There’s a Mysterious Kidney Illness Killing Undocumented Workers

No one knows what’s causing the “silenced massacre”

Illustrations: Ellie Ji Yang

EEach Monday morning, Jesus Gonzales, 47, heaves his body out of bed, loops a belt through his slacks, and drives half an hour to the outskirts of downtown Houston, Texas. After a weekend spent socializing and praying, he is tired and feels ill. His calcified hip is stiff and his left hand cannot curl beyond a fragile fist. A Spanish radio station hums in the background, and with every mile behind the wheel, he feels a little closer to relief.

For the past three years, Gonzales has been a patient at Houston’s Riverside Dialysis Center. (Elemental is not using Gonzales’ full name for privacy reasons). Three times a week, he sits in a blue padded chair and waits for up to four hours as his blood is circulated through a filter, cleaned, and returned to his veins. Gonzales says he’s lucky to receive regular treatment, though the procedure takes a physical toll. He’s seen fellow dialysis patients whose teeth fall out and whose faces become sunken and drawn. Others cry out when a needle — one of six per week — is poorly inserted.

“Dialysis is like a cancer that consumes you each day,” Gonzales says in Spanish. “It’s a way to live, but it causes you to deteriorate.”

In 1990, when he was 18 years old, Gonzales was diagnosed with kidney failure, a disease much more common among people four times his age. It started with a dripping, bloody nose followed by trouble breathing. In the emergency room of Dallas’ Parkland Memorial Hospital, Gonzales was told his kidneys were no longer working as they should. It puzzled his doctors, since Gonzales was so young and had no history of high blood pressure, diabetes, or autoimmune illnesses like lupus. And yet his kidneys were shriveled up like raisins and stopped filtering toxins from his blood.

Back home in his native El Salvador, Gonzales knew of at least 20 other men, including some of his own relatives, who had died from some form of kidney failure. But as a young, healthy teenager who moved to the United States about three years earlier, Gonzales did not imagine he’d have a similar fate. As he soon learned, the desiccated state of his kidneys meant he would be reliant on dialysis — the only treatment available — for the rest of his life.

Doctors believe Gonzales has a kidney disease known as Mesoamerican nephropathy, or MeN. The disease was first described in El Salvador in the 1990s when doctors noticed that an abnormally large number of agricultural workers — practically all men — were dying from kidney disease. The condition causes a person’s kidneys to shrink and shrivel, halting the organs’ ability to function normally and remove waste and extra fluid from the body. The disease is fatal without treatment. In Latin America, cases of the disease are reported across the region’s Pacific coast from Guatemala to Costa Rica, and an estimated 20,000 people have died from MeN.

Despite the large numbers of infections, and the high risk for fatalities, the cause of the disease remains a mystery some three decades later. The only thing that’s clear is that it’s no longer an illness of Central America.

Cross-border migration borne from violence, poverty, and instability across the Americas has led to the disease appearing in the United States. Over the past few years, a handful of U.S. cases have been documented in journal articles and anthropological work, though the exact figures — suspected to be much higher than recorded — are unknown. Part of the problem is that there’s no specific test for MeN, and by the time undocumented people with the disease arrive in emergency rooms, their kidneys are too small and fibrotic to be safely biopsied.

MeN in the United States isn’t a brand-new phenomenon. Since the early 1990s, doctors at Ben Taub Hospital in Houston have treated hundreds of undocumented men who they say are most likely suffering from the disease. Much like Gonzales, most of the men have no reported health problems until the chronic headaches and waves of nausea begin. Before long, they need emergency care. “You check them out and there is no kidney function left — literally,” says Dr. Garabed Eknoyan, a nephrologist who has worked at Baylor College of Medicine in Houston for 50 years and sees patients at Ben Taub.

While regular dialysis is the norm for U.S. citizens, it’s a rarity for the undocumented. Before 6 a.m., the green and gray emergency department of Ben Taub Hospital is filled with patients too sick, too poor, or too invisible to seek dialysis treatment elsewhere. The patients — often close to 40 per day — are often undocumented men in their twenties and thirties. They have nausea and pallid skin, and faces Dr. Chandan Vangala, a nephrologist at Baylor who also sees patients at Ben Taub, says he will never forget.

“They’re so young and it’s so striking,” he says. “It’s hard to get over.”

While doctors across the Americas are struggling to care for a neglected population with an incurable illness, researchers — many of whom have been studying MeN since its inception — have been grappling with a more basic question: Where did this epidemic come from?

A history of mystery

Six years after the end of the Salvadoran Civil War, Dr. Ramon Trabanino, now a nephrologist in El Salvador, began a medical residency at Rosales National Hospital in the country’s capital of San Salvador. Every day, Trabanino was swamped by what he describes as a “never-ending river of patients” with kidney failure. Most had the same story: They were young, healthy, and had never seen a doctor. Then, suddenly, they were in the hospital in critical condition.

