Patients with chronic kidney disease are amongst the most vulnerable sectors of the population and research shows more vulnerable to contracting the worst effects of COVID-19. In Jiquilisco, a coastal municipality of Usulután, El Salvador, the two diseases have merged in its deadly dance within a population that is also battling chronic and multidimensional poverty. The mandatory quarantine – called lockdown in other parts of the world – left this part of the population without the possibility of generating income and confined to houses not fit for allowing isolation.

Two diseases on deathly collusion path a story of Jiquilisco, El Salvador

Un reportaje de Glenda Girón

Fotografías de y reportes de Maynor Lovo

Photography by Maynor Lovo

In countries that are part of the so called developed (or “first” world), Chronic Kidney Disease (CKD) has close medical links to previous health conditions, such as diabetes or hypertension. This means that the deterioration of the purifying function of the kidneys comes as a consequence of the previous failure of other bodily processes. In those countries, it is a disease that represents a serious health problem for researchers and medical experts concerning themselves with diagnosis. It implies – for patients and for health systems – a treatment that is complex and expensive. In these countries, education against a sedentary lifestyle and diets high in fat and sugar, form part of what health authorities need to do.

Not so in Jiquilisco. Jiquilisco is a municipality of 429.99 km2, with a population of almost 50,000 inhabitants and located 103 kilometers from the capital, San Salvador. Julio Pérez lives here. And the disease that lives in his house, with its dirt floors, walls made from dried sticks, and pieces of plastic; is the same kidney disease having the same consequences, yet, only highlights the lack of any abundance; any comforts. Kidney disease in developing countries – or the “third” world – thrives in agricultural communities, among the poorest population.

Julio is 41 years old and no longer remembers how old he was when he started working. It isn’t an anniversary to which attention is paid in this rural area of Jiquilisco, on the coast of the Department of Usulután, in the eastern Salvadoran area. Here, in the very rural canton Roquinte, almost all economic activity is either agriculture or fishing, and there is no age marking when young boys or girls start out in a life mapped by hard, manual labour.

“I carried bricks, in the mangrove swamps, I pulled out curiles (crabs). I learnt masonry and worked in cornfields and quite a bit in sugarcane fields,” he remembers. The list of what Julio has done is extensive; the same applies to the amount and type of chemicals he applied or was exposed.

The disease that has been advancing in the municipality of Jiquilisco for two decades is the same one that has been devastating agricultural communities in Mexico, Guatemala, Honduras, Nicaragua, Costa Rica, and Panama, cutting deathly swathes through agricultural communities in Central America. Chronic kidney disease of non-traditional causes, is like macro cultures: rooted in the depths of the poor communities on the Pacific Coast of this region. The impaired kidney function of people like Julio, is very different from what the United States or the United Kingdom reports. “Our” CKD finds its causes in environmental pollution, limited access to clean drinking water, unsafe working conditions with laborers in frequent and direct contact with agrochemicals, but, more fundamentally: poverty.

Patient. Julio Pérez is 41 years old and, 14 years ago, he was diagnosed with Chronic Kidney Disease. He is one of those affected by this disease in Jiquilisco, Usulután.

For Carlos Orantes, a Salvadoran nephrologist who has dedicated most of his professional life to conducting international research into this disease, the classification that CKD deserves for non-traditional causes – like poverty – has been clear for years. Combined with the strong and clear occurrence within a specific geographical area, he has crystal clear thoughts on CKD.

Doctor Orantes began directing studies in 2009 in the Bajo Lempa, Jiquilisco is in this area. Orantes points out that this is not an “individual” phenomenon; it’s a “population phenomenon” and should be recognized as a pandemic because it is present in more than five countries amongst thousands of workers presenting similar characteristics.

A pandemic is defined as an epidemic disease that spreads to many countries or that attacks almost all individuals in a locality or region. “But, the problem is that we are used to speak about the phenomenon of pandemics only when referring to transmissible diseases,” explains doctor Orantes. The transmissible are those that are passed from one human to another through vectors, as is the case with COVID-19 or HIV/Aids.

In terms of the availability of medical services, Jiquilisco belongs to a micro-network consisting of health units and hospitals. It is in one of these health units where nephrologist, Denis Calero, works. “In the five years I’ve been here, this has always been the micro-network with the highest prevalence of CKD in the country. Both for the number that we handle of already diagnosed cases, as well as for the new ones that are appearing,” he says. Doctor Calero is the director of the Community Specialized Family Health Unit “Monsignor Oscar Arnulfo”.

Jiquilisco’s residents are fighters. Literally for decades, workers here have been fighting a relentless battle against a disease that counts amongst the most deadly and affects the majority of people living this coastal municipality: poverty. Severe poverty is present in 44.5% of households, according to a report of the Procuraduría de Derechos Humanos (El Salvador’s Human Rights Attorney’s Office). Homes like the one Julio shares with his wife, mother, and other family members, are examples of households revered to by Procuraduria de Derechos Humanos. They live in an adobe house – made from mud and straw – that barely stands up and is next to a ravine through which murky waters pass. Santos, Julio’s mother, says that she was able to buy this land with loans that she paid, little by little, with the money left to her by selling tortillas.

