Los índices de trabajo infantil han aumentado tras la cuarentena

Fotografías de Michael Huezo

Aquí hay un salón con guitarras que hace tiempo nadie toca. Hay otro con libros, que apenas han sido abiertos. Hay una cancha de fútbol rápido y también un área de juegos. Este solía ser un lugar seguro en donde por lo menos 200 niños de entre los 7 y los 18 años encontraban los alimentos que escaseaban en sus casas desde antes de la cuarentena por covid-19. Y, también, encontraban asistencia para resolver tareas. Este lugar es la casa hogar del programa Ángeles Descalzos y está ubicado cerca del Mercado Colón, en Santa Ana.

Lucy Luna es directora ejecutiva de la Asociación Salvadoreña Pro Salud Rural (ASAPROSAR), que es la institución que ha puesto en marcha el programa Ángeles Descalzos. El objetivo con el que nació fue el de aumentar las horas de los niños en la escuela y restar las de trabajo, y por trabajo se entiende el que es en ventas ambulantes, en las cocinas del mercado, en las verdulerías o cargando bultos. Este es un contexto que reúne una gran variedad de riesgos.

En el camino, las personas que laboran aquí no solo se dedicaron a reducir el trabajo infantil, también notaron que, aunque los niños pasaran más tiempo en las instituciones educativas, había otros factores que reducían su competitividad, uno de ellos: el acceso a alimentación. Por esto, se convirtieron en un espacio en donde se comía, se estudiaba, se hacía deporte y se platicaba. Aquí, con el salón de las guitarras y el de los libros, hay una sala de crisis. En este lugar, con asistencia de un profesional en psicología, muchos niños han contado sus traumas, sus peores experiencias con el abuso, el maltrato o la violencia.

En medio de una zona de comercio, aquí, desde el portón metálico hacia adentro, los niños encontraban lo básico para poder ejercer su infancia. Pero esto cambió con la pandemia.

Luna cuenta en esta entrevista cómo la institución ha intentado adaptar sus funciones a la dinámica eminentemente virtual de la pandemia. Pero hay servicios en los que la presencia era una parte fundamental en la correcta ejecución. Los niños, cree Luna, están ahora expuestos al virus y a los riesgos sociales. Ha habido, para ellos, un retroceso importante en la calidad de vida. Este es un factor que, para Luna, no se está tomando en cuenta al elaborar las políticas a seguir.

¿Cómo era un día normal en Ángeles Descalzos antes de la pandemia?

Estaba abierto de 7:30 de la mañana a 5:30 de la tarde. Teníamos dos turnos, para poder atender a los que estudiaban en la mañana y a los que estudiaban en la tarde. Nosotros los recibíamos, dejaban sus bolsones, les dábamos su refrigerio nutritivo, porque muchos no tienen acceso a alimentos en sus casas, y, después de eso, se distribuían en las diferentes clases de refuerzo. Unos iban a liderazgo, otros con el psicólogo, y algunos más se iban a la parte deportiva. Cada uno de ellos, de acuerdo a su propio contexto y necesidad, se atendía en una sección distinta. Había recesos entre las clases. Y les dábamos almuerzo para que todos se fueran a sus clases, en la escuela o aquí, con la pancita llena.

¿Qué servicios tenían disponibles?

Trabajamos en cuatro áreas de atención. Una es la parte psicoemocional del niño, damos atención al trauma, esto es muy importante por las condiciones de trabajo ellos tienen y por las condiciones de violencia a las que deben enfrentarse en el mercado y en sus casas. También atendemos la parte educativa, los ayudamos a nivelarse para que no deserten de la escuela, se mantengan ahí y disminuyan las horas laborales. A la vez, trabajamos la parte artística y deportiva, con una cancha de fútbol y un programa de magia. Y la cuarta área es la parte social, que trabajamos con la familia, con los vendedores.

Nuestras educadoras encuentran la manera para trabajar con ellas a la hora que se pueda, les dan las 10, 11 de la noche resolviendo tareas. Porque las mamás no tienen cómo hacerlo. Esta es una realidad en las familias en las que los niveles educativos son bajos. No pueden, aunque quieran, ayudar a sus hijos.

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¿Qué pasó aquí ese día de marzo cuando ya no pudieron recibir a los niños?

Nos tomó de sorpresa, como a todos. Nos llevó un tiempo procesar la situación. Se nos ocurrió comenzar por hacer un directorio para sondear varias cosas. Primero, pensamos que a lo que le teníamos que poner atención era el tema educativo, necesitábamos saber si todos nuestros niños iban a poder tener relación con sus maestros. La otra prioridad, que iba casi a la par, era verificar que estuvieran comiendo, porque muchas familias ya estaban desabastecidas desde antes de que llegara la cuarentena. Y, luego, había que ver qué se podía hacer con el tema económico, teníamos que conocer qué había pasado con los negocios. Si las familias estaban trabajando, de qué estaban trabajando. Así, con esa información, empezamos a discutir estrategias para no perder la relación con los niños y niñas.

¿Tienen los niños suficientes recursos para sacar adelante las actividades escolares?

