Polonnaruwa, Sri Lanka – In the sleepy, verdant village of Ambagaswewa, in the Polonnaruwa district of Sri Lanka’s North Central province, 63-year-old TMH Gamini Sunil Thennakoon’s life is peaceful for the most part. On the brink of retirement, he still spends most days out working his rice paddies but is also content spending his days playing with his grandchildren and chatting with his wife and two daughters. Since boyhood, Thennakoon has farmed rice here across 2 hectares (20,000sqm). A majority-farming nation, agriculture plays a central role in Sri Lanka’s economy and constitutes 21.7 percent of total exports.
But for more than seven years, Thennakoon has been coping with unexplained kidney problems. The symptoms of his condition – abdominal and back pain – are not bad enough to require dialysis yet, but he does take tablets to keep the pain under control.
“I’m not sure what caused the issue, because the rest of my family seems fine,” he says calmly, his granddaughter straddling his lap. She reaches over to swipe at one of the puppies roaming the front porch of their home, where we’re sitting. Ambagaswewa, proliferated by rice paddies, is otherwise a jungle – birdsong twangs through the already humid morning air, luscious vines and creepers on the verge of overtaking farmers’ homes. It’s a peaceful place.
Every month, Thennakoon makes a round trip of more than 30km to a local government hospital for a check-up; during these trips, he has to hire labourers to work in the rice paddies and cover his absence.
Thennakoon is not the only one who has been affected in this way, here.
U Subasinha, a 60-year-old former rice farmer, is one of his neighbours. He has had a particularly hard life. One of his three children has been disabled since birth and, now aged 23, cannot walk. Seventeen years ago, Subasinha’s wife, Kamalavathi, now 54, started experiencing pain and was eventually diagnosed with chronic kidney disease.
Subasinha himself has suffered from acute kidney failure for the past eight years.
He is so frail that he can barely leave his cramped, hot bedroom most days, let alone work. But for the past seven years, he’s been going for dialysis four times a week at a government hospital, more than 25km away.
He has to find the money for the medicine he needs (16,000 rupees or $54) a month for himself and Kamalavathi), and for the hefty transportation costs – upwards of $16 for the round trip of a bumpy, 45-minute tuk-tuk ride each way to the hospital in Polonnaruwa.
None of this is covered by any sort of government-provided healthcare. It’s a huge sum for a household without an income.
The couple says they have no idea what made them sick and they seem surprised at the question. “No one has ever come to ask us this before,” says Kamalavathi.
The rise of kidney disease ‘hotspots’
According to statistics from the National Kidney Foundation in the United States, 10 percent of the world’s population is affected by chronic kidney disease and it is the 12th most common cause of death. Millions die annually due to a lack of access to affordable treatment.
Furthermore, according to an analysis by the Global Burden of Disease Study in 2019, chronic kidney disease (CKD) has increased by 40 percent over the past 30 years and is one of the fastest-rising major causes of death. Common precursors to CKD include diabetes and hypertension – diseases increasingly endemic to urbanising populations.
But across rural Sri Lanka, there’s a relatively new phenomenon; “chronic kidney disease of unknown aetiology (cause)” (CKDu). A flurry of scientific research studies has provided no concrete reason as to why as many as 22.9 percent of residents in several “hotspot” areas in the north-central districts of Polonnaruwa and Anuradhapura, plus some neighbouring districts, are suffering from acute kidney damage or failure.
On a national level, 10 to 15 percent of Sri Lankans are impacted by kidney diseases, according to Nishad Jayasundara, who is a researcher of global environmental health at Duke University in Durham, North Carolina, US. He grew up surrounded by rice fields in an area of Sri Lanka that was rapidly urbanising throughout his childhood and now researches the causes of CKDu.
“[The disease] disproportionately impacts farming communities,” he tells Al Jazeera. “The current estimates indicate that more than 20,000 people [in Sri Lanka] are at end-stage kidney failure, with no alternatives left, while 6 to 10 percent of the population in impacted communities are diagnosed with CDKu.”
Indeed, research published by the US government’s National Library of Medicine in 2016 states: “Geographical mapping indicates a relationship between CKDu and agricultural irrigation water sources [in Sri Lanka].”
