The Kissing Bug

by Daisy Hernandez

  One morning, I clicked on a New York Times story and learned about what I came to call the “epi elite”—families in the United States who can pay between $40,000 and $80,000 a year to have a team of well-connected doctors on call. One of the epi elites is John Battelle, the cofounder of Wired magazine. “I feel badly that I have the means to jump the line,” he told the paper about his concierge doctor getting a top orthopedic to see his son for a broken bone. “But when you have kids, you jump the line.” You jump the epi divide.

  I could not argue with Battelle. If I had children and an extra eighty grand a year, I might do the same. I wish I could say that I would place that money toward prevention and treatment programs for neglected diseases, but I can’t say it with complete confidence. The epi divide thrives on fear and greed.

  The irony is that in certain ways the epi divide does not actually keep us safe. If we live in a region of the country where many people do not have health insurance, we won’t be able to get the care we need even if we have coverage. Hospitals close down. Doctors move to towns where they can earn higher salaries. We can find ourselves with health insurance and several college degrees and dragged to the other side of the great epi divide. One study from the pre-Obamacare days uncovered that a woman with health insurance did not get her annual mammogram when she lived in a largely uninsured community, in part perhaps, because the low demand for the screening made it less accessible. Another study revealed that a pregnant woman has more prenatal care services available to her if she lives in a state where the legislature and the governor have expanded Medicaid coverage. More money for health care services brings more doctors, medical programs, and hospitals to a region.

  What I appreciated about the image of the great epi divide is that it’s not a solid line on a map. It can change according to whom we elect to state legislatures, whom we put in the White House and on our city councils, and what demands we make of them. It can change if we want it to.

  The great epi divide did not change in time for one woman in Texas.

  …

  At Ben Taub Hospital, the largest safety-net hospital in Houston, Arunima Misra, a cardiologist, fished for a tissue in the pocket of her white coat. She was sure she had one. She knew that her eyes were red and that I was writing this in my notebook, and that she needed the tissue because we were talking about the patient who did not need to die, which is to say that we were talking about the epi divide.

  The desk did not have a box of tissues nor anything else: no pens, no notebooks, no calendars. The office itself was the size of a walk-in closet with enough room for the desk, the two chairs, and the two of us. At the door, a single sign read “Cardiology.”

  Dr. Misra found her tissue crumpled and proceeded to unfold it carefully as if it were an origami crane that could be returned to its original, flat dimensions. She dabbed the corner of her eyes. She forced a smile. She gripped the paper crane and told me about the patient without using the woman’s name. There was HIPAA, after all, and also a woman from the press office sitting outside the room. So, I imagined a name. I named the patient Lucia.

  The first time Dr. Misra saw Lucia’s chart, she thought the woman from Central America had already reached end-stage heart failure. “She had both ventricles that were shot. She had leakages across all over her valves, and she was so congested from back flow that her liver was big, and she was jaundiced,” she said.

  Lucia was only in her midforties, and she was lucky in one regard. In Connecticut where she had lived, a doctor had diagnosed her with the kissing bug disease. Dr. Misra wasn’t familiar with the disease or the parasite, but she knew what to do with a failing heart. She ordered Lucia an ICD: an implantable cardioverter-defibrillator. The procedure requires making a pocket under the chest wall, slipping in a device that looks like a giant silver coin, and wiring that silver coin to the heart. The defibrillator monitors for irregular heartbeats and shocks the heart back to life if the organ stops. Dr. Misra also put Lucia on diuretics and a long list of medicines.

  The medical therapies worked. Yes, T. cruzi was slowly devouring Lucia’s heart, but she was very much alive. And the years inched forward: one, then four, then six years. Lucia took her medicines. She made a home for herself in Texas, after so many years in the Northeast. She welcomed a granddaughter into the world and probably spent hours holding the child and maybe even thought: How could a heart fail in the face of such joy?

