…
Javier and Carmiñia trotted down the stairs after the church services with a dozen other parishioners and lined up in the classroom. Carmiñia marveled at the rapid tests, which look like pregnancy test sticks. She had never seen one before. Neither had I. It felt surreal that a stick so slender in size could be used to find an ancient parasite. The FDA would approve the first rapid test later that year, so the kits were available in this church basement only because they were being used in research.
How effective are the rapid tests? A few studies in Latin America produced mixed results, but the consensus among public health experts seemed to be that rapid tests served the purpose of screening substantial numbers of people when it was not possible to have traditional tests that require staff to do persistent follow-up weeks after a blood draw.
The first time Carmiñia was tested, she was nineteen and living in South America. “How did they test you?” I asked.
“They used to put the vinchucas on you,” she said.
After the acute phase of the infection, doctors can’t generally spot T. cruzi by observing a blood sample under a microscope. So before it became possible to check for antibodies to the parasite, the primary way to see if a patient was actually in the chronic phase of the disease was to use the method that nature had devised: the kissing bug.
When Carmiñia was nineteen, lab technicians used pincers to place disease-free kissing bugs into a small box. They tied the box to the fleshy part of Carmiñia’s upper arm with a handkerchief. The kissing bugs, lab-raised and starved, sensed the heat of her flesh and turned their mouths toward her. One side of the box had only a thin fabric so the insects could plunge their needle-mouths through the barrier and feed on Carmiñia. Weeks later, technicians dissected the insects, looking for evidence of the parasite, and found it. Her mother and brother were also tested, but they were negative.
Almost thirty years had passed since Carmiñia had first tested positive, and she still remembered having to sit still as the insects jabbed their needle-mouths into her skin. “Those bites are worse than a bee’s,” she told me.
She returned every year to the lab to be tested. The result was the same: positive. After three years, she stopped going. She had no symptoms that she could feel.
Carmiñia wasn’t worried about turning up positive on a rapid test. “We’re Christians,” she told me later. “We say we’re in the hands of God.”
A researcher pricked Carmiñia’s finger and held it over the stick that was the rapid test. Javier stood by, waiting his turn and chatting with other parishioners.
The test stick held a drop of Carmiñia’s blood and showed a strong red line. That meant the test was working. A timer went off after ten minutes, and the researcher added a drop of a protein mix. If Carmiñia was infected, the rapid test would show a second red line. The total test time was twenty minutes.
We waited, and the researcher had a long list of questions. Had Carmiñia seen the kissing bugs? Had she lived in the city or in the country as a child? Had she finished high school?
“My grandfather had a ranch,” she told us. She was a city girl growing up, but every year, she had spent two, sometimes four months at her abuelo’s ranch, sleeping each night in a house made of barro, of mud. The researcher nodded, and I interpreted Carmiñia’s answer in my head: a rural house like that with places to hide during the day was ideal for kissing bugs.
We glanced at the white stick. A second red line gleamed. Positive. Carmiñia smiled. She wasn’t worried about dying, but she did want the EKG and the echo that Dr. Marcus was offering down the hall.
Nearby Javier boasted to another parishioner that, considering his job back in South America, he probably had the disease. “I was a veterinarian. I traveled all over, sleeping wherever I could. I must have it.” He took a seat and held his index finger up to the volunteer. He wasn’t afraid of the rapid test. At least not yet.
…
As the day wore on, parishioners lined up in front of the paper dolls taped to the walls. The researchers and volunteers started fourth and fifth testing stations in the corners of the room. The parishioners talked among themselves in Spanish as they waited. They wore their Sunday best: slacks and button-down shirts for the men, skirts for the women. A preteen girl wrapped her long arms around her mother’s waist.
As the line of people to be screened grew, I realized that these families—in the basement of an evangelical church in a Virginia suburb—were figuratively and literally underground. White and well-off Americans would not see them, and so these families constituted, in a way, a Second America.
It was a place familiar to me. I spent my childhood without health insurance since my parents earned too much from their factory jobs to qualify for Medicaid. Seeing a doctor was a careful negotiation in our family. We had to consider how much an office visit would cost each time. Starting in fourth grade, I began receiving dental care at clinics for the poor, waiting alongside Latin Americans and African Americans and white Americans. It occurred to me that newly arrived in the United States, Tía Dora would have been waiting in a church like this. All the women in my family would have been here. They were part of this Second America too.
…
I joined Javier at a testing station. He told me he had been a rural veterinarian for forty-seven communities back in South America, and he did have the stocky build and serious face of someone who could deal with agricultural animals: vacas, caballos, ovejas. The travel was hard, and like Charles Darwin traversing South America in 1835, Javier had not been choosy about where he stayed the night. “I slept wherever I was.” Where he worked was a region of South America that the World Health Organization identified in 2015 as a hot spot for the kissing bug disease, a place where the insects are rampant.
