This is an illness that, until 2023, was so marginal to global health that it was not even officially included among the diseases the world had agreed were neglected.

Yet its obscurity is only part of the tragedy of this deadly disease, which can destroy a child’s face in a matter of days, and which kills untold tens of thousands per year. Although noma has been known to medicine for centuries, we still cannot answer the most basic questions about it.

“I’ve got a Victorian medical textbook published in London in 1876 for [doctors] in the city, and it covers noma,” says Ainsworth. “What you read in it could have been written yesterday, because our knowledge of the disease hasn’t improved at all.”

Noma is one of the most baffling subjects I’ve ever come across in global health. To learn about it is to be bombarded by unanswered questions, each more frustrating than the last. How many children get it? Where? What causes it? And why do we still know so little?

I put these questions to three medical researchers who specialize in noma, as well as the organization funding the largest research effort ever undertaken on the disease. What emerged was an explanation for why noma has lost the competition for attention, advocacy and money at nearly every turn, even by the standards of other neglected diseases.

(And lest this all sounds too depressing, stick around until the end, because there is good reason to hope that this year may mark the beginning of a new chapter.)

A Children’s Disease of Extreme Poverty

It’s helpful to start with what we actually know about noma, with the caveat that much of this rests on educated guesses extracted from isolated cases.

Noma begins with inflamed or bleeding gums. This progresses to a painful, destructive gum infection, and then to rapidly spreading gangrene that destroys bone and soft tissue in the cheek, jaw, lips, eyes, or nose. Within mere days, it can open a hole in a child’s face.

Our best estimate is that, untreated with antibiotics, noma kills 90 percent of children who get it. Child survivors are almost always left with profound facial disfigurement, and often some level of disability.

The disease overwhelmingly infects children between two and six living in extreme poverty. Why this age and these most vulnerable children develop it remains unclear. Researchers suspect that factors like malnutrition, poor oral health, a weakened immune system, and recent illness all somehow combine with one or more microbes to trigger the disease.

Noma likely strikes tens of thousands of children each year, although no one can say how many with confidence. The World Health Organization still publicly cites a 1998 estimate of 140,000 new cases annually, although one expert I spoke with believes the true figure may be closer to 40,000. (There has never been a broad epidemiological study, for reasons we will get into.)

Today, most documented cases come from the Sahelian countries in West Africa. But the map of noma may reflect where people are looking as much as where the disease actually occurs. “Nigeria is always portrayed as the country that has a lot of noma, but Nigeria is just one of the countries that actively engages in noma advocacy, detection and surveillance,” says Anaïs Galli, a researcher at the Swiss Tropical and Public Health Institute. “There are other countries with very similar risk factors that are not on the map.”

Mozambique is one example. Until recently, the country had only 2 documented cases of noma. Then, in 2024, researchers began looking. “Now so many survivors have been found that dedicated research and treatment centers are having to be set up in the country,” Ainsworth says. “If you look for it, it’s there.”

Noma’s history also points to a stranger truth. Conditions resembling it appear in writings as far back as those of the ancient Greek physician Hippocrates’, and over the past few centuries, cases have been documented on every inhabited continent. For example, “there were a lot of cases previously reported in Europe, especially during the world wars,” including in Nazi concentration camps and among civilians “in the wartime population in the Netherlands,” says Elise Farley, a longtime noma researcher with Médecins Sans Frontières.

The pattern implies that Noma appears wherever hunger and extreme deprivation converge, then “as living conditions improve, as children have enough food and are vaccinated against routine diseases, noma almost always disappears,” Farley says.

(Researchers also strongly believe noma is not contagious, but even that remains unproven. “Probably not,” Ainsworth says, “but we can’t answer that conclusively because the data doesn’t exist.”)

Most strikingly, we still don’t know what microbes set noma in motion. I first encountered the disease earlier this year while covering a study co-authored by Ainsworth and Farley. Their team found previously unknown bacteria, called Treponema A, in 19 children with noma. It was a tantalizing clue, but hardly a solution: the bacteria could help trigger the disease, or simply thrive after noma has already taken hold.

And unlike malaria or HIV, noma may ultimately have no single culprit. It may be that Treponema A or another unidentified microbe always triggers it. Or noma may emerge only when several bugs act together as part of a far more complicated process. We simply don’t know.

No money, no research

By now you should be asking the obvious question: why do we know so damn little?

And honestly, the thinness of the research record verges on the absurd. This is a disease that, between 1843 and 2021, had fewer than 150 total scientific studies published on it. That’s so few, “that you can barely say you’ve got a field. It is a blank slate,” says Ainsworth, “in comparison, there were around 650 papers on rabies in 2021 alone.” Even worse, much of the existing research merely documents individual cases or is focused on the medical reconstruction of the facial damage left behind. Few studies have tackled the foundational questions.

The core reason behind this is that almost nobody funds research on noma.

This is partially due to the fact that it’s abnormally expensive to study this disease. Consider that noma is rare, seemingly due to a complex mix of microbes and conditions, concentrated among children whose extreme poverty leaves them largely in remote, hard-to-reach places, and progresses with extraordinary speed.

Together these factors exponentially raise the cost of any study, making major investment hard to argue for, given noma’s relatively small global caseload.

For example, to answer the basic epidemiological questions—where does it occur and how many children develop it?—scientists may have to monitor enormous numbers of children to find enough cases for a meaningful study. This would involve large, expensive teams operating far from hospitals and laboratories, sometimes amid violent conflict. And the staffing, transport, and security costs are only the beginning; every other logistical hurdle involved in reaching communities that medicine already struggles to serve will add to the bill.

Now, to answer the basic biological questions—what microbes and immune system dysfunctions cause it?—scientists face the same logistical problems, although requiring fewer children, bringing the scale and cost down. The catch is that researchers must find them early enough to provide emergency care (obviously and primarily), but also to collect biological samples before time or later infections obscure what is happening inside the mouth.