  Then, in 2015, almost a decade after Dr. Misra first saw her, the defibrillator shocked Lucia’s heart one day. The ventricles had been beating wildly, like a bird trying to take flight inside her chest. At the county hospital, she did not care if she was up against an ancient parasite. She told Dr. Misra, “I want to fight.” The cardiologist agreed.

  Remembering this, Dr. Misra’s eyes reddened. She unfolded the paper crane. “What about a heart transplant?” I asked. I was thinking of Carlos.

  “She never got funded,” Dr. Misra said.

  Lucia did not have health insurance, and she did not qualify for Medicaid. She was not signed up for Obamacare, which only went into full effect across the country in 2014, and she was too young for Medicare.

  “It underscores a problem that we have in the US and then also worldwide,” Dr. Misra said. “I live on this side of the border and you live on that side of the border, so I get health care and you don’t.”

  She was talking about the epi divide, about actual borders but also about the poor people in Houston without health insurance, like Lucia, and those who are undocumented. “We can’t save the whole world,” she told me. “I understand that too, but somehow there should be a better way.”

  Lucia spent almost a year in and out of the Houston county hospital. The defibrillator shocked her a few times. At least once, Lucia had to be intubated. She wanted to live, but she was dying, and she did not have the health insurance, or the money, to keep her heart alive.

  Finally, Dr. Misra began the painful conversation, the one she has to have with patients who are terminally ill and don’t have health insurance. She gives her perspective. Lucia could die here in the hospital attached to tubes, or she could die at home with her daughter and grandchild. “You came here to live with your grandchild,” Dr. Misra told her. “Go home and be at peace there.”

  Lucia agreed, and Dr. Misra turned off the defibrillator. The next time Lucia’s heart stopped, she died.

  FAMILY HISTORY

  I phoned my mother, who was living in South Florida, and asked, “What do you think about getting tested for Chagas?”

  “Why?” she asked, alarmed.

  I hesitated, then stumbled through my words. “Siblings should get tested,” I explained. “When someone’s infected, the rest of the family should be tested because maybe they’re infected too.”

  I was so nervous that I didn’t explain myself properly. When a person turns out to have the kissing bug disease, they were usually infected at home and all the people who lived in the same house, including siblings, are at risk, too, for having been exposed to the insects.

  Mami didn’t say anything. I asked, “What do you think?”

  She murmured, “We’ll see,” which was the same phrase she had used when I was eight years old and asked her to buy me a pricey Hello Kitty pencil. It was the phrase Mami used when she wanted to say, “No.”

  I asked her to put Auntie Biblia on the phone. She was living with my parents in South Florida. “I’ll talk about it with the doctor,” she promised, and I believed her because in her seventies, Auntie Biblia had become a zealous patient. A week didn’t go by that she didn’t put on her sneakers, pack a bottle of water, and take a public bus through the sweltering heat of Hialeah, Florida, to a medical clinic. She outlined her ailments to doctors and nurses and technicians: kidney stones, Bell’s palsy, lupus. She complained frequently but showered the office staff with chocolates during the holidays.

  A few weeks later, Auntie Biblia told me the doctor had laughed when she asked about the kissing
bug disease. He was Latino, maybe Colombian, and he knew about the parasite and the illness. “He said at my age I would have gotten sick already.”

  That was true. I had not thought about her age or my mother’s age. If they were infected, the parasite had spared them. I considered that it wouldn’t hurt to get tested myself. I had been in Colombia as a child, and I remembered trips to warmer regions of the country. The likelihood was very low, but possible. Dr. Tanowitz, who had told me that T. cruzi “loves fat,” had also shared that one of his Chagas patients was a New York City firefighter. It struck the doctor as strange that this man would have the disease. Then, he learned that the man’s parents were from South America and had sent him back home as a child in the summers. The doctor figured that either the man had been infected during those vacations or when his mom was pregnant with him.

  My doctor in Ohio told me she’d consult with an infectious disease specialist, and after a few calls, I had an appointment with the phlebotomy office where I did my annual blood work. I reminded the phlebotomist, a woman with a blonde ponytail, that I had small veins and she needed to use a thin needle. She told me she’d never heard of this test before. “We had to call the lab.” She squinted at the paperwork. “You have a family history,” she said.