The volunteer at the training station was Jenny, the LASOCHA cofounder whose mother had the disease. Short and petite with bright eyes, Jenny wore a T-shirt and black pants and her long hair pulled into an efficient ponytail. She pricked Javier’s index finger for a drop of blood and fired away with the questions from the form. When she asked, “Does anyone have Chagas in your family?” Javier laughed.
“Everyone!” he exclaimed. “My tía, my parents.”
His carefree attitude surprised me, but unlike me, Javier had grown up in a community where many people have the disease. It was not rare or strange or frightening.
Later, Javier explained it to me like this: “When you know you have it, you start to save money for the transplant.”
It took me a few seconds to understand that he meant a pacemaker, not a heart transplant. It’s very rare in his country for people to be able to save money for a transplant.
A pacemaker kept Javier’s auntie alive. By the time she reached her seventies, she was living in Virginia and her second pacemaker was giving out. She needed a third one. “The parasite turned her heart into paper,” Javier told me. That’s how thin her heart muscle was.
While asking Javier questions, Jenny examined the rapid test. Two clear red lines emerged. A positive. Javier had not seen it.
A tall parishioner in a white button-down shirt called out, “Hermano, positive or negative?”
“I don’t know,” Javier said.
I stared at the rapid test kit in silence. Jenny did too. She looked at Javier and, lowering her voice, said, “The results are positive, but we will take a blood sample to confirm this.” It was possible that this was a false positive, but given where he had grown up and the work he had done and the fact that so many of his family members had the disease, this positive result was probably accurate.
The ends of Javier’s mouth fell. His face hardened. He did not look at Jenny or me but stared straight ahead into the room with its paper dolls and its chaos of voices from people shuffling to testing stations.
Jenny jumped to her feet. “If you could come over here,” she said to Javier, motioning toward the back of the room where a tall man was ready to take a blood sample.
<
br /> I had watched the blood draws of two women, and it had been difficult. The blood had refused to come, but not so with Javier. Once the rubber band was bound around his arm, the veins popped into view. The needle entered, and he did not flinch. The blood rushed into the tube.
…
In the makeshift cardiologist’s exam room, Carmiñia was already undressed to her waist and on the table and hooked up for the EKG when Dr. Marcus realized the software on the laptop was not working. Fluent in Spanish, she apologized to Carmiñia. Could she and her husband return next Sunday? Yes, they could. In the meantime, the portable echocardiogram machine might work, though it looked, to me, like a bulky Apple laptop from the nineties.
Dr. Marcus squeezed into the few inches of space between the desk and the provisional exam table and pressed the probe for the echocardiogram against Carmiñia’s chest. On the computer screen, the valves of her heart appeared—angular and pulsing. Dr. Marcus measured the dimension of her left ventricle. “This tells us if the heart is enlarged,” she told me.
Finally, Dr. Marcus said in Spanish, “Señora, your heart is normal. La felicito.”
“Gracias,” Carmiñia answered, still on her back, smiling as if she knew it could be no other way.
Dr. Marcus wanted to see Carmiñia’s heart from another angle and asked her to lie on her left side. “This is looking at how fast the muscle is moving,” she told me, watching the screen, and the results were good.
Next, Javier jumped on the table. “Do you smoke?” Dr. Marcus asked. Javier said no. In his younger years, he had run marathons.
On the screen, Dr. Marcus pointed to what she said was called an inverted Mercedes-Benz sign: the pulsing white lines that make up the aortic valve. Dr. Marcus moved the probe around Javier’s chest. She had him turn on his side. He was fit, so she didn’t have to move past much body fat.
“You’re seeing a very normal beating heart here,” she told me.
I stared at the screen as if it were a winning lottery ticket. Javier grinned.
Later, he said to me, “We have a saying: ’You’ll live until God wants you to.’” He admitted that not everyone thinks as he and Carmiñia do. Another parishioner who found out he had the kissing bug disease that day was shaken. Javier had said to the man, “Tranquilo, hermano. There’s no reason to be upset or to be ashamed.” But Javier wasn’t sure he had convinced him.
THE GREAT EPI DIVIDE
I am a child of the first AIDS generation, and so my friends and I grew up learning about a public health crisis during science class. We were told that pathogens are created equal, that pathogens do not care if we speak Spanish or have citizenship. Pathogens are not racist. They can get us if we are not diligent about our bodies.
Standing in a church basement, watching the line of immigrants to be tested grow longer, I began to consider another narrative because it seemed to me that the kissing bug disease is contained to a Second America, and that, in broad and sweeping ways, this containment is often the goal of public health programs. We do not consistently eradicate infectious diseases—we contain them to communities of color, to the poor, to the homeless, to people in this Second America.
In the eighties and nineties, thanks to activists, AIDS became a public health priority, but the United States did not win the war against the virus. Instead, AIDS has been contained in the Black community. In 2016, the CDC estimated that one in two African American men who have sex with men will be diagnosed with HIV. More than half of all new HIV diagnoses occur in the South, leading health reporter Linda Villarosa and her editors at the New York Times to describe it as “America’s Hidden H.I.V. Epidemic.”