The end result? Among countless other gaps, noma has never had a broad epidemiological study, and the closest thing to an immunology study is over 50 years old.

Of course, this is all no criticism of the researchers who have kept noma science alive. The individual studies they have carried out matter, but the funding has never been sufficient to attempt the field’s biggest questions. (MSF’s support for the Treponema A study I described earlier is a notable exception.)

And, after all, where could the research money come from?

Certainly not from pharmaceutical companies. Noma offers almost no commercial incentive: pursuing the basic science to create a new treatment or rapid test would likely cost far more than companies could ever earn from selling it to a small, extremely poor patient population.

And the non-profit organizations closest to the disease often have good reason to prioritize care over research. Groups like MSF are doing their best with their own scant resources to, say, keep children alive, provide surgery, or support survivors. Faced with that reality, an expensive study can understandably feel less urgent than the child already in front of them… especially for a disease whose broadest solution is already clear.

Because the bitterest paradox at the heart of noma research is that while the disease raises endless scientific questions, we largely know how to prevent it. Noma disappeared from wealthy countries as nutrition, vaccination, sanitation, oral hygiene, and basic healthcare improved. In that sense, the ultimate cure for noma is ending extreme poverty.

The Neglect Trap

The complexity and expense of noma research is not the only reason the science has stalled. Just as important is the disease’s almost total lack of visibility.

Because the people overwhelmingly affected by noma are exceptionally poor, they are often politically marginalized. Many children die before reaching a health facility, and those who survive with severe facial disfigurement often face lifelong stigma and shame—and are frequently kept hidden from public view.

That invisibility can also be reinforced from above. Local governments often have little incentive to seek out and report cases of a disease that reflects poorly on them. “Noma is a strong indicator of inequities and neglect,” Galli says. Officially acknowledging cases can expose “where the problems are in how you manage a country.”

Taken together, this means that noma lacks many of the forces that normally build advocates and a constituency around a disease. While there is a survivor advocacy organization called Elysium, whose members helped push for noma’s recognition by the WHO, it was only founded in 2022. (Their work, and the lives of noma survivors more broadly, deserve their own story. I did not interview them for this piece, so I do not want to pretend to speak for them here.)

But the broader problem remains: it is difficult to build a movement around people who have never been counted and are often hidden from view.

You can start to see the trap noma is caught in. Without visibility, how can you build political pressure for research or even, say, celebrity advocacy? And without those, the few public or philanthropic research institutions that would be likely to fund this work (like the U.S. National Institutes of Health, the European Union, or The Wellcome Trust) are both less willing and less aware of making a costly, long-term investment.

And funders also generally want evidence of a disease to ensure that their money will produce meaningful results. But noma researchers struggle to provide that evidence… because producing it is the very thing they need funding to do! As Ainsworth put it, “If you’re just going off, ‘Listen, this is a problem. Believe me, I’ve seen it,’ funding agencies are not going to risk it.”

Ultimately, noma is stuck in a sort of doom loop of neglect: the cost and complexity of the science, the poverty and invisibility of the people affected, the lack of commercial incentive, and the absence of the basic data that might persuade anyone to invest. Each issue worsens the others.

Which makes me all the more struck by the fortitude of researchers like Farley, Ainsworth, and Galli, who have stayed with noma anyway, driven by the hope that they can move the field forward and by a deep commitment to act when so few others will.

A Path Forward

Now, it’s not all bad. There are three reasons to hope for something better.

1.) The first is the emotional power of the disease itself. It is visually shocking, and overwhelmingly affects the world’s most vulnerable children. Once seen, photos of those afflicted are hard to forget, giving the disease unusual power to generate sympathy. For example, in 1994 a TV program about noma directly inspired the creation of Hilfsaktion Noma, a small German charity (which we will return to shortly.)

Of course, those images can also become exploitative. “The ethical dilemma is how do you present noma when it is usually small children with the disease?” Galli asked, noting the ever-present risk of exposing children to lasting stigma or reducing survivors to their injuries.

2.) The second reason is the draw of sheer scientific opportunity. In most mature fields, researchers spend their careers chipping away at the edges of questions that generations before them have already defined. Not true with noma!

“Whatever question you answer is going to be a massive step forward,” Farley said. “Even if it feels like this tiny master’s project or maybe a PhD, you can make a huge difference.” Ultimately, Noma offers something vanishingly rare in modern science: the chance to build a field from the ground up.

And that’s more likely to happen now, than at any time before. After decades in which noma researchers often worked in isolation, today they increasingly form a small but closely connected community, sharing data, contacts, funding opportunities, and research infrastructure to stretch the field’s meager resources as far as they can.

3.) And lastly (and most importantly!) scientists finally have enough money to attempt research on one of noma’s biggest unanswered questions: its biological causes.

In March of this year the small German charity, Hilfsaktion Noma, committed roughly €2 million over 5 years to launch the PathNoma Alliance, a research consortium in which Ainsworth and Farley play key roles. In the broader world of medical research, €2 million is a modest sum. But for noma, it is enough to attempt something unprecedented.

Over five years, researchers will study patients across several countries, examining both the microbes in their mouths and what is happening in their immune systems.

The timing is almost absurdly serendipitous, given that it’s coming as governments across the world have slashed global-health spending. Mathis Winkler, who leads projects at Hilfsaktion Noma, told me that the charity had previously questioned how much this type of research would change: after all, we already know children need food and basic healthcare to stop it. What changed their mind is that Farley and Ainsworth presented a convincing project with a plausible path from basic science to helping children.

It’s an exciting time because the project could, hypothetically, produce an extraordinary range of findings. Researchers may finally identify the microbe (or microbes) behind noma. They may discover what is different about the immune systems of children who develop it. They could discover a biological sign of the disease that could be detected with a rapid test, allowing health workers to intervene at the earliest stages. And they may learn enough to replace today’s broad cocktail of antibiotics (the only known treatment for an active case) with something far more targeted.

