Why Neglected Tropical Diseases Should Matter to Americans
Daisy Hernández was five years old when one of her favorite aunts was struck with a mysterious illness. Tía Dora had stayed behind in Colombia when Daisy's mother immigrated to Union City, New Jersey. A schoolteacher in her late 20s, she began suffering from fevers and abdominal pain, and her belly grew so big that people thought she was pregnant. Exploratory surgery revealed that her large intestine had swollen to ten times its normal size, and she was fitted with a colostomy bag. Doctors couldn't identify the underlying problem—but whatever it was, they said, it would likely kill her within a year or two.
Tía Dora's sisters in New Jersey—Hernández's mother and two other aunts—weren't about to let that happen. They pooled their savings and flew her to New York City, where a doctor at Columbia-Presbyterian Medical Center with a penchant for obscure ailments provided a diagnosis: Chagas disease. Transmitted by the bite of triatomine insects, commonly known as kissing bugs, Chagas is endemic in many parts of Latin America. It's caused by the parasite Trypanoma cruzi, which usually settles in the heart, where it feeds on muscle tissue. In some cases, however, it attacks the intestines or esophagus. Tía Dora belonged to that minority.
In 1980, U.S. immigration laws were more forgiving than they are today. Tía Dora was able to have surgery to remove a part of her colon, despite not being a citizen or having a green card. She eventually married a legal resident and began teaching Spanish at an elementary school. Over the next three decades, she earned a graduate degree, built a career, and was widowed. Meanwhile, Chagas continued its slow devastation. "Every couple of years, we were back in the hospital with her," Hernández recalls. "When I was in high school, she started feeling like she couldn't swallow anything. It was the parasite, destroying the muscles of her esophagus."
When Tía Dora died in 2010, at 59, her niece was among the family members at her bedside. By then, Hernández had become a journalist and fiction writer. Researching a short story about Chagas disease, she discovered that it affected an estimated 6 million people in South America, Central America, and Mexico—as well as 300,000 in the United States, most of whom were immigrants from those places. "I was shocked to learn it wasn't rare," she says. "That made me hungry to know more about this disease, and about the families grappling with it."
Hernández's curiosity led her to write The Kissing Bug, a lyrical hybrid of memoir and science reporting that was published in June. It also led her to another revelation: Chagas is not unique. It's among the many maladies that global health experts refer to as neglected tropical diseases—often-disabling illnesses that afflict 1.7 billion people worldwide, while getting notably less attention than the "big three" of HIV/AIDs, malaria, and tuberculosis. NTDs cause fewer deaths than those plagues, but they wreak untold suffering and economic loss.
Shortly before Hernández's book hit the shelves, the World Health Organization released its 2021-2030 roadmap for fighting NTDs. The plan sets targets for controlling, eliminating, or eradicating all the diseases on the WHO's list, through measures ranging from developing vaccines to improving healthcare infrastructure, sanitation, and access to clean water. Experts agree that for the campaign to succeed, leadership from wealthy nations—particularly the United States—is essential. But given the inward turn of many such countries in recent years (evidenced in movements ranging from America First to Brexit), and the continuing urgency of the COVID-19 crisis, public support is far from guaranteed.
As Hernández writes: "It is easier to forget a disease that cannot be seen." NTDs primarily affect residents of distant lands. They kill only 80,000 people a year, down from 204,000 in 1990. So why should Americans to bother to look?
Breaking the circle of poverty and disease
The World Health Organization counts 20 diseases as NTDs. Along with Chagas, they include dengue and chikungunya, which cause high fevers and agonizing pain; elephantiasis, which deforms victims' limbs and genitals; onchocerciasis, which causes blindness; schistosomiasis, which can damage the heart, lungs, brain, and genitourinary system; helminths such as roundworm and whipworm, which cause anemia, stunted growth, and cognitive disabilities; and a dozen more. Such ailments often co-occur in the same patient, exacerbating each other's effects and those of illnesses such as malaria.
NTDs may be spread by insects, animals, soil, or tainted water; they may be parasitic, bacterial, viral, or—in the case of snakebite envenoming—non-infectious. What they have in common is their longtime neglect by public health agencies and philanthropies. In part, this reflects their typically low mortality rates. But the biggest factor is undoubtedly their disempowered patient populations.
"These diseases occur in the setting of poverty, and they cause poverty, because of their chronic and debilitating effects," observes Peter Hotez, dean of the National School of Tropical Medicine at Baylor University and co-director of the Texas Children's Hospital for Vaccine Development. And historically, the everyday miseries of impoverished people have seldom been a priority for those who set the global health agenda.
