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."
Will the Pandemic Propel STEM Experts to Political Power?
If your car won't run, you head to a mechanic. If your faucet leaks, you contact a plumber. But what do you do if your politics are broken? You call a… lawyer.
"Scientists have been more engaged with politics over the past three years amid a consistent sidelining of science and expertise, and now the pandemic has crystalized things even more."
That's been the American way since the beginning. Thousands of members of the House and Senate have been attorneys, along with nearly two dozen U.S. presidents from John Adams to Abraham Lincoln to Barack Obama. But a band of STEM professionals is changing the equation. They're hoping anger over the coronavirus pandemic will turn their expertise into a political superpower that propels more of them into office.
"This could be a turning point, part of an acceleration of something that's already happening," said Nancy Goroff, a New York chemistry professor who's running for a House seat in Long Island and will apparently be the first female scientist with a Ph.D. in Congress. "Scientists have been more engaged with politics over the past three years amid a consistent sidelining of science and expertise, and now the pandemic has crystalized things even more."
Professionals in the science, technology, engineering and medicine (STEM) fields don't have an easy task, however. To succeed, they must find ways to engage with voters instead of their usual target audiences — colleagues, patients and students. And they'll need to beat back a long-standing political tradition that has made federal and state politics a domain of attorneys and businesspeople, not nurses and biologists.
In the 2017-2018 Congress, more members of Congress said they'd worked as radio talk show hosts (seven) and as car dealership owners (six) than scientists (three — a physicist, a microbiologist, and a chemist), according to a 2018 report from the Congressional Research Service. There were more bankers (18) than physicians (14), more management consultants (18) than engineers (11), and more former judges (15) than dentists (4), nurses (2), veterinarians (3), pharmacists (1) and psychologists (3) combined.
In 2018, a "STEM wave" brought nine members with STEM backgrounds into office. But those with initials like PhD, MD and RN after their names are still far outnumbered by Esq. and MBA types.
Why the gap? Astrophysicist Rush Holt Jr., who served from 1999-2015 as a House representative from New Jersey, thinks he knows. "I have this very strong belief, based on 16 years in Congress and a long, intense public life, that the problem is not with science or the scientists," said. "It has to do with the fact that the public just doesn't pay attention to science. It never occurs to them that they have any role in the matter."
But Holt, former chief executive of the American Association for the Advancement of Science, believes change is on the way. "It's likely that the pandemic will affect people's attitudes," former congressman Holt said, "and lead them to think that they need more scientific thinking in policy-making and legislating." Holt's father was a U.S. senator from West Virginia, so he grew up with a political education. But how can scientists and medical professionals succeed if they have no background in the art of wooing voters?
That's where an organization called 314 Action comes in. Named after the first three digits of pi, 314 Action declares itself to be the "pro-science resistance" and says it's trained more than 1,400 scientists to run for public office.
In 2018, 9 out of 13 House and Senate candidates endorsed by the group won their races. In 2020, 314 Action is endorsing 12 candidates for the House (including an engineer), four for the Senate (including an astronaut) and one for governor (a mathematician in Kansas). It expects to spend $10 million-$20 million to support campaigns this year.
"Physicians, scientists and engineers are problem-solvers," said Shaughnessy Naughton, a Pennsylvania chemist who founded 314 Action after an unsuccessful bid for Congress. "They're willing to dive into issues, and their skills would benefit policy decisions that extend way beyond their scientific fields of expertise."
Like many political organizations, 314 Action focuses on teaching potential candidate how to make it in politics, aiming to help them drop habits that fail to bridge the gap between scientists and civilians. "Their first impulse is not to tell a story," public speaking coach Chris Jahnke told the public radio show "Marketplace" in 2018. "They would rather start with a stat." In a training session, Jahnke aimed to teach them to do both effectively.
"It just comes down to being able to speak about general principles in regular English, and to always have the science intertwined with basic human values," said Rep. Kim Schrier, a Washington state pediatrician who won election to Congress in 2018.
She believes her experience on the job has helped her make connections with voters. In a chat with parents about vaccines for their child, for example, she knows not to directly jump into an arcane discussion of case-control studies.
The best alternative, she said, is to "talk about how hard it is to be a parent making these decisions, feeling scared and worried. Then say that you've looked at the data and the research, and point out that pediatricians would never do anything to hurt children because we want to do everything that is good for them. When you speak heart to heart, it gets across the message and the credibility of medicine and science."
The pandemic "will hopefully awaken people and trigger a change that puts science, medicine and public health on a pedestal where science is revered and not dismissed as elitist."
Communication skills will be especially important if the pandemic spurs more Americans to focus on politics and the records of incumbents in regard to matters like public health and climate change. Thousands of candidates will have to address the nation's coronavirus response, and a survey commissioned by 314 Action suggests that voters may be receptive to those with STEM backgrounds. The poll, of 1,002 likely voters in early April 2020, found that 41%-46% of those surveyed said they'd be "much more favorable" toward candidates who were doctors, nurses, scientists and public health professionals. Those numbers were the highest in the survey compared to just 9% for lawyers.
