osé says he has seven children because "We didn't have a TV." And Antonio laughs: "He managed to park his car several times". You can tell between the laughs that this is one of the two best days of the week: their bodies don't bring excess fluids; they have just been released from the San Juan de Dios hospital, in Santa Ana, for a medical procedure. They come in a good mood, even if they still have a couple of hours of travel before they get home.

Antonio is the most experienced of the four patients traveling this September in the minibus arranged and paid for by the Mayor's Office of Jujutla, in Ahuachapán, El Salvador. In this municipality, located 102 kilometers from the capital, there are many people with bad kidneys. They cannot urinate. And no nearby health center has the necessary equipment to care for them.

For this reason, a commune with very restricted finances must reserve $2,000 per month just to maintain the transportation used by José, Antonio, and 20 other patients to travel 93 kilometers to the hospital in Santa Ana. There they receive replacement therapy for what the kidneys naturally do: purify fluids.

Public health is not the El Salvador municipalities' task, but of the Ministry of Health. Víctor Martínez is going on his sixth term as mayor of Jujutla, adding 16 years in office. From that experience, he says that the minibus has never ceased to be necessary: "One person dies and another comes out with the disease." He adds: "If we don't maintain transportation, they die faster. This disease is unforgiving."

In 2020 alone, the year of the beginning of COVID-19 pandemic, chronic kidney disease caused the death of 1,738 people between the ages of 30 and 69 throughout the country, according to the Ministry of Health's Institutional Operational Plan of 2022. It added more deaths than cancer (1,355) and chronic respiratory disease (392).

In medical researches as well as in reports from health centers, this disease is highlighted as one of the ones with the highest mortality rate in the country (128 per 100,000 inhabitants) and is, at the same time, one of the most resource-intensive. In line with this, in 2021, an amount of 2.3 million dollars was programmed in the General Budget of the Nation to improve the dialysis therapy received by kidney patients. However, at the end of that year, only 5.8% of the fund was executed: $134,575.60.

For 2022, an investment aimed to improve the conditions of care for patients with this disease has also been scheduled. This time, the fund was 2.8 million dollars. As of August 2022, only $455,643 had been invested, 16.4% of the $2.8 million fund, according to research conducted in partnership with CONNECTAS. Executing this money would have helped people like Antonio, who on this September day travels in the minibus after receiving hemodialysis and smiles at José, a gesture that in five years of comings and goings, he has also shared with other neighbors, companions on the way, who died earlier from kidney disease. Antonio is a survivor.

The minibus that goes to Santa Ana begins the route every day at 3:00 am and is filled, mainly, with patients who live in Guayapa, a community of farmers in the municipality of Jujutla that, as often happens in the Salvadoran coastal area, shares space with large areas of sugarcane crops.

Here, inside the minibus, everyone has planted sugarcane, fertilized sugarcane, and grazed sugarcane. All claim to have seen the small planes and drones on their roofs from which they spread chemicals that help the harvest to be what is expected to be that year or more. Everyone has found in this job a way to earn an income at some point in their lives. Until they couldn't take it anymore. José fainted while preparing the chemicals for the crops, and since then he has been on replacement therapy: his kidneys stopped purifying his body.

Up-to-date medical guidelines on the treatment of chronic kidney disease indicate that outpatient treatment at home is best for the patient. If precarious housing conditions prevent it, as is the case with many of the residents in Guayapa, then the idea is to do it as close as possible to the home. From this point of view, this minibus with kidney patients is, in every way, an anomaly.

The residents of Guayapa have been demanding for years that the community clinic -where only common illnesses are treated- be provided with what is necessary so that the many kidney patients who live there, and in the surrounding area, can receive the care they need without traveling. This request reached the Salvadorean Congress in 2018. And the deputies approved 400,000 dollars to be allocated for the construction of that long-awaited renal care clinic. But the commitment was not carried out.

Nayib Bukele, the current president of El Salvador, has rarely spoken about kidney disease. One such occasion was in January 2022. At the time, he said, "A patient with kidney failure cannot live without his dialysis in time." He was inaugurating a kidney care clinic in the hospital of Santa Rosa de Lima, in the eastern part of the country, at the other end of where Guayapa is.

In that event, Bukele promised to build and equip renal areas for four hospitals located in Zacamil, in San Salvador; Jiquilisco and Usulután, in Usulután; and San Vicente, in San Vicente. None are near Guayapa. The president did not give details of when these areas would be delivered or when services would be available.

