H.B. Primathilake sips tea with his fellow patients in a makeshift, smoky kitchen, joking with his recently made friends and helping to dice vegetables. He comments that he likes it here, there is a sense of freedom at the Sinhala Indigenous Medicine Center where he is being treated for CKDu. It’s a world away from the beeping, fluorescent lit dialysis units in nearby towns like Anuradhapura where many other patients from similar backgrounds are being treated 3 days a week, presumably for the rest of their lives. H.B. carries out his chores, cooks, takes herbal medicine prepared by the family of doctors that runs the center, and most importantly, rests. “I’m happy here. I’ve been here for a month and I’m feeling stronger. “I’ll be cured and will be going home soon.”
In June of 2016 I was invited by photojournalist Ed Kashi to travel with him to Sri Lanka to investigate CKDu. While he photographed the issue over the course of two weeks, I produced a short documentary film, In the Hot Zone, focusing on people in the trenches of the CKDu epidemic there. Of particular interest was the Sinhala medical tradition, a combination of dietary and spiritual therapy, which has existed for over 5,000 years and is unique to the island off the southern coast of India. In Buddhist tradition, the people pray in their humble, homemade temples, cook for the entire group of patients, and care for the facilities. One of the protagonists that the film follows is H.B. who comes from a long line of rice farmers in Trincomalee District in Northern Sri Lanka. Like many other farmers affected in the area, H.B. has put his hope in the Sinhala medicine tradition after deciding that Western medicine failed in curing him. It’s common for farmers and local doctors to say “We’ve been farming rice for 5,000 years and only now are people getting sick. They only thing that’s changed is in the past thirty years we’ve begun using pesticides.” But HB seemed to think there was more awry. He asked that, “if women don’t handle the pesticides, why are they sick as well?” The drinking water is a common factor which could contain heavy metals and pesticides and is being investigated as a potential cause as well as the hypothesis of severe, chronic heat stress and dehydration.
As a storyteller dedicated to exposing the realities of people around the world facing CKDu I’ve come to understand how important it is for not only researchers, but governments and companies operating in affected zones to understand the idiosyncrasies of these “CKDu hotspots”. So the opportunity to share the perspective of farmers and patients like H.B. and local activists as seen in the film, is crucial for all stakeholders in order to gain a fuller understanding of this epidemic and its collateral damage.
In Sri Lanka’s North Central Province more than 23,500 people have died of Chronic Kidney Disease of undetermined causes (CKDu) and in many communities 15% of the population is affected, mainly farmers working in the sun. “This is not only a health problem, this is a problem of our civilization, this is a problem of our society, this is a problem of our economy.” says Dr. Jayasumana one of Sri Lanka’s leading CKDu researchers. In my perspective, this touches on the core of the issue. The countryside around the world is being converted ever more into large scale monoculture operations, requiring fewer people but consisting of hard work in often times dangerous environments. There is much talk of CKDu being related to climate change, increasing temperatures leading to increased heat stress and harsher working conditions. That is certainly a possibility, but as this disease also typically affects the most marginalized, vulnerable, economically disadvantaged, rural, smallholder farmers and monoculture workers, it may be that the world was never paying attention, neither to their illnesses, nor to their treatments. It’s time we begin to listen.
Watch the film below to listen to H.B.’s full story, along with local researchers and activists facing CKDu in Sri Lanka.