'Island of Widows': The mystery disease killing sugarcane workers around the world

People in the town tell stories of teenagers taking on jobs as gravediggers to cope with the ever-mounting pile of bodies: teenagers who find themselves burying their own relatives on a monthly basis. And of 80-year-olds hired by the local mayor’s office to make cheap coffins for families unable to afford their own.

So what’s causing this fatal epidemic? “Anyone who claims they know for sure doesn’t understand what they’re talking about,” says Dr Ben Caplin, a specialist in kidney disease at University College London.

He has spent years researching CKDu and is still reluctant to pinpoint one single factor. “It’s not the result of traditional causes of kidney failure such as diabetes or high blood pressure,” he says. “Nicaragua and parts of El Salvador are very much dependent on the sugar industry, and the workers, mostly men, in these and other agricultural labouring jobs are disproportionately affected. Many of those that work in the fields cut as much as five tonnes of cane a day in more than 40°C heat.

“This has led some doctors to put the disease down to heat exhaustion and dehydration; but others cite toxins in the surrounding environment, alcohol or genetics as the main cause. In truth we just don’t know,” he says.

Jose Douglas Torunos Reyes, a former cane cutter from Chichigalpa, was laid off in 2001 after being diagnosed with CKDu. He blames the working conditions he’s endured since the age of 15 for the failure of his kidneys. Aged 45, with gold-plated teeth and leaning on a stick, he looks far older.

“We would work seven days a week from 4am to 5pm in the sun with nothing but a small bottle of dirty river water to drink all day,” he says.

“I used to get so hungry I’d steal some of the raw cane to chew on. Some days they would spray the fields with pesticides while we were still working in them.”

Jose grew up knowing that he, like his father and grandfather before him, would work the sugar plantations. “You have no choice. The disease is like a seed planted inside you from birth that you can’t escape from. Either you work, get sick and die or you don’t work and starve,” he says.

His son now works at the sugar mill, having taken over his father’s role as the family’s breadwinner.

Jose points to the dialysis machine thumping in his forearm: “It’s supposed to clean out my blood − although I don’t know what good it does. Everyone who has one seems to die anyway.”

Another of the former cane cutters, Marlon Jose Estrada Velasquez, describes the searing pain he experiences when urinating, a sensation familiar to so many in Nicaragua it has developed its own colloquial name: chistata.

“It’s so bad I can only drink a few cups of water a day now.” When his kidneys are no longer able to take any more fluid the water fills up in his lungs.

“You can’t breathe. It feels like you’re drowning in your own body.” The others report itching, waves of dizziness and vomiting.  

According to Madeleine Scammell, professor of environmental health at the University of Boston, the wide variations in how the disease manifests itself are one of the reasons it is so difficult to diagnose.

“I met a group of sick workers who showed me pictures of bodies of their friends and family − some covered in rashes, others horribly bloated. They kept asking ‘How can this be the same disease?’. For them the most terrifying thing was not knowing how they were going to die or what it was going to look like," she says.

Those who do manage to get treatment by kidney dialysis are among the lucky few. Jose explains how the situation blew up five years ago when more and more men began falling ill.

“At first the government provided buses to Managua, the capital, where we’d get dialysis treatment. But by the time we’d been seen all the buses would have left for the evening and we’d end up having to sleep on the streets," he says.

When the number of sick workers continued to mount, the buses stopped. “It got too expensive,” Jose says. “We decided to march 130 kilometres to Managua to protest. It took us 11 days. But in the end nothing much came of it. There are over 500 groups campaigning for something to be done, but we aren’t organised.”

Dr Marvin González-Quiroz, from the London School of Hygiene and Tropical Medicine, who is currently in Nicaragua conducting a study on the disease, says treatment is unaffordable for these subsistence workers.  

"The reality is that, if they don't have insurance, workers will have to pay for their own treatment. One session of dialysis costs $150 and you need four sessions a week. When most workers live off a few dollars a day, finding $600 in a week is impossible."

The history of sugar production has long been intertwined with that of exploitation, from the first transatlantic slaves transported from Africa in the 15th century to the reports of child and forced labour among the undocumented Haitian migrants working the sugarfields of the Dominican Republic today.

Global consumption of sugar has continued to rise in recent years. In Nicaragua the majority of the sugar is exported, with Britain and America among its biggest buyers, and in 2018 the country’s production hit a new record high.

According to Professor Paul Hoebink from the Centre for International Development Issues Nijmegen, 27 per cent of Nicaragua's workforce is employed in agriculture, of which more than 100,000 people work either directly or indirectly for the sugar estates.

The situation for workers across all affected industries is now reaching a critical stage. “Victims are getting younger and younger,” says Dr Caplin. “Men from the ages of 18 and 19 are losing kidney function at an unprecedented rate. If this were happening in Britain or America we would have found a solution by now. Yet so far research has been confined to small, poorly funded projects.”

Although most cases of CKDu have been clustered around Central America, there has been a growing number of reports of chronic kidney disease in other tropical regions, from steel workers in Brazil to rice farmers in India and Sri Lanka.

“Superficially it looks like the same disease”, says Dr Caplin. “In all regions biopsies show significant scarring of the kidneys, which eventually fail completely. There are also parallels in the working conditions: extreme heat and dehydration. But in Asia the disease affects workers much later in life, in their 40s and 50s.”    

However not knowing what is causing these deaths does not mean there’s nothing to be done, says Professor Scammell. “We need to improve working conditions, educate people on how to protect their kidneys, and fund more research in other countries affected by CKDu such as India and Sri Lanka. If we can identify whether they are the same disease that might help us work out what the cause is.”  

For men such as Santiago, new research will be too little too late. He knows he will die soon, he says. His bones jut violently through his thin, papery skin, his frail body cradled in a hammock outside his hut. He watches as his young daughter plays in the dust, occasionally returning to stroke her father’s hand or present him with a treasure she’s found.

While the death toll of Nicaragua’s men is still being gauged, the toll of CKDu on the women left behind may not truly be understood for years to come.  

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