20 years ago this house was the held the hopes and dreams of a family of five. To purchase the house, they had to submit an application to the Rural Development Institute (IDA) of Costa Rica in order to be beneficiaries of a social housing program. This was in 1995. For the next almost three years, they suffered bureaucracy that felt like a form of punishment. Their application to access land purchase and payment facilities and help with the construction of the house passed from bureaucratic hand to bureaucratic hand and was only approved in 1998. The 52 year old Celia, rocking herself gently in a rocking chair, remembers those years.
At the end of 2000, the three children, still under 15 years old, and their parents Celia Martínez and José Quiroz, moved into the house that they had painstakingly built in Agua Caliente, a community located in Bagaces, canton of the province of Guanacaste, in Costa Rica. Then this place was a rural project still under development. Officials had just begun distributing the plots and the financial aid for the construction of houses. When Celia and José with their three children arrived, there were no basic services. “Even to get water we had to get up early because one could only get water once a day for a limited time,” she recalls.
At that time, the family was swimming against the tide: Central America’s massive urbanization project that was under way with millions of people leaving urban areas in search of jobs. 20 years ago, the urban population here, was already exceeding 50%. People were moving to the cities in large numbers -a phenomenon that threatened to leave the agricultural industry without workers. In order to stem this exodus, Costa Rica offered incentives to farmers to stay in the urban agricultural areas so that places like Bagaces didn’t run out of inhabitants and without agricultural labor.
Gradually, the Quiroz Martínez family were filling this 20 meter long and 8 meter wide house, made of raw brick, with furniture and memories. The external corridor, a dining room and two bedrooms, was now a home. There was space to place chairs, tables, shelves, and ornaments. Only a few meters away, in the extensive sugarcane, rice and melon plantations, was work. Celia remembers those earlier years. “They had no break or rest. My husband and my son started at 5 in the morning and ended at 5 in the afternoon, seven days a week they didn’t get Sundays off. They were almost never home. They only worked.”
Today, that vital productivity and hard work, is gone. All that remained the same, is a horizon full of sugar cane and rice. Half of the Quiroz Martinez family suffers from Chronic Kidney Disease (CKD): José, Celia and the son who still lives with them, Diego is ill. The other two daughters are refusing to have the necessary tests to be diagnosed.
Just as their work in agriculture served to pay many household bills, enabled them to live a decent life, this job and the location of their home, has given them a death sentence.
A study published four years ago estimates that the housing deficit in Latin America was 34.3%. While for Central America, it’s 47.66%. But this data doesn’t tell you the real story. 40% of the housing deficit for Central America is not quantitative, but qualitative. There are houses, but it fails to meet the minimum requirements for people to actually occupy these structures. They are self-built homes without basic services such as electricity, water or toilets or houses are located in what is considered “risky areas”. Quiroz Martinez’s house falls exactly in the latter category.
The pervasive occurrence of Chronic Kidney Disease transformed everything. Today, even the spaces inside people’s home, are largely taken up with machinery associated with CKD. Celia and José tell this story sitting in the corridor, where there is barely room for a couple of chairs. Most of the floor space is occupied by the serum boxes containing their medical supplies for the next two months. Celia and Jose’s house looks more like a rural clinic for sick people than a home for the healthy.
The Quiroz Martínez-family story, is not the only family working on large scale agricultural farms, affected by CKD. Guanacaste, 130 miles from the capital, is one of the largest province in Costa Rica. Here are sugar mills that supply local and international markets, such as the Taboga. This region offers large scale employment in agriculture, and governments have been responsible for improving connectivity with the capital city, San José through the construction and maintenance of roads. What successive governments have been unable to do, has been to stop the annual rise in cases of kidney disease. Costa Rica’s Ministry of Health has identified eleven cantons with the highest prevalence of deaths from chronic kidney disease. Of those, 10 are from Guanacaste, in fact; all of them are part of this province, plus a neighboring canton.
CKD directly linked to specific agricultural communities, began to be detected 30 years ago already. In all this time, however, there is little research done identifying the causes of it. What is known, is that CKD has an obvious geographical and social component. From Mexico to Panama, Costa Rica, Guatemala and El Salvador, various studies reveal the high prevalence of cases amongst agricultural workers, working in high temperature with limited access to drinking water, low schooling and, above all, amongst people living near macro cultures, with a constant exposure to agrochemicals.
The most recent and closest study looking at the causes of the disease suffered by hundreds of families in Guanacaste, is the one published in November 2019 by a group of 17 researchers. For one year, they tracked the cases of 34 patients who were from Sri Lanka, France, India, and El Salvador. The investigation concluded that people residing in agricultural communities present a specific kidney lesion that makes them vulnerable and more susceptible to contracting CKD. “We suspect that pesticides used in agriculture are responsible for causing this nephropathy,” explains Marc de Broe, one of the 17 specialists who conducted the study. “Here we present convincing evidence that CINAC (Chronic interstitial nephritis in agricultural communities) is a lysosomal tubulopathy probably caused by a toxic substance or substances,” the study reads. This means that people have kidney vulnerability.