No, la verdad es que la mayoría de personas con las que nosotros trabajamos sacan menos de un dólar de ganancia al día. Y, generalmente, tienen que vivir casi de prestar dinero o de prestar verduras para venderlas. No tienen, nunca han tenido, lo suficiente para poder comer. Algunas madres nos empezaron a llamar desesperadas para decirnos que no tenían alimentos y que lo que estaban haciendo era dormir a sus hijos temprano para que no les pidieran comida. Otras solo hacían un tiempo. Unas más salían a buscar basura. En ese primer momento, vivimos una situación realmente caótica. Ahora sabemos que el 80 % de las familias de nuestros niños y niñas se quedó sin empleo, sin fuente de ingresos. Sin ningún recurso y sin alimentación, esta es la situación en la que estamos con ellos.

¿Cómo procedieron en ese primer momento de crisis?

Lo primero fue darle soporte al equipo en la parte emocional, porque ninguno estaba con la fuerza suficiente para saber qué hacer ante lo que se nos venía. Después, comenzamos a hablar con las mamás y los papás. Así, nos dimos cuenta de que no, de que el tema era alimentos, que los niños y las niñas prácticamente estaban ya desabastecidos. Pasaban hambre. Y le teníamos que dar prioridad a esto. Necesitábamos hacer asequibles los alimentos. Ya con esto en mente, trabajamos en conseguir alimentos que sirvieran por lo menos para 40 días y fueran nutritivos y adecuados para los niños y las niñas. Cuando los tuvimos, empezamos a gestionar y a citar a las familias de cinco en cinco para entregar los paquetes.

¿Y qué pasaba, mientras, con la continuidad escolar?

Una vez tuvimos hecho lo de los alimentos, pasamos al tema educativo. Comenzamos a averiguar la situación de las escuelas, la situación de acceso a Internet, de acceso a teléfonos. Nos dimos cuenta de que el 70 % de niños y niñas no tenía acceso, no tenía teléfonos inteligentes y que, entonces, tenía que pagar de uno a tres dólares para poder conectarse, para, así, ver las guías que les estaban dejando. Eso para verlas, resolverlas era otra cosa. Aquí, tenemos que partir de que las familias de nuestra zona no tienen cómo alcanzar el sistema educativo. Nosotros tampoco hallábamos la manera de ayudarles a todos en eso. Entonces, se nos ocurrió comenzar a facilitarles las guías, nos rebuscamos para entregarlas impresas. Hicimos una pequeña oficina en la casa de una compañera educadora que vivía en la zona y con ella armamos una forma de darles las guías a las familias para que las tuvieran. Ya la asesoría para llenarlas la dimos en línea a quienes podían y presencial para los que no tenían otra forma, otro recurso. Estas fueron las dos medidas que tomamos y que mantenemos, por el momento.

Ahora bien, algo que nos ha costado mucho es indagar cómo están en la parte emocional los niños y las niñas. No hemos tenido comunicación directa, en muchos casos, solo hablamos con las mamás y lo que ellas nos han ido contando nos preocupa muchísimo.

 

¿Qué es lo que intuyen que pasa a ese nivel?

Las mamás, con la cuarentena, se hicieron más conscientes de que la situación económica desesperante las estaba llevando a una situación de estrés. Esto las tenía completamente agotadas. Además, se hizo más evidente que ellas no tienen la paciencia o los conocimientos suficientes para estar ayudándoles a sus hijos. Esto ha estado llevando a que caigan en el maltrato y la violencia. Y esto no es solo de madres o padres a hijos. Es, incluso, de niños hacia niños. Y fue así como decidimos, poco a poco, retomar el programa de atención psicológica.

Fotografías de Michael Huezo

¿Qué tipo de manifestaciones de estrés se ve en los niños?

Problemas para dormir, ansiedad e hiperactividad es lo que se puede ver en los niños. Pero, empieza en las mujeres. Los problemas en ellas están agudizados porque son responsables de llevar seguridad y alimento a sus hijos. Cuando todo se cerró, ellas ya no pudieron ni ir a buscar botellas o material para reciclar y estaban sin ningún ingreso. Los niños estaban encerrados y eso generaba mucha tensión. Eso pasaba durante la cuarentena. Ahora que hay reapertura económica, aparece el otro extremo del problema, que es que, como no hay escuelas presenciales, entonces los niños y las niñas pueden estar, más que todo, en la calle. Este es un gran riesgo, porque ahí hay acoso, abuso sexual y otros peligros que se agudizan.

Con la reapertura económica, además, muchos de los padres y madres se han traído a sus hijos a trabajar. No hemos podido sacar números, porque no hemos podido hablar con ellos directamente. Pero hay madres que nos han dicho que continuar estudiando representa mucho gasto y, entonces, mejor se los han llevado a todos a trabajar. Uno con los dulces, otro vende los chocolates y la mamá con el canasto.

¿Han aumentado la violencia intrafamiliar y el trabajo infantil?

El problema es que hablar con los niños y niñas para preguntarles a ellos cómo se sienten ha sido difícil, pero hablando con las mamás, ellas nos dicen que si el niño les pedía que le ayudaran con la tarea, y ellas realmente no tenían cómo ayudarles, lo que hacían era castigarlo, pegarle. Hay mamás que no han estudiado suficientes años como para poder ayudar a resolver las guías. Y los niños necesitan esa asesoría. Por esto las mamás nos han buscado para decirnos que intervengamos, porque la situación es tan caótica que ha habido casos en los niños les pegan a sus hermanos, se pelean por material escolar, porque no es suficiente. Tuvimos el caso de un niño que amenazó a su hermano con un cuchillo. La mamá nos vino a buscar para que le ayudáramos a manejarlo. La realidad de las mujeres aquí es muy difícil. Trabajan todo el día y llegan a las 7, 8, 9 de la noche a casa y, a esa hora, tienen que sentarse a hacer tarea y, a esa hora, se dan cuenta de que no tienen el material, o no tienen la habilidad y se sienten frustradas. Nuestras educadoras encuentran la manera para trabajar con ellas a la hora que se pueda, les dan las 10, 11 de la noche resolviendo tareas. Porque las mamás no tienen cómo hacerlo. Esta es una realidad en las familias en las que los niveles educativos son bajos. No pueden, aunque quieran, ayudar a sus hijos.

