Chagas – Life After the Barber Bug
The barber bug continues to create victims around the world. Thousands of diagnoses are made around the country every year, with no information on how infection occurred. Wherever it may be, the classification criteria for Chagas Disease is poverty.
“Is Dad going to die?”
Eight-year-old Henrique’s question stems from his shock on the day illness broke the silence. In Ceará, a state in the northeast of Brazil, 20,000 people have been diagnosed with Chagas and another 260,000 don’t know they have it. Most will die without knowing. Time moves slowly while Chagas disease rushes forward, always tied to poverty and to the past. The disease is so pervasive it’s hard to believe 2019 will mark 110 years since its discovery; treatment has barely evolved.
Your current social status means nothing when your humble origins have undersigned the risk. “Neglect” is the nickname of the illness caused by the protozoa trypanosoma cruzi, and so it has become naturalized – in the broadest sense of the term. It’s not that “enlarged heart disease” is back, but rather that it never left. Thousands still live in rammed earth houses, which the barber bug uses for shelter. Those who no longer, or never, lived this way, but nonetheless live in endemic regions, are at greater risk.
Chagas results in one death a week in Ceará, a higher mortality rate than dengue. When it is illness, and not health, that knocks at the door, seropositive patients try – and manage – to live a normal life. But there is danger in normality: although Chagas is endemic to various regions in the interior of Ceará, little attention is paid to those places where negligence is parasitic and norm. At least twenty-five cities in Ceará are still considered high-risk. Limoeiro do Norte tops the list, but even this will come as a surprise to many there today.
When Chagas became news in Dedé Bessa’s house, it arrived with the sting of a sentence. He hadn’t expected the doctor to test for it. He’d gone in with knee pain and palpitations in his heart, which had a habit of accelerating without reason. He tried but failed to run on the clinic’s treadmill. As far as he knew, other than his right knee, he was completely healthy: thirty-nine years old, five-foot-nine and sinewy arms from nine years of handling shipments at the supermarket where he works.
Was it exhaustion, stress? He’d never smoked, never drank, and could only tell alcohol by the smell. Father to Davi (4) – who shares his green eyes – and Henrique (8), he is husband to María José, a teacher. He has health insurance, and soon some light will be shed on the uncertainty that’s been raised in him. Because Dr. Eduardo decided to investigate.
“Your test results are ready,” the lab clerk says.
He picks up the envelope, not intending to open it. A lack of courage can give benefit to uncertainty, when not knowing seems like the best way to avoid the problem.
“Let’s open it,” says Mazé.
“No, leave it to the doctor.”
He puts it off until he’s returned from work, late afternoon, after showering at home and heading to the clinic with the paper that holds his concern. He’ll go alone: evenings, Mazé works and he looks after the kids. On one of the longest evenings of his life, he runs through those who’ve died of “heart trouble” and those who are living with Chagas, like his friend Zé Vital, who two years ago found out he carried the disease that enlarges the heart. “He seems all right.”
From the doctor’s hands, in the chilly room, the news summarized on the paper in the bold letters of the result, without further delay: REACTIVE. The silence ends.
“AM I GOING TO DIE OF THE HEART, DOCTOR?”
At this juncture, soothing means clarifying: “Settle down, we’re still not sure where the disease is. It doesn’t kill you immediately. You’ve got years ahead of you, if you know how to do it right. And if you do everything I tell you. If I make an appointment for you, don’t skip it. We have to take this seriously.”
Infection generally occurs through the barber bug (triatoma brasiliensis), whose parasite-laced feces penetrate the skin. Then, the trypanosoma cruzi hitches a ride on the blood vessels and settles into some part of the body, such as the intestines or heart.
Desolate, Dedé leaves to break the news to his workmates, though in reality it’s to cry. To cry enough so that by the time he gets home, where he’ll have to be strong without using his muscles, he has dried out completely. A ten-minute motorcycle ride between the center and Arraial, now it’s his turn to break the news. He knows Mazé is still at Escola Normal, where she teaches.
On nights when mass is held at Nossa Senhora das Graças chapel, the community bustles with life. Dedé takes advantage of the quiet at home and lies in a hammock in the backyard facing the adjacent house, which belongs to Fátima Bessa, his sister-turned-mother when he was just three years old (they’d lost their parents as children).
Someone calls Mazé, who learns that her husband is holed up in a hammock. But the first person to learn about the results is Henrique, their eight-year-old son, curious about the scene at home.
“Why’s Papa crying?”
“It’s nothing, honey, he just found out he’s got an illness.”
“Do you have a fever, a headache?”
“No, sweetie, Papa’s got Chagas disease.”
“It’s the barber bug disease. It stung Papa, like a muriçoca mosquito.”
“What’s going to happen? Is Papa going to die like Grandma?”
Fátima, “Fafá,” had died of cancer two years ago – another disease that seals fates in Limoeiro at a higher rate than other cities – 38% higher, according to the Federal University of Ceará (UFC).