The press office of the Presidency publicized the inauguration "as part of the strategies to facilitate and bring public health services closer to people with kidney failure." Authorities also announced a program to prepare people to continue their dialysis treatment from home. "It allows us to personalize the health intervention, to improve the quality of life of patients and adapt them to their family and social environment," they said at that time.

The actions that the Bukele government describes that took place in Santa Rosa de Lima are the same as those that the inhabitants of Guayapa and the surrounding areas have been demanding for years: the possibility of bringing treatment to those who need them. Because boarding a minibus 3:00 am and making a two-hour journey to receive replacement therapy for kidney function is, apart from an anomaly, a very big sacrifice for a person who lives without being able to urinate and with a tube in the abdomen, neck, groin or arm, that is what allows receiving dialysis or hemodialysis.

Guayapa and the broken promise

The high incidence of cases of chronic kidney disease in Guayapa has been obvious for decades, but it began to be measured in 2009 when the Ministry of Health carried out a cross-sectional and analytical study that lasted until 2011. This included an active screening of cases of chronic kidney disease and risk factors in the population aged 18 years or older in three regions of El Salvador: Bajo Lempa (department of Usulután), Guayapa Abajo (department of Ahuachapán) and Las Brisas (department of San Miguel).

After years of research, the document "Epidemiology of chronic kidney disease in adults in Salvadoran agricultural communities" was published. In the case of Guayapa: out of every 100, 18 people already had kidney damage. When you look only at men, the figure rises to 23 out of 100.

The inhabitants of Guayapa, aware of the illness, of the deaths, and that no one would speak for them, directed the efforts of the Community Development Association (ADESCO) regarding kidney health. Thus, they demanded resources for patient care. Years passed. And it was only in June 2018 that they could take their clamor to the Congres. That appointment seemed to be the best thing that had happened to their cause. And it would get better.

After hearing from Mayor Martinez and three neighbors during a 20-minute committee hearing, deputies approved dedicating a $400,000 fund to building a kidney care clinic in the community of Guayapa. This was specified in an agreement signed by 11 deputies.

This document explains that the funds come from a loan extended by the Inter-American Development Bank (IDB) for the project called Integrated Health Program II (PRIDES II) for a total amount of 170 million dollars. The clinic for Guayapa is mentioned in the legislative agreement, but it doesn't appear directly in the documents that the IDB keeps public, those same ones in which the loan does contemplate other projects that have not been executed either, such as the reconstruction of the Rosales hospital, the main hospital in the country, and the construction of the hospital in the northern zone of San Salvador.

According to what was agreed on June 8, 2018, by the deputies, in 2022, neither Antonio nor José nor the other patients of the minibus would have to make a two-hour trip with their catheters to Santa Ana, twice a week, to receive the dialysis they need to live. But what was written was not fulfilled.

Like the $400,000 fund that never became a clinic for Guayapa, others have been dedicated to kidney health care but have not been executed during the government of Nayib Bukele.

One of them is the "Adaptation and equipment of Teachers Polyclinic, Dialysis Therapy Unit and Pre-dialysis Clinic of the Salvadoran Institute of Teacher Welfare, in the face of the Covid-19 emergency, San Salvador". In 2021, they allocated 1,300,000 dollars in all that year. However, only 118,382.70 were invested; that is, only 9% of the fund. Despite the urgency of the fact that kidney patients are at greater risk from COVID-19. The situation from January to August 2022 —the only period for which data is available— leaves the execution at 193,087.59 dollars.

The other project with funds allocated but without execution is the one entitled "Construction, improvement, and equipment for the implementation of Dialysis Therapy Units in MINSAL prioritized hospitals nationwide." To get it done, the government had $1,009,286.56 for 2021. Of this, only $16,192.90 was invested, equivalent to 1.6% of the estimate. In 2022, this project appears with an assigned amount of $993,093.60. But, through August, the execution was just over $262,555, up 26%.

This program no longer appears in the 2023 budget. Instead, it appears as a project that is no longer national in scope but is limited only to the San Rafael hospital, in Santa Tecla, in the metropolitan area of San Salvador. There are six basic specialties, six subspecialties in internal medicine, four subspecialties in surgery, and two in pediatrics, but it does not have nephrology, which is where renal patients are treated. From nearly a million dollars, the amount for dialysis therapy dropped to $200,000.

In 2022, the Ministry of Health opened another line of expenses and allocated 500,000 dollars for "Equipment of Dialysis Therapy Units of MINSAL, nationwide." Until October, however, the reported execution was "zero."