Of course, none of this is assured. “But one thing is for sure. At the end of PathNoma, we will know more about noma than we’ve learned in the previous hundred years,” Ainsworth told me.

• On Monday, Reuters reported that researchers had begun the first human trials of a vaccine for this strain of Ebola. (The trial is only testing safety for now, making sure 50 people in Oxford, UK, do not suffer serious side effects.)

• Healthcare workers—from epidemiologists to gravediggers—have begun striking at several facilities in the outbreak’s epicenter because they have not been paid for months, Al Jazeera reported Wednesday.

• Since we last covered the outbreak, researchers have raised concerns that this rare strain of Ebola may spread with milder symptoms in some cases, reported The New York Times. (This may sound like good news, but it isn’t. It means more opportunities for the virus to spread unnoticed.)

• And the disease has reached two new, highly vulnerable provinces in DRC, Haut-Uélé and Tshopo.

But by far the biggest development is just where this outbreak is headed. One month ago I described it as “out of control,” which is still true. Now, if the current trajectory holds, it will also likely become the largest Ebola outbreak on record.

This should not be so surprising. Africa CDC (which is co-leading the control effort) warned a month ago that this was possible. And the World Health Organization (the other co-leader) also just announced that the disease is already spreading faster than any Ebola outbreak in history.

To be clear, we’re not there yet. So far the confirmed death toll from this outbreak—more than 700—makes this the third-deadliest Ebola outbreak on record. But that’s still only one-fifteenth of the toll from the 2013 West Africa outbreak, the deadliest in history.

But deaths alone understate how badly the response is going. Instead, there’s a better benchmark that shows just how little control responders currently have over the virus.

Still in the shadows

According to Africa CDC, the benchmark for whether a control effort is staying ahead of the outbreak, rather than chasing it, has to do with how much of the spread is traceable. It’s that at least 80 percent of new cases should appear among people responders had already identified and were monitoring, rather than being discovered only after someone becomes sick.

Unfortunately, we’re at the exact opposite point. As Dr. Chikwe Ihekweazu at the WHO recently warned that “80 per cent of new cases” are instead “coming to us from unknown chains of transmission.”

Because there’s no vaccine or effective medicine for a disease like this, defeating it depends almost entirely on finding cases quickly, isolating them and tracing everyone they may have exposed. (We have already covered why eastern DRC is arguably the hardest place in the world to do that.)

Another way of thinking about it: consider that while the official case count passed 2,000 this week, both the experts leading the response and independent models estimate that the true count may be two to four times higher. That’s pretty stark. If the response is missing somewhere between half and three-quarters of all cases, then it is also missing most opportunities to isolate patients, trace and monitor the people they exposed, disinfect contaminated spaces, and, ultimately, dispose of infected bodies through safe burials. (In DRC, many infections are passed through the ritualistic washing of dead bodies in preparation for burial.)

So, my biggest question is what, exactly, is driving this historic surge? We have already covered why conflict, mistrust and dysfunctional health systems make eastern DRC such punishing terrain for an Ebola response. But many of those same problems were present in 2018, when a similar outbreak was contained with fewer cases than this one likely has now. What is so different this time?

To tackle that question, I called Paul Spiegel, director of the Johns Hopkins Center for Humanitarian Health. I’ve spoken with Spiegel several times before; he has spent decades studying and responding to health crises in conflict zones, and few people have a better macro view of a disaster like this one than him.

So what’s going (historically) wrong?

To start, let’s dispense with the most obvious explanation for why things have gotten so much worse: that the people in charge are screwing up the response.

Spiegel says that is clearly not the case. “I think the WHO and Africa CDC are doing well,” he told me, particularly in coordinating the various organizations involved in the response, and prioritizing scarce staff and supplies where they are most needed. Of course, that does not mean the response is adequate to the crisis… it’s clearly not. Just that the limited resources available are being used as effectively as anyone could reasonably expect.

Nor did Spiegel place the blame on Congolese authorities, whom he described as “very competent in responding to the outbreak.” After all, DRC has more experience fighting Ebola than any country in the world. This is its 17th outbreak since the virus was identified in 1976.

And as we’ve covered before, this also does not look like a story of rich countries merely refusing to offer enough money. Significant money has been pledged. (Although, as the medical strikes mentioned above show, actually getting that money where it is needed is far more complicated. And we’ll see if international generosity holds as the response grows into a multibillion-dollar operation.)

Instead, the problems all circle the daunting work of restricting people’s movements and modifying behavior in eastern DRC. And the variety of challenges facing this work is hard to overstate: there is active insurgency and fighting in several of these provinces. In fact, in the three worst hit provinces (Ituri, North Kivu and South Kivu) five million people were already displaced from their homes before the Ebola outbreak.

Many communities are also awash in misinformation, including doubts that the outbreak is even real, and have good reason to mistrust both their government and foreign interlopers. Consider this March 2026 UN report, which documented 425 human-rights violations over a three month period by Congolese government forces, in the three regions mentioned above. After years of mistreatment and violence by authorities, expecting more of the same is hardly irrational. And you can understand why someone might resist naming every person they have recently seen, or surrendering the care or body of someone they love, all for a reason they may not even believe.

Spiegel also described the anger and resentment that builds when the “big white UN cars” arrive for acute crises like Ebola, then seemingly disappear while people continue dying from everything else. From the local perspective, it’s easy to interpret that outsiders “only come in when [they] care about the potential for an outbreak to spread elsewhere,” he explained. (Neither of us agree this is the full picture, but I think it’s a fair point!)

Still, much of that was also true in 2018. So again, why is this outbreak historically worse? Spiegel’s honest answer was that we can’t yet know. There are several changes over the last decade that have altered the dynamics of an already extraordinarily difficult region.