To this already precarious and thin life lines, the threat of contagion of COVID-19, is almost too much to bare. The conversation here is not about viruses and contagion. Most people here, are physically and socially so vulnerable, because the prevalence of CKD ensures that contracting COVID-19, feels like a death sentence. Poverty ensures that people here are already disadvantaged because of the cronic lack of food, the fact that people don’t have the resources to travel to collect medicine, and in certain areas don’t even have access to basic services, such as clean water.

“It’s complicated. In the hospital, they used to give us what we need, but now we went to hospital and it was full. We were turned away,” Julio explains from a corridor where a hammock hangs. He recalls there was nowhere to sit and that it was thanks to his mother, Santos, who carried a couple of plastic chairs, that they were able to rest a little while they were waiting. “We’re lending them to other older people also waiting – it’s the right thing to do,” Julio recalls leaning heavily on his cane.

The Ministry of Health were clear: patients with CKD has to be provided with all the materials to continue on continuous outpatient peritoneal dialysis in their homes. But these were mere words for Julio. He should, every four hours, walk to the only room with a brick floor and smooth painted walls, that the house has. This space was built with a lot of sacrifices and is reserved exclusively for him to receive his treatment.

Dr. Calero, in his health unit, has tried to shorten the period patients has to spend at hospital and has continued making house visits personally bringing care to those who need him most. He acknowledges: “We are taking extreme action against COVID-19, but perhaps we are neglecting these patients who suffer this other disease that has been here a long time and which is also one of the leading causes of death in the country,” he says.

For what is strictly limited to the renal unit he is in charge of in Jiquilisco, Dr. Calero confirms that, so far in the mandatory quarantine, three people have died from complications or progress of CKD. Three victims of the two pandemic crossing paths.

The disease that has been advancing in the municipality of Jiquilisco for two decades is the same one that has been devastating agricultural communities in Mexico, Guatemala, Honduras, Nicaragua, Costa Rica, and Panama, cutting deathly swathes through agricultural communities in Central America. Chronic kidney disease of non-traditional causes, is like macro cultures: rooted in the depths of the poor communities on the Pacific Coast of this region.

***

FOR THE PAST 20 YEARS, the advance of CKD from non-traditional causes in El Salvador has been unstoppable. In one month – between January and December 2019, 5,133 patients with CKD were diagnosed according to a Ministry of Health’s Institutional Operational Plan assessment report. All those tested, were found to be in stage 5 – the most advanced stage. Stage five this is when people are one step away from depending on renal substitution therapy treatment. Their kidneys do not work, and the cleaning function is performed with hoses and machines.

Of the cases discovered last year, only 10% had access to substitute therapies, according to the report. This means that only 544 of more than 5000 cases, had access to renal substitution therapy treatment, like dialysis (treatment at home with hoses and rehydration solution) or hemodialysis (hospital treatment with a blood filter machine). These numbers don’t paint the entire picture:  numbers do not include the National Hospital Rosales –  the hospital chain with the highest capacity to diagnose and treat kidney patients.

The assumptions medical professionals and health officials made about the causes of CKD, suggest that it is multi-causal and includes among its factors issues that are not medical, but rather social. The 2015 National Non-Communicable Disease Survey says: “The disease (CKD) is caused by occupational exposure to agrochemicals used indiscriminately by unprotected people during agricultural activity and, also, by environmental exposure to substances present in the soil, water, air, and food.” The document continues: “Such exposures enhanced by an intense work activity, developed under high temperatures and inadequate hydration and associated with social determinants – mainly poverty.”

Photography by Maynor Lovo

On the table infront of Julio is a bottle of alcohol gel and he is wearing a mask. Santos, Julio’s mother, explains that 14 years ago when he presented the first symptoms, the first thing they thought was that he was going mad. Fevers made him insane, and his behavior was severely affected.

By then, 2006 (14 years ago), scientific and government discussion about CKD in farming communities, was just beginning. Farmers and their families became sick and died within a matter of weeks, at most, months. Dialysis and hemodialysis treatments, which replace kidney function, were barely known in the community then. Julio was afraid of treatment. “He was convinced that the treatment will kill him because at that time, four of our neighbors died, one after the other,” recalls Santos. For the past 12 years he has been on ambulatory peritoneal dialysis, which means that every four hours, he is confined to his sterile room, and, there, he connects himself to two “hoses”: liquid enters his body through the one and leaves through the other.

Julio has not only been there when his co-workers die. He has also seen his neighbors die of the same disease that affects him. When he was diagnosed, four of his friends died in quick succession.  Throughout his treatment, more friends died. There have been so many… “I don’t even remember.”

The mortality rate for Chronic Kidney Disease in El Salvador grew by 3.3 points in just one year. By 2019, it reached to 56.3 points. In this country, this disease leads to death of more people than cervical cancer or hypertension.

