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Civic Science Fellow Abbey Jones turns data and dialogue into action against Chagas disease in the U.S.

When epidemiologist Abbey Jones opened a nationwide map of Chagas disease last year, something immediately caught her eye. She had been tasked with analyzing U.S. cases of this often-missed parasitic infection using data from electronic health records databases. Jones had expected states with large Latin American immigrant populations, like California, Texas, and Florida, to dominate the data.

But there was one unanticipated hotspot: Massachusetts.

“We expected to see some cases there,” Jones says. “But Massachusetts kept showing up higher than many states with larger at-risk populations.”

Chagas disease is transmitted primarily by triatomine insects, also known as “kissing bugs” for their habit of biting near people’s mouths, and can quietly damage the heart over decades, making early detection crucial. Chagas is endemic to Latin America and found primarily in rural areas of Central and South America, so the concentration of cases in Massachusetts didn’t make epidemiological sense.

The breakthrough came during conversations with Boston clinicians: A robust local screening program explained the spike. “It wasn’t that Massachusetts had more disease,” Jones says. They just had one health center in East Boston actually looking for it.”

This revelation would become central to her Civic Science Fellowship at The Rockefeller University’s Center for Clinical and Translational Science, and Clinical Directors Network, Inc. Electronic health records databases that track 250 million people were showing just 2,000 to 4,000 Chagas cases in the United States. But the records weren’t capturing medical reality—they were mapping neglect. “These data suggest significant deficiencies in Chagas disease testing, diagnosis, and treatment,” Jomes says.

In fact, the CDC estimates nearly 300,000 people in the U.S. are infected with Chagas. “The other 298,000 remain invisible not because they’re healthy, but because no one is testing them,” Jones says. “These counts aren’t based on disease prevalence. They’re based almost entirely on access to care and screening programs.”

For funders, policymakers, and scientists, this is a key insight. Without robust, equitable screening infrastructure, even the most powerful datasets can mislead us, hiding both threats and opportunities for impact.

From pure math to public health

Jones’s path to studying real-world health impact started in a far more abstract realm. “I was a math major,” she says. “I really enjoyed that, but it’s not a field with a lot of practical, hands-on applications. I wanted to use my math skills in a way that actually has an impact on people.”

So, after graduating from the College of the Holy Cross in Worcester, Massachusetts, she joined AmeriCorps as a volunteer at a health center in East Boston—coincidentally in the same neighborhood now leading the way in Chagas disease screening. Exposure to the complexities of healthcare access led her to pursue a public health master’s degree in global epidemiology at Emory University, after which she spent eight years at the CDC working on surveillance of birth defects. During the Zika virus crisis in 2015-2016, she spent 18 months in the CDC’s Emergency Operations Center, helping to calculate the first U.S. estimates of the risk of birth defects from congenital Zika infection.

While earning her Ph.D. in epidemiology at New York University, Jones traveled to India to study malaria, investigating why rapid diagnostic tests were missing infections there, casting the same kind of diagnostic shadow that renders some Chagas cases invisible.

Now, as part of the Chagas Disease Translational Team at Rockefeller and the Clinical Directors Network, Jones analyzes huge datasets and uses focus groups to gather stories from clinicians, patients, and community members. “This is my first time really adding a qualitative aspect, actually talking to people and getting their perspectives,” she says. “Sometimes the most important data aren’t in any database; it lives in people’s work-arounds and worries.”

Barriers to diagnosis

Chagas disease is most often acquired in Latin America, and most U.S. cases are in immigrants who already struggle to access health care. Diagnosing Chagas is complex, requiring repeated blood tests, specialized labs, and sometimes a third “tie-breaker” test. The multi-step, labor-intensive process, followed by a tough 60-day treatment for the disease, creates real barriers for those most at risk.

Beyond the medical and procedural challenges lie human ones, including fear of deportation, gaps in insurance, language barriers, and the inability to take time off from work for multiple visits.

“Even though we think there are a lot of people who have chronic infection, if you’re not testing them, you don’t see that in the data,” Jones says. “And if you don’t see that in the data, there’s less incentive to test more people or to improve the methods of testing.”

As part of her Civic Science Fellowship, Jones is conducting focus groups with medical providers, but also with Spanish-speaking community members in New York City who meet screening criteria but have never been offered a test. She’s probing what would prompt or deter them from being screened, and what changes would make care more accessible.

“This is a disease that’s under-recognized and underdiagnosed in the United States,” Jones says. “It’s underfunded. A lot of these providers do the work because they want to, not because anyone told them to. Their dedication is incredible.”

Providers have shared what can work. Dedicated staff and strong leadership involvement in the healthcare setting are important, Jones says. This would include community health workers, champions and promotors, and importantly, bilingual staff.

The civic science advantage

While her day-to-day work revolves around data, transcripts, and policy research, Jones also attends the weekly virtual Civic Science Fellows Lab with her peers, which include journalists, museum professionals, educators, and community organizers.

“Listening to people who craft podcasts or run science festivals changes how I think about my own project,” she says. “It has given me a new perspective on community engagement and policy and helped me see how the practical, everyday obstacles people face can be turned into research evidence, changes in clinical practice, and, eventually, policy change.”

Originally designed as an 18-month fellowship supported by the Rita Allen Foundation, Jones’s project recently secured additional funding for another year through the Stavros Niarchos Foundation Institute for Global Infectious Disease Research at Rockefeller. This reflects the importance of the work and the extended time that community-engaged research requires.

“I started the fellowship a year ago, and only now am I conducting the focus groups,” Jones says. “Just going through all the approvals, and agreements needed to get the data, and then the amount of time that it takes to do analysis—it can be slow at first.” In the meantime, the team’s educational outreach has already provided accredited continuing medical education sessions for more than 500 care providers, spreading awareness and best practices for screening and care.

The long-term goal is to grow and improve screening, backed by real-world data. Promising models include embedding Chagas disease screening in prenatal clinics where Medicaid covers costs, and in HIV clinics where external funding is often available. “We also need better tests,” she says, “and they don’t exist right now.”

The estimated missing 298,000 people with Chagas disease are hidden by systems that don’t see them, tests that are too complex to access, and databases that reflect healthcare inequities rather than disease reality. “Acknowledging bias isn’t weakness,” Jones says. “It’s the first step toward equity.”

As data and dialogue come together, the map of U.S. healthcare is being redrawn—one formerly invisible case at a time.

Abbey is a member of the 2024-25 Civic Science Fellows cohort. Her Fellowship is supported by the Rita Allen Foundation and the Stavros Niarchos Foundation Institute for Global Infectious Disease Research at Rockefeller.