1. Certainly, some of the ongoing conflicts are worse. For example, the Rwandan-backed M23 rebel group now controls territory in North and South Kivu that operates “almost like a different country,” complete with borders and checkpoints, he said. That includes areas, like the regional metropolis of Goma, that served as the headquarters of the 2018 Ebola response. And moving people and material through these territories is deeply challenging.

2. Misinformation has also intensified globally, and eastern DRC has not been immune. This BBC article dives into the intensity of today’s misinformation, which is wild.

3. This outbreak’s epicenter is a chaotic mining area, with people constantly moving in and out, which carries particular challenges to tracing infections and keeping exposed people under watch.

4. And Spiegel stressed that, certainly, unlike in 2018, responders have neither an effective treatment nor a vaccine, because this is the rarer Bundibugyo strain.

5. Lastly, the outbreak appears to have gone undetected for weeks, perhaps months, for reasons that remain unclear. Possible explanations include early cases being mistaken for tuberculosis, the milder symptoms described above allowing infections to pass unnoticed, and the nonfunctional state of laboratories in rebel-held Goma.

So, ultimately, the answer to why the 2018 outbreak tipped toward control, while this one keeps spiraling… well, it’s probably found somewhere in this messy, non-exhaustive combination of factors.

Exponential trouble

I also asked Spiegel about a larger problem: what should we expect to change once an outbreak like this crosses into historic territory? It’s an important question because—without getting too in-the-weeds—some medical demands scale roughly in a straight line. For example, twice as many patients require roughly twice as much medicine, for roughly twice the cost.

But other parts of a response become exponentially more difficult once the existing system is overwhelmed. Imagine a laboratory that can, at first, process twice as many tests for roughly twice the cost. Eventually, it hits capacity. At that point, you need another laboratory, more equipment and more technicians just to keep up.

Ebola creates these exponential pressures everywhere, because every new case can create another circle of people who must be found and monitored for 21 days, rapidly meeting the limits of laboratories, treatment centers and tracing teams.

Unfortunately, Spiegel believes we have already crossed that threshold. “Sadly, we’re at that point now,” he told me. “At one point, there are just so many cases that the classic way of trying to contain and control is overwhelmed,” Spiegel said. “We’re there now. Not out front, we’re actually quite behind,” he said.

The takeaway is that we’re now looking down the barrel of a massive need to increase resources for this response. And getting international groups to pledge more money is only a fraction of the problem. Yes, “you need a significant increase in laboratories and treatment centers,” he said. “It’s all of that, but it’s not just [infrastructure]. It’s actually a lot of asks in terms of the community. You’re going to have to significantly increase contact tracers and community outreach and health workers,” he said. “And that’s going to require more training, because you have to hire way more people who haven’t necessarily been trained.”

There are some grim implications here, because none of these systems can be expanded, or these people hired, overnight.

So what’s the outlook from here?

Spiegel and I discussed three factors that could still shape where this outbreak goes. Let me present them in ascending order of darkness:

1. The most hopeful is better medical tools. An effective treatment or vaccine could turn around the spiraling trajectory of the response; especially if it was used to protect medical and community responders. To this end, the vaccine trial announced this week is moving unusually quickly, which is, at the very least, hopeful. “The good news, at least, is that they are moving forward now,” Spiegel said. “Maybe that can make a difference, but it depends on the efficacy and the effectiveness,” of what’s ultimately developed.

2. The response itself can also improve with more funding and focus, and as communities are won over: this means more workers, labs and treatment centers, better access to hard-to-reach communities, and, somehow, greater trust. Trust is, after all, the ultimate currency for population management and control.
   …but all of that takes time, and the outbreak may just continue expanding as fast or faster than the response can grow. As Spiegel put it, trust must be built “before an outbreak occurs, not during it. We’re already behind on that.”

3. The darkest possibility is that the outbreak simply burns itself out in the hardest-to-reach communities, leaving untold thousands dead. Epidemics sometimes do, Spiegel said, “despite all of our best intentions and tendency to think that we had a major effect.”

And let me leave you with one final, even bleaker point: Ebola deaths will capture only part of the damage. Spiegel noted that these outbreaks keep pregnant women, sick children and everyone else away from clinics, while the response pulls scarce workers and resources away from treatment for malaria, respiratory infections and diarrhea. (The three big killers in this part of the world.) As Spiegel warned, these wider disruptions will almost certainly kill more people than Ebola itself.

That’s all for now.
-Wm

The story broke about a week ago, but I think it’s worth zooming in on because there’s a strange mismatch that I’m not seeing fully explained elsewhere: which is that the gap that the U.S. is leaving looks manageable on paper… but warnings about what’ll happen when American dollars disappear are dire. Is this alarmism, or was the American share holding up more than it seemed?

To answer that question I want us to start with how the cuts are being publicly1 justified, because it’s not an easy argument to wave away.

As a State Department official told the New York Times, “South Africa is a middle-income country and is more than capable of supporting its own health programs.” And the reality is that there’s actually quite a lot of truth there.

South Africa is certainly not Lesotho, Tanzania or Malawi, all of which overwhelmingly depend on U.S. dollars to combat HIV. Instead, despite having the world’s largest HIV epidemic—with roughly 8 million people living with the virus—South Africa already runs one of the most self-sufficient programs in sub-Saharan Africa. It pays for the majority of its HIV response, and nearly all of the antiretroviral medicines that keep those 8 million people alive.

For its part, the United States contributed about $400 million in 2024, which covered just 17 percent of South Africa’s overall HIV response. (Compare that to Lesotho, where the U.S. pays over 80 percent.) And that contribution to South Africa was halved in 2025, to a bit over $200 million.

For now South Africa is the only country where the U.S. is walking away from the HIV response entirely, and on the surface South Africa actually looks like one of the best-placed to absorb this American pullout.

And that is largely how the South African government has tried to present the situation. Officials have stated publicly that they have “long been working on a self-reliance plan.” And that’s not an implausible claim; this is, after all, a country that already devotes an extraordinary 16.8 percent of its budget to healthcare.