Ahora que hay reapertura económica, aparece el otro extremo del problema, que es que, como no hay escuelas presenciales, entonces los niños y las niñas pueden estar, más que todo, en la calle. Este es un gran riesgo, porque ahí hay acoso, abuso sexual y otros peligros que se agudizan.

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Este era un lugar seguro para niños y niñas, ¿con qué se está sustituyendo lo que encontraban aquí?

Esta es una de las preocupaciones más grandes que tenemos. Estamos ahorita atados de manos, hay una regulación que dice que no podemos atender niños, porque eso es causa hasta de multa y por eso hemos tomado medidas. Sabemos que nos necesitan. Así que hacemos atenciones en grupos pequeños, hacemos intervención casa por casa, se ha cambiado todo el protocolo de atención. Sabemos que este espacio significa seguridad para los niños y las niñas y, ahorita, no lo tienen. No tienen escuela ni este espacio y están más vulnerables que antes. Y eso lo vemos en que los índices de trabajo infantil han aumentado tras la cuarentena. Este programa nació, de hecho, para ofrecerles una alternativa y que bajaran sus horas laborales y como ahorita, prácticamente, no tienen nada, han tenido que regresar a la venta. Otros están en sus casas encerrados con sus agresores y otros, que nos hemos dado cuenta, andan vagando, en las calles y ahí está el peligro de que los secuestren o de sufrir agresión sexual. Todos estos riesgos son más reales para ellos que viven aquí, esta es una de las cosas en las que estamos queriendo sensibilizar a los actores. Los niños no tienen un espacio seguro en este momento, es muy preocupante para nosotros.

Una buena parte de los delitos sexuales se comete en casa de la víctima. ¿Han tenido indicios de que este delito haya afectado más a los niños y niñas del programa?

Estamos dándole énfasis a las niñas en salud sexual reproductiva. Estamos repartiendo cajas lúdicas para que las niñas puedan tener información y puedan tomar una decisión acertada. Una caja lúdica es en la que viene material, guías de trabajo, juegos, material para que ellas hagan su propia guía en salud sexual reproductiva. Sabemos que están vulnerables. Es por ello que queremos que tomen decisiones asertivas. Queremos que sepan identificar zonas de protección. Por ejemplo, hemos establecido claves, códigos a la hora de hablar para que ellas puedan decirle a sus maestros o a la psicóloga que están cerca del agresor, que su padrastro las viola o las molesta, sin que ellos sepan. Estamos buscando la manera de que nos puedan decir a nosotros la situación, pero sin exponerse. Sabemos de abusos que se han dado en el marco de conseguir materiales para continuar la educación, como cuando el vecino le dice que puede usar la computadora y esta persona aprovecha la ocasión para el abuso.

Fotografías de Michael Huezo

Ante una eventual recuperación, ¿en qué aspecto se van a enfocar?

Lo que más les ha afectado a los niños y niñas de aquí es el trabajo infantil. Con la cuarentena, las familias se quedaron sin trabajo. Ahora que ya se reactivó esto, se han tirado a la calle y se han traído a sus hijos hijas para vender, porque la mayoría de ellos tiene préstamos y lo que hacen en el día no les genera lo suficiente para cumplir con esas obligaciones y para pagar todo lo demás. El trabajo, de esta manera, hace crecer la vulnerabilidad en que los niños se encuentran.

De aquí a diciembre, ¿cuál es el plan? ¿Qué piensan ejecutar?

La misión uno es el tema educativo. Queremos que terminen su año escolar y vamos a seguir trabajando en hacerles asequibles las guías de estudio, en darles los materiales que necesitan. Vamos a seguir trabajando en darles las canastas alimenticias a los que se quedaron sin negocio y sin nada. Y, para ellos, estamos trabajando un programa de acceso a capital. Para que puedan mejorar en el tema de deuda. Y lo otro en lo que queremos ayudar es cómo pueden diversificar sus negocios, esto es lo más difícil. El sector informal no ha sido tomado en cuenta y queremos respaldar, sobre todo a las mujeres, para que puedan tener capital, pagar sus deudas y hacer negocios diferentes.

“Yo andaba más protección que el médico que atendió a mi papi”

Fotografía LPG / Archivo

Nadie le tomó la temperatura ni le entregó gel alcohol para que se limpiara. Menos encontró una bandeja desinfectante para los zapatos. A diferencia de lo que sucede en un supermercado, en una sucursal bancaria o en casi cualquier oficina, ingresar al área de emergencias del Hospital Médico Quirúrgico del Instituto salvadoreño del Seguro Social (ISSS), en San Salvador, no supuso mayor protocolo el día en que ella llegó con su padre enfermo.

