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In Sri Lanka, breakthroughs, setbacks and a spiritual touch

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Slideshow: Mystery in Sri Lanka

By Anna Barry-Jester

Men walk through rice paddies after morning's work near Anuradhapura, Sri Lanka. In Sri Lanka, people with CKDu are predominantly male agricultural workers living in an area known as the "rice bowl."

Anna Barry-Jester

Sampath Kumarasinghe's aunt sweeps dirt outside their home near Kebithigollewa, Sri Lanka.

Anna Barry-Jester

A farmer tills his rice paddy in Padaviya, Sri Lanka.

Anna Barry-Jester

21-year-old Sampath Kumarasinghe relaxes with family outside his home near Kebitigollewa, Sri Lanka. Sampath has the most advanced form of CKDu, end-stage renal disease. He is slated to have a kidney transplant in the next few weeks, one of the first transplants to take place at Anuradhapura General Hospital.

Anna Barry-Jester

Nurses talk in the dialysis ward of Anuradhapura General Hospital.

Anna Barry-Jester

Sampath Kumarasinghe discusses the next steps towards getting a kidney transplant with nephrologist Rajeewa Dissanayake at Anuradhapura General Hospital, Sri Lanka. The 21-year-old rice farmer has end-stage renal disease.

Anna Barry-Jester

Sampath Kumarasinghe talks to Ajantha, a potential kidney donor, while undergoing dialysis treatment at Anuradhapura General Hospital, Sri Lanka.

Anna Barry-Jester

Mihintale Dhammarakkita Thero, a Buddhist monk, and high school principal G Gunasena sit outside the educator's home near Kebithigollewa, Sri Lanka. The monk donated a kidney to the principal, who suffers from CKDu.

Anna Barry-Jester

Mihintale Dhammarakkita Thero, a monk in Sri Lanka, donated his kidney to a high school principal with kidney disease. Mystery in the Fields is a three-part series that explores in text, photos and video how a rare form of kidney disease is killing laborers and crippling communities in three different regions, from Central America to Sri Lanka to India. As the death tolls mount, researchers remain puzzled, unable to definitively uncover the disease’s causes.

Anna Barry-Jester

Mihintale Dhammarakkita Thero (center), a monk in one of the regions of Sri Lanka most affected by CKD, donated his kidney to a high school principal with the disease.

Anna Barry-Jester

Buddhists visit the Temple of the Tooth in Kandy, Sri Lanka on Vesak, the anniversary of the day the Buddha attained enlightenment, one of the most auspicious days for Buddhists.

Anna Barry-Jester

Doctors replace a catheter inserted into the neck of Sampath Kumarasinghe. The tube facilitates his twice-weekly dialysis

Anna Barry-Jester

A rice farmer and his daughter outside their paddy fields in Anuradhapura, Sri Lanka.

Anna Barry-Jester

Sampath Kumarasinghe's grandmother cooks by candlelight in their home near Kebitigollewa, Sri Lanka.

Anna Barry-Jester

KEBITHIGOLLEWA, Sri Lanka — For two decades, chronic kidney disease has been a mystery and death sentence in Sri Lanka, striking 15 percent of the residents of its north central region.

This summer, after years of secretive official research, a glimmer of scientific hope emerged. The government and World Health Organization announced in June that they identified a key cause of the disease in Sri Lanka: chronic exposure to arsenic and cadmium, likely consumed in food.

Yet in a disease that has confounded experts across continents, even potential breakthroughs come with asterisks. The new report left huge questions unanswered — including where in the country the toxins were found, how they entered the food and what foods were contaminated. The key unsolved question: the extent fertilizers and pesticides contributed to the outbreak.

In Sri Lanka’s lush northern farmlands, the mystery and the death sentences continue. Lacking firm answers from the scientific community, some victims’ best hope for survival comes through the spiritual community — and offers of kidney transplants from Buddhist monks and those they inspire to make extraordinary sacrifices for strangers.

At 21, Sampath Kumarasinghe is among the victims awaiting that miracle.

The soft-spoken farmer was diagnosed last September with kidney damage so severe it had reached its terminal phase: end stage renal disease. Healthy his entire life, he suddenly became feverish and too sick to work in the rice paddies. His mother mortgaged their land to pay for his medical care, and they began the search for a kidney donor. One day, like a vision, a man appeared in his hospital offering to donate his kidney.

