The Kissing Bug by Daisy Hernandez

Back in my November book rut, I ordered a bunch of non-fiction books to help me out of it and The Kissing Bug: A True Story of a Family, an Insect, and A Nation's Neglect of a Deadly Disease by Daisy Hernandez was one that was recommended. I thought it sounded interesting and ordered it from the library, but it sat on my bookshelf for a few weeks before I finally dove in.

Hernandez's aunt was an immigrant who came to the United States only to be diagnoses with Chagas disease, a condition with two phases, acute and chronic, that can lead to cardiac and gastrointestinal complications and death. The disease is passed to humans and other animals through insect vectors commonly called kissing bugs. It's only found in the Americas and because of global immigration patterns, is becoming more and more common in the United States, whereas in past decades it was found mostly in poor Latin American areas. The disease can be passed from mother to child during birth, in organ transplants, and blood transfusions, as well. In this book, Hernandez examines the disease through the lens of her aunt's illness, as well as other patients.

Hm. It does seem like a terrible disease. Some people are infected as children and never suffer any consequences from it at all. For some of the unlucky (20-30% of people infected), however, it can lead to an enlarged heart and the collapsing of the heart walls. Or it can lead to an enlarged esophagus or colon, leading to problems with eating and defecating. Hernandez's aunt had issues with her esophagus and had trouble eating. 

There is a treatment for the disease if it is caught in its acute phase, but past that, there are no treatments. It's a relatively rare disease in most of the world, but the WHO estimates that 12,000 people die of it every year and over 8000 babies are born with it, so it's not some sort of orphan disease with only five people having it in the world. It's not one of the diseases babies are screened for at birth, despite having tests for rarer diseases that are required. And medical professionals frequently are not trained to recognize the symptoms of Chagas because many of the people who suffer with it do not seek medical treatment. 

You'll note here that I linked to WHO and CDC instead of using quotes from the book. It's because the book's subtitle is really a lie. This is mostly a memoir about Hernandez, her aunt, and their relationship. That's fine, but the subtitle led me to believe we'd cover more of the science and what steps governments should take to deal with this disease. While there is a tiny bit of that, a lot of it is Hernandez's own angst over her aunt's refusing to accept her bisexuality or genderqueer partner, her fear of the kissing bugs, and lots of complaints about people I interpreted as well-meaning but undereducated medical professionals. 

I think this is an important topic, I really do. I think it should receive attention, particularly in infant screening and educating doctors and nurses, particularly those who work with Hispanic populations. But I wanted more from this book. I wanted policy recommendations. I wanted to know how many other "rare" diseases are out there that could be caught with simple screening tests. I wanted a larger discussion about the role language differences and racial play in the disparities in health outcomes. I wanted Hernandez to use all these anecdotes she had collected to tell me a bigger story.  

3/5 stars