The country where tuberculosis has returned as the ‘shadow of misery’
TB is making an aggressive comeback in Venezuela
Friends of Jesús Contreras placed a radio at his grave, playing salsa and reggaeton music. Photographs: Meridith Kohut for The New York Times
His family thought he just had a bad cold, nothing serious.
But Victor Martínez kept getting worse.
By mid-January, he lay in a hospital ward, wasting away from tuberculosis. A month later, at his wake, stunned relatives tried to reckon with the resurgence of a disease that many Venezuelans thought had been mostly confined to the history books.
“I really don’t know what to think,” said Nileydys Yesenia Aurelia Martínez, his niece. “Even the last thing you’d imagine is happening.”
Tuberculosis, a disease that until recently seemed to be under control in Venezuela, is making an aggressive comeback, overwhelming a broken health care system ill equipped for its return, doctors and infectious disease specialists say.
The illness – like malaria, diphtheria and measles – has surged in Venezuela during a profound economic crisis that has battered almost every aspect of life and driven an exodus of Venezuelans, including many experienced doctors.
Though normally associated with the very poor, tuberculosis has begun to stalk a broader population of Venezuelans, including the middle class. Declining nutrition from food shortages and rising stress throughout the country may be weakening immune systems, doctors say, leaving people more susceptible to illness.
And with more families sinking into poverty, people have been forced to double up in increasingly crowded homes, accelerating transmission of the disease.
“Tuberculosis is the shadow of misery,” said Dr José Félix Oletta, a former Venezuelan health minister. “If there’s a disease that is a marker of poverty, it’s tuberculosis.”
The Venezuelan government has not released health statistics since early last year, part of a sustained effort to keep the extent of the country’s decline secret.
But at two vital tuberculosis centers in Caracas, the capital, the share of new patients who tested positive for the disease increased 40 percent or more in the last year alone. Some experts fear that the death rate associated with the illness has increased as well.
“Tuberculosis is hitting us hard,” said Dr Jacobus de Waard, the director of the tuberculosis laboratory at the Institute of Biomedicine in Caracas, the busiest public testing center in the capital. “We’re losing the fight.”
The Venezuela government’s tuberculosis prevention and control program was once among the most robust in the hemisphere, with the nation boasting one of the lowest rates of infection in Latin America, experts say.
But as the country has fallen apart under President Nicolás Maduro, who took office in 2013, the government has let the tuberculosis threat slip from its control, losing decades worth of gains.
All these forms of tuberculosis that we forget about are starting to reappear
Doctors have also observed the return of particularly complicated varieties of the disease, as well as more cases involving strains that are highly resistant to drug therapies. “All these forms of tuberculosis that we forget about are starting to reappear,” de Waard said.
Experts now fear that the nation is teetering on the brink of a tuberculosis epidemic that could spill over its borders as Venezuelans flee the country in record numbers to escape the economic and political crisis, potentially exporting the illness with them.
And as the Venezuelan health system has fallen apart, the government’s ability to respond to epidemics has collapsed.
Some parts of the country have started to report shortfalls in tuberculosis medications in recent months, including in Bolívar, one of the states hardest hit by the illness.
Specialists said the government had recently suspended the national distribution of the antibiotics used to treat the disease, supposedly out of concern that it was disappearing into the international black market. After a three-week halt, doctors said, distribution slowly resumed, but not without interruptions in the treatment of patients.
The lack of equipment and skilled medical personnel has led some health clinics and hospitals that once had robust testing programs to shut down part or all of those programs, and some of those that remain open have documented worrisome trajectories.
From 2013-2015, about 5 percent of adult patients evaluated each year in the outpatient center and the tuberculosis clinic at Dr José Ignacio Baldó Hospital in Caracas were found to have the disease, according to Dr Zhenia M. Fuentes, the coordinator of the clinic. But by the last trimester of 2017, that rate had risen to about 9 percent, and then climbed even further in January, to about 14 percent, she said.
Doctors say tuberculosis infection rates in Venezuela are probably still well beneath the levels afflicting countries, mainly in sub-Saharan African and Asia, that have the worst tuberculosis epidemics.
Still, experts say, with the disintegration of Venezuela’s health system, there is little to prevent tuberculosis from spiraling out of control. “The problem is the country doesn’t have the power to stop it,” said Dr Julian Villalba, a Venezuelan tuberculosis expert.
All of the country’s major public hospitals are supposed to have tuberculosis testing programs, but many have been crippled or forced to close. Last year, lacking the necessary supplies, technicians at Dr Rafael Quevedo Viloria Hospital, a major public hospital in the northwestern state of Trujillo, stopped doing a basic test in which sputum samples are stained and viewed under a microscope, said Dr Miguel Fernández, who leads the hospital’s tuberculosis program.