“I am only thinking of ways to save my son’s life,” said Sampath’s mother, Punchirilalage Dingiri Manike. “That is what I think of day and night.”

Sampath is among the youngest victims of a broad epidemic of chronic kidney disease sweeping north central Sri Lanka. Its victims are mostly male agricultural workers who do not suffer from diabetes or hypertension, the usual causes of the illness. The government and WHO call it CKDu: chronic kidney disease of unknown etiology.

Winding path to answers

CKDu emerged in Sri Lanka’s north central farmlands, known as the “rice bowl,” in the 1990s. Physicians began noticing clusters of kidney failure in which four or five members of a single household had the disease. Rezvi Sheriff, who began practicing in the 1970s as Sri Lanka’s first nephrologist and is the unofficial dean of the country’s kidney doctors, calls it a recent phenomenon.

“In the last 20 years or so,” Sheriff said, “we have noticed it.”

Researchers developed a succession of theories to try to explain the outbreak, from cyanobacteria to fluoride to aluminum pots and pans, but none settled the debate. The conflicting alarms spread fear and confusion among villagers.

The unsolved mystery became an embarrassment to the Sri Lankan government, whose leaders take pride in the health system despite the country’s per capita GDP of roughly $5,600 — less than one-eighth that of the United States. The country points to infant and maternal mortality rates approaching those in the U.S. and Europe.

In 2008, Sri Lanka’s Health Ministry invited the World Health Organization to join a comprehensive study to unravel the disease’s roots.

For more than three years, no results were announced publicly. “Releasing information piecemeal is not the solution for the problem,” said Dr. Shanthi Mendis, Coordinator and Senior Adviser of the WHO non-communicable disease program and the lead adviser of its efforts in Sri Lanka.

Scientific alarms sounded elsewhere. A group of researchers from Sri Lanka’s University of Kelaniya released studies citing widespread arsenic contamination in drinking water, food and soil — and blaming pesticides. In June 2011, several common pesticides were found by the government to have small amounts of arsenic, and briefly banned from importation.

The Kelaniya group’s findings provoked a storm of condemnation: some scientists questioned their methods, and government officials and Sri Lanka’s agribusinesses sector accused them of harming the country.

"Loose tongues and irresponsible reporting could lead to irrevocable repercussions in the export sector and thereby adversely affect the whole economy of Sri Lanka,” Dr. Anura Wijesekara, Sri Lanka’s registrar of pesticides, wrote in a column in The Island newspaper. “One interested group has already termed this as As [arsenic] terrorism.”

Two months later, Wijesekara lifted the ban on the pesticide imports. He did so, he said in an interview, because the amount of arsenic they contained was too small to pose danger. “It’s not a big deal to have so little amount of arsenic in a pesticide because arsenic is a natural element,” Wijesekara said.

Yet in the months before the ban was lifted, the official CKDu study group was internally warning of the “imperative” of stronger regulations for “nephrotoxic agrochemicals.” A WHO meeting report from June 2011, obtained by the Center for Public Integrity, cautioned that failure to act quickly could “result in cumulative damage to the health of the people living in these areas.”

A full year later, in June 2012, the government and WHO released partial findings, concluding that exposure to low concentrations of cadmium and arsenic is a key cause of the epidemic.

“The data that we have got up until now show that it’s a combination of nephrotoxic heavy metals,” said Mendis of the WHO. “For the moment all we know is that these heavy metals have entered the food chain.”

Still, much remains unknown. The government and WHO said that lab results found small amounts of heavy metals in CKDu patients’ blood and urine, but did not specify how much. Researchers said the metals got there through the food chain — and not through the widely suspected vector of drinking water — but will not say which foods were contaminated. Mendis said a technical report to be released in late October will lay out the details.

Agneta Åkesson, a toxicologist at the Karolinska Institute who specializes in cadmium poisoning, reviewed three WHO meeting reports describing Sri Lanka’s findings through February 2012. These notes, obtained by the Center for Public Integrity and described as “administrative” by the WHO, include the results of many of the biological and environmental tests.

“Based on what’s written here, you cannot conclude anything,” Åkesson said. In the absence of any newer evidence, she said, the exposure levels described were “not enough to cause chronic kidney failure.”

The results also offered no explanation of how the heavy metals entered the food.

