Hey, it's Flora Lichtman and you're listening to Science Friday. Growing up, Daisy Hernandez was told that her aunt had become ill from eating a bad apple. She watched as her aunt became sicker and sicker and didn't learn until years later that her aunt was sick with Chagas disease, aka the kissing bug disease, named after the biting insect that transmits it. The disease affects around 8 million people and yet you have probably never heard of it. Daisy's book, The Kissing Bug, a true story of a family and insect and a nation's neglect of a deadly disease, is Science Friday's first book club pick of the year and it tells the story of her aunt who died of Chagas and how a disease that affects so many people can be so neglected. Daisy, welcome to Science Friday and just to get going, why did you decide to take this on? Thank you so much for having me. I wanted to write this book because we grew up not knowing another family that was affected by Chagas disease and so I thought there would surely be a book out there already and when I started searching, I didn't find that book and I felt like I wanted to contribute to the conversation. I wanted to create a book that I wish I would have had when I was 15 years old that I wish my auntie would have had. I wanted to raise awareness for sure among all Americans and medical providers in general. So I thought I was maybe just writing an article and it became a book. The book centers on your aunt Dora. Tell us a little bit what she was like. She was a vibrant personality. She was somebody who dreamed of always being a school teacher. She grew up in a family of 12 children in Columbia and ended up here in the U.S., ended up actually pursuing that dream of being a public school teacher. She also had strong ideas about what was proper for a young girl to say and to do and a lot of that centered around very traditional ideas of girlhood from her own experience. You had different ideas. I take it. I was growing up listening to Madonna and wanting to be a bad girl, a material girl. And also growing up in a U.S. context where it was very much in a school system where it was valued that you would be outspoken, that you would go after what you wanted. No humility. If you wanted to be heard, you had to speak up. And so she and I constantly fought. How did the disease manifest for her? What were her symptoms? So Chagas disease primarily affects the heart muscle, but it can also affect the GI system. And in her case, it was the latter. And so she initially started having very severe stomach pains. Her abdomen started to enlargen actually to the point that she began to look like she was pregnant. She was growing up in the 1970s in a situation where it would be very frowned upon to have a pregnancy out of wedlock. And she knew she didn't even have a boyfriend at the time. So her brothers would tease her, but she knew that something was very wrong. And it reached the point where she started having fevers that began to lead her to hallucinate. And that's when her family rushed her to the emergency room to try to find out what was going on. How is Chagas transmitted? It is a parasitic disease that's transmitted through the kissing bug triotamine insects. It is found in South America and Central America and Mexico. The insects are here in the United States. We don't have the same kind of transmission in the US. The last time that I talked to the CDC, they had only identified about 100 people who had contracted the disease from insects that are native to the US. So we're mostly talking about this part of Latin America. Chagas disease is a little different because it's not transmitted in the bite. It's actually transmitted in the fecal material from the kissing bug. So you get a bite, the insect defecates, the parasitic material is there. It will either go into that bite area or sometimes it ends up being rubbed into your eyes or your mouth or something like that. They come out at night, so it's not like you're doing any of this consciously. But then once that parasite is in your body, you don't always necessarily get symptoms or you get symptoms that can be very vague like headaches or fever or something like the flu. And at that point, when it's in that acute stage, because it's such a neglected disease, people don't necessarily get diagnosed and the symptoms are not super alarming. So unfortunately, that's when the parasite can go into that chronic stage where treatment is much more difficult. It doesn't have a cure once it's in that chronic stage for adults. Not everyone has symptoms in the chronic stage. Most people do not have symptoms. It's only about 10 to 15% of people who will go on to develop usually cardiac problems. Shaga's disease is the number one cause of heart disease in Latin America. Is awareness higher in Colombia where your family's from or in South or Central America of this disease than it is here? It depends radically on which country you're talking about. Brazil and Argentina where the disease was first identified and fully understood has a little bit more awareness. And I would also say that there's sometimes a great deal of awareness in a community based on what's happening to family members. So when I speak to people from Bolivia, they might know and understand that like, oh, yeah, their