  I opened my mouth to explain that this parasitic disease is not hereditary in the way she was thinking, that I didn’t know if my mother was infected, and that I could have been infected as a child from contact with kissing bugs, but that the chances would be slim. Then I closed my mouth. What the woman was saying was probably the most accurate statement about my relationship with this disease: a family history.

  Three days later, the results came back. I tested negative.

  SOATÁ

  When you’re the American daughter of immigrant parents, there are certain rules governing travel: You don’t fly to the homeland without a tía. You don’t take public buses there without a male cousin. You don’t get into a car that doesn’t belong to your tío or primo.

  The rules never felt like rules to me since they had been with me for so long. It was only in 2018 when I boarded a plane in Miami, bound for Bogotá, that I began to feel uneasy, as if I had lost something significant like my wallet or cell phone. I had made two other trips as an adult to Colombia, but this was my first time flying there by myself, and what I had lost was my mother, my tías—the rule that you can only travel to the motherland in the company of the women who raised you.

  Everything jumped into sharp focus: the pointy dress shoes of the man across the aisle, the ironed crease of his jeans, the lilt of the Spanish in everyone’s mouth, which is so particular to Colombians and which I have never mastered. The woman next to me stuffed her bouquet of factory-made roses under the seat in front of her. She was lugging fake flowers to a country that had sold twenty-four million roses to Walmart for Valentine’s Day that year.

  No one, of course, asked me why I was traveling without an auntie or even my sister. If they had, I would have said that Colombia was battling the kissing bug and I wanted to see what was happening for myself. No, Colombia did not have high rates of the disease compared with other countries in South America, but in 2013, it had become the first country in the world to eradicate another neglected disease: river blindness, or onchocerciasis, a disease I still cannot quite comprehend because it baffles the imagination that a blackfly can bite a person, then transmit a worm that has the capacity to blind its victim. The defeat of river blindness had apparently encouraged Colombia’s health ministry, and they had teamed up with the international nonprofit organization Drugs for Neglected Diseases initiative (DNDi) to screen more people for the kissing bug disease and to make it easier for those infected to get treatment.

  DNDi had been started in 2003 by physicians from Doctors Without Borders and their colleagues. After Martin Shkreli’s declaration that he would snag FDA approval for benznidazole and price a course of treatment at $100,000, DNDi’s staff decided to fight back. Along with Doctors Without Borders, they signed an agreement with the Chemo Group (now known as Insud Pharma), a pharmaceutical giant competing with Shkreli’s old company. DNDi agreed to provide research support to get the coveted FDA approval of benznidazole, while the pharmaceutical corporation committed to putting profits toward programs that diagnose and treat people with the kissing bug disease.

  When I started packing my bags for Colombia, DNDi, Doctors Without Borders, and the Chemo Group had just beat Shkreli’s old company, winning FDA approval for benznidazole. The company later began talks to donate benznidazole to the World Health Organization to treat children who have the kissing bug disease.

  I phoned DNDi’s communications consultant in Colombia, Elizabeth Pérez, who told me about a project the organization had started in Boyacá with the country’s health ministry. The name Boyacá startled me. Ramiriquí, the town where Tía Dora was born and where my mother and, in fact, all of my aunties grew up, was in the state of Boyacá. Elizabeth explained that the new project was located only a few hours from my tía’s hometown.

  …

  In Bogotá, I violated every rule I knew about being an American daughter. I took a taxi to a bus depot in the northern part of the city without a tío. I hopped on a bus without an auntie or a primo. An hour or so later, I landed in Tunja, the capital of Boyacá, and the next day, around five in the morning, before the sun came up, I slipped into the car of a young man named Luis Gabriel, whom I had never met before.