That began to change about 20 years ago, when Hotez and others developed the conceptual framework for NTDs and early proposals for combating them. The WHO released its first roadmap in 2012, targeting 17 NTDs for control, elimination, or eradication by 2020. (Rabies, snakebite, and dengue were added later.) Since then, the number of people at risk for NTDs has fallen by 600 million, and 42 countries have eliminated at least one such disease. Cases of dracunculiasis—known as Guinea worm disease, for the parasite that creates painful blisters in a patient's skin—have dropped from the millions to just 27 in 2020.
Yet the battle is not over, and the COVID-19 pandemic has disrupted prevention and treatment programs around the globe.
A new direction — and longstanding obstacles
The WHO's new roadmap sets even more ambitious goals for 2030. Among them: reducing by 90 percent the number of people requiring treatment for NTDs; eliminating at least one NTD in another 100 countries; and fully eradicating dracunculiasis and yaws, a disfiguring skin infection.
The plan also places an increased focus on "country ownership," relying on nations with high incidence of NTDs to design their own plans based on local expertise. "I was so excited to see that," says Kristina Talbert-Slagle, director of the Yale College Global Health Studies program. "No one is a better expert on how to address these situations than the people who deal with it day by day."
Another fresh approach is what the roadmap calls "cross-cutting" targets. "One of the really cool things about the plan is how much it emphasizes coordination among different sectors of the health system," says Claire Standley, a faculty member at Georgetown University's Center for Global Health Science and Security. "For example, it explicitly takes into account the zoonotic nature of many neglected tropical diseases—the fact that we have to think about animal health as well as human health when we tackle NTDs."
Whether this grand vision can be realized, however, will depend largely on funding—and that, in turn, is a question of political will in the countries most able to provide it. On the upside, the U.S. has ended its Trump-era feud with the WHO. "One thing that's been really encouraging," says Standley, "has been the strong commitment toward global cooperation from the current administration." Even under the previous president, the U.S. remained the single largest contributor to the global health kitty, spending over $100 million annually on NTDs—six times the figure in 2006, when such financing started.
On the downside, America's outlay has remained flat for several years, and the Biden administration has so far not moved to increase it. A "back-of-the-envelope calculation," says Hotez, suggests that the current level of aid could buy medications for the most common NTDs for about 200 million people a year. But the number of people who need treatment, he notes, is at least 750 million.
Up to now, the United Kingdom—long the world's second-most generous health aid donor—has taken up a large portion of the slack. But the UK last month announced deep cuts in its portfolio, eliminating 102 previously supported countries and leaving only 34. "That really concerns me," Hotez says.
The struggle for funds, he notes, is always harder for projects involving NTDs than for those aimed at higher-profile diseases. His lab, which he co-directs with microbiologist Maria Elena Bottazzi, started developing a COVID-19 vaccine soon after the pandemic struck, for example, and is now in Phase 3 trials. The team has been working on vaccines for Chagas, hookworm, and schistosomiasis for much longer, but trials for those potential game-changers lag behind. "We struggle to get the level of resources needed to move quickly," Hotez explains.
Two million reasons to care
One way to prompt a government to open its pocketbook is for voters to clamor for action. A longtime challenge with NTDs, however, has been getting people outside the hardest-hit countries to pay attention.
The reasons to care, global health experts argue, go beyond compassion. "When we have high NTD burden," says Talbert-Slagle, "it can prevent economic growth, prevent innovation, lead to more political instability." That, in turn, can lead to wars and mass migration, affecting economic and political events far beyond an affected country's borders.
Like Hernández's aunt Dora, many people driven out of NTD-wracked regions wind up living elsewhere. And that points to another reason to care about these diseases: Some of your neighbors might have them. In the U.S., up to 14 million people suffer from neglected parasitic infections—including 70,000 with Chagas in California alone.
When Hernández was researching The Kissing Bug, she worried that such statistics would provide ammunition to racists and xenophobes who claim that immigrants "bring disease" or exploit overburdened healthcare systems. (This may help explain some of the stigma around NTDs, which led Tía Dora to hide her condition from most people outside her family.) But as the book makes clear, these infections know no borders; they flourish wherever large numbers of people lack access to resources that most residents of rich countries take for granted.
Indeed, far from gaming U.S. healthcare systems, millions of low-income immigrants can't access them—or must wait until they're sick enough to go to an emergency room. Since Congress changed the rules in 1996, green card holders have to wait five years before they can enroll in Medicaid. Undocumented immigrants can never qualify.
Closing the great divide
Hernández uses a phrase borrowed from global health crusader Paul Farmer to describe this access gap: "the great epi divide." On one side, she explains, "people will die from cancer, from diabetes, from chronic illnesses later in life. On the other side of the epidemiological divide, people are dying because they can't get to the doctor, or they can't get medication. They don't have a hospital anywhere near them. When I read Dr. Farmer's work, I realized how much that applied to neglected diseases as well."