Data request forms were sent through the Information and Response Office of the Ministry of Health. The first communication was sent on October 20th 2022. On December 1, the institution resolved to "deny access to the requested information." An interview was also requested with the Minister of Health, Francisco Alabí, but no response was received.

Traveling in the minibus

In the minibus, when Antonio laughs and José tells how his children help him to the point that they scold him if he tries to do something related to agriculture, Edith López is in the back seat. She is not a kidney patient, but she accompanies her husband to help him receive the therapy. He couldn't be part of this return trip to the community; he was admitted to the Santa Ana hospital. "He's seriously ill," she says, while showing on a cell phone with a broken screen the video of Santiago González receiving medical attention with an inflamed abdomen. He complains. Screams.

Edith says that Santiago was diagnosed with kidney disease five years ago, but he had to continue working on the land because, unlike José, he had no one to help him with the expenses. Thus, two years ago, he had a crisis while preparing a chemical for crops and fainted, just like José. Since then, he has been subject to renal replacement therapy. His constant relapses were because, for him, there was only room for treatment once a week. It is equivalent to saying that only once every seven days, his body can get rid of fluids.

This forces Santiago to drink very little water. While in optimal circumstances, organizations such as the National Academies of Sciences, Engineering, and Medicine of the United States recommend the consumption of more than two liters of water a day, Santiago cannot exceed half a glass. If he drinks more, he puts his life at risk from inflammation of his organs.

Chronic Kidney Disease has no cure; it doesn't set back either. In the early stages, it could be controlled with medicine and a healthy, adequate diet. At this stage, many farmers find it necessary to stop doing what they have always done for a living. Some can. Others, like Santiago, do not. Given the impossibility of stopping, deterioration accelerates. Farmers do not have any labor benefits or special health benefits for their risks or pensions for the disability that causes them; they have nothing to help them stop the loss of kidney function. At the final stage, they cannot access a fund to finance their replacement therapy either.

The medical indication is outpatient care at home, but it is declining. In 2019, the number of people on ambulatory peritoneal dialysis was 14,173. While by 2020, that figure dropped to 12,563.

The reduction, in addition to being unexplained, was more drastic for 2021, when only 4,667 people were reported in this category between January and September. Between 2019 and the nine months of 2021, the number of patients treated per month by the Ministry of Health on ambulatory peritoneal dialysis decreased by 44%.

The other treatment option is hemodialysis, which is done in a healthcare facility for the kind of equipment required. But the data for this case does not register significant variation, and in no way, could this option have absorbed the almost 10,000 people who disappeared from ambulatory dialysis records between 2019 and 2021. If there has not been a massive change in the mode of treatment, the outstanding question is: where are the patients? No one with advanced kidney disease can live without treatment.

Although the medical indications are directed towards dialysis care at home or near it, this does not apply to El Salvador or the situation of farmers. Obtaining supplies from the hospital to self-treat at home requires significant investment to build adequate space. José, despite the help of his children, cannot build, for the moment, a sterile room in his home, which is the main requirement of the program to receive supplies at home. Neither can Antonio or Santiago.

Home dialysis can help relieve the network, but it's not for everyone. The patient has to install washable floors and walls in a room, adequate ventilation, and drinking water, among others. In Guayapa, where the walls of the houses are made of adobe or sheet, the floors of soil and water are extracted from wells, a room like that costs around 900 dollars.

To make life easier for patients, the Mayor's Office used part of the Fund for Economic and Social Development (FODES) to build four sterile rooms in the homes of people affected by the disease in the Guayapa. But this is an investment that is not sustained for much; two of the people who benefited have already died, and, so far, no one else uses the facilities because they were built on private property.

Those who do manage to install the room do not have real supervision in the construction of the space for dialysis, since the health center does not make visits, and only asks that patients send photos. In Guayapa, there are dialysis rooms made of inadequate materials. This increases the possibility of infections that, in the case of these patients, can lead to death.

The need for treatment for chronic kidney disease presses on every level. Hospitals are overstretched to care for all patients requiring peritoneal dialysis and hemodialysis, especially in coastal parts of the country. By doing so, they saturate other levels of the health system.

Already in 2022, the Rosales hospital, located in San Salvador and the national reference hospital, stated in its Annual Operational Plan that "Kidney disease has shown an upward trend since 2017, with a moderate decrease in 2019; for 2021 an increase is identified".