Ella conocía el estado de salud de su padre. Delicado, sí. Desde marzo, él se quejaba de un dolor en el pecho por el que ya le habían sacado placas de tórax sin que en estas apareciera algo que llamara la atención. El dolor siguió y se mezcló con la cuarentena, la medida impuesta para contener el contagio de covid-19. En el encierro, el estado emocional de este hombre de tercera edad decayó. Y el físico también se fue complicando más de lo previsto, porque, aunque la intención que la institución comunicó desde el inicio fue la de garantizar las consultas a pacientes crónicos y los exámenes a quienes tuvieran procesos impostergables, en la práctica no se cumplió.

El padre, de 84 años y quien el año pasado se sometió a una cirugía cardiovascular, perdió citas con cardiólogo, con cirujana vascular y con un urólogo. También perdió exámenes que ya estaban pautados y que pudieron ayudar a afinar el diagnóstico y el tratamiento para evitar complicaciones. Por la suspensión de las atenciones programadas, “se prevé una reducción gradual y sistemática en el volumen de atenciones brindadas”, anuncia el ISSS en su informe de coyuntura del mes de junio. Todas las prestaciones de servicios marcan una variación negativa. Las consultas externas se redujeron en un 19 %, las odontológicas en un 32 % y las intervenciones quirúrgicas en un 11 %, por ejemplo.

El ISSS brinda cobertura en salud al 27 % de la población salvadoreña, que es la que cuenta con un empleo, es beneficiada por lazos de afinidad o consanguinidad, o está pensionada. Este es un servicio médico prepagado por el que se descuenta cada mes tanto al patrón como al trabajador. En plena pandemia, cuando la cuarentena mantuvo en suspenso la mayoría de actividades productivas durante 3 meses –y algunas siguen cerradas-, los números de la institución han comenzaron a bajar. Si se comparan los reportes solo del sector empleador privado de enero y de abril, la cantidad de patronos cayó en un 13 % y la de trabajadores en un 8 %. En cuatro meses, han dejado de cotizar 61,572 personas en el sector privado.

Autofinanciado. En conferencia de prensa, el Sindicato de Médicos del ISSS denunció que el personal ha tenido que comprar su propio equipo de protección durante la emergencia por covid-19.

“La reducción de las actividades productivas está afectando la capacidad de pago de los empleadores y, por tanto, es lógico esperar, en los próximos meses, una caída en la presentación de planillas al ISSS y, sobre todo, en el pago efectivo de las cotizaciones con la consecuente pérdida de ingresos para el Instituto; situación que se puede ver potenciada por la pérdida de empleos en el sector privado, producto de la contracción económica nacional e internacional”, se lee en el Informe de Coyuntura que el ISSS tiene actualizado hasta junio.

El ISSS representa el 40% del gasto público en salud. En pandemia, el ISSS recibe un doble impacto. Por un lado, está obligado a responder con más recursos humanos, de infraestructura, y de servicios de emergencia ante una demanda desbordada. Por el otro, las medidas para evitar el cotagio de covid-19 mantienen suspendidas o mermadas las actividades comerciales y la industria y, con esto, cada mes percibe menos recursos. El agujero financiero que se está formando solo se ensancha.

La cantidad de dinero de las cotizaciones del sector privado, por ejemplo, bajó en un 12 % del primero al cuarto mes del año. Mientras en enero fue de $33 millones, en abril la cantidad de ingresos por cotizaciones fue de $29 millones. Son cuatro millones de dólares menos, sin contar con que, en mayo y junio, la demanda por servicios médicos escaló. El colapso que la pandemia va provocando en el ISSS se deja ver en los reportes financieros, pero se siente en los pasillos de los hospitales, como el emblemático Médico Quirúrgico (MQ), ubicado en la capital, donde a la que llamaremos acá Teresa llegó en busca de atención para su padre.

Teresa llegó a la emergencia con un fajo de exámenes bajo el brazo. Ya llevaba cinco días de rebotar por los consultorios privados de cardiólogo y nefrólogo. Y ya había dejado una buena cantidad de dinero en todas esas pruebas que indicaban que su padre tenía un cuadro de anemia, una alteración en la capacidad filtradora de los riñones y sangre oculta en heces. El viernes 25 de junio, lo llevó al consultorio privado de la cirujana vascular y, ante los resultados, la especialista fue categórica: necesitaba ser ingresado en un hospital y necesitaba, con urgencia, una transfusión sanguínea.

En El Salvador, el gasto nacional en salud representa un 7 % del Producto Interno Bruto. Es decir, alcanza los $1,937 millones de dólares al año. De esta cantidad, un 67 % es gasto público y un 33 % es gasto privado. Dentro del gasto privado, aparece la participación de las empresas comerciales de seguros médicos y también el Gasto de Bolsillo de los Hogares en Salud (GBHS). Este último es el que las personas hacen de forma directa “cuando pagan por atenciones en salud (honorarios médicos y servicios de hospitalización; compra de medicamentos, pago por servicios de apoyo diagnóstico y de laboratorio y otro gasto directo relacionado con servicios de salud)”, de acuerdo con el Informe de Memoria de Labores del Ministerio de Salud del año pasado.