father or their cousin or their uncle had that diagnosis. But they don't necessarily know all the ins and outs of what the disease means, except that you start to save money. This is what people told me repeatedly when I interviewed them that when you would be diagnosed with this disease, they understood that that's when you start saving money for a pacemaker because in certain countries, you're going to have to pay out of pocket for a pacemaker. And so they knew that might be in the cards for the future based on what they had seen in their communities. I mean, even the name itself in English, the kissing bug disease, feels completely at odds with the experience of the disease. Such a cute name for what can be so devastating to patients. It is a cute name in English and they have many names in Spanish, many, many names. But if you go into the Southwest, if you go to Arizona and parts of Texas, they have always known it as a blood sucker, which more viscerally defines what this insect can do. How did your antdoras illness shape your experience? I very much grew up in the shadow of this disease. And I say that because she came into my life when I was five years old. I was the person in the family who was bilingual. So I was the child interpreter and translator for everyone. So I was speaking about shagas at that age in terms of interpreting between her and nurses and doctors and so forth when she was at home. And presumably sometimes when I was in the hospital setting. So for me, I knew about the disease, but didn't know everything that it meant. Like some of the people that I interviewed in their home countries where they had only seen it in a family member, but didn't necessarily know the science and the medicine behind it. That was my entire childhood. And part of wanting to write this book was to actually, I realized that how little I knew about this disease as I became older and also we lost my auntie eventually to this disease. And that was such a shock to me because I had grown up with her being sick for so many years, but she always came back home. And when she didn't, it was actually almost more of a shock because she had survived so often. I mean, you've really been working on research for this book since you were a kid. That's how it feels. Yeah. It also felt amazing to finally have the language and to have all these amazing doctors and scientists talks to me, people who were willing to meet with me and explain to me the, you know, the transmission cycle to explain to me how this parasite works, what the, just what they're still trying to figure out as well. People really were very generous with their time. I want to get into that. Don't go away. We have to take a quick break. When we come back, Daisy, I want to ask you why this disease has been so neglected and what that means for patients. How does AI even work? Where does creativity come from? What's the secret to living longer? Ted Radio Hour explores the biggest questions with some of the world's greatest thinkers. They will surprise, challenge, and even change you. Listen to NPR's Ted Radio Hour wherever you get your podcasts. OK, we're back. I'm talking with Daisy Hernandez about her book. It's part memoir, part infectious disease history. It's called The Kissing Bug. So Daisy, the WHO classifies shagas as a neglected tropical disease. I want to unpack that term. First of all, what does it mean? That's a great question. It means that globally we do not dedicate the resources and the time and the attention to, to treatment, to diagnosing this particular disease. It's a list of many other diseases that have been neglected. And primarily it's because these diseases, including shagas, are not necessarily going to go beyond the bounds of the communities that they affect. That was a very powerful moment for me when I was reporting on this. I found myself in a church basement in Virginia of all places, just a few miles from the White House where people were being tested for shagas disease. And I realized this is a second America. Nobody knows that these people are here, that they're being tested, that they, some of them will need treatment because it's not necessarily going to go outside of this community. It's not a COVID virus. It's not a cold. You're not going to catch it from being in a room with someone. So there's a certain degree to which the biology contains it. And then of course, public policy around, you know, socioeconomics and race also help to contain it. You know, it's an, this term neglected tropical disease. It's kind of curious, right? Because it's this big, it's this big held organization that is telling us that it's neglected, but you wonder, you're sort of neglected by whom. And why can't we change that? We can change it. Yeah, absolutely. Part of the motivation for me in writing this book was that I had such a hard time with the past tense of neglected as well, because it raises that question of whom. And the reality is that this disease has been neglected by the United States and Western Europe. The, these are still the countries that have primary resources in setting the global health agenda. And for so long, it was a disease that was primarily contained two starting parts of Latin America. And so these countries had the option of