But a, uh, ‘considered path forward’ is not the story you get when speaking to basically any HIV advocacy organization, researcher, or clinician group working in South Africa.

Instead, you’ll hear about how HIV prevention programs are already buckling, how the clinic system is swamped, and there are severe gaps in the basic data you need to spot where the epidemic could be growing. And, importantly, this is just the damage already visible after America cut its support in half. These experts say things will get worse.

So, I reached out to Thomas McHale, the Public Health Director at Physicians for Human Rights, and Emily Bass, an author and HIV/AIDS expert, to discuss. They both published a report earlier this year that warned about this exact scenario, which I covered when it first came out. In it, they cautioned that these cuts would create “a future surge in otherwise preventable new HIV infections [is] all but inevitable.” We spoke again about what has changed now that the U.S. exit is no longer hypothetical.

McHale and Bass started our conversation with a basic point: American dollars were not sprinkled evenly across South Africa’s HIV response. Instead, Bass said, it was “100 or 90 or 80 percent of very specific components.” That distinction matters. She compared it to losing the slice of your household budget that pays for your car’s gas: it could be a tiny fraction of your total bills, but until you replace it, the whole household can grind to a halt.

To see why America’s missing share could cause so much trouble, we talked about two parts of the response in particular.

#1: Prevention Programs Governments Don’t Like Paying For

One of the biggest, and most important, American expenses was HIV prevention. Specifically, as McHale told me, “community-based prevention,” which is a jargon-y term for finding otherwise healthy people totally outside of the formal medical system, and convincing them to do things like get tested, practice safe sex, or go on preventative medicine.

There is simply no plan for defeating HIV that doesn’t include stopping new infections. But in countries across the continent, this community-based work is politically touchy in more than a few ways (which I believe explains why the South African government wasn’t already paying for it.)

• For one, it involves special outreach to groups that governments in Sub-Saharan Africa are not always eager to serve: like sex workers, gay or bisexual men, people who use drugs, and so on. And, again, the focus is on finding healthy people before they’re sick; an expense that can be hard to justify when sick people abound.
  

• It’s also very expensive on a person-by-person basis. And it can mean funding things that look soft and frankly disposable on paper: for example, social media campaigns with queer influencers, or paying people from these marginalized communities to talk to others like them about HIV prevention.
  

• Lastly, this work often just functions better outside of a formal, government system. A sex worker, a gay teenager, or someone who uses drugs may not want to walk into a public clinic—with their neighbors watching them—and spell out their HIV risks to a government nurse. There’s the threat of shame, and the general fear of being reported on.

All told, most of these community-based prevention programs are slated to be crippled by an American pullout. And unfortunately, we don’t have to guess what South Africa’s short-term replacement plan looks like.

That’s because many of these programs were already significantly hit by the 2025 cuts. So far, the South African government’s fallback has largely been asking the formal clinic system to absorb the work of preventing HIV. But, as HIV advocacy groups like Physicians for Human Rights are already warning, this isn’t enough.

As McHale told me, if your strategy depends on otherwise healthy people choosing, all by themselves, to risk stigma and spend a full day (not a hyperbole!) at an overwhelmed clinic to ask about a disease they may have no idea they’re at risk for… you’re engineering for failure.

Bass also emphasized that the collapse of these community programs will almost certainly blunt the promise of Lenacapavir, the new twice-yearly HIV prevention shot: she said that without trusted outreach, “people won’t even know that it’s there,” and “they’re certainly not going to go wait to get tested.”

The damage from this kind of failure may show up slowly at first—with fewer tests, fewer diagnoses, fewer people on preventive treatment—but the most likely outcome will be a gradually ballooning caseload of HIV patients. By how much? Well, that brings us to our next point.

#2 A Total Breakdown in HIV Data

Even asking “how many more people are likely to get HIV because of America’s missing 17 percent?” gets to a deeper problem… which is that we may not know for a very long time.

Globally, last year’s data already points in the direction you’d expect from a collapse in successful HIV prevention. By the numbers: from 2024 to 2025, 4.7 million fewer people were tested for HIV (about 22 percent less), and 2 million fewer people were taking preventive treatment (about 10 percent less). Those are dramatic drops worldwide, and much of it due to a curtailment of the type of work we outlined above.

But understanding the South Africa-specific story is going to be far harder. That’s partly because the United States is no longer publishing detailed quarterly data on country-by-country progress, as it had for decades. But it’s also because the cuts have devastated South Africa’s data collection and electronic medical records for HIV.

As an example, Bass told me that America was underwriting “about 40 percent” of the workforce collecting HIV data in South Africa’s HIV hotspots. Add that sudden curtailment to the loss of detailed American reporting, plus (my read, not Bass’s) a government with little incentive to loudly document a crisis it does not yet have a plan to solve… and you end up with the thing advocates say is already here: a total breakdown in data.

Bass put it to me bluntly: “We think something terrible is happening, and we also think we’re not going to see it, because the data aren’t there.”

The signal she fears may come later will be the sign of total system failure, which is “more people with advanced HIV disease,” she says.

And there’s a compounding risk here. Without rigorous data showing new infections are rising, South Africa may lack the political urgency to replace the very programs that helped keep them down.

It’s on the South African Government Now

The takeaway for me is that the dire warnings about the U.S. pullout of South Africa is, ultimately, not really about the size of the funding gap America is leaving, it’s about the specific parts of the HIV response that Americans were funding.

Still, let me make one final point: because it’s important to hold both these thoughts at the same time. Yes, the U.S. is dumping this transition on South Africa in a haphazard and almost maximally-damaging way. But South Africa is not powerless here. This is a sovereign country with a roughly $400 billion economy; and one uncomfortable answer here is that it is now on the South African government to find hundreds of millions of dollars—roughly one-tenth of one percent of their GDP—to re-fund these programs and protect one of the most important public health fights in the country.

