Chagas Disease: A Story of Neglect and Hope Shared by Author Daisy Hernández

Part of the Global Health Matters “Dialogues” series.

“We make choices about who we take care of, and we make choices about who we neglect,” says author Daisy Hernández about health systems around the world.

A guest on a recent episode of the Global Health Matters podcast‘s “Dialogues” program, Hernández shared her personal experience with Chagas disease and the journey she undertook to understand it while writing her book “The Kissing Bug: A true story of a family, an insect and a nation’s neglect of a deadly disease.”

Hernández is an essayist, memoirist, journalist, and a professor of creative writing at Northwestern University in the United States. Her work focuses on the intersections of race, ethnicity, immigration, class and sexuality. Chagas is a disease caused by the parasite Trypanosoma cruzi, which is transmitted to animals and people by insect vectors and is found only in the Americas.

Hernández’s Auntie Theodora was diagnosed with Chagas in the United States when Hernández was very young.

“I grew up in the shadow of Chagas disease, and I say in the shadow because it’s been so neglected that we thought it was a very rare disease,” Hernández said. “We had no idea about the millions of people who have this disease around the world, mostly from Latin America.”

In her book and the discussion with host Dr. Garry Aslanyan, Hernández describes how, in the U.S., as recently as 10 years ago, it was almost impossible to know where to get tested for the disease, let alone treated. She also walks through some of her interviews with doctors,
biologists, infectious disease specialists and entomologists, and shares stories of other families.

Hernández’s research took her across the United States and Columbia.

“You describe how pathogens don’t care about bank accounts, national boundaries, tax returns, yet not all health care systems are equipped to deal with a disease such as Chagas,” Aslanyan points out. Then he asks: “How do you see this playing out across different places and maybe even Colombia? How did that play out.”

Hernández describes how, in Columbia, they have a much greater awareness than in the United States about Chagas disease. However, still, there was a divide between the rural areas and cities.

“I met this doctor, a young, young doctor right out of medical school, born and raised in the city, in the capital, and he was doing his one-year commitment of going out into rural areas to provide care,” Hernández recalls. “Chagas disease was entirely new for him, and he made such an impression on me because he was so eager to learn everything. He created his textbook on Chagas disease that he showed me. He had several patients infected and was resourceful, a really incredible person.

“But it really also reminded me of what I was seeing in the U.S., which was the individual doctors ending up with their patients and realizing like, okay, I didn’t learn this in medical school 20 years ago, in some cases, 30 years ago or longer, I need to learn about it now and taking the initiative to learn about the disease, to educate their colleagues as well, in some cases to go out into the community to do testing as well.”

Today, she compares what her family went through then and what she learned in the book to what America saw around COVID-19.

In the U.S., at least in the early days, testing sites sprung up in very wealthy neighborhoods when they were desperately needed in poor areas where people had to go to work and couldn’t work from home, for example.

It took Hernández seven years to complete the book, and she said she saw much more awareness of Chagas in the last seven to 10 years in the United States.

“I keep saying still a long way to go, but again, it’s also really determined by where you live,” she said. “There’s been a lot of activism in L.A. County, and so I think if you’re in L.A. County, everyone knows, oh, there’s a particular cardiologist devoted to this. The same thing is in Florida; we have an infectious disease specialist working on Chagas disease. So people within the community they know, and then the upside, of course, is Google. People get online, and you can also track down folks that way.

“It’s been really incredible to see awareness amongst healthcare professionals,” Hernández concluded.

To listen to more episodes of Global Health Matters, click here.

Dialogues is a new series from the Global Health Matters podcast that includes interviews with some of the world’s sharpest global health minds and brightest thinkers. The goal of each Dialogue is to go beyond the echo chambers that exist in global health and to have in-depth conversations with guests who have explored global health issues from their multi-disciplinary perspectives.

Image Credits: Global Health Matters podcast.

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