In the Rosales, kidney disease was the leading cause of death in patients who spent more than 48 hours hospitalized. From January to August 2021, 127 deaths were registered from this cause, which surpassed others such as covid-19 (72) and malignant tumors (51).

For the Santa Ana hospital, which is Level II, where Antonio, José, and Santiago receive treatment, the increase in cases was sensitive since 2019 and was consolidated in the following two years. The authorities of this health center already indicated that the profile of the care provided was aimed at non-transmissible diseases, such as kidney disease. And they went a step further by recommending the creation of a specialized unit in the area of nephrology.

When the patient cannot cover all of their needs, hospitals such as Rosales or Santa Ana head faster to collapse. Peritoneal dialysis and hemodialysis treatments involve large investments of money in equipment and human resources to handle them.

For this reason, and because of the high cost of adapting their homes, the community of Guayapa insists that a kidney care clinic has to be built on its territory. "We even have the space, behind the Health Unit, which is very large and can be the place of the clinic," explains Pedro Landaverde, current president of the Community Development Association of Guayapa. The problem is that here we are dying like little animals; nobody says anything; they don't care."

When it seemed that the clinic was going to be built, several politicians and local authorities took advantage of the announcement to have a platform. "This is a commitment we had with the southern zone, it is a commitment we had with the Ahuachapanecos," Deputy Arturo Magaña of the department of Ahuachapán, to which Jujutla belongs, posted on the social network Twitter on June 8, 2018, when the $400,000 for the Guayapa clinic was approved.

And the regional director of health at the time, Dora María Vega, ratified the commitment by saying that "she did not rule out locating the clinic next to the Guayapa health unit." Six months later, he backtracked and said that support for patients didn't have to be "necessarily a clinic," it could also be "strengthening some area of a hospital."

Meanwhile, the Santa Ana hospital is still so full that it was unable to open one more space to Santiago so that he could remove the liquids not once, but twice a week. Whenever he can, Santiago tells his story about how difficult it is to sit down with a "body full of water".

Natural as death

In Jujutla, when a person dies at home, only funeral home employees arrive. There is no review by Legal Medicine or the Ministry of Health, despite it being a place with a high incidence of cases of kidney disease. In the absence of an expert opinion in the Mayor's Office, it is registered as a natural death.

In 2021, the year in which the funds destined to offer better treatment for kidney disease were not executed, the Mayor's Office of Jujutla registered 132 natural deaths. Some 80 % of these, according to Mayor Martínez, were people diagnosed with kidney disease. A fact that will not be studied to be part of the health statistics. Between January and September 2021, 588 deaths from kidney disease were reported only in hospitals on the public network, almost double the 305 registered in all of the year 2000.

Until September 2022, Jujutla registered another 101 deaths as a natural cause; of these, 36 were people residing in Guayapa, a community that, after a couple of turns, will receive a part of the PRIDES II loan of 170 million.

And yes, it will be invested in modifying the health unit, but not in the construction of a kidney care clinic. It will be used to build a booth for the deposit of common waste, according to the document "General conditions for strengthening to improve environmental management systems in 30 health facilities of the Ministry of Health of the departments of Sonsonate and Ahuachapán", which is part of Component I of the project to strengthening the ambulatory care network.

Santiago González was discharged, but the kidney disease did not recede, and can’t be cured. Edith clung to the hope that someone would intercede for her husband to receive one more therapy during the week because he was suffering. In just under two years, his catheter had to be changed eight times because of infections. They put it on the left and right of the neck, on the stomach, and the leg.

By phone, Santiago said he spent 18 days hospitalized because he was "seriously ill." He spent three to six hours connected to the machine, but since he could only do this process once a week, it was insufficient to avoid complications, such as swelling of the testicles and inability to walk. "I see people who with nine hours connected are better, if only that was what they gave me," he begged.

His need was so big that he reached the point of making desperate calculations: when he learned of the death of his friend Raúl, he called the hospital staff to ask if they could assign him the hours on dialysis of the deceased.

The answer was as usual. "That it is saturated, that there are no quotas, that others were waiting." Santiago didn't drink more than half a glass of water a day, but it didn't matter if he drank that or less. "I always have liquid left for the short time I spend connected and it accumulates, I arrive swollen," he used to say.

After several months of follow-ups, conversations, and text messaging with the author of this research, Santiago was no longer able to see this publication. He died on Monday, November 13, 2022. His death will not even be taken into account in the official statistics, because it occurred at home. The only thing that comforts Edith is knowing that he no longer suffers. "He can rest now."