“Esta variable (GBHS) es de suma importancia –dice el documento-, porque revela cuánto del financiamiento en salud es soportado por los hogares en un período determinado y en la que su importancia relativa está directamente asociada al grado de equidad y protección financiera en salud de la población”. Esta es la cuenta en la que se incluye todo el gasto que Teresa hizo en exámenes y en consultorios privados en un intento por evitar ir hasta uno de los colapsados hospitales. Esta es la cuenta que la pandemia ya está haciendo subir ante la incapacidad del sistema de salud público de absorber la demanda. El informe de 2019 sitúa en $523 millones este gasto que sale de los bolsillos de un privilegiado grupo que tienen cómo hacer frente.

La sugerencia que la especialista vascular le hizo a Teresa fue la de buscar un centro asistencial que contara con máquinas de diálisis, un proceso que sirve para hacer la labor de limpieza cuando los riñones presentan daño. Además, recomendó otra placa de tórax, ya que, escuchaba ruido en los pulmones y podía ser otra complicación del cuadro que ya llevaba. “Nosotros evaluamos seguir en lo privado, pero, realmente, escapaba de nuestra capacidad económica, era un gasto bárbaro”, cuenta Teresa.

Sin recursos. Los tiempos de espera por una camilla se han alargado. Una usuaria esperó 12 horas para que hubiera cupo para ingresar a su padre.

No sin antes evaluar el riesgo, Teresa y su familia decidieron seguir la instrucción e ir al hospital Médico Quirúrgico. “Yo me llevé a mi papi protegido con todo lo que teníamos. A ellos (padre y madre) nosotros siempre los cuidamos, no salían, y para entrar a la casa de ellos nos desinfectábamos. Ir a los hospital fue una decisión que tomamos porque ya no había más opción, necesitaba ayuda que solo ahí le podían dar”, cuenta Teresa.

Teresa y su padre llegaron al MQ a las 2:30 de la tarde del viernes 26 de junio. Ahí, le recibieron los papeles, revisaron los exámenes, y el personal médico evaluó la carta con las instrucciones enviadas por la cirujana vascular que remitía al paciente. Pero había muy poco por hacer. Ante la falta de cupo en el centro asistencial, la única opción era esperar.

Teresa acomodó a su padre en una silla de ruedas que le proporcionaron. Desde donde estaba, podía ver a la gente a la que el personal médico acomodaba bajo toldos, a la espera, como ellos, pero con signos de enfermedad respiratoria. Desde ese lugar, pudo ver que el vigilante de la emergencia recibía a la gente de las ambulancias, a los enfermos, a los familiares de los que no podía valerse solos y a todos los atendía apenas protegido con una mascarilla.

Ella misma entró y salió varias veces de Emergencias para preguntar si había cupo, si alguien podía evaluar a su padre, si podían darle algo mejor que una silla de ruedas a un hombre enfermo de más de 80 años. En todas esas veces, nunca le pidieron higienizarse. No había cómo ni con qué. Adentro, relata Teresa, la gente usaba –usa– las mascarillas que puede, unos van con tela. “Y ahí a nadie le andan ofreciendo otra mascarilla o algún otro recurso para protegerse o proteger a los demás”, agrega.

Desde las 2:30 hasta las 6:30 de la tarde, el padre de Teresa estuvo en una silla de metal que tenía el respaldo roto. Si se acostó un rato, fue porque el hermano de Teresa llegó con el carro y, en el parqueo, pudieron colocarlo ahí para que descansara. Alrededor de ellos, había gente con mucho menos recursos, igual de vulnerable, emocionalmente golpeada y en una espera incierta.

En el Plan Anual de Trabajo 2020, una de las metas del ISSS era atender las emergencias en 15 minutos. Y también mejorar la satisfacción de los usuarios para llevarla más allá de una calificación de 7.5. Para cuando el documento fue redactado y publicado, la pandemia de covid-19 era solo un murmullo lejano. Teresa y su padre pasaron 12 horas esperando que hubiera una cama libre. En ese transcurso y ante la insistencia de ella, un médico le ofreció dejarlo en un carro (camilla), en el pasillo, pero le advirtió que era “área covid” y que estaría expuesto. Teresa no aceptó.

Para ese momento, Teresa había detectado una serie de riesgos de contagio en la forma en la que se maneja el flujo de pacientes en este hospital. Y de todas esas grietas, una le llamó mucho la atención. “Yo andaba más protección que el médico que atendió a mi papi“. Señala que el hecho de que diagnóstico con el que entró su padre no era covid-19, no reducía la posibilidad de contagio en un ambiente en el que no se miraba rigor ni separación de áreas.

La cantidad de dinero de las cotizaciones del sector privado, por ejemplo, bajó en un 12 % del primero al cuarto mes del año. Mientras en enero fue de $33 millones, en abril la cantidad de ingresos por cotizaciones fue de $29 millones. Son cuatro millones de dólares menos, sin contar con que, en mayo y junio, la demanda por servicios médicos escaló. El colapso que la pandemia va provocando en el ISSS se deja ver en los reportes financieros, pero se siente en los pasillos de los hospitales, como el emblemático Médico Quirúrgico (MQ).

***

El 14 de julio, el Sindicato de Médicos del ISSS (SIMETRISS) hizo una conferencia en la que exigió mejores condiciones laborales para el personal médico de primera línea y, sobre todo, señaló la falta de equipo de protección. Un vocero leyó una serie de reclamos urgentes, entre los que citó la erogación de fondos y salida de insumos que se necesitan para compra de equipo de protección, medicamentos y para más contratación de personal para primera línea. Denunció, además los “errores en la planificación, tanto en la determinación de espacios geográficos adecuados, como de algoritmos de atención para los pacientes sospechosos o confirmados de la enfermedad afectando el derecho a la salud de todos los usuarios y el derecho laboral de los trabajadores”.