Science does not explain why African American gay and bisexual men are more likely to have HIV than their white counterparts. Viruses, after all, do not target Black communities. One explanation is that in the late 1990s, federal dollars were spent on abstinence-only sex education programs that left young people with little scientific information about their bodies. This policy disproportionately affected Black teenagers. As legal scholar Risha Foulkes has outlined, abstinence-only education programs were concentrated in poor schools that mostly serve Black youth. Zach Parolin, a researcher on poverty and social inequality at Columbia University, found that states with higher numbers of Black families are more likely to spend their welfare dollars on programs promoting marriage between a man and a woman.
Containing diseases to a Second America also explains what happened with tuberculosis. While many of us here in the United States grew up thinking that the disease had been wiped out, we had actually held it in place in other countries. The antibiotics so famously used in the US to battle the airborne bacteria that cause tuberculosis never made it to poor countries in South Asia, Africa, and Latin America in a sustainable way. Now the rate of tuberculosis in the United States is fifteen times higher among immigrants than those born here, and the people with tuberculosis who were born in the United States are more likely to have lived in homeless shelters or prisons.
In 2015, tuberculosis outranked AIDS as the leading killer among infectious diseases around the world, and two years later, New York City had its largest spike in cases in twenty-six years. The borough of Queens—where almost half of the people are immigrants and 56 percent speak a language other than English at home—had the highest rates in the city. The city’s health department put the blame squarely on the choices the federal government made about funding. During the Obama administration, federal monies for prevention and treatment of tuberculosis were cut by 65 percent.
Science, of course, plays a role. The bacteria that cause tuberculosis adjusted to antibiotics, resulting in strains resistant to these medications. But this pathogen does not go after people in homeless shelters or in prisons. It does not pick a neighborhood in New York City because people there don’t speak English at home. We elected officials who supported building more prisons and who slashed funding for tuberculosis prevention programs, and the disease boomed in these places we neglected.
Four years after I spent that Sunday in a church basement, this Second America made headlines. New York City officials began reporting the death toll from Covid-19, and it turned out that the virus was killing Black and Latinx people in the city at a rate twice as high as whites. Similar reports arrived from other corners of the country. In Louisiana, 70 percent of those who died from Covid-19 were Black though they made up only 33 percent of the state’s population, and in Utah, where Latinx women and men constitute 14 percent of the state’s population, they accounted for almost 35 percent of the state’s Covid-19 cases.
While a number of health officials and politicians cited underlying health conditions to explain why Black and Brown people were maybe more vulnerable to the virus, so many of those conditions could also be linked to longstanding racial disparities in health care. New York City’s comptroller found another reason for the higher death toll from Covid-19 among Black and Latinx communities: 75 percent of the people working in the city as grocery clerks and housekeepers and train operators were people of color.
…
In Tracy Kidder’s biography of the famed physician Paul Farmer, Mountains Beyond Mountains, the doctor points out that there exists a “great epi divide.” People on one side of the epidemiological divide, Dr. Farmer argues, will die of diseases related to old age, while those on the other side will die much younger because medicine for treatable diseases is too expensive or the village doesn’t have enough food. Or, I would add, because laws put restrictions on who qualifies for Medicaid or who learns about safe sex. Or because prenatal screening tests do not include the kissing bug disease.
The phrase “the great epi divide” makes me think of old paper maps and signs about who is allowed to enter and who has to stay out. It is a phrase that points to an American reality: some people are taken care of and others are not. A choice is made. The “great epi divide” sounds more accurate to me than the more ubiquitous “disparities in health care,” which suggests t
hat a terrible thing has happened, but without active participation on anyone’s part. Disparities arise. Inequalities exists. These words trouble but, at the same time, offer reprieve: no one is implicated. The same is true of the word “poverty,” that knife of an abstraction. A phrase like “diseases of poverty” obscures the degree to which we have made choices about funding for public health.
The great epi divide, on the other hand, says what we have done in the United States to contain infectious diseases to a Second America. We have placed physicians in the position where they have to fight to get their uninsured patients with the kissing bug disease standard treatment for heart failure. We have passed laws so that a mother of two young children like Janet can’t get an antiparasitic medication because of her citizenship status or her job situation. We have failed to educate obstetricians and gynecologists about a parasitic disease from Latin America even as more physicians in the United States find themselves caring for expectant moms from this part of the Americas.
None of this is to suggest that we are bad people. When it comes to infectious diseases, many of us are afraid. We don’t want to get sick, and we don’t want our children or elders to be in any danger either. If that means granting priority to our health over that of others, we do it. We accept the epidemiological divide with the hope that it will keep us safe, and the tyranny of the great epi divide is that for the most part it does shield us from illness. We work remotely and order groceries online to avoid Covid-19. We drink tap water freely without a thought of cholera. When dengue and Zika strike, we cancel trips to Key West and Puerto Rico. Or we travel to Haiti and Brazil and South Florida armed with bug repellent and a rage that is historical because our families live in poor communities and the epi divide is one we have been crossing all our lives.
The Kissing Bug Page 17