“No, Papa won’t die, ‘cause there’s treatment. Don’t worry. Papa doesn’t even know where it is yet…”
“Will everything be all right?”
“It will, don’t you worry now.”
It’ll be All Right
The pain of imagining his absence from his family is greater than the pain of learning about his illness. His son’s interrogation is also the first moment he’s told himself, at home: don’t worry. It’ll be all right…
Mazé comes rushing in, having heard over the phone that Dedé didn’t look right, already suspecting something. She’s come as consolation and strength. “Honey, don’t worry. This is what Chagas is like, but you’ll be careful. Go inform yourself first.”
Days pass, with fear giving way to information. Dedé tries to forget death and concentrate on life and on the doctor’s words: “You’ve got years to live, if you know how to do it right.”
The patient has to be examined in Fortaleza, the state capital. There are follow-up protocols at the Central Public Health Laboratory (Lacen), and the State Health Department, but they go another possible route: a referral to the Hospital Universitário Walter Cantídio, Hospital das Clínicas, where the parasite’s location will be investigated. This will be followed by a referral to the Pharmaceutical Care Unit, at the Federal University of Ceará (UFC) where Dr. Fátima, who for two decades has led a work group that serves carriers, closely monitors the administration of benznidazole, an aggressively chemical pill known to cause thirty-one side effects, headaches, diarrhea, and loss of sensation in the fingers and even the palate, which is sometimes irreversible.
With only a small group and access to few resources, Dr. Fátima Oliveira is trying to reverse the negligence to which the disease has historically been relegated across all spheres. The Vector Control Center of Ceará (Nuvet), in the State Health Department (Sesa), has its own sector for Chagas, dealing in observation, mobilization, awareness, and monitoring of the disease.
They compete with arboviruses for financial resources, another facet of the word “negligence.” While in 2016, the government spent R$77.3 million to combat Aedes Aegypti (responsible for dengue, zika, and chikungunya), there was no (there still isn’t) budget allotted to directly combat Triatoma brasilienses. This information that can be found in the study “Aedes aegypti and society – the economic burden of arboviruses in Brazil,” led by São Paulo’s Sense Company, according to data they obtained from the government.
The material cost of serologies is another poorly managed resource. “People often talk about the lack of health resources, but often it’s the case that money isn’t spent the way it should. The Ministry of Health isn’t meeting its mandate. Everything Lacen does is with its own resources,” vents Cláudia Mendonça, Nuvet’s technical adviser.
One way of indirectly controlling Chagas Disease is to replace rammed earth houses, which we’ll cover in this series. Meanwhile, in the UFC’s Chagas Disease Research Lab, researchers sometimes use money from their own pockets to purchase test kits. “Even though there hasn’t been much advance in treatments for Chagas, specifically, medicine has taken great strides in terms of related diseases. Today, a heart patient has a very high life expectancy,” explains cardiologist Eduardo Arrais Rocha, who at Hospital das Clínicas receives newly diagnosed patients from Ceará.
Determined to take care of himself, Dedé took the 280 prescribed pills. Three a day. He not only has pharmaceutical care, but his wife and workmates to look after him. “I’ll the meds as if they were ASA,” he decided. “Then it worked out.”
Of the thirty-one possible symptoms, he’s only had headaches. He knows he can’t take any other medication. Along with his friend Zé Vital, also a Chagas patient, he arrives at the conclusion that the disease looms larger for those who don’t take care of themselves or who stop taking their medication. Or those who don’t know they’re housing a parasite. The second conclusion he arrives at is that he is young and will still live a long life. So long as he follows medical advice (not to mention keeping healthy eating habits), his son won’t have anything to worry about. For now, a year since September 2017, it has worked out.
The reality outside Dedé’s house, on the other hand, is out of control. Unable to compete with arboviruses, the budget for the most common social disease in the north/northeast of Brazil is dwindling. Many doctors are unaware of the illness and, in most cases, without proper investigation, they treat patients’ cardiac arrhythmia as an isolated problem, even when it’s linked to arterial hypertension. Many carriers only find out about the disease thirty to forty years after they’ve been infected. They’d grown up in a time when people lived in rammed earth houses that abutted corrals (bulls, cats, dogs, and chicken are also hosts).
Though Dr. Eduardo Arrais was able to advise Dedé, he’d also like there to be support from health administrators: “It’s unacceptable for the mayor and health officials to see a situation like this and not condemn it. The cycle is perpetuated in the region. Of course, it’s been considerably reduced, but it shouldn’t have existed in the first place like it does in Limoeiro and Quixeré, not under any circumstance.”
The fortunate, live, while the unfortunate, die, in these modern times, of that incurable “poor man’s disease.”
