement of body parts, including legs, feet, toes and genitals, making it difficult for people to move or walk.
In a statement to NPR, a State Department spokesperson said USAID's NTD program was determined "to not fit within the standards laid out by Secretary Rubio for U.S. foreign assistance, which must make the United States stronger, safer, or more prosperous." The department spokesman added that supporting U.S. national security and U.S. interests "requires an agile approach. We will continue to make changes as needed."
Still, advocates remain hopeful that funding will be restored. They warn that pausing treatment will only perpetuate the problem, prolong the fight, and add to the cost. Indeed, missed rounds of mass drug administration can lead NTDs to bounce back, increasing the amount of drug needed to achieve success.
"What's frustrating is that, in so many places, we were on the brink of elimination," said Angela Weaver, vice president of NTDs at Helen Keller Intl, a nonprofit that had been supporting USAID-funded efforts to control lymphatic filariasis and trachoma in six countries in West Africa. "The cuts to USAID not only jeopardize this progress, they also risk wasting the investments made to date." Weaver, who helped launch USAID's NTD Program in 2006, says that one of the principal aims of the program in the early years was to identify the most effective and efficient strategies. "We spent a lot of time demonstrating to Congress the cost-effectiveness of the program — how we integrated different disease-specific control activities and how we scaled them up."
Weaver added that as funding increases allowed the program to expand to more countries, USAID's pharmaceutical partners increased their production capacity to meet the growing need for donated drugs. "It was unbelievable," she says. "What other program can go to a country and say hey, we have all of these drugs to treat these terrible diseases you have, and they're free?" To see the program eliminated in the name of cutting waste, fraud and abuse has been "devastating," she says. "This is about the most vulnerable people in the poorest parts of the world that just want access to basic medication."
Ironically, one of the canceled USAID contracts was a $45 million grant to support African governments and institutions in taking over the critical research needed to strengthen NTD elimination efforts in their respective countries. "Benjamin Rush, the great physician during the Revolutionary War, once said that national crimes require national punishments," said Foege. "I think destroying USAID is a national crime, and it's clear to me that, as an American, I'm now part of that crime."
Patrick Adams is a freelance journalist based in Atlanta.
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