- The CDC estimates that more than 300,000 people in the US have Chagas, called “The Kissing Bug”.
- The disease isn’t well-known in the US, as it mostly affects Latino immigrants.
- Daisy Hernández draws greater awareness to the disease and encourage people to get screened.
Daisy Hernández bypassed media relations and snuck into the hospital so she could be with Carlos, a source for the book she was writing, as he was getting his heart examined.
The author of the award-winning memoir A Cup Under My Bed may not have been Carlos’ girlfriend, as the doctor assumed, or even remotely related to the Chagas patient, but she did have a personal connection to the disease afflicting him.
Her own Tía Dora suffered from Chagas, a disease caused by the parasite Trypanosoma cruzi, which transmits the disease through bites.
Being in close proximity to Chagas had a profound effect on Hernández.
In fact, the author was inspired to write her most recent release The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease after witnessing her aunt’s health deteriorate as a result of the disease.
In The Kissing Bug, Hernández chronicles how Chagas is becoming more prevalent in the United States and how the racial politics of the US healthcare system bars people from accessing life-saving treatment.
Named after Carlos Chagas, a Brazilian physician who discovered the disease in 1909, Chagas can cause cardiac and gastrointestinal complications including
heart failure
, cardiac arrest, and enlarged colons.
Although most Chagas sufferers don’t feel any symptoms in the acute phase, some people may experience nausea, fatigue, and pain.
Chagas can prove fatal if it is not treated quickly.
Despite being more prevalent in the US than Zika virus, the disease is still not well-known.
Hernández argues that Chagas is absent from the American vernacular and healthcare system because it mostly affects poor Latinos, and in particular, Latino farm-workers.
The majority of Chagas-positive Americans, approximately 300,000, are Latin American immigrants.
Hernández says Chagas reflects ‘who we choose to take care of’
Bosch Studio
Chagas can also be transmitted through blood transfusions, organ donations, and pregnancy.
If it is uncovered early on — as was the case for one newborn baby Hernández writes about in the book — it can be treated with anti-parasitic medications.
Adults can also get medication to manage symptoms.
People aren’t often screened for Chagas — even though it’s cheaper to screen and treat babies and their moms than it is to cover the costs associated with them having the disease.
Hernández told Insider of one infant highlighted in her book, that “had [Chagas] not been identified, he would have been in his 20s or 30s and would have likely started developing heart problems.”
Dr. Rachel Marcus, who credits Hernández with making the public aware of Chagas, attributes the lack of proactive care against Chagas to a lack of education among medical professionals about the disease and to the inadequate care people of color face in the US healthcare system.
“This is a disease that can be prevented if you catch it early enough and the only way you’re going to do that is by screening,” Insider spoke with Marcus, a doctor who founded the Latin American Society of Chagas. This non-profit provides medical resources for Latino communities in metropolitan Washington.
Yet “overworked and under-recognized” physicians tend to overlook the disease, in part because they “were taught this was a disease they weren’t going to see,” Marcus said.
Chagas, which is mostly affecting Latino immigrants, prevents the disease being caught.
Latinos have the highest uninsured rates of any U.S. racial or ethnic group, according to the US Department of Health and Human Services.
Through interviews with patients, doctors, and epidemiologists, Hernández weaves a narrative of the racial politics that overshadow modern healthcare and reveals who “we choose to take care of and when and how and for what reasons.”
Marcus said the United States has a history weaponizing patients’ citizenship status and using it to deny healthcare — a dynamic that Hernández writes about in The Kissing Bug and still influences who is able to obtain proper medical care today.
This is a patient population that is not well-suited to be able to advocate on their own.
Marcus explained that they are often undocumented and don’t want to be noticed, especially in the context of Trump’s four years of anti-immigrant rhetoric.
The Kissing Bug spreads awareness for professionals and families
Courtesy of Daisy Hernández
There are many obstacles to eradicating Chagas.
After a heart transplant, the parasite may reemerge and attack the new organ. Benznidazole, a potential treatment, is expensive — in large part because of exploitative prices set by pharmaceutical companies, experts say.
Yet Hernández’s writing provides a paradigm for how to begin addressing the inequities baked into medicine. Her book highlights the contributions of individual doctors in fighting the disease.
“Without them, there’s a lot of care that wouldn’t happen for Latinx migrants,” Hernández said.
While Hernández is inspired by their work, she doesn’t think it should be incumbent on just a few doctors to help Latinos with Chagas access the care they need.
Instead, Chagas should be tested at birth for Severe combined Immune Deficiency and other conditions.
“I do hope that it raises awareness about the disease for both Latinx families and also for medical professionals, because it is not taught in medical schools today in a significant way,” Hernández said. “I want them to know that this is something to be screened for, something to check off the list.”