A lack of early symptoms
While CKD has identifiable symptoms, such as weight loss and poor appetite, swollen ankles or hands, shortness of breath and itchy skin, early on, CKDu is asymptomatic until the latter stages of the disease, so early detection is nearly impossible, say doctors. By the time a patient receives a diagnosis, the disease is usually untreatable.
Even when symptoms do appear, they usually include back pain, swelling in the arms and legs and “body aches”, not uncommon for farmers and fishermen used to hard manual labour.
Dr S B A M Mujahith is a nephrologist – a doctor who specialises in treating kidney diseases – at Batticaloa Teaching Hospital on Sri Lanka’s eastern coast. He grew up just 50km down the coast from Batticaloa in the town of Nintavur and this played an important role in his career choice: “It was a community investment,” he tells Al Jazeera.
CKDu was first identified as an issue in Sri Lanka in the 1990s. There’s a geographical link, says Mujahith – some parts of the eastern and north-central provinces seemed especially hard hit. Many, like himself, wanted to investigate further and identify the causes.
A World Health Organisation (WHO) team even came to investigate the causes of CKDu in the 2010s, but ultimately the study was inconclusive.
Mujahith likes to use the term “chronic interstitial nephritis in agricultural communities” (CINAC) since the disease is rather specific to the nation’s agricultural workers. It affects mainly men – most patients live and work in poor agricultural communities and may be exposed to toxic agrochemicals through work, inhalation, and ingesting contaminated water and food, explains Mujahith.
Sri Lanka, a small tropical nation with a population of about 22 million people, is undergoing the fifth year of the worst economic crisis in its history. The result has been limited access to medicine and food which hinders treatment and management of the disease, particularly in remote and under-served places such as Ambagaswewa.
‘Education is key’
Jayasundara, who grew up in a farming village in southern Sri Lanka, is currently working to isolate the factors of CKDu in his research, which examines phenomena such as how agrochemical concentration increases during drought (due to evaporation), or how the economic decline has affected the rest of the country.
Chronic disease in one specific organ of the body – in this case, the kidneys – can be a telltale sign of environmental harm, he says. “Sri Lanka serves as a clear example of how environmental change leads to so many downstream effects that affect people’s lives.”
The confounding cause of CKDu means it’s difficult to prescribe solutions for villagers, although those with the means are switching from drinking groundwater to filtered water.
Filtered water is not an option for many, however.
“If you’re choosing between food and sending your kids to school, you’re not going to be spending money on filtered drinking water,” says Sumuthuni Sivanandarajah, a marine biologist working at Blue Resources Trust, a marine research and consultancy organisation based in Sri Lanka.
Her work focuses on the self-employed fishing communities along the coasts of Sri Lanka, among whom kidney disease is also on the rise.
Sameera Gunasekara is a research scientist at Theme Institute in Sri Lanka exploring how climate change and diverse environmental exposures affect public health – specifically kidney diseases.
He agrees that the economic crisis has made it harder for people in remote farming and fishing communities to buy water filters. “People know, are conscious that clean water helps,” he explains. “But there’s some misunderstanding. [People] think that chlorinated water, or boiling, will help. That does with bacteria, but not the removal of hazardous materials.” The need for more education in these underserved regions is key, says Gunasekara.
Across the afflicted north-central farming provinces, Gunasekara is working to help educate the local population on reducing agrochemical usage, not staying in the sun for a long time, and preventing dehydration.
“Farming and fishing people have a stereotype, they are hard groups to convince,” the researcher continues. To begin with, biomarkers for the initial stages of the disease – back pain and leg swelling – are very subtle; not everyone experiences them. But even those who do experience them may not pay them heed.
“They just take a painkiller and get back to the field – they tend to suffer for a long time without doing proper [kidney] screening.” For many of these households, says Gunasekara, since the father is the only person earning money, the whole family collapses when he falls ill.
An economic crisis and chronic dehydration
Batticaloa on Sri Lanka’s east coast, known for both its aquaculture and agricultural activities, in the form of shrimp farms and rice and fish processing facilities, was the site of a brutal massacre during the nation’s relatively recent, longrunning civil war between the Sinhalese and Tamils. It is also one of the hotspots identified for the prevalence of CKDu, he says.
The civil war was an ethnic conflict that lasted for 26 years, ending in 2009 after killing more than 100,000 civilians and 50,000 soldiers from both the Tamil and Sinhalese sides.