Chagas – One Third of Chagas Patients have Heart Problems
The belated discovery of this illness began the moment trypanosoma cruzi settled into the “muscle of life.” It all started with a “strange exhaustion,” which sometimes led to the need for a transplant.
Nonato has an Enlarged Heart
Lunches are still sacred, with Nonato’s family seated around the table. They’ve just stopped being calm. The difficulty used to be in getting food on the table. Now, it’s getting food into his stomach. His hand firmly grips the spoon, which shovels at the plate, then holds a fistful of food hovering in the air. His head falls forward, as in reverence. His mouth chews the food as much as possible, until it becomes a moist paste. Like a mountain climber waiting, unhurried, to reach the summit.
His tongue pushes it back and mentally, right then, Nonato asks God for the food to go down. He takes a sip of water and asks God for the water to go down. He feels the food in his esophagus, and asks God for the food not to come back up. He barely touches his plate again and he starts coughing and burping at once. Even at home, with his family, the shame raises his head, making him get up.
“Stay, Dad. It’s not a problem.”
The shame her father feels inside his own home makes Aline, his youngest daughter, uncomfortable. It’s no use. He walks to the back of the house after a bucket to hold his vomit. It’s always like this, all day long, every day. Gratitude for food mixed with the anguish of eating. His lunch ends there.
An investigation begins into what the problem might be, with suspicions that it might involve his stomach.
Gastroenterologist is as difficult a word as it is to find one in Icó, in the south central region of Ceará, where he lives. But it isn’t that. He becomes tired faster than usual, as if the hoe he used for his labor had grown heavier.
When he lies in his hammock, at night, after dinner, he no longer follows the news on Jornal Nacional. His body weighs on him. Though he can’t tell, he snores louder, but snores stop being a problem when they’re silenced out of the blue. Iraci inches closer to her husband. His heart beats, but she can’t feel him breathing. Then, like a man emerging from water, in a great commotion, he finds the air he’d needed.
“Nonato, you stopped breathing yesterday.”
It’s the same the following night. Iraci takes her cellphone and starts filming. Fourteen, fifteen, sixteen – she counts in her head and begins to worry about the delay – seventeen seconds… Nonato’s lungs fill, once more, like a man surfacing from a dive. Iraci, who has been watching everything, sighs in relief.
The abyss was the uncertainty, which was only settled once the results came back: his heart is growing. Suspicion ends with the blood test, which is reactive for trypanosoma cruzi, the protozoa that is responsible for Chagas disease and is incurable to this day.
For Nonato, the worst news is yet to come: he’ll have to lay down his hoe, the tool he was born to wield. Not long ago, he’d sold his house in the city so he could build another on a piece of land further away, where he could plant, rear animals, eat. The hoe is like the paintbrush for the painter, the pen for the writer, a tool for the autonomy of a lean, 58-year-old man with sun-toasted skin. Because there’s no greater autonomy than planting and eating. Now, as if his digestive troubles weren’t enough, the farmer will have to stop farming. “The doctor took everything from me. And she’s my warden,” he says, pointing to his wife, Iraci Dantas, 54, always in a skirt or dress, her hair tied back, eyes clear and voice firm. Whenever he tries to grab a pail of water, she immediately commands: “drop that.”
His Sisters’ Passing
She keeps tabs on her husband by day – telling him when it’s time for his meds – and by night while he sleeps. She ends up falling asleep after him. She wept when she heard about his disease. Not because she doubted the doctor when he said her husband would live a long time yet, but because Chagas was an unhappy, quasi-nickname for the Araújo family, who’d already lost two sisters to it: Lúcia, in São Paulo, who lived another decade with her new heart; and Milda, in Ceará, who discovered it suddenly and lived for two years with treatment. And even though it occurs in less than a third of Chagas patients, both had enlarged hearts.
But Iraci’s worry butts heads with her husband’s calm:
“It’s up to God now. Let’s do what needs doing.”
A lot has changed in the farmer’s life. His children are all grown up. Amanda is 31, Rafael 26, and Aline 22. Kids, in their parents’ eyes, don’t age. But time, after all, is master of acceptance. Aware of his wife’s dedication, and banned from the field, Nonato does his best to be helpful at home. He wakes up early and makes breakfast, which he serves to his wife in bed.
“She works all day, looking after me, I have to give back in some way.” With the discovery of his disease, came other revelations. More people stop by the house. They want to know how he’s doing. Some come with words, others also come with food hampers, and there are those who come with money to help with medication. Nonato, who’s always done his best not to ask anyone for anything, awkwardly yet gratefully accepts. Not because he’d consider turning them down, but because he doesn’t think he deserves it much. Now friends aren’t strict friends, but acquaintances, too, people he’d exchanged just a few words with. Even strangers. His disease has brought everyone together.
“I didn’t know people cared this much about me, Iraci.”
“You talk people sore wherever you go and strike up friendships with everybody.”