A leading suspect is agrochemicals, which are heavily used in the affected area’s rice paddies. Cadmium is frequently present in phosphate fertilizers and can accumulate in soil; several pesticides in Sri Lanka contain small quantities of arsenic. Some regions of the world also have low levels of arsenic that naturally occur in the environment.

The official study’s research of pesticides and fertilizers remains incomplete.

To some, the government and WHO’s reticence to release more information raises the possibility that the undisclosed evidence points toward the agrochemicals and rice crops that form the economic backbone of Sri Lanka’s long-suffering northern countryside.

Dr. Channa Jayasumana, one of the Kelaniya scientists, said that in a private meeting with his group in August the health ministry acknowledged the role of fertilizers and pesticides. A primary culprit, he said, is a fertilizer called triple superphosphate, which will be targeted for reduction in the next growing season.

“They have narrowed down the problem to heavy metals and realized the importance of fertilizers and pesticides,” Jayasumana said.

The health ministry and WHO did not respond to inquiries as to whether they had identified rice, pesticides or fertilizers such as triple superphosphate as leading sources of heavy metal exposure.

The agribusiness industry says it’s possible heavy metals contribute to the disease — but that the theory remains unproven, and dangerous levels of heavy metals could not have come from their products.

The cause could be “cadmium or arsenic,” said Rohitha Nanayakkara, Secretary of the National Agrobusiness Council. “But what we say is it can't be from pesticides, because the quantities included in pesticides are minimal.”

Meantime, the government continues to import — and farmers continue to apply — thousands of tons of agrochemicals to the fertile paddies blanketing the farmlands of Sri Lanka.

Kidneys for Strangers

As officials debate their next steps, another movement is bringing hope to Sampath and others suffering from CKDu.

As Sampath was falling ill, a man in a distant village, W.B. Ajantha, made an unusual vow. When his wife became pregnant, Ajantha promised to Buddha that he would donate his kidney to one of the many young men who needed one. After his daughter was born, he went to the hospital to find a patient.

One day as Sampath lay in the dialysis ward, the stranger approached and offered to donate his kidney. Ajantha is one of hundreds of Buddhists, most of them monks, donating their kidneys to strangers due to their spiritual beliefs.

In Sri Lanka’s devout North Central province, where CKDu has become the leading cause of death, these orange and red-robed priests are revered by the population and supported by its alms. A nephrologist at a hospital in central Sri Lanka estimated that about one of the three transplants his unit performs each week relies on an altruistic donor.

“He said he is not doing it for money,” Sampath’s mother, Manike, said of Ajantha, who is Buddhist but not a monk. “I can only bless him as I have nothing to give.”

Tests confirmed that her son and Ajantha were a match. Sampath’s transplant is set to be one of the first performed at Anuradhapura General Hospital, a public hospital whose nephrology unit serves the entire northern region affected by the disease.

The operation will expand a growing program to provide patients with the only real solution to advanced CKD: kidney transplants.

Mehinthe Dhammarakkita gave his kidney when he was 28. As a boy, he had seen his ailing uncle receive a kidney transplant, and then go on to survive for more than 20 years. The monk was moved to donate his own kidney after visiting a village where he met sick patients who would die without a transplant.

“I thought about the impermanence of life and how our bodies will anyway be absorbed to the soil one day,” Dhammarakkita said. “If one can make a sacrifice when we are alive, one can gain some spiritual happiness.”

Dhammarakkita seeks to inspire villagers with his example and then connect them with patients in need. It was Dhammarakkita who provided the unseen link in Sampath’s apparent miracle — informing Ajantha of his plight. "If we can donate a part of our body to someone, there are no words to describe the happiness it gives,” Dhammarakkita said.

Although kidney donations in Sri Lanka are growing, they are provided to only a fraction of patients. The disease still overwhelms the health system, and the vast majority of eligible patients cannot receive dialysis, let alone transplants.

As he awaits his operation, Sampath continues to make the 8-hour journey to and from Anuradhapura Hospital twice a week. On a warm day in July, nurses dote on the young patient as they insert needles into his neck for his four-hour dialysis session. He flashes a smile, his teeth stained red with the juice of the betel nuts he frequently chews.

“I am happy,” he said, “but I do have some fear as well.”

RELATED: Listen to "Sri Lanka: Kidney Ailment Linked to Farm Chemicals" from PRI's "The World."