When author Daisy Hernández’s aunt Dora came to the U.S. from Colombia to seek medical treatment, Hernández’s family never expected an unknown illness would take her life.
“Even after her funeral,” Hernández told NBC News, “there were co-workers at her funeral who were asking me if she’d had cancer.”
Hernández's aunt died as a result of complications from Chagas' disease, caused by the bite of a triatomine bug, also known as a kissing bug, which carries a parasite that can ultimately destroy a person's digestive system and heart.
While many people may never have heard of Chagas in the U.S., about 8 million people in Mexico, Central America and South America have it, according to the U.S. Centers for Disease Control and Prevention, and it kills more than 10,000 people a year.
And in the U.S., over 300,000 people are living with Chagas' disease, according to the CDC, mostly U.S. Hispanics who have moved from Latin America.
Yet because the disease has primarily affected people in Latin America — many of them from poorer or rural areas — it hasn't been a big focus of medical attention, as Hernández found as she researched her highly praised, recently published book, “The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease.”
“When I discovered the history behind it and how many people were in the U.S. with this disease, and that it was still very much being neglected by medical schools, medical institutions and public health officials, that was such a shock,” said Hernández, author of the award-winning memoir “A Cup of Water Under My Bed” who has reported for National Geographic, The Atlantic, The New York Times, Slate and NPR.
Hernández's book delves into the historical background of the disease, first discovered in 1909 by Brazilian physician Carlos Chagas. She details a grim aspect of past research: In the 1940s, a Texas researcher intentionally planted kissing bugs on a young Black man who was a patient in a psychiatric hospital in order to study the progression of the disease.
While the disease has not been the focus of many medical searches for cures, that is slowly changing.
Norman Beatty is an assistant professor of medicine at the University of Florida. He has been studying the effects of Chagas' disease since 2015.
"It has been estimated that California, Texas and Florida have the highest prevalence of infection among the Latino community in the United States," Beatty said, though he said exact figures of where people are most affected by Chagas in the U.S. is unknown, since there is no national surveillance program.
"This is one reason why Chagas' disease is a disease of inequity," Beatty said. "My hope is that in my career I can help lead an effort to build that program."
He explained that the insect, the kissing bug, harbors a parasite in its midgut and the fecal matter of the bugs is infectious, spreading to humans through interaction," Beatty said.
Transmission from a human to others can occur from blood transfusions, organ donations and mother to baby during pregnancy.
Most people who acquire the parasite during the acute phase are asymptomatic, or do not have any symptoms whatsoever.
“If they do have symptoms,” Beatty said, “they’re often very mild flu-like symptoms like a fever, fatigue, enlarged lymph nodes, and this process will self-resolve. But the parasite is still persisting in the body.”
Approximately 20 to 30 percent of infected people develop cardiac or gastrointestinal complications. In “The Kissing Bug,” Hernández describes multiple gastrointestinal procedures her aunt endured.
Access to anti-parasitic medications has been shown to help prevent the progression of Chagas — but only if the disease is found early.
“There’s a lot that we can do and that is why it is so important for us to be screening for Chagas' disease and to link patients with a provider who has knowledge on how this disease works and what treatments and therapies are available,” Beatty said.
Lack of health care access a factor
In her book, Hernández calls Chagas' disease a silent disease due to its asymptomatic nature — but its meaning goes far beyond that.
“I also wanted to explore these themes around racial disparities and health care specifically within the Latino community,” Hernández said.
Hernández’s aunt was fortunate enough to receive medical attention when she came to the U.S. from Colombia. But for a large number of people in the U.S., both immigrants and native-born, health care access is elusive.
Despite that the disease disproportionately impacts Latinos, they have the highest uninsured rates of any U.S. racial or ethnic group.
In the book, Hernández tells the stories of mainly low-income, uninsured Chagas patients she meets. Forty-year-old Carlos has heart problems that have left him unable to work, though he tries to keep working amid outstanding medical bills. His story and others like it show that for many Hispanics, work ethic and financial stability often outweigh the focus on personal health.
“I think in general what keeps Latino people out of doctors' offices is that lack of access to health care,” Hernández said, “and then the job situation because it’s not only getting access to health care; it’s also being able to take time off from work to go to an appointment, to go to multiple appointments.”
Hernández’s parents worked in textile factories in New Jersey, and they didn’t have insurance.
“My mother and her sisters would go to free health fairs, sometimes in a church parking lot or a city park where a hospital or another kind of health institution set up general screenings,” she said.
Racial disparities in the health care system and a lack of incentives to teach medical students about Chagas' disease has made the search for a cure tougher, according to Hernández.
Though there is no known cure, she and others hold out hope.
"The CDC has started to give grants to specifically raise public awareness," Hernández said, "and also to raise awareness in the medical community around the disease."