Peru: A Region Abandoned

Edmundo Rafael Aguilar Vasquez, 32, of the hamlet of El Chumpon stands alone on the street of his hamlet. He has suffered from CKDu since he was 18 years old, receiving dialysis for 14 years. His sister, Lina Aguilar also suffers from CKDu and doctores, unable to diagnose his disease, told them it was genetic. He worked with his father in the pepper and tomato fields for 3-4 years before falling ill but is unsure as to what to attribute his sickness to. El Chumpon, Paijan, La Libertad, Peru.

A young woman and her brother sit in rocking chairs in the living room of their parent’s earthen brick home. The door creaks and the mother brushes sand off the front patio. Outside, the land is desert, with sand dunes spilling over onto highways which give way to fertile valleys full of sugar cane just meters from arid, rocky ground. Here, in a quiet village in La Libertad, Northeastern Peru, the sister and brother, 29 and 32 years old, are resting after recently completing dialysis sessions at a nearby clinic. They both suffer from Chronic Kidney Disease and doctors have not determined the cause. Growing up, they worked in the pepper and tomato chacras, or agricultural fields, with their father surrounding their small village. They were exposed to herbicides and their family has always depended on a community well as a water source. The brother was diagnosed with Chronic Kidney Disease of undetermined cause (CKDnT) at 18, now on dialysis for 14 years paid for by an agricultural social security program. The sister had worked less so she could study. At 24 she developed problems with her vision and headaches, was diagnosed with CKDnT and began dialysis shortly thereafter.

For 10 days in March 2017 I travelled through northeastern Peru, meeting with doctors and researchers and visiting communities to investigate possible cases of CKDnT. Based on the geography and climate, the types of labor common to the area, and the fact that there is at least one study being conducted in the northern city of Tumbes where there appeared to be cases of CKDnT, the La Isla Network team decided it would be valuable to visit the region. Our partners at CRONICAS research group in Lima put me in touch with a nephrologist in the region. It was very apparent to Dr. Joel Zapata, head of nephrology at a hospital in Piura, that there is major interest regarding CKDnT in the region. “They arrive convulsing, vomiting and already at stage 5 kidney failure, never having shown symptoms before. Most come from the countryside and had worked in agriculture, fishing or on the docks.” I spoke to a few of his patients in a very full dialysis ward, who corroborated Dr. Zapatas assertions indicating the presence of CKDnT at epidemic levels. One woman, who worked as a nurse and attributes her disease to the water in her town, recently lost a young cousin to appears to be CKDnT and now his brother has been diagnosed, both were dockworkers. At 144 USD a month just in travel costs, the treatment she receives takes an enormous financial toll on her family as well. I had seen this same drama played out in Nicaragua, El Salvador, India and Sri Lanka: small farmers, and here even dockworkers, succumbing to CKD so young, with no idea as to why, leaving their families devastated both emotionally and financially.

The situation admittedly looks bleak in northeastern Peru and maybe the barren landscape and the heat add to this effect. But just like anywhere else where workers and farmers are affected, there are local medical professionals personally invested in researching and preventing the disease. And like in many countries, they are often working alone. My contact lists from these trips read as a list of local heroes, working day in and day out, on the ground, visiting patients homes, connecting the dots, and now, joining a global network to help find the cause of CKDnT to prevent others from getting sick. La Isla Network has evolved from being one of these local organizations investigating and preventing the disease in one “hotspot” to recognizing the urgency and efficacy of connecting all of these research efforts. This way, medical professionals and researchers in Central America, in Sri Lanka, India, Thailand, Cameroon, Peru and many other countries can communicate directly to share ideas, strategies and investigation techniques. We’re building alliances to prevent CKDnT globally, by connecting those acting locally.

LIN partners are undertaking work in Tumbes under the DEGREE Initiative. They will establish via community based prevalence studies whether or not what people are reporting is in fact CKDnT, and if so how many are affected. This effort is being spearheaded by the London School of Hygiene and Tropical Medicine and their local partner CRONICAS at the Global Health Centre in Tumbes and their colleagues at University of Heredia in Lima, to begin to understand what’s happening in a region long abandoned.

Read the full investigative report from this trip here.