When it comes to Chagas disease, she says, the epi divide is embodied in the lack of a federal mandate for prenatal or newborn screening. Each year, according to the Centers for Disease Control and Prevention, up to 300 babies in the U.S. are born with Chagas, which can be passed from the mother in utero. The disease can be cured with medication if treated in infancy. (It can also be cured in adults in the acute stage, but is seldom detected in time.) Yet the CDC does not require screening for Chagas—even though newborns are tested for 15 diseases that are less common. According to one study, it would be 10 times cheaper to screen and treat babies and their mothers than to cover the costs related to the illness in later years. Few states make the effort.
The gap that enables NTDs to persist, Hernández argues, is the same one that has led to COVID-19 death rates in Black and Latinx communities that are double those elsewhere in America. To close it, she suggests, caring is not enough.
"When I was working on my book," she says, "I thought about HIV in the '80s, when it had so much stigma that no one wanted to talk about it. Then activists stepped up and changed the conversation. I thought a lot about breast cancer, which was stigmatized for years, until people stepped forward and started speaking out. I thought about Lyme disease. And it wasn't only patients—it was also allies, right? The same thing needs to happen with neglected diseases around the world. Allies need to step up and make demands on policymakers. We need to make some noise."
Your phone could show if a bridge is about to collapse
In summer 2017, Thomas Matarazzo, then a postdoctoral researcher at the Massachusetts Institute of Technology, landed in San Francisco with a colleague. They rented two cars, drove up to the Golden Gate bridge, timing it to the city’s rush hour, and rode over to the other side in heavy traffic. Once they reached the other end, they turned around and did it again. And again. And again.
“I drove over that bridge 100 times over five days, back and forth,” says Matarazzo, now an associate director of High-Performance Computing in the Center for Innovation in Engineering at the United States Military Academy, West Point. “It was surprisingly stressful, I never anticipated that. I had to maintain the speed of about 30 miles an hour when the speed limit is 45. I felt bad for everybody behind me.”
Matarazzo had to drive slowly because the quality of data they were collecting depended on it. The pair was designing and testing a new smartphone app that could gather data about the bridge’s structural integrity—a low-cost citizen-scientist alternative to the current industrial methods, which aren’t always possible, partly because they’re expensive and complex. In the era of aging infrastructure, when some bridges in the United States and other countries are structurally unsound to the point of collapsing, such an app could inform authorities about the need for urgent repairs, or at least prompt closing the most dangerous structures.
There are 619,588 bridges in the U.S., and some of them are very old. For example, the Benjamin Franklin Bridge connecting Philadelphia to Camden, N.J., is 96-years-old while the Brooklyn Bridge is 153. So it’s hardly surprising that many could use some upgrades. “In the U.S., a lot of them were built in the post-World War II period to accommodate the surge of motorization,” says Carlo Ratti, architect and engineer who directs the Senseable City Lab at Massachusetts Institute of Technology. “They are beginning to reach the end of their life.”
According to the 2022 American Road & Transportation Builders Association’s report, one in three U.S. bridges needs repair or replacement. The Department of Transportation (DOT) National Bridge Inventory (NBI) database reveals concerning numbers. Thirty-six percent of U.S. bridges need repair work and over 78,000 bridges should be replaced. More than 43,500 bridges are rated in poor condition and classified as “structurally deficient” – an alarming description. Yet, people drive over them 167.5 million times a day. The Pittsburgh bridge which collapsed in January this year—only hours before President Biden arrived to discuss the new infrastructure law—was on the “poor” rating list.
Assessing the structural integrity of a bridge is not an easy endeavor. Most of the time, these are visual inspections, Matarazzo explains. Engineers check cracks, rust and other signs of wear and tear. They also check for wildlife—birds which may build nests or even small animals that make homes inside the bridge structures, which can slowly chip at the structure. However, visual inspections may not tell the whole story. A more sophisticated and significantly more expensive inspection requires placing special sensors on the bridge that essentially listen to how the bridge vibrates.
“Some bridges can afford expensive sensors to do the job, but that comes at a very high cost—hundreds of thousands of dollars per bridge per year,” Ratti says.
We may think of bridges as immovable steel and concrete monoliths, but they naturally vibrate, oscillating slightly. That movement can be influenced by the traffic that passes over them, and even by wind. Bridges of different types vibrate differently—some have longer vibrational frequencies and others shorter ones. A good way to visualize this phenomenon is to place a ruler over the edge of a desk and flick it slightly. If the ruler protrudes far off the desk, it will vibrate slowly. But if you shorten the end that hangs off, it will vibrate much faster. It works similarly with bridges, except there are more factors at play, including not only the length, but also the design and the materials used.