Christy PL Navil, 58, has been working as a fisherman here for 12 years – before that, he worked as a helper on the boats. Along Pasikuda beach near Batticaloa, a landing site where 106 fishermen work each day, Navil fishes for calamari from 5am, not returning until the afternoon.
“Sometimes it’s many fish, sometimes it’s no fish,” he says. On the boat, they bring very little water considering the conditions – just 5 litres for two people to last for more than nine hours in the tropical heat. “The sun is hot, but we are just used to it. Sometimes fishing is busy, we aren’t drinking water or eating,” the fisherman admits. “We want to catch the fish.”
With the economic crisis, many fishermen also have to cut back on food, only taking one meal a day.
The resulting chronic dehydration is a major problem, says Sivanandarajah. She points to a combination of hereditary issues, water sources and pollution, toxins in agrochemicals, anthropogenic factors (for example improper pesticide container disposal), and lifestyle issues as possible CKDu causes.
Some fishermen are accustomed to drinking local “arrack” – a form of liquor – to help manage seasickness, she adds. “This is wearing on the body, the kidneys. And with the rising temperatures, it may not be a root cause, but it’s definitely a stressor.”
The lack of formal fishing collectives or societies, the marine researcher continues, means that little is known about the impact of ocean resource depletion on these self-employed communities – or the subsequent health ramifications.
“Government officials lack the knowledge on how to communicate [with fishermen,] they don’t like being out in the field,” says Sivanandarajah. “Sri Lanka’s fisheries sector depends on politics, what the admin implements. No one knows about the fishermen’s income or situation on the ground. It’s very top down, and no one is actually doing anything with the data.”
Food scarcity is a major issue – particularly during the off-season and especially with the ongoing economic crisis, Sivanandarajah says.
There is also the high use of tube wells, inserted deep into the ground – deeper than wells – which extract very hard water as they break past phosphorus barriers in the earth which would normally act as a water softener, making the water easier on the human kidneys. “These became popular during the tsunami and monsoon seasons since ground wells are destroyed and contaminated by seawater,” Sivanandarajah explains.
Geological shifts linked to climate change can also increase the likelihood of earthquakes and volcanic eruptions, which in turn heighten the risk of tsunamis, say scientists. It is estimated that by the end of the 21st century, the global mean sea level will rise by at least 0.3 metres given current greenhouse gas emission rates, which would further inundate coastal communities with brackish water.
Crippling debt
Nadaraja Pereatambi, 62, has been working as a fisherman from Pasikuda beach since his youth. Two years ago, he was suffering from unexpected, acute kidney pain, culminating in an emergency operation and a 50-day hospital stay.
The treatment was largely successful – Pereatambi is cautiously back at work on the fishing boats. However, he had little choice but to take a 2 lakh loan (200,000 rupees, nearly $675 – an unthinkable sum for someone who makes as little as $4 a day, depending on the catch) to pay off the hospital bill.
“Six other fishermen working on this beach also have issues with kidneys,” he says. “Most have no money for hospital, even when suffering from kidney stones.”
It could be a water problem, he surmises. In the Pasikuda area, he continues, it is common knowledge that the water quality is poor: there’s too much calcium and fluoride, among other minerals: “It’s all very hard.”
Outside the government-funded District General Hospital in Negombo along Sri Lanka’s western coast, a little north of the capital city of Colombo, 48-year-old W Sirani Silva is easing into a tuk-tuk that her husband will drive her home in.
Two years ago, she found out she had acute kidney damage – with less than 10 percent function remaining – after experiencing nauseating back and stomach pain.
Each week, Silva makes the 20km journey twice for dialysis sessions in hospital, and is on the waiting list for a transplant. She is far too sick to take care of the house or her three children but is grateful that they are healthy. Since the onset of her illness, the family has switched to drinking filtered water, but still uses well water for cooking and other household needs.
Since Silva is so weak, her husband, K Usdesangar, 51, accompanies her to every dialysis visit, which means he loses income from working as a tuk-tuk driver – he was previously a fisherman – on those days.
“We have no idea where this comes from,” he says, since Silva had an otherwise clean medical history and never suffered from hypertension or diabetes, the main precursors for most kidney disease patients. “Perhaps, it just comes with the family.”