“They came once, they came twice, and then, they didn’t come back again,” Trabanino says. “They died at home instead.”

Trabanino and three colleagues published the first scientific paper documenting cases of kidney failure that could not be explained by more common causes. Their work was published in 2002 and the team won a national prize — “a slap on the back,” Trabanino says — but to his frustration, the paper did little to spur early interest in the disease from the medical community. The problem only got worse. According to data included in a 2019 report, in Central America, MeN is a leading cause of hospitalization and death. Over the last 10 years, deaths from the disease rose 83% in Guatemala, and is now the second leading cause of death in Nicaragua and El Salvador.

The scope of MeN cases in the United States is difficult to calculate, as is when the epidemic started. Eknoyan remembers seeing young, otherwise healthy men appearing at the Ben Taub emergency room with shriveled kidneys in the 1990s, but beyond treating them, he collected no data on the number of men coming through the ER. “I have in my life a few regrets over things I observed as a physician but never pursued,” Eknoyan says. “I never counted [those people]. I was too busy doing other things.”

In the decades since, doctors and researchers have slowly begun documenting cases across the United States. In California, anthropologist Sarah Horton wrote a 2016 book detailing anecdotal MeN cases among farmworkers in the state’s Central Valley. In the same year, doctors at Oakland’s Highland Hospital documented one of the first U.S. cases of the disease. The case study was based on a 32-year-old construction worker who had emigrated from El Salvador just eight years earlier. Back home, he had labored in cornfields alongside his father and uncle. Both died from kidney failure of an unknown cause. It wasn’t until he arrived in the U.S. that the man was diagnosed.

“The patient was in shock, especially because he thought his symptoms were temporary, something like a cold,” says Stefan Flores, the paper’s co-author and an emergency physician in California. “It was a sad case and nothing that I had seen before.”

Men with the disease are showing up in less likely states, too. Doctors from Howard University Hospital in Washington, D.C., published a paper in September 2018 that described a 41-year-old man, originally from El Salvador, who arrived in the emergency room after three days of heavy, labored breathing. Shortly after, he was diagnosed with kidney failure. In nearby Maryland, at least a dozen men — whose kidney failure fits the description of the disease — have sought treatment at Johns Hopkins Medicine, says Kathryn Kline, an internal doctor at the hospital.

Data in Latin America is also incomplete, which is why Trabanino describes MeN as a “silenced massacre,” one whose impact has been masked by political turmoil, crippling poverty, and, for a long time, a lack of interest. Now, after decades of research, scientists have begun to unravel some of the disease’s mysteries — but a cause, and more so, a cure, remain elusive.

One of the long-term theories is that the disease is caused by a toxin or pesticide, since the vast majority of the men getting sick — Gonzales included — have a history of working in the fields where a variety of chemicals are used. Gonzales was plucked from his school desk and sent to join his two older brothers in the fields of eastern El Salvador, when he was seven years old. Each morning, like most people in their town, the siblings would rise at 3 a.m. and spend the day picking buckets of white, fluffy cotton. It is a job Gonzales describes as malo, a job for the poor and the desperate that left him covered in the pesticides that were regularly doused over the crops.

“We didn’t have protection, we didn’t use masks — nothing,” says Gonzales.

Rebecca Fischer, an epidemiologist and assistant professor at Texas A&M University, has been studying cases of men with MeN in Nicaragua with a team at Baylor since late 2014. Biopsies performed on 11 men recently diagnosed with MeN showed the scars of a temporary form of kidney failure called acute kidney injury, or AKI, that she says is not caused by heat or dehydration alone. Rather, Fischer says, heat stress and dehydration could be exacerbating something else, namely a toxin, that is causing the primary damage.

“It could be heavy metals, it could be an infectious agent, it could be a chemical agent,” Fischer says. “But we know it’s a toxin of some kind.”

Among a cohort of 586 sugarcane workers, each of whom has been diagnosed with AKI, Fischer’s team has found that anemia and paresthesia — a continued tingling sensation similar to “pins and needles” — were the strongest predictors of whether someone would progress to the chronic version of the disease. On the other hand, people with acute kidney damage and a high white blood cell count — normally considered a sign of chronic kidney disease progression — developed MeN at a much slower rate. “This is really interesting because it tells us the body is actively working against something,” Fischer says. “But again, we don’t know what that something is.”

Fischer’s study group has, so far, lost one man to MeN. After working two harvest seasons as a sugarcane cutter, the 19-year-old man was diagnosed with chronic kidney disease. At 20, he was dead. “The story of this disease is so tragic,” she says.

Trabanino and his team initially also speculated that pesticides might be the culprit. El Salvador has a long history of pesticide use. In the coastal Bajo Lempa region, more than 80% of men have reported close contact with some kind of agricultural chemical. One study found that in the same region, dieldrin — a pesticide used in cotton fields until it was banned in 1986 — was present in shrimp ponds at a concentration one and a half times higher than the U.S. EPA limit. Trabanino began a registry of people with MeN in a coastal community of El Salvador called Tierra Blanca. He collected urine samples and was surprised when the results revealed no association with pesticides. He now has doubts that the cause is pesticide-related.