In the end, he agreed: “I don’t feel like I’m any better than anyone else. I don’t feel I’m any better than an animal. There are people who mess with drunks on the street, but that won’t do. You’ve got to be respectful. We’re grateful to God. Everything that’s going on has me on my knees. I’m going to be happy, what I won’t do is be sad.”
Unlike with Chagas, great strides have been made with heart medication: carvedilol, metoprolol, bisoprolol, enalapril, captopril, ramipril, spironolactone, furosemide. For Chagas disease, there’s only benznidazole.
When he wakes up at 5:30 A.M., Nonato takes his morning pills, heats up some water over a fire, and looks outside. The orange trees blossom on his ranch (“the boy’s not watering things right”) while mangos, limes, and acerolas wilt on their stalks for lack of a farmer. He misses the field, but he’ll do what the doctor says. “God grants doctors wisdom.”
A year has passed since Nonato discovered he had Chagas, and he’s trying to live better every day now. He still throws up often. What’s the connection? Though it occurs in only 10% of cases, Chagas is one of the most common causes of esophageal dysphagia, where contraction of the esophagus becomes impaired. Which is why he continues to turn down his friends’ invitations to come over for food. “I don’t think it’ll make anyone feel good.”
And since he can’t be master of his plants anymore, at home he tries to keep the doors open to guests, and to cultivate another – “happy, not sad” – way of life. He has started realizing that before his heart became enlarged, also known as cardiomegaly, it was already quite big.
Chagas Disease Can Affect the Intestine, and an Entire Life
In nearly 15% of clinical manifestations, the parasite settles in the large intestine. The necessary medication isn’t offered by the public health network. The poverty that leads to the disease is exacerbated, as is the pain.
“You never expect it.”
When it is hungry, the barber bug will choose its prey. Settling into an area of the sleeping body, it inserts two antennae into the body. The saliva in one anesthetizes the region while with the other, blood is drawn – for up to 30 minutes, when it’s full. As if completing a digestive cycle, it then defecates and leaves. The anesthetic effect passes, the victim, often asleep, scratches at the area, and the protozoa that was once in the feces now enters the bloodstream.
In the span of a dream, Dona Lúcia’s nightmare – and that of many others – begins. She ignores any feelings of hunger. Her desire for food mingles with the feeling that she’s coming to a dead-end. The food won’t transform, revealing another facet of this neglected illness: it’s more than just a “heart disease.”
“You never expect it. I knew what the disease was, but I never expected it.” After “not expecting it,” getting news that she was seropositive felt hopeless. “I’d seen three of my neighbors go through this, all of them siblings. They eventually died. Then, it was my turn. I immediately thought I didn’t have long left. You feel so downtrodden.”
Chagas has been endemic to Limoeira do Norte, in Vale do Jaguaribe, for over a decade. This fact doesn’t encourage work that encompasses prevention and treatment. Instead, people keep on finding out they have Chagas by accident. Because being infected isn’t the same as being ill. Symptoms can take thirty years, or a whole lifetime, to surface.
Even though many people in her community in Arraial have died of Chagas, this infestation still feels like an isolated case. A web of neglect reigns.
On the day she’ll never forget, she was on her way back from the city with her husband.
“C’mon João, let’s stop by the clinic, see if we can get our medication.”
Diagnosed with arterial hypertension, they collect the medication sent by the National Health System (SUS) to their community’s healthcare center at least once a month. There, an employee exhibits the perceptiveness of a mosquito bite:
“Dona Lúcia, I’d like to talk to you, if possible.”
“What’s going on, miss.”
“Your Chagas test is back. It’s positive. You’ve got Chagas.”
Just like that. The nurse had gone to collect her blood pressure medication but come back with “you’ve got Chagas.” The floor drops. Dona Lúcia can’t tell if she’s holding her legs or her tears. She’d let them fall at home. She can’t stop thinking of her neighbors, the three siblings who’d been diagnosed years ago and were no longer with them. The three of them had left. Three.
Once the tears have dried out, she feels a sense of renewed hope. She remembers the many people who, though stricken, are still alive. Izabel, five houses up, has an enlarged heart, but seems all right. Raimunda, further on, not so much, but she’s over eighty. Typanossoma cruzi enters the bloodstream and attacks the cells in the mononuclear phagocyte system (MPS), which start their journey in the bone marrow and scatter throughout the circulatory system. When it encounters the protozoa, it is taken by assault, invaded. There, the parasite divides successively until it has swallowed up every cell, from the inside out, before continuing to the next.
On her first visit to the Pharmacy College, in Fortaleza, to collect her medication, she was told she’d still live long. “Having Chagas doesn’t mean you’ll die from it,” explained Dr. Fátima Oliveira, who handles a great many cases (she’s monitoring 565 patients), has plucked from the lab’s day-to-day a truth beyond medical literature: “Chagas patients can live for a long time.” Past eighty, at a stretch.