When the Quiroz Martínez struggled to set up their home in Agua Caliente, more than 20 years ago, this was not yet known. The number of chronic kidney disease incidence, were barely recorded. And despite the obvious concentration of cases presenting itself specifically from agricultural communities, it would still be many years before the medical fraternity was moved to start investigating patterns and causes. In the interim years, not only did this one family fall ill. Around them, more and more people died with withered kidneys.
Costa Rica began keeping more specific records of the disease until just a couple of years ago. Adriana Torres, head of the Noncommunicable Diseases Surveillance at the Ministry of Health explains: “In 2018, which was the first year it was registered, 617 cases were reported for the entire country. By October 31, 2019, over 3,600 cases have been reported.”
This figure only refers to people that have been diagnosed with Chronic Kidney Disease. And while they are a partial figure to the real impact of the disease, they pose a serious problem of capacity in hospitals. CKD is degenerative. Eventually, the patient needs dialysis treatment, which involves a machine doing the purification that the kidneys are no longer able to execute for the body. For this process, a patient must be connected several hours a day, several days a week to a dialysis machine. Hospital spaces are limited, forcing sick people to build their own space in their homes to dialyze at the exact time when farmers are too sick to work and they stop earning a salary.
Arnoldo López Ávalos points to the three men in light blue robes. “They are my family,” he says. If a family is considered the people you spend more time with; they are his. Six days a week, from 6 in the morning to 6 in the afternoon, this family lives in the dialysis room of the Cañas Integral Care Center, Guanacaste, Costa Rica. Chronic kidney disease transforms dynamics far beyond tissues and medications.
When Arnoldo was young, he worked as a “flag guard”. His role was to stand between crop grooves and tell whoever was flying a plane where and when to release the agrochemical discharge. And, of course, as a flag guard, he got drenched, again and again, by the cool and deadly mist as the agrochemicals also soaked his clothes.
Now, at the age of 48 years, Arnoldo is just another renal patient in Costa Rica. Sharing the same employment profile of farm workers across Central America and in every country in the world where this kind of disease has occurred amongst agricultural workers, mostly between 30 to 50 years old, with limited economic resources.
Dr Hugo Delgado is a family doctor at the Nicoya hospital, another of the cantons of Guanacaste. Dr Delgado has had a front row seat watching the impact of kidney disease in the province. “It affects young men, aged 20 to 60. They mostly arrive at the hospital seeking medical help when it is already very late. Frequently they are already in stages 4 or 5 and barely a year later, they need renal replacement therapy or, most of them need dialysis.”
Dr. Delgado speaks from a small clinic where he attends patients. It would be physically impossible for all his patients to receive their treatment at this hospital.The space is not enough. . “Some 98% of (my) patients are dialyzed at their homes even though we are talking about this being a population living in extreme poverty.”
Celia’s voice, when she talks about her economic situation, seems to turn to a mere whisper; a voice so hesitant that the words seems to float disembodied. “We didn’t live a bad life. We both had some money; I raised piglets, raised chickens. We were poor, but we felt rich at the same time,” she says. “But now, we are here and this life is sad. We have no idea how to afford the future. Until now we haven’t realized how expensive life is.”
People who live in extreme poverty are those whose income fails to cover basics costs of their everyday living; while people in non-extreme poverty exceed the cost, but fail to meet all their basic needs, including housing. I don’t understand this sentence. Is Celia living in extreme poverty?
In Costa Rica, 7.2% of the population are living in extreme poverty according to a State of Housing in Central America study that worked closely with the Latin American Center for Competitiveness and Sustainable Development (CLACDS), INCAE Business School and Habitat for Humanity.
CKD patients who travel to hospitals for treatment are a minority, says Dr. Delgado. “They also only come to the hospital for three to six months while they learn how to do dialysis at home. The goal is for 100% of patients to do dialysis at home,” he says.
Meanwhile, Arnoldo has spent more than six months receiving treatment at the hospital in Cañas. Paying for all the alterations at his home in order to receive the necessary medical treatment, was beyond his means since he no longer was able to work as a flag guard or any job related to agriculture. The illness forced him to accept a pension that is his only source of income. And the only money he has to provide for his children. He paid for the sterile room constructed in his house over months. “A lot of my coworkers have died. This disease is the worst there is – anyone can get it. It advances and there is no way to reverse it,” he reflects.
According to the study aforementioned on the state of housing in Central America, the qualitative deficit of housing in Costa Rica is 16% in urban areas and, for the rural area, 29%. These figures don’t shed any light on the added risk of that comes with the location of housing.