If South Africa fails to do that, then a reckless American withdrawal will become a South African governing failure too.

That’s all for now,

-Wm

The caveat is that “out of control” is not the same thing as “we know exactly how bad it is.” In some ways, the most frightening part is that we don’t. Officially, over 700 cases and nearly 200 deaths have been confirmed so far. But “no one knows the true scale or exactly where the disease is spreading in DRC,” Kate White, emergency medical coordinator for Doctors Without Borders, told Reuters this week.

For the clearest snapshot of the chaos, I’d recommend reading that full Reuters story. It’s hard to pinpoint what isn’t going wrong… Testing is nowhere near keeping pace with the epidemic. Treatment centers are being overwhelmed. Patients are fleeing care. Responders tasked with burying highly-infectious bodies are being attacked. And in some places, as one Congolese public health official has leaked, “people continue to die in communities without ever coming to the attention of health authorities.”

If you need a visual, watch the New York Times’ recent video with Declan Walsh from the front lines, which shows the kind of thing that makes even hardened epidemiologists shudder: people moving in and out of an active Ebola treatment center with essentially no precautions. The nightmare, of course, is that these people are not only risking contracting the disease and a therefore possibly horrific death themselves, but becoming the source of a brand new chain of infections.

And, ultimately, I think “nightmare” is the apt word for this out-of-control outbreak of Ebola’s Bundibugyo strain, for which there is still no approved vaccine.

Contrast this picture with the two other hemorrhagic fever outbreaks of late last year: which were an outbreak of Ebola’s Zaire strain in the central Kasaï Province of DRC (notably: an Ebola strain for which we have an effective vaccine) and a Marburg virus outbreak in southwestern Ethiopia (a virus that’s a near cousin of Ebola, with no vaccine). As I wrote for Healthbeat.org at the time, those emergency responses were conducted “close to best-case scenario.” The control efforts were extraordinarily rapid. And they drew on decades of hard-won lessons to contain and ultimately crush what might otherwise have become out-of-control epidemics.

Frankly, last year I was surprised. Both outbreaks emerged after a massive cut in the global funding for disease surveillance and emergency responses. (By one estimate, 2025 saw a 22% drop.) Successes—and brilliant successes at that!—were no sure thing. Yet the old machinery still seemed to work, and most importantly, the world ponied up the dollars needed.

This leads me to the obvious question: why is this outbreak so different, and is a drop in global health dollars a major factor at play?

It’s worth noting that outbreaks of disease like Ebola have a cruel, financial arithmetic to them: double the number of unidentified infections does not mean double the cost. It’s much worse than that. One missed patient might ultimately spark ten cases. Two missed patients don’t necessarily lead to twenty cases—they can lead to forty cases, as separate chains of transmission spread at the same time. Every additional uncaught case means exponentially more contacts to trace, more tests to run, and more people needing treatment. So, the cost of containing an outbreak rises faster than the outbreak itself.

So I wanted to know: is this outbreak spiraling because it has simply grown beyond what today’s weakened global health system can afford to contain? Or is the real problem something else? To help untangle that question, I spoke with Katharina Hauck, a leading health economist at Imperial College London who specializes in infectious disease economics. (She is part of the research team at Imperial College London that is collaborating with the World Health Organization on the real-time Ebola response.)

Are Aid Cuts to Blame?

Let’s start with what we know about the funding numbers, which are notoriously hard to pin down, even years after an outbreak is over. In 2021, Hauck published a paper trying to track dollar figures for Ebola and Zika outbreaks from the previous decade. The takeaway was that even after the fact, no one could quite agree on what had been spent, by whom, or on what. Our clearest picture left a half-billion dollar error range.

That uncertainty is at play now. When I asked Hauck how the current response is doing financially, she was careful not to pretend the exact dollar figures were knowable, but also stopped well short of sounding alarmist. “What has been pledged so far is not insignificant and quite substantial,” she told me. “We have hundreds of millions of U.S. dollars pledged to the response… with broader commitments suggesting between $400 million and $500 million total.” This all includes a mix of dollars for things like fast-tracking a vaccine for this Ebola strain, alongside on-the-ground testing, health centers and more.

Is that enough to meet the current moment? The short answer is: so far, mostly yes.

“Objectively, I find [the current pledges] quite a good commitment from the international community,” she told me, especially given that the World Health Organization and Africa CDC (who are the ones coordinating this response) have called for a plan from June to November 2026 with a total price tag of $518 million. (That said, Hauck notes that ‘pledged’ money can fall short of what’s ultimately disbursed.)

But she was equally clear that this does not mean the response is fully funded. Far from it. “I think much, much more funding will be necessary to contain this,” she said. Hauck points to the last major Ebola outbreak in eastern DRC, from 2018 to 2020, which caused nearly 3,500 cases and around 2,300 deaths. That outbreak cost an estimated $1.35 billion (!) to handle. And for that strain, we had the cost-reducing benefit of a functioning vaccine.

Today’s outbreak is on track to be far worse. We may be looking at something that looks much more like the world’s previous largest Ebola outbreak—the 2013 to 2016 outbreak in West Africa—which cost something on the order of $5 to $6 billion.

And Hauck reminded me that pledged money does not magically become an Ebola response. “There’s one thing of having funding going into the country,” she said, “but it’s another for that funding to actually make a difference on the ground.”

As she explains, the main cost in public health responses like an Ebola outbreak is ultimately people. “You need a trained workforce,” Hauck told me. “Often 70 or 80 percent of the costs are staff. You can’t overemphasize how important it is to have the staffing there.” And of course, money alone does not instantly summon trained professionals who know how to trace contacts, or convince a skeptical town to let them run safe burials, or generally manage in one of the most difficult places on earth to stop a virus.

But my big takeaway here: currently, aid funding constraints are not the driving force behind this outbreak’s downward spiral.