The disease can manifest in three forms: indeterminate, where the patient is infected by trypanosoma cruzi but remains asymptomatic. Up to 40% of major cases evolve into two symptomatic forms: cardiac, in which muscle fiber is destroyed; and gastrointestinal, in which the esophagus or large intestine become extremely dilated. Dona Lúcia has the latter. Benznidazole, the only medication she can take for it, works to stop the parasite from destroying the body’s good cells. It is mostly helpful in early treatment of asymptomatic patients.
Dona Lúcia takes the medication but doesn’t go to all her appointments. It’s a trip; at least 200 kilometers separate patient from the doctor. There aren’t always state cars available to drop and collect her from the Hospital das Clínicas, and the tests don’t abide by the driver’s scheduled return to Limoeiro do Norte. Although the disease is often painless when in the blood or even the heart, it can still be fatal. Though it rarely leads to death, when in the intestine, it often causes suffering.
“The medication’s really expensive, so I rarely take it. But the doctor prescribed me three pills. I only defecate when I take my medication.” Though the disease is incurable and, at sixty-four, Dona Lúcia is elderly, there’s no free medication for Chagas disease. Without the pills, it can take up to twenty days for the stool to loosen. The word “chronic,” which typifies this disease, is at its worst on days when “it doesn’t pass.”
“I have cramps in my stomach and intestines. I’m in a lot of pain. My kids take me to the hospital. When I leave, I’m practically a dead woman walking. Then, I barely eat because my stomach can’t hold it in.” When she found out she had Chagas, her fear wasn’t that she’d suffer but that she’d die. Several times, she’s gone beyond mere medical appointments. Dona Lúcia has had nine surgeries: the first, for appendicitis, when she was nineteen years of age and twenty-five days married; then, she had a myoma removed from her uterus, then her entire uterus removed, her gallbladder – she promises to stop there, ‘cause “if not, it’ll come.”
On days she doesn’t have any attacks, it occurs to her to “pretend” she has an illness she can’t see or feel. “I’m anxious, nervous, but I never lose faith, you know? I hold my head high and trudge on.”
Faith in the Divine
Though she takes care of herself and her husband, she puts herself in the care of her faith – in the “divine Holy Spirit” and in the “Virgin of the Immaculate Conception.” “Sometimes, I pray and it passes. I pray to be rid of it, the pain. They hear me, thank God. Not always, though. You’ve got to pray a lot to reach glory. This is what I count on: Jesus Christ, the Holy Spirit, and the Virgin Mary.”
Lúcia has never lived in a rammed earth house, but in exposed brick ones. Many of the masonry residences in her community in Arraial were either reformed or built in the early days of the Chagas Project, in the 1980s. João Batista, her husband, worked as a bricklayer on them. At almost seventy years old, he’s never taken a serology test, nor does he intend to. “At this point, I don’t want to find out I’ve got any diseases. I don’t want to have that worry.”
Pregnant Women Who Are Infected Can Pass the Disease on to Their Babies
When contaminated blood infects another, the barber bug is no longer transmitter. In Brazil, more than 500 children every year are born with Chagas disease, which from the crib threatens to impact those born poor.
A Baby and a Protozoa
A century on from its discovery, the most worrying thing about Chagas disease is not just how many people are diagnosed, but when. It’s possible for a seventy-year-old to have been infected as a child, far from the period of vector transmission (the barber bug). But Taciana Varela’s life is of relative time, where a departure from norm can make the present either belated or premature. At no more than sixteen, she’s made two discoveries as simultaneous as they are extreme: she is pregnant and infected with the parasite. Beside what’s inside her, there is another revelation: the transmission foci aren’t located in the past. And that isn’t it, either.
At the Chagas Disease Research Center, in Fortaleza, the standard patient of the “poor man’s disease” is female, over fifty, lives in a rural area, has little or no education, and survives on minimum wage. When it is young people, or worse, children (rare) who are diagnosed, pharmacists flash a warning sign.
Taciana is a Girl Gestating Another
“When we come across cases of infection from just a few years ago – rather than decades – a lot of people start worrying. If the person diagnosed is young, that means the problem is still there, that measures weren’t taken by the administration. The transmission vector might still be looming,” explains Dr. Fátima Oliveira, supervisor of the Chagas Disease Research Laboratory in the Federal University of Ceará (UFC). Taciana’s case came to her from the interior, via the Quixeré Health Department, labelled as a priority.
As a general rule, public health services are slow and bureaucratic. But pregnant women seem to receive special care – ranging from pre-natal to other demands.
Taciana’s full hemogram, ordered during her first appointment, took just a few days and warns of the presence of trypanosoma cruzi, responsible for Chagas disease.
Sílvia Rocha, a doctor at the Unidade Básica de Saúde (UBS), asked:
“Do you live in a rammed earth house?”
“Because your test came back positive for Chagas. The serology result is reactive.”
