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The Kissing Bug: A True Story of a Family, an Insect, and a Nation's Neglect of a Deadly Disease (2021)

by Daisy Hernandez

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792341,965 (3.38)5
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Who does the United States take care of and who does it leave behind? This is a riveting investigation of infectious disease, poverty, racism, and for-profit health careâ??and the harm caused by decades of silence.

Growing up in a New Jersey factory town in the 1980s, Daisy Hernández believed that her aunt had become deathly ill from eating an apple. No one in her family, in either the United States or Colombia, spoke of infectious diseases, and even into her thirties, she only knew that her aunt had died of a rare illness called Chagas. But as Hernández dug deeper, she discovered that Chagasâ??or the kissing bug diseaseâ??is more prevalent in the United States than the Zika virus. Today, more than three hundred thousand Americans have Chagas.

Why do some infectious diseases make headlines and others fall by the wayside? After her aunt's death, Hernández begins searching for answers about who our nation chooses to take care of and who we ignore. Crisscrossing the country, she interviews patients, epidemiologists, and even veterinarians with the Department of Defense. She learns that outside of Latin America, the United States is the only country with the native insectsâ??the "kissing bugs"â??that carry the Chagas parasite. She spends a night in southwest Texas hunting the dreaded bug with university researchers. She also gets to know patients, like a mother whose premature baby was born infected with the parasite, his heart already damaged. And she meets one cardiologist battling the disease in Los Angeles County with local volunteers.

The Kissing Bug tells the story of how poverty, racism, and public policies have conspired to keep this disease hiddenâ??and how the disease intersects with Hernández's own identity as a niece, sister, and daughter; a queer woman; a writer and researcher; and a citizen of a country that is only beginning to address the harms caused by Chagas and the dangers it poses. A riveting and nuanced investigation into racial politics and for-profit health care in the United States, The Kissing Bug reveals the intimate history of a marginalized disease and connects us to the lives a… (more)

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Really well done. Author effectively blends interviews with researchers with personal experiences of the disease to give a compelling portrait of the disease and its effects. She manages to address social issues as well, such as immigration, poverty and bigotry. I did feel she left out parts of “Typhoid Mary’s” story in order to bolster her argument, or I’d have given it five stars ( )
  cspiwak | Mar 6, 2024 |
In this book Hernández has written a biography of her late Aunt Dora's life with Chagas disease, as well as a study of Chagas disease itself, especially in the US. While the disease--caused by a parasite spread by kissing bugs--is found in kissing bugs in the US, most cases in the US are among Central and South American migrants who most likely acquired it in their home countries where there are different species of kissing bugs. The parasite can cause no symptoms for 10-30+ years, and then its attack on (usually) the heart, or on the digestive system, becomes apparent. Some people are bitten many times and never develop symptoms. Mothers can pass the parasite on in utero, but drug treatments can cure children before the parasite gains a foothold in the body.

This book is fascinating and well organized--between sections about her tia she travels to Colombia (her mother and aunts' home country), California, Texas, and Virginia. She talks to researchers and doctors studying the disease, the bug, and working with patients. She goes kissing bug hunting. She talks to patients, and finds that often only one or two people in a family--even among siblings who grew up together--will develop the disease. It is very readable and informative, and I see why it has won a PEN award.

There were a few areas that I have questions about:
1. She advocates for adding a Chagas screen to the newborn test panel, as if in utero transmission is detected, the children can be fully treated. As the Latino population (especially the Central American and adjacent countries) population in the US has ballooned in the last few decades, there are more and more people in the US with the disease, and more babies potentially being born infected. She says this is due to racism--yet, at least in California, which has the most Chagas patients in the country, all newborn screens are for genetic disorders (sickle cell, cystic fibrosis, endocrine/immune/metabolic disorders). She does not mention this at all. Chagas can be passed, but it is not genetic. Does this difference change anything about how the screen is done? Does it require more blood? Different storage/testing system? She ignores all of this. It seems a targeted approach might be better--such as testing mothers before birth and then only testing the babies of positive mothers--and is there an ideal time after birth to run that test.

2. She briefly mentioned the possibility of climate change increasing the US range of parasite-carrying kissing bugs, but doesn't go anywhere with this. Is it being researched?

3. Does the significant number of shelter dogs infected mean anything for possible adopters? It seems any infected animal can pass the parasite back to a not-carrying kissing bug, who could then go on and infect other people/animals. Or am I misunderstanding? ( )
  Dreesie | Mar 25, 2022 |
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Any woman's death diminishes me. -- Adrienne Rich
There is a prayer in the act of writing. -- CherrĂ­e Moraga
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For Maya Durga
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The New York City hospital is a black, cavernous mouth.
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Sociolog Nonfictio HTML:

Who does the United States take care of and who does it leave behind? This is a riveting investigation of infectious disease, poverty, racism, and for-profit health careâ??and the harm caused by decades of silence.

Growing up in a New Jersey factory town in the 1980s, Daisy Hernández believed that her aunt had become deathly ill from eating an apple. No one in her family, in either the United States or Colombia, spoke of infectious diseases, and even into her thirties, she only knew that her aunt had died of a rare illness called Chagas. But as Hernández dug deeper, she discovered that Chagasâ??or the kissing bug diseaseâ??is more prevalent in the United States than the Zika virus. Today, more than three hundred thousand Americans have Chagas.

Why do some infectious diseases make headlines and others fall by the wayside? After her aunt's death, Hernández begins searching for answers about who our nation chooses to take care of and who we ignore. Crisscrossing the country, she interviews patients, epidemiologists, and even veterinarians with the Department of Defense. She learns that outside of Latin America, the United States is the only country with the native insectsâ??the "kissing bugs"â??that carry the Chagas parasite. She spends a night in southwest Texas hunting the dreaded bug with university researchers. She also gets to know patients, like a mother whose premature baby was born infected with the parasite, his heart already damaged. And she meets one cardiologist battling the disease in Los Angeles County with local volunteers.

The Kissing Bug tells the story of how poverty, racism, and public policies have conspired to keep this disease hiddenâ??and how the disease intersects with Hernández's own identity as a niece, sister, and daughter; a queer woman; a writer and researcher; and a citizen of a country that is only beginning to address the harms caused by Chagas and the dangers it poses. A riveting and nuanced investigation into racial politics and for-profit health care in the United States, The Kissing Bug reveals the intimate history of a marginalized disease and connects us to the lives a

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