What can the story of a “forgotten” disease teach us about treating covid-19?
“Have you heard of Chagas disease?”
I asked this question of several people after finishing Daisy Hernández’s devastatingly incisive The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease. The responses ranged from quizzical looks to headshakes — no one had anything beyond a vague idea of this sickness that can burrow its way into your body via parasite and, having lain dormant for decades, suddenly begin to eat away at the walls of your heart until there is nothing left and you literally collapse from a broken heart.
Hernández’s story, well-researched and written in a straightforward, journalistic style, is nevertheless an intimate family portrait as well. Her Tía Dora, who, along with the rest of Hernández’s family, grew up in Colombia, eventually immigrated to America to live with the author’s family. For many years, they knew only that Tía Dora was sickly; when still in Colombia, her large intestine swelled to such a shocking degree that everyone believed she was pregnant — another symptom of Chagas, though they did not know it then.
“My auntie’s large intestine had dilated, widened, begun to go loose inside her body,” reports Hernández. “She had enough of a large intestine for ten people. The doctors offered a colostomy bag…The doctors believed she might live a year, maybe two. No one suspected a parasite.”
Eventually, Tía Dora’s health grew so bad that the other aunties conspired to send her to the United States, where they hoped she might get better treatment. They were partially right: Tía Dora was eventually diagnosed with Chagas disease, transmitted by parasites inside so-called “kissing bugs,” which are known by various names in Latin America and that love to feed on humans. She no doubt had been bitten by the insects as a child.
There are drugs that reduce the parasitic load of Chagas when in its chronic stage, which follows the initial weeks- or months-long acute phase. As Hernández points out, however, much of the population most likely to suffer from the disease — people in South and Central America, where the parasite abounds — cannot access (or afford) the medical care required to treat it.
Reading this book during the ongoing covid-19 pandemic, I drew parallels between the two sicknesses despite their contrasting natures. Hernández explains, “The New Yorker has called the kissing bug disease the ‘redheaded stepchild’ of vector-borne diseases…because even among the neglected, it has long been ignored.”
The same is certainly not true of covid-19, which was quickly seen as a public-health emergency and treated accordingly in terms of funding and vaccine development. It is equally true, though, that there remain stark disparities in the care and treatment of covid-19 patients depending on their socioeconomic status and ability to access help. Stories abound of “essential workers” being strong-armed into service despite being sick, and many people lack the funds for a long hospital or rehab stay, such as might be necessitated by a bout of long covid.
Yes, we have thrown resources at the problem, but we have not distributed them equitably, and many continue to suffer as a result.
The increasing knowledge exchange around Chagas disease, in which more healthcare professionals the world over are now engaging, offers a small but key example of how we can begin combatting covid-19 in a more egalitarian way. More is being understood about this novel disease, and if we can work to disseminate this newfound knowledge to the people who need it most, we can begin to treat every patient in more humane, productive ways.
In short, we can begin to truly heal.
It’s clear from the science that we’re not out of the woods when it comes to the pandemic, but it’s also clear when examining the parallels between Chagas disease and covid-19 that, with perseverance and compassion, we can improve the ways we treat both illnesses. Let’s band together to do that.
Mariko Hewer is a freelance editor and writer. She is passionate about good books, good food, and good company. Find her occasional insights of varying quality on Twitter at @hapahaiku.