Meet the author on a mission to combat the invisible 'Kissing Bug' disease affecting Latinos communities
- The CDC estimates that more than 300,000 people in the US have Chagas, called "The Kissing Bug".
- Yet the disease is not widely recognized in the US because 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.
While most people in the acute phase of Chagas don't experience any symptoms, for others, the disease spurs pain, fatigue, and nausea, among other symptoms.
If left untreated, Chagas can be deadly, which is why early detection of the disease is the best way to curtail it.
Yet the disease, which is now more common in the country than Zika virus, remains invisible in the US.
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.
Of the estimated 300,000 Americans who have Chagas, most are Latin American immigrants.
Hernández says Chagas reflects 'who we choose to take care of'
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 take medication to manage the various symptoms associated with the disease.
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," Marcus, a physician who helped establish the Latin American Society of Chagas, a non-profit that provides access to medical resources to Latino communities in the metropolitan Washington area, told Insider.
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.
The fact that Chagas mostly affects Latino immigrants also prevents the disease from being detected.
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's not well suited to being able to advocate for themselves.
Because they're often undocumented and don't want to draw attention to themselves, especially during the four years of the Trump administration, which was hostile towards immigrants," Marcus said.
The Kissing Bug spreads awareness for professionals and families
The parasite can reemerge after a heart transplant, attacking 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. In the book, she highlights the work of individual doctors working to combat 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, she wants Chagas to be something that is tested for at birth, just as Severe Combined Immune Deficiency, a disorder that makes it challenging for newborns to fight off infections, and other disorders are.
"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."