Ever since she found out she was two wrapped in one, Taciana has tried to be careful about what “not to do” when you’re pregnant. But what happens when there are three of you?
After the initial fright that she was going to be a mom – and the judgment that came with it (“Francisca’s girl is pregnant,” they’d gossip) – she starts to focus on what was inside her, as only mothers do. Which includes not worrying. Which is why the word “positive” never seemed as negative as it did then, during a period of great change.
The word had coursed on the air, making her eardrum and bones vibrate, then swam in her cochlea until it reached her sound receptors, where it was turned into electronic impulses that travelled to her brain via her auditory nerve. Her cerebral cortex activated her hormonal glands. In much less time than it’d take to read those overly scientific lines, Taciana’s eyes had filled with tears and she had the disorienting feeling of being nowhere. Greater than the journey sound made through her was the fear of loss. The protozoa had reach her before the zygote.
“No, no, calm down now. No need to feel hopeless. We have to find out whether you’ve had it for a long time or if it’s from a recent bite. We’re going to start the procedure so you can be treated quickly, since you’re carrying. It’s really rare for the child to be infected through the umbilical cord.”
“What? I can pass this on to my baby?”
When “maybe” leaves room for “yes,” it becomes cause for despair. Taciana, sixteen, is a concerned mother. The doctor’s conjecture, though unusual, is real.
Even though is hasn’t been made a priority (despite the evidence), academic research, with its dwindling financial support, is a breath of warning. A national serological survey was held between 2001 and 2008 on 105,000 children between the ages of 0 and 5, in every state, except Rio de Janeiro. The prevalence was of 0.03%, with 32 children infected. Of these, 20 (0.02%) had maternal positive results, suggesting congenital transmission. The research, which brought together universities in Goiás, São Paulo, and the Federal District, was published by the Brazilian Society of Tropical Medicine (SBMT).
In Brazil, which has a population of 210,000,000, an average of 500 babies infected with Chagas are born.
Because it’s possible to live a long life with Chagas, in the future, this data will punctuate statistics on aging Chagas patients.
Berenice, diagnosed at the age of two by the public health physician Carlos Chagas, and whose diagnosis led to the disease’s discovery in 1909, lived to the age of seventy-three, her cause of death being unrelated.
But these examples aren’t always persuasive. It’s as if the death of those who didn’t survive were loudest. The Cercado do Meio community in Quixeré is an endemic region. And then there are the various foci: near Taciana’s house there are chicken coops and pigsties fenced off with carnauba wood. She’s never lived in a rammed earth house, but she has lived beside several insect foci. Unknowingly, the girl was already surrounded by the “bicudo,” another common Portuguese term for the barber bug.
She can’t take the medication, benznidazole while pregnant. Nor while breastfeeding.
Ticiane, her daughter, was prescribed one year of breastfeeding and stopped fussing after three days of “crying for milk.” Her mother would have to look after herself.
“Wow, Taciana, you’re strong. You barely felt a thing.”
She clings to these words from Alanna da Costa, of the Pharmacy Laboratory, to this day. She did everything right.
The baby wasn’t infected. Four years after receiving her “positive” diagnosis, the mother is leading a normal life. “It’s like I don’t even have it. Can you believe it?”
Cities Across Ceará can’t Account for R$27,000,000
The only public resource being directly used to keep Chagas disease under control is relayed to city hall by the National Health Foundation (Funasa). It’s for the replacement of rammed earth houses. The money arrives, but it doesn’t always stay.
The money vanished.
It’s there, but there isn’t enough. There’s even more, but it was being withheld, or even suspended, until further word. No one mentions incompetence, misconduct, or both. It’s money we’re talking about.
In the last ten years, counties across Brazil have received a total of R$294,000,000 from the federal government to substitute rammed earth houses for masonry ones. This is the only resource in the entire country that’s being used to directly address Chagas disease. The issue: the money doesn’t always reach those it should – in theory, the poorest. These people don’t live in rammed earth houses because they’re rustic, more sustainable, or environmentally friendly. But because of poverty. The lack of upkeep of these dwellings – with walls whose crannies shelter barber bugs – is one of the biggest problems facing the country’s poorest.
The Residential Improvement Program for Chagas Disease Control (Programa de Melhoria de Habitação para o Controle de Doença de Chagas, or PMHDC), has reached thousands of municipal governments with help from the National Health Fund.
In Ceará, which is one of its greatest beneficiaries, the program has reached 124 municipal governments in the last ten years. Of these, twenty are outstanding or show evidence of construction delays. Between 2008 and 2018, they received R$27,000,000 to replace rammed earth houses. Some contracts were cancelled, after part of the money was already released. A much smaller portion of that amount was recovered after civil suits were filed by the Public Prosecutor’s Office (MPF) for misappropriation of funds.