The long suspension bridges such as the Golden Gate or Verrazano Narrows, which hang on a series of cables, are more flexible, and their vibration amplitudes are longer. The Golden Gate Bridge can vibrate at 0.106 Hertz, where one Hertz is one oscillation per second. “Think about standing on the bridge for about 10 seconds—that's how long it takes for it to move all the way up and all the way down in one oscillation,” Matarazzo says.
On the contrary, the concrete span bridges that rest on multiple columns like Brooklyn Bridge or Manhattan Bridge, are “stiffer” and have greater vibrational frequencies. A concrete bridge can have a frequency of 10 Hertz, moving 10 times in one second—like that shorter stretch of a ruler.
The special devices that can pick up and record these vibrations over time are called accelerometers. A network of these devices for each bridge can cost $20,000 to $50,000, and more—and require trained personnel to place them. The sensors also must stay on the bridge for some time to establish what’s a healthy vibrational baseline for a given bridge. Maintaining them adds to the cost. “Some bridges can afford expensive sensors to do the job, but that comes at a very high cost—hundreds of thousands of dollars per bridge per year,” Ratti says.
Making sense of the readouts they gather is another challenge, which requires a high level of technical expertise. “You generally need somebody, some type of expert capable of doing the analysis to translate that data into information,” says Matarazzo, which ticks up the price, so doing visual inspections often proves to be a more economical choice for state-level DOTs with tight budgets. “The existing systems work well, but have downsides,” Ratti says. The team thought the old method could use some modernizing.
Smartphones, which are carried by millions of people, contain dozens of sensors, including the accelerometers capable of picking up the bridges’ vibrations. That’s why Matarazzo and his colleague drove over the bridge 100 times—they were trying to pick up enough data. Timing it to rush hour supported that goal because traffic caused more “excitation,” Matarazzo explains. “Excitation is a big word we use when we talk about what drives the vibration,” he says. “When there's a lot of traffic, there's more excitation and more vibration.” They also collaborated with Uber, whose drivers made 72 trips across the bridge to gather data in different cars.
The next step was to clean the data from “noise”—various vibrations that weren’t relevant to the bridge but came from the cars themselves. “It could be jumps in speed, it could be potholes, it could be a bunch of other things," Matarazzo says. But as the team gathered more data, it became easier to tell the bridge vibrational frequencies from all others because the noises generated by cars, traffic and other things tend to “cancel out.”
The team specifically picked the Golden Gate bridge because the civil structural engineering community had studied it extensively over the years and collected a host of vibrational data, using traditional sensors. When the researchers compared their app-collected frequencies with those gathered by 240 accelerometers formerly placed on the Golden Gate, the results were the same—the data from the phones converged with that from the bridge’s sensors. The smartphone-collected data were just as good as those from industry devices.
The study authors estimate that officials could use crowdsourced data to make key improvements that would help new bridges to last about 14 years longer.
The team also tested their method on a different type of bridge—not a suspension one like the Golden Gate, but a concrete span bridge in Ciampino, Italy. There they compared 280 car trips over the bridge to the six sensors that had been placed on the bridge for seven months. The results were slightly less matching, but a larger volume of trips would fix the divergence, the researchers wrote in their study, titled Crowdsourcing bridge dynamic monitoring with smartphone vehicle trips, published last month in Nature Communications Engineering.
Although the smartphones proved effective, the app is not quite ready to be rolled out commercially for people to start using. “It is still a pilot version,” so there’s room for improvement, says Ratti, who co-authored the study. “But on a more optimistic note, it has really low barriers to entry—all you need is smartphones on cars—so that makes the system easy to reach a global audience.” And the study authors estimate that the use of crowdsourced data would result in a new bridge lasting about 14 years longer.
Matarazzo hopes that the app could be eventually accessible for your average citizen scientist to collect the data and supply it to their local transportation authorities. “I hope that this idea can spark a different type of relationship with infrastructure where people think about the data they're collecting as some type of contribution or investment into their communities,” he says. “So that they can help their own department of transportation, their own municipality to support that bridge and keep it maintained better, longer and safer.”
Lina Zeldovich has written about science, medicine and technology for Popular Science, Smithsonian, National Geographic, Scientific American, Reader’s Digest, the New York Times and other major national and international publications. A Columbia J-School alumna, she has won several awards for her stories, including the ASJA Crisis Coverage Award for Covid reporting, and has been a contributing editor at Nautilus Magazine. In 2021, Zeldovich released her first book, The Other Dark Matter, published by the University of Chicago Press, about the science and business of turning waste into wealth and health. You can find her on http://linazeldovich.com/ and @linazeldovich.
The Friday Five: Sugar could help catch cancer early
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
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Here are the promising studies covered in this week's Friday Five:
- Catching cancer early could depend on sugar
- How to boost memory in a flash
- This is your brain on books
- A tiny sandwich cake could help the heart
- Meet the top banana for fighting Covid variants