The pandemic "will hopefully awaken people and trigger a change that puts science, medicine and public health on a pedestal where science is revered and not dismissed as elitist," Dr. Schrier said. "It will come from a recognition that what's going to get us out of this bind are scientists, vaccine development and the hard work of the people in public health on the ground."
[This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
The coronavirus pandemic exposed significant weaknesses in the country's food supply chain. Grocery store meat counters were bare. Transportation interruptions influenced supply. Finding beef, poultry, and pork at the store has been, in some places, as challenging as finding toilet paper.
In traditional agriculture models, it takes at least three months to raise chicken, six to nine months for pigs, and 18 months for cattle.
It wasn't a lack of supply -- millions of animals were in the pipeline.
"There's certainly enough food out there, but it can't get anywhere because of the way our system is set up," said Amy Rowat, an associate professor of integrative biology and physiology at UCLA. "Having a more self-contained, self-sufficient way to produce meat could make the supply chain more robust."
Cultured meat could be one way of making the meat supply chain more resilient despite disruptions due to pandemics such as COVID-19. But is the country ready to embrace lab-grown food?
According to a Good Food Institute study, GenZ is almost twice as likely to embrace meat alternatives for reasons related to social and environmental awareness, even prior to the pandemic. That's because this group wants food choices that reflect their values around food justice, equity, and animal welfare.
Largely, the interest in protein alternatives has been plant-based foods. However, factors directly related to COVID-19 may accelerate consumer interest in the scaling up of cell-grown products, according to Liz Specht, the associate director of science and technology at The Good Food Institute. The latter is a nonprofit organization that supports scientists, investors, and entrepreneurs working to develop food alternatives to conventional animal products.
While lab-grown food isn't ready yet to definitively crisis-proof the food supply chain, experts say it offers promise.
Matching Supply and Demand
Companies developing cell-grown meat claim it can take as few as two months to develop a cell into an edible product, according to Anthony Chow, CFA at Agronomics Limited, an investment company focused on meat alternatives. Tissue is taken from an animal and placed in a culture that contains nutrients and proteins the cells need to grow and expand. He cites a Good Food Institute report that claims a 2.5-millimeter sample can grow three and a half tons of meat in 40 days, allowing for exponential growth when needed.
In traditional agriculture models, it takes at least three months to raise chicken, six to nine months for pigs, and 18 months for cattle. To keep enough maturing animals in the pipeline, farms must plan the number of animals to raise months -- even years -- in advance. Lab-grown meat advocates say that because cultured meat supplies can be flexible, it theoretically allows for scaling up or down in significantly less time.
"Supply and demand has drastically changed in some way around the world and cultivated meat processing would be able to adapt much quicker than conventional farming," Chow said.
Scaling Up
Lab-grown meat may provide an eventual solution, but not in the immediate future, said Paul Mozdziak, a professor of physiology at North Carolina State University who researches animal cell culture techniques, transgenic animal production, and muscle biology.
"The challenge is in culture media," he said. "It's going to take some innovation to get the cells to grow at quantities that are going to be similar to what you can get from an animal. These are questions that everybody in the space is working on."
Chow says some of the most advanced cultured meat companies, such as BlueNal, anticipate introducing products to the market midway through next year. However, he thinks COVID-19 has slowed the process. Once introduced, they will be at a premium price, most likely available at restaurants before they hit grocery store shelves.
"I think in five years' time it will be in a different place," he said. "I don't think that this will have relevance for this pandemic, but certainly beyond that."
"Plant-based meats may be perceived as 'alternatives' to meat, whereas lab-grown meat is producing the same meat, just in a much more efficient manner, without the environmental implications."
Of course, all the technological solutions in the world won't solve the problem unless people are open-minded about embracing them. At least for now, a lab-grown burger or bluefin tuna might still be too strange for many people, especially in the U.S.
For instance, a 2019 article published by "Frontiers in Sustainable Food Systems" reflects results from a study of 3,030 consumers showing that 29 percent of U.S. customers, 59 percent of Chinese consumers, and 56 percent of Indian consumers were either 'very' or 'extremely likely' to try cultivated meat.
"Lab-grown meat is genuine meat, at the cellular level, and therefore will match conventional meat with regard to its nutritional content and overall sensory experience. It could be argued that plant-based meat will never be able to achieve this," says Laura Turner, who works with Chow at Agronomics Limited. "Plant-based meats may be perceived as 'alternatives' to meat, whereas lab-grown meat is producing the same meat, just in a much more efficient manner, without the environmental implications."
A Solution Beyond This Pandemic
The coronavirus has done more than raise awareness of the fragility of food supply chains. It has also been a wakeup call for consumers and policy makers that it is time to radically rethink our meat, Specht says. Those factors have elevated the profile of lab-grown meat.
"I think the economy is getting a little bit more steam and if I was an investor, I would be getting excited about it," adds Mozdziak.
Beyond crises, Mozdziak explains that as affluence continues to increase globally, meat consumption increases exponentially. Yet farm animals can only grow so quickly and traditional farming won't be able to keep up.
"Even Tyson is saying that by 2050, there's not going to be enough capacity in the animal meat space to meet demand," he notes. "If we don't look at some innovative technologies, how are we going to overcome that?"