Instead, patients were referred to a hospital in another city four hours away. Many could not afford the cost of public transportation and never went, Fernández said.
Of six major public hospitals in Caracas that responded to requests for information, only three were still conducting some tuberculosis tests, though not the full range required.
Pulmonoglists and tuberculosis specialists praised the current director of the national tuberculosis prevention program for her efforts to keep it going, including using her own money to pay for ingredients to make test cultures.
But they said that the official, Dr Mercedes España, was hamstrung by an apparent lack of commitment by the Maduro administration to deal with the nation’s various health crises.
“There’s an ethical rupture here,” Oletta said, accusing the government of showing more concern about its political standing than about public health. He pointed to the Maduro administration’s refusal to publicize health statistics, seemingly because it feared the political costs of more bad news.
“The result of that is more health injustice, more suffering, more illness, more death,” Oletta said.
The Maduro administration did not respond to emailed requests for interviews.
Each weekday morning, people start lining up at the door of de Waard’s tuberculosis laboratory to get tested or receive results. “In the past, they came to rule it out,” said de Waard. “Now they come to confirm it.”
On a recent morning, a 4-year-old boy appeared with his father. His grandmother had died of tuberculosis a week earlier. The boy’s mother had also tested positive. “I didn’t even know what tuberculosis was,” said the boy’s mother, Jhonais Morales. “Then my mother died and because nobody in my family had suffered from this, we didn’t know.”
“Every time we sent her to the doctors, they gave her medication for something it wasn’t,” Morales continued, pain in her voice. “I don’t understand why they never did the test for tuberculosis.”
Experts say that a high percentage of Venezuelans may already be carriers of latent tuberculosis, and that increasing malnutrition, anxiety and other hardships are weakening immune systems and activating the disease.
Grelis Contreras, (36), began feeling sick in October, with the symptoms of a bad cold: headache, fever, weakness. Soon he started having difficulty breathing. For months his family had been cutting back on food consumption to save money, and were down to one meal a day. But his weight loss seemed to accelerate as he got sicker.
He went to a local clinic and the doctors told him he had asthma.
His condition worsened. At the office building where he worked as a security guard, colleagues and tenants began to complain about his incessant coughing, and his bosses forced him to resign. “I was really bad, really bad,” Contreras recalled. “I was spitting up blood.”
In early January, weighing 52 pounds less than he had last year, he went to a hospital where an immunologist examined his chest X-ray, diagnosed him with possible tuberculosis and sent him to de Waard’s laboratory for tests.
Like many Venezuelans, he thought tuberculosis was an archaic ailment: He was taught in school that the disease killed Simón Bolívar, the country’s liberator, in 1830.
Contreras’ thoughts turned to the broader crisis and the man presiding over it, Maduro. “I voted for him,” he said. “But not now.”
“This man has ruined our quality of life,” he added.
Specialists say they are seeing not just more cases of tuberculosis, but more severe infections and more cases involving rarer varieties.
At José Ignacio Baldó Hospital, Fuentes, the pulmonologist, pulled out an X-ray of a patient’s chest. The lungs appeared to be full of small spots: miliary tuberculosis, an uncommon and dangerous form of the disease.
“Before, I had to save one of these for my residents because one year could go by without seeing a case,” she said. “Now we see it weekly.”
Carlos Ruiz first started feeling ill in 2015, unable to raise his arms or bend over to put on his socks. He was forced to give up his job as a bus driver.
Doctors misdiagnosed him with appendicitis, among other illnesses, gave him the wrong medicines and performed three unnecessary surgeries. During one stretch, he was hospitalized for a year.
None of it helped. He lost 77 pounds, nearly half his weight.
In January, gaunt and exhausted, he wound up at the lab of de Waard, who diagnosed him with a rare form of tuberculosis called Pott’s disease, which affects the spinal column. Ruiz remembered what de Waard said: “He told me clearly: ‘This disease is going to kill you.’”
Ruiz started receiving treatment, began to rebound and was discharged early last month.
The flight of millions of Venezuelans abroad in the past decade has included many talented medical professionals, and veteran tuberculosis specialists in Caracas say their ranks have thinned considerably.
“Many well-prepared people are leaving,” said Dr Verónica Martínez, a pediatric pulmonologist at José Ignacio Baldó Hospital.
The number of pulmonologists working with adult patients at the hospital has dropped from 15 to six, and many recent medical school graduates have left the country. Half of 12 slots reserved for pulmonology residents have gone unfilled.
“We don’t have a new generation to replace us,” Martínez said.