El 14 de julio es el día del médico. El vocero, con una mascarilla blanca y acuerpado por otros colegas, leyó en el mismo tono que los “trámites engorrosos para la adquisición y distribución de los equipos de protección personal ha obligado a que sea el trabajador el que asuma el costo económico para obtenerlos”. El vigilante y el médico a quienes Teresa vio mal protegidos en medio de un ambiente desordenado muy probablemente usaban mascarillas compradas por ellos mismos. Lo mismo quienes estaban en la mesa, al frente de la conferencia.

Después de varias horas, ya entrada la madrugada, el padre de Teresa fue ingresado. “Yo fui con él, desinfecté la cama, lo arrope y lo dejé acostado. Vi que una enfermera lo atendió y le colocó un catéter y le pasó suero. Lo dejé ingresado, acostadito“, explica ella. “Al día siguiente, nos llamaron para decirnos que había fallecido”. No pasó ingresado ni 24 horas.

Y, entonces, empezó otro proceso que no se esperaban ni Teresa ni su familia. El hospital registró como causa de la muerte el covid-19. No hubo prueba. A Teresa se limitaron a mostrarle una placa de tórax como muestra de que había indicios de neumonía. “Mi papá tenía anemia y lo que necesitaba era una transfusión, estaba hinchado,pero me di cuenta de que ahí nunca tuvieron la mínima intención de hacerle esa transfusión de sanguínea que urgía y menos de facilitarle diálisis”, indica.

Teresa hizo reclamos, pero la causa de muerte no cambió. Para la institución, el hombre de 84 años que ingresó un viernes por la tarde en busca de una transfusión de sangre y una diálisis murió el sábado a medio día por covid-19. Su cadáver, pese a esta clasificación, se mantuvo por más de cinco horas en la misma cama hospitalaria en la que Teresa lo había arropado horas antes. “Yo pasé, entré hasta ahí y lo vi, estaba solo cubierto con una sábana; y, ahí, había otros pacientes a la par”, cuenta sin esconder la emoción que le provoca el recuerdo.

Ingresos. El desempleo en el sector privado significa que el ISSS recibe menos dinero. Entre enero y abril, más de 61 mil personas dejaron de cotizar.

La tasa de mortalidad del ISSS ha aumentado. El primer semestre del año pasado, la general fue de 3.3 por cada 100 mil egresos. Mientras que en este año, en el mismo periodo, fue de 3.8. Cuando se ve solo a nivel metropolitano, que abarca el hospital MQ, pasó de 4.2, en 2019, a 4.6 por cada 100 mil egresos en 2020.

A Teresa no le entregaron el cadáver de su padre ese sábado. Tampoco el domingo, ni el lunes, ni el martes. Fue hasta el miércoles que el personal del Ministerio de Salud y de la funeraria coincidieron para ejecutar el proceso bajo “protocolo covid“. En medio, Teresa conoció a otras familias con una historia plagada de carencias, como la de ella y su padre.

Que la causa de muerte haya sido covid-19 no ha implicado que se busque nexos epidemiológicos entre la familia. Teresa señala que no descarta abrir un proceso legal por la forma en la que se trató el caso de su padre: “El responsable de que todo en el hospital se haya contaminado es el Estado, el responsable de que no haya protocolos y de que el personal no tenga cómo protegerse es el Estado; esto no es por mi papi, que fue un hombre maravilloso y que ya descansa, es por todas las demás familias que no merecen que les pase los mismo que a nosotros”.

Las casas a la orilla del río

Fotografías de Érica Chávez

Juan Antonio Martínez solía trabajar como mesero. Recibía un sueldo y propinas por servir platos de mariscos o baldes con cervezas en un restaurante. Así, pudo comprar una cocina, un camarote y un par de camas. Cada mañana, durante los últimos seis años, se levantó de una de esas camas y estuvo a menos de un metro de la borda. Entre uno y otro, apenas una lámina.

Tras ese muro, pasa el río Chilama que, a unos cuantos metros más adelante, se hace mar. Desde donde está parado Juan Antonio se alcanza a ver bien cómo ese mar recibe al río. “Hasta allá fueron a parar mis cosas”, cuenta. Juan Antonio, a sus 53 años, ya no tiene camas, ropa, trastos y tampoco tiene rancho. En las primeras horas del domingo 31 de mayo, el río creció tanto, que se llevó todo. Ahora, cuando ya han pasado cuatro días desde que la lluvia cesó, se sienta sobre un pedazo de silla plástica y desde ahí mira el espacio lleno de lodo y pertrechos donde antes estaba su casa. Ahí, asomando entre escombros y lodo, está un colchón celeste, húmedo, revolcado. Cree que es donde dormía.

Juan es una de esas personas de las que habló la ministra de Vivienda, Michelle Sol, durante una cadena nacional del jueves 4 de junio en la que el gobierno dio cuenta de la emergencia provocada, en un primer momento, por la tormenta Amanda. “La causa es por vivir en la orilla del río. La misma necesidad ha hecho que la gente se asiente en lugares de riesgo. No ha habido una institución que les detenga, ni que les dé soluciones a viviendas dignas”, dijo ella ante el gabinete de gobierno.