Celia Martínez, the woman who starts this text, points to the down the road: “a woman died over there a few months ago from CKD,” she says. Further down from that house, there is a sick man and another showing CKD symptoms. Agua Caliente is a rural place in the middle of sugar cane crops, where diagnosis of CKD feels like all the residents’ destiny. She has no memory of medical personnel coming to their area to either do testing or conducting an educational campaign or even training those who are not yet sick, how to reduce risks.
Epidemiologist, Thaís Mayorga, who has been working in the region of Liberia for years, confirms that, as Guanacaste is inhabited mainly by families facing severe levels of poverty, the success of treatment cannot be measured only in the state of people’s housing and the construction of a sterile bedroom. “It’s necessary to ensure access to health services and basic services. San José , the capital, is far away and people are very isolated from services which makes it even more difficult to assist patients.”
Dr. Mayorga has stories of patients travelling some 300 kilometers for a consultation with a nephrologist. She tells how the people of Nicoya canton are forced to travel some 80 kilometers from home to go to a regional hospital and if they need hemodialysis, they must travel and additional 200 kilometers. “Where will people get money to travel when they are no longer working earning an income?” she asks. Families like Martínez Quiroz are trapped in a cycle of poverty, exploitation, and risk.
Celia, in Agua Caliente, whit her husband and son sick, is worried that by midday she has not done the house cleaning yet. She was unable to sweep and was unable to clean and sterilise the bedrooms with chlorine. Here, everything must be sterile.
CKD doesn’t invade only the bodies of people – it also occupies the physical space inside people’s houses. As one enters Celia’s family house, down the passage; left of the area leading to the kitchen, rows of boxes with serum takes up all available space. Inside the two bedrooms, there is hardly place to turn around: the bedrooms are where José and Diego have set up a sterile area where they get their treatment to their already shattered kidneys.
Back inside Celia’s house: Her frantic cleaning and anxiety around cleanliness, is not posturing. In these small rooms that make us their home, is where her husband and son have dialysis treatments. Celia herself was also diagnosed with the disease, but at an earlier stage. Because she is not yet critically ill, she is regarded by the medical fraternity. This places her in the category of “caregiver”, despite her own precarious health. She is sick, and it is normal she gets tired, that her strength is going away and that, at this time of the day, she hasn’t been able to fulfill the task of chlorine, rag, broom.
Althought Celia is in the early stages of kidney disease, she only worked occasionally in agriculture. She doesn’t’ have diabetes and does not suffer from hypertension, two of the underlying diseases that later lead to CKD due to traditional causes.
At home, Celia is in constant exposure to agrochemicals. The 17 scientists working on the paper, “Cases of chronic interstitial nephritis in agricultural communities (CINAC), explain people like Celia’s symptoms in medical terms. For her, she wonders: What if my family and I didn’t move to Agua Caliente? Bagaces? Guanacaste? Names of towns so remote, few outside Central America would be able to find it on a map. Would we be sick today?
Carlos Orantes, a nephrologist, is one of the 17 researchers who signed the study. In an office of the Ministry of Health of El Salvador, he explains: “There is an increased likelihood of CKD if you live near agriculture areas, mainly sugarcane.” So if Dr Orantes already know this so definitively, why are women like Celia and her family not warned; protected?
In Celia’s house, she explains how they live: Each of two rooms has a bed, a table, a raised area like a stand or pedestal, for the serum. She pauses in front of two luxuries that cost the family all their savings: a sink and an air conditioner.
“The air conditioner doesn’t feel like a luxury. It is life-saving. Celia remembers how they had to sell their animals and still it was not enough to afford the air conditioner. She then started organizing raffles among her neighbors – people just as poor as she – who, out of solidarity, made her money. “When Diego became sick, he found the heat unbearable and could hardly breath. We tried other remedies, like we put ice on him but it was useless,” she says.
In order to afford the sterile rooms, they had to buy all the materials. The labor was done by José. With his body already racked with disease, he fitted the sink, polished and painted the walls. But before he was finished, their first born son, Diego, fell seriously ill. Diego was given the sterile room meant for Jose. With diminishing strength, Jose started working on the second room. This time, it cost even more money and with no income to afford an air conditioner. Celia herself have to sleep here. This is an only two room house. Despite doctors giving her strict advice not to share the room with Jose.
Living with chronic kidney disease, has left José feeling utterly defeated. Before the disease started gnawing away all his physical power, he just recently managed to buy another sink for the second room and wood for the ceiling. “I look at the sink; look at the wood. I don’t have the strength to put it in and I don’t have money to pay someone to do it either,” he says looking away.
Celia has more worries. CKD is a degenerative disease and unless she gets a kidney transplant, she will also, eventually, need to dialysis. “And where am I going to go? There are no more space or rooms in our house. We are all sick.”
There’s no way to answer that question.
Glenda Girón, Bertha fellow 2019-2020