ignoring it and calling it a tropical, you know, medical issue as well. Right. There's a wonderful scientist who says, you know, you don't hear about neglected, temperate diseases. So there's, there's a larger framework that happens here in terms of neglect. It just feels like all completely coded to me. Yeah, absolutely. There's very diplomatic language, right? For the fact that there are racial and economic inequities at the global health level. Is there stigma around the disease? Like what was your, your on-doors relationship with having it? She was completely terrified of anyone knowing that she had Shaga's disease. And I think in her case, that might have been influenced by the time period that she was in, she came to the United States in 1980. And so this coincided with the AIDS epidemic here. And I think that some of her fear was, you know, that this was a disease no one had heard of, that she already felt, you know, was an immigrant and already felt like an outsider. So I think she was definitely afraid of, you know, she definitely was afraid of there being stigma. It very, that stigma is not something that I found with other patients that I interviewed. I think it really depends on the patients themselves and on the community that they're a part of. I want to talk about the intersection of public health and immigration, because I think people, I think we sort of categorize these as sort of separate issues, completely separate issues in our mind. But I'm, I'm curious about those intersections and how you think about these two issues together. Yeah. I really, I've always thought of them together because I grew up in an immigrant family affected by this disease. So for myself, they were always together. But what I've seen is an incredible difference in what patients and doctors experience around Chaga's disease based on what's happening around immigration policy. So in an ideal world, it would not have anything to do with immigration. We could acknowledge that parasites and viruses and bacteria do not care about borders. And you would think that the COVID pandemic had taught us a bit about that. But, but politically, that's not where we're at. And so the targeting of immigrants has just become more and more vicious, as we all know, as time has gone on. And so the impact means that you have, especially just right now, you have immigrants who are not going to be going out to seek medical care because they are afraid of what it means to go into a doctor's office or an inter-emergency room. You know, I have doctors who are telling me, you know, they have to be really careful about where they send their patients based on their immigration status, because we do know of ICE agents showing up in hospital settings. And so not every place that can provide medical care is now is a safe space for immigrants the way that it was 10 years ago. So they're not accessing public health. And that means that they are going to wait until they're in an emergency situation to access that kind of help. And that's part of what I've write about in the book is that these are two issues that are completely hand in hand. So we have treatments. Where are we with a cure? There isn't a cure once you're in the chronic stages and a dull, but I would emphasize that there are curative medications when you're a child and when you're in the acute stage. And so that part matters a lot because we don't do prenatal screening for Shaga's disease in the United States. But if we did and we could identify children, we might have as many as 300 children every year being born with this disease. And if we could diagnose that at that time, that medication can be really effective and physicians don't understand why the medications work for children, but not for adults. It might be the length of time that they've been exposed to the parasite. But there are like, you know, almost curative interventions when you have a child who has the disease. What do you think your aunt Dora would have thought of this book if she were alive to read it? That's a tough question. I think she would have had mixed feelings. I think, yeah, I think she would have been upset that I was so open about our family life and particularly that I write in the book about being queer, about coming out as bisexual in my twenties. That's a time when she stopped talking to me because, you know, good girls are not queer in her, you know, in her philosophy of life. But I think she would have been so proud that I did all this research and I found all this information. I think she would have been so excited to have been a part of my reporting journey. I think she would have been proud of that. So just like our relationship was when she was alive, I think it would have been a mixed kind of response. A mixed bag. Like all family relationships. All family at the end of the day. All families. Daisy, thank you so much for joining me today. Thank you for having me. It's been an honor. Daisy Hernandez is a journalist and the author of The Kissing Bug, which is Science Friday's book club pick for January and February. You can read along with us and discuss with other book clubbers. Just head to sciencefriday.com slash book club to join us. This episode was produced by Rasha Oriti. Have a great weekend. I'm Flora Lichtman.