Y sí, Juan llegó aquí sin alternativa. Ya no podía seguir pagando alquiler. Además, ¿en qué casa caben siete adultos y tres niños que se pueda pagar con sueldos de meseros, pescadores o comerciantes en pequeño? En El Salvador, un 42.6 por ciento de hogares presenta hacinamiento.

Para la familia de Juan, significó una gran oportunidad venir a levantar con palos y láminas un rancho aquí, a la comunidad que lleva un nombre bien plano que suena a riesgo: Río Mar. Está habitada por 105 familias que, en el municipio de La Libertad, viven entre la ribera del Chilama y playa Punta Roca, que suele llenarse de surfistas. Entre el turismo en modo Instagram y la pobreza multidimensional hay solo unos cuantos metros.

La Fundación Salvadoreña de Desarrollo y Vivienda Minima (FUNDASAL) desarrolló un estudio en 32 ciudades salvadoreñas y halló, en 2007, que ya había en ellas 3,000 asentamientos entre mesones, tugurios y lotificaciones irregulares. Caludia Blanco, directora ejecutiva de esta institución, señala que, ahora, ya son más y están habitados por más gente. “En estos asentamientos hay grandes carencias de hábitat y unas violaciones a los derechos humanos muy graves. No hay agua, no hay calles, la gente no tiene dónde ir al baño, no se tiene cómo dejar ir el agua”, explica. La densidad de estos asentamientos aumenta cuando los hijos forman sus hogares y, por razones económicas o por limitaciones que impone la violencia social, no se pueden mudar. Así fue como Juan llegó a tener una familia de 10.

Esa noche del 4 de junio, durante la cadena, la ministra Sol habló de 1,200 casas dañadas y de 365 que ya se daban por pérdida total debido al desborde de los ríos, los deslaves, las inundaciones. Durante la tormenta, 27 personas murieron. A dos semanas de aquello, la directora de Fundasal, la arquitecta Blanco, asegura que, con base en información recibida de las directivas comunales, tienen datos de 8,500 familias cuyas viviendas registraron severos daños debido a la tormenta.

En Río Mar, da gracias a Dios Juan, no hubo víctimas. Acusa, sin embargo, un casi milagro. Porque nadie sabía, en estas casas de lámina en medio de río y de mar, que venía una tormenta que los tomaría de frente, por El Pacífico. “Un par de horas que nos hubieran dado y alcanzamos a sacar lo más importante, pero ni eso”, dice Juan frente a un rimero de seis láminas que cuida como tesoro. Esto quedó de su casa. “A chatarrera las voy a llevar, a ver si me dan algo”. Las láminas están torcidas y oxidadas. Pero Juan se aferra a ellas, porque, de todos modos, no tiene nada en el bolsillo.

Juan no cree que la suya sea una pérdida que esté en las estadísticas del gobierno. Porque ahí, se habla de casas, y el de él era un rancho. Uno que levantó sobre un terreno del que no tiene título de propiedad y en el que se quedó, en 2014, apenas amparado por un papel que le dio la alcaldía, mismo que ya no tiene.

La arquitecta Blanco cita un informe de Habitat para la Humanidad para asegurar que: “El 80 por ciento de la población tiene alguna violación del derecho humano a la vivienda, ya sea falta de agua, piso, techo, paredes, derecho de propiedad de la tierra, o riesgo alto de desastre por fenómeno natural”.

En línea recta de donde está Juan, unos pasos más adelante, como rumbo a donde el río se hace mar, Guadalupe Castillo también busca rescatar lo que quedó. Ella tenía una tienda, también de lámina, y también a la ribera del río. Ahora lava unos envases de soda de vidrio y los pone a secar sobre la borda. Le pueden servir, dice. Así, de entre el lodo, también sacó sus zapatos, alguna ropa, botellas con limonada. Todo lo ha ido guardando en guacales y les ha colocado encima telas para resguardarlo. Aquí no se puede dar nada por perdido, ni aunque haya sido desenterrado.

Guadalupe habla frente a una montaña de lodo de metro de alto. Es lo que ha sacado de su casa-tienda. Y falta, adentro todavía hay partes anegadas. A ella, no se le cayeron las láminas laterales ni las de arriba. Es, cree, de las 1,200 casas dañadas que mencionaba el gobierno en la cadena. Pero perdió una inversión importante en productos. Con primor, muestra unos sobres de capuchino instantáneo que pudo rescatar, quedaron, cuenta, colgados de ganchos en la parte más alta. “Vienen para dar a 50 centavos, diez se les gana, apenas”.

La vulnerabilidad es alta en un país en donde el 29 por ciento de hogares está en pobreza multidimensional, de acuerdo con la Encuesta de Hogares y Propósitos Múltiples (EHPM) de 2019. Este método se basa en el uso de 20 indicadores que, a su vez, se dividen en cinco dimensiones, una de ellas es la condición de la vivienda. Acá, de cada 100 hogares, en 20 los materiales del suelo y las paredes son inadecuados. Son madera, paja, palma, cartón material de desecho o, como en el caso de Guadalupe y Juan: pura lámina metálica.

Consecuencias. De acuerdo con datos de FUNDASAL, los hogares de 8,500 familias resultaron dañados por las tormetas Amanda y Cristóbal.