  That is not the story I would have told Tía Dora. It’s not the story I told my mother later. Instead, I told her about Elizabeth, how she could immediately rattle off a list of zoonotic diseases and what they can do to the body, and how at five in the morning, she looked stylish in her short leather jacket and fitted jeans, while I stumbled along in a boxy rain jacket. I would have told Tía Dora, as I did Mami, that Elizabeth, only in her thirties, had already worked on a Zika campaign in Colombia with UNICEF, and now with DNDi, she was developing an educational graphic novel on the kissing bug disease with the hopes that outreach health workers could use it to teach children and their parents about the disease and the importance of being tested and receiving medical care.

  My mother liked everything I told her about Elizabeth. Tía Dora would have too. I added that Elizabeth’s brother, Luis Gabriel, was driving us, but I did not mention how fast he drove, how the car took the sharp curves of the mountains hard, me in the copilot seat, all of us practically flying, and how the clouds hung so low that we drove straight into them. When the clouds cleared, I could see a river miles below.

  For three hours, we drove north along the Andes in Boyacá, heading roughly in the direction of the border with Venezuela, the weather growing warmer the longer we drove. The scenery remained the same: mountains and clouds and lush green land stretching for miles. I wondered what would happen with this land. The civil war in Colombia, which had raged for more than fifty years, had ended in 2016, at least on paper with a peace treaty, and in the last decade, tourism to the country had increased dramatically. Boyacá with its colonial towns and close proximity to Bogotá offered popular tourist spots. Soatá, where we were headed, was a pit stop on the way to a national park farther north in the country. Still, similar to the United States, the coveted jobs were in major cities, and a Colombian entomologist I had interviewed told me these towns were emptying out. They were mostly home to ancianos, older people, and young children.

  Luis Gabriel was probably in his twenties, and he made the sign of the cross every time we drove past a statue of the Virgin Mary on the side of the road. I peppered him with questions about Catholicism and La Virgen del Carmen and his work. He said, “Sí, señora” often, sometimes at the start of a sentence, which reminded me of how Tía Dora had always wanted me, when I was a child, to answer her with “Señora,” and I had resented it—why? “Señora” had struck me as silly, as pompous, as unnecessary, as my auntie’s way of insisting that I be more of a lady, more like her, that I recognize her as an au
thority figure, but when Luis Gabriel said it, the phrase sounded lovely, like the start of a poem. By the time we reached Soatá, I realized that maybe Tía Dora had not been trying to make me into a lady. Maybe she had only wanted me to be more Colombian.

  …

  Soatá had a central plaza filled with trees and lined by a string of buildings including the mayor’s office, two modest hotels with Wi-Fi, a store stocked with empanadas, and a lounge selling tinto and ice cream sundaes. A commemorative plaque at a corner building announced that Simón Bolívar—who led South America’s break from Spain in the early nineteenth century—passed through this town five times and stayed overnight.

  The town did not have high rates of the kissing bug disease compared with other rural areas in Colombia—fewer than 4 percent of the seven thousand people living there were infected. The local hospital, however, served the people in neighboring pueblos and those in the mountains, making Soatá a hub in the area for medical care. The pilot project on the kissing bug disease had been underway for more than a year and had changed some of the mechanics for delivering care. It was possible now for primary care doctors at the hospital to diagnose people with the disease, as opposed to sending patients to specialists. The hospital was also stocking the drug nifurtimox rather than having patients wait for it to be shipped from the city.

  The day was warm, and the mayor’s office arranged to have a local man who knew the roads well drive me, Elizabeth, and two of the town’s health outreach workers down the mountain to a vereda, a word I’d never heard before and which literally means a dirt road. In Colombia, it also refers to small agrarian communities, and everyone in Soatá talked of them as if they were mystical lands. They had grown up in a vereda, or they had some claim to land in one. The green onions sold in the market on Saturdays came from the veredas, and so did the giant sacks of criolla potatoes and the enormous piles of strawberries. The only way to reach a vereda was to know someone with a car, or to hitch a ride on the school bus that took children to and from town, or to walk.