'The Kissing Bug' challenges which diseases matter — and why

Daisy Hernández was a child in the early 1980s when her mother's youngest sister, Dora, traveled from her native Colombia to the United States to seek treatment for a disease that left her stomach so distended that people assumed she was pregnant.

In Colombia, doctors had resected Dora's colon — they told her she had "enough for ten people" — and gave her a colostomy bag, but she still needed several more abdominal surgeries when she came to live with Hernández's family in New Jersey. The family line on what had made Dora so sick? "She ate an apple."

Hernández didn't learn until much later that her aunt's disease was caused by a parasite spread through the bites of triatomine bugs, also known as kissing bugs. The kissing bug disease, or Chagas, is endemic in Latin America, where the blood-sucking bugs come out at night to feast, leaving swollen bites near people's lips. Dora's infection might have indeed come from eating a contaminated apple years before her digestive system started unraveling.

Hernández's book “The Kissing Bug: A True Story of a Family, an Insect, and a Nation's Neglect of a Deadly Disease” weaves together family memoir and investigative journalism to come to terms with the disease that ultimately killed her aunt. Through piecing together her own family's story, the history of Chagas, and the stories of other patients' illnesses, Hernández raises damning questions about which infectious diseases get attention and whom we believe to be deserving of care.

I had never heard of kissing bugs or Chagas before encountering Hernández's book. Living in the northeast, the only vector-borne disease I have ever worried about is Lyme. Unlike Lyme, Chagas kills more than 10,000 people a year. The disease results in cardiac problems for about 20% to 30% percent of patients. Hernández explains that the parasite can live in the body for decades, "quietly interrupting the electric currents of the heart, devouring the heart muscle, leaving behind pockets where once healthy tissue existed." More rarely, it eats away at the esophagus and colon, as in Dora's case. All of this is preventable if the infection is caught early and treated with the anti-parasitic benznidazole, but patients often only develop debilitating symptoms years after getting bitten, when it is too late for such treatments.

The CDC estimates that 300,000 people in the U.S. have Chagas. For the most part, they are immigrants from Latin America who were infected there. And this is why most American doctors do not know about Chagas or how to treat it, and why it is classified as a neglected tropical disease — it primarily afflicts poor immigrants.

“The Kissing Bug” starts out in memoir-mode, told mostly from Hernández's younger perspective when she knew next to nothing about her aunt's disease because it was only whispered about. By starting with the personal, Hernández allows readers to comprehend how a bug bite rendered a woman sick for most of her life.

Before her symptoms developed, Dora was an ambitious young woman who put herself through college and taught elementary school. After settling in New Jersey, she taught Spanish, helped raise Hernández and her sister, and found love. But the parasite was still alive in Dora's body after her surgeries, and it would later attack her esophagus. She died in 2010 at the age of 59 after her heart stopped during yet another medical procedure, a shock to the family despite her long illness. "To me, she was not the kind of woman who died," Hernández writes. "She was a woman who lived close to death."

Hernández's strained relationship with her aunt, who refused to accept her queer identity, complicated her grief. When she started researching kissing bugs a few years after Dora died, she told herself that her interest had little to do with her aunt. But in writing The Kissing Bug, Hernàndez fills the silences between she and Dora, finding out everything her aunt had never known about the disease that killed her.

Hernández is trained as a reporter, and she approaches the quest to learn about kissing bugs with journalistic tenacity. She travels to Bogotà, where she meets with a professor who has been studying the bugs since the 1970s. She spends an evening in a field in Texas, trapping kissing bugs — they live in the American South, too, and U.S.-native bugs have infected some people. While meticulously researched, this section of the book lags as we lose the thread of how these insects, and the policy decisions around this disease, impact patients.

“The Kissing Bug” hits its stride in the last section, when Hernández tells the stories of poor and uninsured Chagas patients who face barriers in receiving appropriate care. We meet patients like Carlos, who was on his second pacemaker in his 40s when he was finally diagnosed because he happened upon doctor in Boston who knew about the disease. His stack of medical bills, and the fact that his condition has made it difficult for him to work, haunt him. We also learn that a terrifying repercussion of living with Chagas is passing it along to your baby, as happened to Janet in Maryland. She didn't know she was infected until her son was born prematurely with his heart already affected by the disease. He spent weeks in the NICU before doctors finally tested him for Chagas. Both Carlos and Janet are immigrants from Latin America. Their stories highlight that our country has accepted that poor immigrants' diseases matter less.

“The Kissing Bug” comes at a time when the COVID-19 pandemic has laid bare health inequities both within the United States and globally. In the U.S., people of color have been disproportionally more likely to experience severe illness and death from COVID. Now, as our case and death numbers have dramatically decreased due to expanded vaccine access — nearly half of the country has received at least one vaccine dose — South America and India are experiencing surges. In both regions, vaccines have reached only a small fraction of the population.

Ultimately, “The Kissing Bug” reminds us that our work at balancing health inequities cannot stop with controlling COVID domestically. Toward the end of the book, Hernández writes of "the great epi divide," a term coined by physician Paul Farmer. "People on one side of the epidemiological divide, Dr. Farmer argues, will die of diseases related to old age, while those on the other side will die much younger because medicine for treatable diseases is too expensive." To Hernández, the great epi divide explains the choices the United States has made in public health funding — choices that keep infectious diseases like Chagas contained within "a Second America." But the great epi divide "can change if we want it to."

Kristen Martin's writing has also appeared in The New York Times Magazine, “The Believer,” “The Baffler,” and elsewhere.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

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