In the last three years, at least three municipalities in Ceará have been under investigation for supposed misappropriation of public funds: Umari, Porange, Lavras da Mangabeira, Novas Russas, Quiterianópolis, and Acarape are just some of these. The former government officials underwent criminal and administrative investigations. With outstanding issues getting in the way of resource continuity, the officials taking over try to revise the situation.
Between 2010 and 2010, Jaguaretama county received R$150,000 to replace rammed earth houses. The agreement’s total value should have been of R$300,000, but it was ultimately suspended because, during its last evaluation, Funasa noted that construction was only at 59% completion.
In 2015, the county was able to reach a new agreement, for R$500,000, which was eventually stopped due to lack of proof of expenditure. In 2017, Glairton Cunha, the mayor at the time, released the first parcel of money, R$250,000. The remainder was paid out in November 2018.
“I don’t know about the first contract, but we arranged the second during the present administration. I even met with the person in charge this week to make sure they got on with the rebuilding,” the mayor affirmed. The second contract, for R$ 500,000, will be used to replace new rammed earth houses in Sítio Almas.
With the Public Access Law (LAI), we were able to obtain Funasa’s contracts for Chagas disease control with various Brazilian municipalities.
Certain cases raise eyebrows, especially those in endemic counties such as Quixeré, where Taciana Varela, whom we introduced yesterday, is from. She found out she was infected at the age of sixteen following a prenatal test. Next to Limoeiro, Quixeré is the second largest source of patients at the Federal University of Ceará’s research center in Fortaleza.
Between 2008 and 2012, the county received R$ 525,000 for a construction that, according to a report that was presented, stalled at 40% completion. “It looks like the money vanished, because we’re the ones who finished building our houses. Others did it themselves, too,” says Luzanir Nogueira, who was forced to work as a bricklayer so he could become the owner of a new home. Another R$ 225,000 from the same contract is being withheld.
Pitiúba, the mayor at the time of these contracts, could not be found for comment. Whenever Funasa doesn’t receive a county’s proof of expenditure, the Public Prosecutor’s Office helps them recover some of the money released with no proof of construction. This was the case in Quiterianópolis: in 2013, they received R$250,000 and three years later construction remained unfinished. Following a suit for misappropriation of public funds, the unreported money is returned and the case archived.
In 2016, the MPF filed suit against the former official of Poranga, Anderson Magalhães, who in 2012 could not account for R$300,000 out of the total R$750,000 of the agreement.
Evidence of a wire transfer and inconsistency in the use of resources that had been earmarked for construction were also confirmed during proceedings conducted by the Court of Audits (TCU). In the suit, MPF asked that the defendant be ordered to reimburse damages “beyond the application of sanctions provided for in the Administrative Improbity Law,” emphasized Oscar Costa Filho.
Mud on the Track
Missing Funasa resources have become an obstacle for those politicians up for reelection, especially after the 2010 enactment of Supplementary Law nº 135, better known as Ficha Limpa law.
The Bernaldo community in Maracanaú, in the metropolitan region of Fortaleza, was once entirely built of rammed earth. Tired of waiting, thirty-five families built themselves brick houses where every two years promise-makers return to ask for votes.
Researchers Assume the Responsibility of Being a Place of Welcome
The lack of priority given to monitoring Chagas disease in Brazil has led to a situation in which research centers are forced to fulfill other roles – with their own hands and pockets. On the last day of this series, the challenge is to conserve the evidence.
“The best we can.”
Unique in its position as a public laboratory that effectively monitors patients with Chagas disease across the entirety of Ceará, the Pharmacy course at UFC is able to cobble together a budget by pooling money from researchers so they can fund tests and keep up the active search for new diagnoses throughout the state.
“Do you know when the students arrived?”
They’re in the Várzea do Cobra community in Limoeiro do Norte, where the increase in the number of people diagnosed with Chagas took a different course. Some have died and, for those who are still alive, the fear of death mixes with a mournful sadness for those who have gone: father, mother, grandfather, neighbor. Knowledge of the disease is only as valid as its treatment.
“I can’t believe it!”
After traveling the three hours that separate Fortaleza from Limoeiro do Norte, Dr. Fátima Oliveira is shocked by the news as she holds the files of those who’ll take the two tests that determine whether they are infected: ELISA (serological) and immunofluorescence (confirmatory).
When the Municipal Health Department announced that “testing will take place tomorrow,” starting at 8:00 A.M., Tereza Leitão got ready: she asked her nephew to save her a spot in line, until dawn at the earliest.
With a clear day ahead, Fátima sorts through the tubes and needles. She doesn’t count them; she knows she’s brought plenty, bought in part with money from her own pocket.
“I told them before to call up to a hundred people. Nonsense, we’ll do the best we can.”
A professor of Pharmacy Studies at the Federal University of Ceará (UFC), Fátima has made “the best we can” her motto for over two decades. The active search, which took place in Limoeiro in August 2018, is like the one in 2011, when she visited the city for the first time. From then until now, there are fewer rammed earth houses in the community, though not without resistance. According to IBGE, there were 200 rammed earth houses in the area in 2010.