Ok, ok. So what is the issue?

Well, one potential answer actually is… aid cuts, just not in the reactive way we just covered.

Hauck points out that past Ebola responses in places like eastern DRC relied heavily on American foreign aid, and benefited from (the now-defunct) USAID’s deep networks of local partners already working on the ground. These were organizations that knew the communities and the health system, worked to cultivate some level of standing community trust, and could pivot fast when something strange began happening.

Today “this whole outbreak happened in a scenario where all this had been basically cut,” Hauck said. That matters because this outbreak appears to have been caught shockingly late. We’re not sure how late, exactly, but it looks like Ebola may have been spreading for over a month or more before the alarm was raised.

“I think it’s very surprising that this outbreak was detected so late,” she said. “Even if there was a cluster of unusual hemorrhagic fever which didn’t test as Ebola, major alarms should have gone off.”

Why? Well, one answer may be that aid cuts weakened the aid partner networks, clinics and surveillance systems that notice a pattern of strange deaths before they become a full-blown epidemic. But, to be clear, this is speculation. Would someone in the old system have alerted upward faster about a strange, undetected cluster of deaths? We do not know the answer yet, and may not until investigators reconstruct the outbreak’s earliest days. But it is hard to imagine last year’s aid disruptions helped.

The bigger problem, though, is the place itself.

As we discussed in the last Dispatch, eastern DRC at this moment has almost the worst possible dynamics for this exact kind of virus: dense population centers with constant movement, all alongside active conflict, little trust in authorities, and scant government services.

Conversely, last year’s hemorrhagic fever outbreaks were aided by the fact that they happened in smaller, isolated communities. Places where a virus can even run out of people to infect. Eastern DRC is not that.

And because there is no approved vaccine for the Bundibugyo strain of Ebola, the ongoing response must lean heavily on the basic playbook that requires stable, pliant communities: Finding the sick, isolating them, tracing their contacts, monitoring those contacts… all while earning enough trust that communities actually cooperate. “That is how you get an outbreak under control that has no vaccine,” Hauck said.

But that only works if communities are willing to cooperate. Hauck said the response needs “real active collaboration and commitment of the community,” and right now, “we are not doing very well” on that front. Her team’s early modeling also suggests the outbreak is not moving the same way everywhere. In some places, the response seems to be working better. In others, the virus is spreading faster. That may come down to whether health teams can get in, whether anyone is clearly in charge, and whether traumatized communities trust the people risking their lives while trying to help.

So again, are aid cuts to blame?

Not in the simplest way. The funding picture is murkier, and in some ways less dire, than I expected. But aid cuts may well have weakened the surveillance and partner networks that should have caught this outbreak earlier. And money alone cannot instantly rebuild trust or turn chaos into contact tracing.

That is the heart of this nightmare. Not just that the response needs more money, though it does. It is that this virus is moving through a place, and is in stage of an outbreak, where money can only do so much.

That’s all for now,

-Wm

We’re still just barely out of the shadow of the last pandemic, and I sense that, since COVID, we’ve lost some of our ability to separate scary-sounding diseases from genuinely threatening outbreaks.

Consider, for example, how we just turned the page on the Hantavirus-cruise-fiasco, with zero fanfare. That was a story that received an astronomical amount of coverage, despite the fact that the public worry was wildly out of step with how ‘objectively scary’ the outbreak was. (If you’d like to read more about it, I’m on record on this one.)

And for Ebola specifically, last September we watched a separate outbreak in DRC flare up, trigger a major response, and get quashed with extraordinary speed. That emergency response was particularly impressive and reassuring because it was one of the first to follow 2025’s steep drop in international emergency funding… which many warned would leave the world less able to stop outbreaks.

But this outbreak does not look like last September’s for a variety of reasons. So, to understand the outbreak in context, I spoke with Dr. Lina Moses, an epidemiologist at Tulane University. Moses was a first responder during the largest ever outbreak of Ebola, the 2013 to 2016 epidemic across West Africa. We chatted about what’s different now, and why this outbreak is causing so many alarm bells.

Here’s my takeaway up top: This is a worst-case-scenario Ebola outbreak, and I would be extremely surprised if it is contained this year, or even early next. We’re dealing with a rare strain of the virus, where our vaccines and treatments don’t work, but the real issue is where this virus is hitting. The last outbreak in this part of DRC took over two years to contain. Still, it’s worth emphasizing that this is not a COVID-like threat. I’ve had half a dozen people ask me if I’m concerned about being relatively close in Kenya, and my answer is an emphatic no. Ebola is simply not the type of disease that can spiral unchecked in any country with a semi-competent health system. So, ultimately the global risk is very low, or as Moses told me: “There is no indication at this point that people outside of this region are going to be personally affected.”

First, the basics: What is Ebola, and where exactly is the outbreak?

This particular Ebola outbreak is the Bundibugyo strain, a somewhat rarer form of the virus. That matters not because it’s more deadly or threatening (it’s not), but because the existing Ebola vaccine and treatments we’ve developed do not appear to work against it. (Luckily, as reported by Deutsche Welle, we’re seeing a rush to adapt the medicines as fast as possible.)

So far, the disease is spreading in the three highly-populated provinces in eastern Democratic Republic of the Congo—Ituri, North Kivu and South Kivu—with spillover also reported in Uganda. It’s worth noting that we’re still early enough in the outbreak that we have only a poor, fragmented picture of the initial spread. But as of May 28, the World Health Organization says there are more than 900 suspected infections and 220 suspected deaths reported so far. This is almost certainly an undercount.

While the outbreak is the 17th in the country, since Ebola was first discovered in 1976, it’s already on track to be one of the largest ever recorded. That is largely because the outbreak was detected late, after weeks or months of spread. “It is very, very concerning that we’re getting in this late,” Moses told me.

Why is eastern Congo such dangerous terrain for Ebola?

