When the author Daisy Hernández’s aunt, Dora, came to the United States from Colombia for medical treatment, Hernández’s family never expected an unknown disease to cost their lives.
“Even after her funeral,” Hernández told NBC News, “there were colleagues at her funeral who asked me if she had cancer.”
Hernández’s aunt died of complications from Chagas disease, which was caused by the bite of a triatomic beetle, also known as a kiss bug, that carries a parasite that can ultimately destroy a person’s digestive system and heart.
While many people in the US may never have heard of Chagas, around 8 million people in Mexico, Central America, and South America have it, and more than 10,000 people die from it annually, according to the US Centers for Disease Control and Prevention.
And in the United States, according to the CDC, there are over 300,000 people living with Chagas disease, mostly American Hispanics who moved from Latin America.
However, because the disease primarily affects people in Latin America – many of them from poorer or rural areas – it has not been the focus of medical attention, as Hernández found in her research on her critically acclaimed, recently published book, The Kissing, Bug: One true story of a family, an insect, and a nation’s neglect of a deadly disease. ”
Author Daisy Hernández.Courtesy Tin House
“When I discovered the story behind this, and how many people were in the US with the disease, and that it was still very neglected by medical schools, medical institutions and public health authorities, it 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 deals with the historical background of the disease, which was first discovered in 1909 by the Brazilian doctor Carlos Chagas. It describes a grim aspect of past research: In the 1940s, a Texan researcher purposely planted kissbugs on a young black man who was a patient in a mental hospital to study the progression of the disease.
While the disease has not been the focus of much medical search for cures, this 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 infections among the Latino community in the United States,” Beatty said, although he said accurate numbers are about where people in the US are most affected by Chagas , are not known because there is no national surveillance program.
“This is one reason Chagas disease is a disease of inequality,” Beatty said. “My hope is that in my career I can help build this program.”
He explained that the insect, the kiss beetle, has a parasite in its midgut, and the beetle’s feces are contagious and interact to spread to humans, “Beatty said.
A kiss bug in Florida.Dr. Norman Beatty
Transmission from one person to another can occur through blood transfusions, organ donations, and from mother to baby during pregnancy.
Most people who acquire the parasite during the acute phase are asymptomatic or have no symptoms at all.
“When you have symptoms,” Beatty said, “it’s often very mild flu-like symptoms like fever, fatigue, enlarged lymph nodes, and this process will resolve on its own. But the parasite remains in the body. ”
About 20 to 30 percent of those infected develop heart or gastrointestinal complications. In “The Kissing Bug”, Hernández describes several gastrointestinal procedures that her aunt went through.
Access to anti-parasitic drugs has been shown to help prevent the progression of chagas – but only if the disease is detected early.
“We can do a lot, and that’s why it’s so important to us to screen for Chagas disease and connect patients with a provider who knows how the disease works and what treatments and therapies are available,” Beatty said .
Lack of access to health care is a factor
In her book, Hernández calls Chagas disease a silent disease because of its asymptomatic nature – but its meaning goes far beyond that.
“I also wanted to explore these racial and health issues specifically within the Latino community,” said Hernández.
Hernández’s aunt was fortunate enough to receive medical care when she came to the United States from Colombia. But for large numbers of people in the United States, both immigrants and natives, access to health care is elusive.
Although the disease disproportionately affects Latinos, it has the highest uninsured rates of any US race or ethnic group.
In the book, Hernández tells the stories of mostly low-income, uninsured Chagas patients she meets. Carlos, 40, has heart problems that have made him unable to work despite trying to keep working despite outstanding medical bills. His and similar stories show that for many Hispanics, work ethic and financial stability often outweigh the focus on personal health.
“I think what generally keeps Latinos away from doctor’s offices is the lack of access to health care,” said Hernández, “and then the work situation because they have more than just access to health care; it is also possible to take time off from work to go to one appointment, to go to several appointments. ”
Hernández’s parents worked in textile mills in New Jersey and were not insured.
“My mother and her sisters went to free health fairs, sometimes in a church parking lot or in a city park where a hospital or other type of health facility would do general checkups,” she said.
Racial differences in health care systems and the lack of incentives to teach medical students about Chagas disease have made finding a cure difficult, according to Hernández.
Although there is no known cure, they and others hope.
“The CDC has started making grants to specifically raise public awareness,” said Hernández, “and also to raise awareness about the disease in the medical community.”
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