Júnior Ibiapina, the city’s Secretary of Health, was shocked by the very internal reality of the disease’s local diagnoses. “I didn’t know it was so serious, that it was a dormant issue.” The issue is back on the table.
But there are other, little-known mitigators: huts, carnauba fences, brick buildings filled with crannies that can also harbor the barber bug. Worse yet: other mammals infected by the bug can also host trypanosoma cruzi. A network of healthcare options for infected patients comes into play.
“If it weren’t for our partnership with the Hospital Universitário, it’d take more than two months for them to get an appointment with a cardiologist,” Fátima notes.
She knows how difficult it can be for the patients to leave the cities where they live to go to appointments and collect medication.
The Pharmacy course is also short on money. Establishing a monthly fee “between colleagues” is a way of making sure the work won’t stop. Such is the extent of the burden: this is the most effective public health service that fully services Chagas patients in Ceará.
During the meeting with the Ministry of Health and the Ceará government, Dr. Oliveira spoke of a dearth of test kits for new diagnoses. The Central Public Health Laboratory (Lacen), which is associated with the State Health Department, had guaranteed two test kits a month, but in the end it was only sporadic. Last time, the material was delivered near its expiration date. The laboratory teams joined forces to use everything. The Ministério de Saúde had not been relaying the money to Lacen.
“One of our jobs is to generate data. We pinpoint the regions with the greatest risk of transmission so that the officials can go straight to the barber bug foci,” explains Daniele Queiroz, supervisor of Ceará’s Health Surveillance sector. The lack of a preventative serology takes many by surprise. Just in Hemoce, almost twenty-five people a year find out they’re infected during blood drives.
The laboratory at UFC, which keeps its door opens to walk-ins from the interior, has, along with the Hospital Universitário, become the opposite of Brazil’s public health plight: a place of warm welcome.
This was how Dedé Bussa – forty-years-old and one year since his diagnosis, whose story we told in the first installment of this series – felt: “the girls are so good to us, they look at us. They say things that comfort. You come in feeling one thing and leave feeling another, and confident to boot.”
Fátima’s students, such as Alanna, Mylena, Vanessa, and Arduína, have learned what it means not to stop. Alanna Costa, a PhD candidate, was a welcome surprise. Originally from Limoeiro do Norte, an endemic zone, she arrived with a welcoming disposition.
Meanwhile, the Pharmacy Laboratory’s aseptic air mixes with the whiff of countryside the visitors bring. “They’re grateful for any effort. When they come here, they wish us a thousand and one wonderful things, which is good to hear,” Fátima cheers.
The return of a welcome reception has a direct impact on her life some years later, when a student would announce that a mother and her child were outside wanting to speak with her. “God, now of all times?” It wasn’t an open day and the time of her meeting at the university rectory, in another neighborhood, was fast approaching. “I’m going to be late.”
It wasn’t Chagas. A girl who looked about ten years old had a disease that affected her development. Someone had told her mother that Dr. Fátima could help. She held both their hands and rushed off, tugging the two into another time, one that could accommodate her not missing the meeting with her superiors. She reached the hospital ombudsman, explained the case, which today she no longer recalls, acting as bridge for that child and her mother: “do something for this girl.” And off she ran.
One month after that event, on October 24, 2011, she received some mail. A hectic life of education, research, students coming in and out of the laboratory at all times, there’s barely any time left for niceties, and that letter, which had nothing to do with work, seemed too strange to be true. Taking it in with her eyes and hands, she had a revelation: it was the girl Iyna Mayra with her mother, thanking her. “By God, what for? I didn’t do a thing. All I did was take them where they wanted to go. I was flustered because I had to leave?” No matter, and then another observation: she could’ve said no, but she’d said yes. She’d listened to the mother, taken the child’s hand. She’d forged them another destiny. In crooked lines, a child thanked her very much and said she was happy because she’d gotten better. Fátima cried, and to this day cries. She has kept the letter, as if it were a university diploma, alongside the many she already has.
Giving and Receiving
“I’m always telling my students: this is what’s worth living for. When you do something for another person, you’re actually helping yourself more than you are them. And it’s not only the work one person does. It’s everyone’s. No one should be in this world to knock the next person down. God puts things and people in our lives so that we can be better.”
The Chagas Lab will be turning sixteen in December 2018. It’s made up of ten researchers, including undergraduates, masters students, and doctoral candidates. They are “Fátima’s kids.” Beside the challenge of conserving the place and making sure there are test kits, the team is now fighting to get sponsorship, a gastroenterologist, a nutritionist, and a psychologist who’d see Chagas patients with intestinal parasites, improve their nutrition, and by listening, bolster the self-esteems of those who’ll have to live on despite the barber bug. So long as there is a demand, Fátima intends to fight “the best she can.”