Julio, like his neighbors, has no other health conditions – only CKD. According to the Noncommunicable Diseases Survey, of the total cases of CKD detected in El Salvador, 30% of patients have no high blood pressure, diabetes mellitus, or albuminuria. 30 out of 100 people sick with CKD, contracted the disease because of where they live, the conditions under which they work, the weather, and the kind of work they do exposing them to chemicals.

Lack of quality. 25 % of the Salvadoran housing stock has a poor ceiling, walls or floors, according to a study that, in other institutions, Habitat for Humanity signs.

In Jiquilisco, cases of COVID-19 have already been reported. The highly contagious virus, is already circulating in this community. Due to the risk posed by COVID-19, CKD patients have been encouraged to stay at home and medical consultations suspended to avoid crowding at health centers and hospitals.

Doctors and medical officials are looking for ways to make sick patients stay home and receive their treatment there. Healthy family members are encouraged to collect supplies on behalf of patients. But even these measures, announced to “protect” the vulnerable, carries a death sentence confining patients to their homes: Homes that is radically inadequate to guarantee most people with CKD hygienic and save surroundings to receive medical care.  Most sick people in Jiquilisco can simply not afford this.

In El Salvador, 75% of housing is defective and of poor quality. Among the most presentable of homes, 3.5% do not even meet the minimum requirements established as acceptable for a home, according to the State of Housing in Central America report, supported by Habitat for Humanity, among other institutions.

Doctor Orantes began directing studies in 2009 in the Bajo Lempa, Jiquilisco is in this area. Orantes points out that this is not an “individual” phenomenon; it’s a “population phenomenon” and should be recognized as a pandemic because it is present in more than five countries amongst thousands of workers presenting similar characteristics.

***

Santos, Julio’s mother, admits that she bought the land where they live although she was told that the previous owners left because it was not deemed healthy to live there. Santos’ property is one piece of land – of 24% of all land in this area – where families live in homes that is not safe. Taking building materials into account, 25% of all Salvadoran housing has weak ceilings, walls, and/or floors. The floor where Julio is standing, is made of hard-pressed dirt.

Covid-19 and CKD share one health recommendation: frequent and rigorous hand washing. As in many other diseases, personal hygiene is key to forming a barrier between the virus or disease and people. In the case of COVID-19, clean hands can prevent contagion. In CKD, clean, washed bodies, can prevent infections. A major obstacle in this area however, is that 27 out of 100 households have only sporadic access to clean water.

Doctor Calero indicates that he cares for between 600 to 800 patients just in Jiquilisco. His patients are at different stages of the disease. But the patients in stage 5 who are already depending on therapy – either dialysis at their homes or with hemodialysis at a hospital – are the cases most worrying. It is potentially lethal if one of these patients go undetected and untreated during this time. “They can’t be overlooked… There are fears of going to a hospital or health unit because of this quarantine thing. In the renal patient, this is serious; if we don’t control them, it can get complicated, it can get very uremic, or it can get to suffer from pulmonary edema.”

Recently, in one day, Dr Calero, had to visit eight patients in homes so far apart and so difficult to reach, it took him late into the night. Dr Calero uses his own resources to do this. He knows that state hospitals and systems are not designed to accommodate this level of care.

Problem. Macrocrops require a lot of care and resources. Agrochemicals raise production, but deteriorate the health of workers and residents of the area.

The Ministry of Health’s top officials, issued no exceptional guidance for patients with CKD or those suffering from any other chronic non-communicable disease, except, in general, to stay at home to reduce the possibility of contagion.

In an article he published in this newspaper a couple of weeks ago, Dr. Carlos Orantes, nephrologist and researcher, made the point about the risk of this vulnerable sector of the population: “Patients on dialysis are particularly vulnerable to this coronavirus, especially those who don’t receive a proper dose of dialysis,” he explained. The reason is “that it has an impact on a decreased immune state that increases the risk of presenting the most severe form of COVID-19.”

Julio knows he must stay home. But the circumstances in which he and his family must comply with this state directive of social isolation, escapes any social media cliché. There are no books here, no TV or online movie services, and no home delivery of groceries. Santos, Julio’s mother, stopped making tortillas, and now the one who owns the business is her daughter-in-law. They live from what they get selling tortillas. Going out to sell the tortillas, however, is itself risky business. When movement restrictions intensify, as has happened in other municipalities, there will no longer be customers. There will be no income. They will be left alone in their house of badly manufactured bricks and metal sheets, trying to survive two pandemics.


Glenda Girón, Bertha Fellow 2019-2020

 


Generic placeholder image
Séptimo Sentido

Séptimo Sentido les invita a que nos hagan llegar sus opiniones, críticas o sugerencias sobre cualquiera de los temas de la revista. Una selección de correos se publicará cada semana. Las cartas, en las que deberá constar quien es el autor, podrán ser editadas o abreviadas por razones de espacio o claridad.

[email protected]

Encuéntranos en Facebook (Revista 7S) y Twitter (@revista7S)

MIEMBRO DE GRUPO DE DIARIOS AMÉRICA

© 2020 Séptimo Sentido, La Prensa Gráfica. Diseño de Hashtag. | Programación y mantenimiento Diseño Web LPG