Another possibility, gaining more support, is that increasingly hot temperatures, paired with heavy exertion and a lack of shade and water, is placing undue stress on men’s kidney’s, causing MeN and AKI. In 2018, a team from Emory University published the results of a four-year study which found that among their sample of farmworkers, more than 30% experienced AKI on at least one workday, and with each 5 degree Fahrenheit increase in the heat index, the AKI risk rose by more than 35%.

In recent years, researchers including Trabanino have embraced the idea that the condition may be related to climate change, given its link to heat stress and dehydration. In August 2019, Trabanino and Dr. Cecilia Sorensen from the University of Colorado School of Medicine published an editorial in the New England Journal of Medicine labeling MeN a “sentinel disease in the era of climate change.” With a nearly 1 degree Celsius increase in global temperatures paired with an increase in heat waves and humidity, Trabanino and Sorensen write that humans may have reached a physiological limit in the body’s ability to overcome or acclimate to heat stress, especially for those working in unsafe conditions with various environmental exposures. While Trabanino and Sorensen suggest that other factors could also be at play as well, they write that MeN is “likely to be one of many heat-sensitive illnesses unmasked and accelerated by climate change.”

The costs of care

In the United States, treating undocumented patients with MeN requires stitching together fragments of a health care system that often denies their very existence. For men like Gonzales who are able to receive scheduled dialysis, the situation is markedly better. But for other people who only receive emergency treatment, the odds are stacked against them.

A 2017 study — which observed undocumented people with end-stage renal disease in California, Colorado, and Texas — found that those who receive emergent dialysis are 14 times more likely to die within five years than those who receive regular treatment. They are also more prone to other health complications: As an emergent dialysis patient in Dallas, Gonzales slipped into an eight-day coma.

Because of increased hospitalizations, emergent dialysis costs around four times more than regular treatment. The extra cost then falls upon public, safety-net hospitals such as Ben Taub, which are legally required to treat everyone at the emergency room — irrespective of their ability to pay, and regardless of their immigration status. To curb the costs, states such as California and New York allow undocumented patients to receive dialysis through Medicaid.

“Setting aside the humanity of it all, if you have to look at this from a very objective standpoint, then it’s also cost-saving,” Vangala says. “It makes it easy for me to rationalize why I would fight for someone who isn’t necessarily a citizen or, quote-unquote, deserving of the rights of a citizen.”

The alternative to dialysis is getting a kidney transplant, which is not an option for people like Gonzales. To be an undocumented person in the United States is to be consigned to a different market. While patients at Riverside have worked as day laborers and on construction sites — industries that have some of the highest fatalities in the country — a kidney transplant remains an impossible luxury.

“It is heartbreaking for us to take care of these patients because we really can’t do everything that we would like to,” says Dr. Sreedhar Mandayam, a former Baylor nephrologist, now at MD Anderson Cancer Center, who studies MeN. “More importantly, we can’t do anything to stop it from happening — at least so far.”

A long goodbye

On a Sunday morning in early March, Gonzales buttons a pastel-pink shirt over his scar, picks up his brown leather Bible, and drives to the Bethel Community Church. He takes his usual seat by the long, thin windows, where the light seeps through in soft lines. As the congregation sings a hymn, Gonzales picks up a silver iridescent tambourine and taps the tiny instrument against his hand, high above his head.

“You come to church, the pastor is preaching, and it fills you up,” he says. “It can relieve your hunger — everything is beautiful.”

In January 2018, Gonzales had his left kidney removed. The shrunken organ had grown several cysts and doctors said there was a high chance they could become cancerous. He is now reliant on one, faltering kidney. The surgery, as Gonzales knows, has also made time more fleeting.

With the help of his church — whose parishioners often slip him 20-dollar bills and collect anonymous donations — he has begun saving for his funeral. Gonzales cannot afford a funeral home so the service, he says, will take place at the church. Then, as is his wish, he will be laid to rest not in the place of his birth but in his adopted country. “I’m preparing myself,” he says. “I know where I come from and where I’m going.”

At the end of the Houston service, when the music has quieted and Gonzales has prayed in his muted reverie, the congregation gathers in a small kitchen behind the church. Crowded around a sweet and sticky sheet cake, the churchgoers sing a cheerful rendition of “Happy Birthday.” Gonzales eats a sliver of cake and walks around the room, shaking the hands of neighbors and friends. Today, he is the cause for celebration. Just a few days earlier, it was his birthday. He has lived through one more year.

Freelance journalist and photographer. Subscribe to Defender, a newsletter about the global environmental justice movement: https://buttondown.email/defender

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