The epicenter of the outbreak is a province called Ituri, and the location itself explains a lot about why public health professionals are so worried. The province is extraordinarily underdeveloped, but not actually very remote. Remoteness is helpful, because managing fewer people and contacts makes organizing an orderly response easier. (Both the Ebola outbreak in DRC last year, and the closely-related-Marburg-virus outbreak in Ethiopia last year, were contained in remote locations.)

Instead, Ituri is densely populated, with very active and porous borders, weak government services, and decades of violent conflict continuing into the present day. This combination of people, movement, and chaos makes Ituri one of the hardest places in the world to organize the basic public health measures. That’s because isolating patients, tracing contacts, warning communities, and getting sick people medical care as fast as possible all require some level of orderly, centrally-managed systems.

Moses said it is no coincidence that the second-largest Ebola outbreak ever recorded unfolded in this same broader region in 2018. That outbreak took two years to stop, she said, “primarily because of the difficulty in implementing community-based interventions: contact tracing and infection prevention and control across all the health facilities.”

It’s also important that this outbreak has already spread into neighboring North Kivu province. North Kivu faces many of the same problems as Ituri, but with even more active conflict—making control efforts even harder. Currently, the Rwandan-backed M23 rebel group occupies a large stretch of the borderlands, including Goma, the provincial capital, which it captured in January 2025. Goma is important because the city has historically been used as the command center for hemorrhagic fever responses in eastern Congo.

The picture is still unclear, but with the city under occupation, Ebola testing facilities appear to be nonfunctional in Goma. That may be one reason the disease was detected so late. Nearly all confirmed cases so far have been identified by a laboratory in Kinshasa, the national capital, on the other side of the country. As Moses told me: “I was shocked at the low number of laboratory-confirmed cases already, and that this had to be done in Kinshasa, very far away. I was surprised that there wasn’t testing closer.”

Ok, so this bad in the normal Ebola way, or bad in a new way?

Bad in a new way, at least compared with recent outbreaks. (Moses cautioned that outbreak detection, in general, is far better than it was 10 or 15 years ago.) But by today’s standards, the outbreak was caught very late. “It does look bad, relatively speaking,” she told me.

One very worrying sign is that this outbreak will require an extraordinarily expensive response at the exact moment global emergency funding is under historic strain.

Granted, funding woes did not derail last year’s successful Ebola response in DRC, as I mentioned earlier. But those outbreaks were smaller and far easier to financially manage… because with Ebola, every individual missed case results in an exponential cost. f one sick person infects two more people unchecked, who each infect another two more people… well, that doubling effect will quickly balloon out of control. Every missed case means significantly more contacts to trace, even more people to monitor, even more healthcare workers sick, and, ultimately, that many more chances for the virus to slip into a new town or across a border.

I will underscore here that despite everything I have just said, this is still not a true global pandemic threat, largely because Ebola moves so slowly and generally requires direct contact with the visibly sick or dead. As a disease it may be terrifying and deadly, but it is still slower than any semi-competent health system and public health response.

The problem is that eastern Congo does not have that kind of health system. And the international public health response will have to work through everything from active conflict to distrustful communities that have met past Ebola responses with violence. Even more tragically, medical professionals are often among the first people infected by an Ebola outbreak, disabling the very corps of workers needed to stop the spiral.

What can we realistically expect next?

I’m not in the forecast business, but moving forward: this outbreak will almost certainly continue to spread, and cases in Burundi, South Sudan, or Rwanda over the next weeks and months would not be surprising. (I will note that Rwanda, at least, will be able to effectively manage any cases). It is also possible that isolated cases, most likely linked to infected medical workers, could travel farther. But if the worry is horror-movie spread across the world, that’s totally misplaced. This is just the wrong disease for that concern.

And what should we be watching for?

Moses told me there are two kinds of warning signs she’ll be watching for: signs the outbreak itself is spreading, and signs the response is not keeping up.

The first includes more cases crossing provincial or national borders, especially into major travel hubs. As of May 29th, we’ve seen 8 cases in Uganda so far (which is not a great sign.)

The second category is more operational. Moses said the red flags would be “a low percentage of laboratory-confirmed cases relative to suspected cases,” gaps in contact tracing, and info on whether identified contacts are actually “being monitored” through the incubation period. Other warning signs, she said, include how many health facilities are receiving protective equipment and infection-control training, and whether there are reports of “unrest or resistance against the response.”

Like Moses, I’ll be watching for signs of all of these.

And then there are health workers, which are a tragic, canary-in-the-coalmine indicator. Medical professionals are often among the first people infected by an Ebola outbreak.“People notice when healthcare workers go down,” Moses told me. “With Ebola, it tends to be clusters of healthcare workers, and they’re often the second wave, and a very large wave.” In the coming weeks, this will be a sign of how out-of-control the virus really is.

Ultimately, how does this compare to Hantavirus?

Where Hantavirus produced a global overreaction, the attention on this Ebola outbreak is absolutely warranted.

Now, that said, let me say something counterintuitive: the Andes strain of Hantavirus (the one behind the cruise fiasco) is, on paper, actually a more threatening outbreak disease than Ebola.

Yes… that sounds ridiculous after everything I’ve just written, but it’s true.

Andes hantavirus is roughly as deadly, we have similarly few medical defenses against it, but it spreads more easily, because it can move through respiratory transmission. On paper, that makes it more threatening than Ebola. But outbreaks do not happen on paper.

As Moses put it, “The biggest driver of epidemics is behavior, public health infrastructure, human behavior, and health facilities. It’s always situational.” And the situation for Ebola, merely by being in Eastern DRC, is just that much worse.

Rather than a contained cruise ship, full of mostly wealthy travelers, with public health officials from a dozen countries ready to quarantine and treat them… in DRC we have an admittedly less transmissible virus but in a far more dangerous setting: A conflict zone with damaged or nonfunctional labs, porous borders, and an abysmal health systems.

I’ll be following up on this story.

-William