Guadalupe está decepcionada. Se tardó por lo menos ocho meses en construir un baño de letrina domiciliar. De lo que iba sacando de la tienda, compraba una bolsa de cemento, un día. Y, al otro, juntaba para arena. A veces, le abonaba al albañil. Así, terminó de pagar unos $200 por la obra. “Pero esta vez, ya rebalsó todo. Está lleno de agua, menos mal no tenía mucho uso, no porque a saber cómo estuviera todo esto”, lamenta.

Ella tiene 58 años de edad y 20 años de vivir en Río Mar. Esta es la tercera vez que pierde todo. Mientras muestra los zapatitos enlodados de su nieta de menos de un año, afirma que, esta vez, si pudiera, se iría. Pero, por el momento, no tiene para pagar el préstamo con el que trabaja, no tiene cocina, no tiene ni baño y hace intentos por recuperar un ropero de madera hinchada por la inundación.

A pesar de los antecedes de desbordamiento del Chilama y de vulnerabilidad de las viviendas en Río Mar, no hubo alerta temprana. La evacuación en la zona más cercana al río, donde viven Juan y Guadalupe, se hizo entre las 4 y las 5 de la mañana y fue acompañada por funcionarios de Protección Civil y de la junta directiva de la comunidad. Se hizo hasta ese momento, incluso cuando ya había llovido por más de 12 horas de forma constante.

Río Mar no fue la única en la zona en ser evacuada así, a las prisas, con gente huyendo solo con la ropa puesta. En la carretera El Litoral, más adelante en ruta al municipio Rosario de Mora, está la comunidad Jute Esperanza. Ahí, Emelia Salmerón pasa pegada al celular. Ella es enlace comunitario con Protección Civil, con la Alcaldía de La Libertad y con entidades sanitarias. “Yo le llamé a mi capitán en la noche y mandó una cuadrilla, pero, al llegar, ellos dijeron que no iban a evacuar todavía porque el río no se había desbordado”, explica frente a la maquinaria pesada que, ya bajo un brillante sol, extrae toneladas de lodo de una de las casas afectadas.

El río y el capitán del que habla Emelia son El Jute y Miguel Ángel Jiménez, alcalde de La Libertad. La lideresa comunitaria cuenta, entre palabras atropelladas, que comenzó a sacar a la gente de sus casas a los gritos y a los golpes de puerta, porque al filo de las 3 de la madrugada de ese domingo 31 de mayo, El Jute ya estaba crecido y se estaba desbordando justo en donde pasa la carretera, ahí en donde el FOVIAL trabajaba en un puente.

La lluvia intensa a esa hora amenazaba por todos lados. El río ya estaba salido de cauce y se metía a las cas de la ribera y, desde las colinas, donde también hay casas, bajaban correntadas que arrastraban todo al paso. La comunidad es eso: una calle con casas de lámina a ambos lados unas dan al río y las otras están montadas en la colina. Y no, pese a las varias horas de lluvia, a esas 65 familias no se les evacuó con el primer aviso. El alcalde Jiménez explica que la información acerca de la intensidad del fenómeno no llegó a tiempo a las municipalidades que resultaron más golpeadas. Y que, aunque les hubieran dado una alerta temprana, “a la gente no le gusta salirse de sus casas”.

“Gracias a Dios no lamentamos muertes; porque, a esa hora, solo Dios con nosotros”, explica Emelia. Frente a ella, Jesús de Caridad Contreras asiente y, en el mismo tono, cuenta que ella también ayudó a sacar gente. Usó un megáfono para advertir que el río venía de abajo (zona del puente), para arriba (hacia la colina). Evacuar, aquí, tampoco es ir muy lejos. Los 40 adultos y 16 niños mal durmieron en el suelo de una iglesia evangélica que está en la misma calle por donde el río venía cortando paso.

La alcaldía de La Libertad es la que ha ayudado a las familias de la zona a conseguir servicios básicos como agua y electricidad. Y es, también, la encargada de arreglar la calle. El alcalde Jiménez no es ajeno a las condiciones de las comunidades, y señala que desde hace rato cuenta con un terreno de cinco manzanas, frente a la Unidad de Salud, en donde podría reubicar a las familias. “Ojalá que esta vez sí podamos ejecutar esto, porque, le digo, a la gente no le gusta moverse”, indica quien está al frente de la alcaldía desde 2015.

El riesgo en Jute Esperanza está tan normalizado que, cada año, se construye una borda en la parte alta de la comunidad. Y, todos los años, acaba destruida. “Necesitamos una borda más grande y que se arregle el mal trabajo que están haciendo en el puente de la carretera”, explica Zuleyma Contreras, presidenta de la directiva de la comunidad. La reubicación no es opción. La gente que más tiempo lleva viviendo aquí ya acumula tres desbordes convertidos en destrucción.

Las evacuaciones que se hacen con el agua hasta la cintura no son inofensivas. Lo sabe Azucena Leiva, de 27 años. Esa madrugada en la que Emelia y Jesús iban a sacando gente a los gritos, ella comenzó a sangrar. Con su hija de 4 años, logró salir de la casa y ponerse a salvo. Pero el sangrado no se detuvo. Para el medio día era fuerte. Y, de la Unidad de Salud, la refirieron a un hospital que no fue el San Rafael, el que le toca como referencia de su zona por estar ubicado, en Santa Tecla, a 26 kilómetros de distancia. La llevaron en ambulancia hasta el hospital San Bartolo, en Ilopango, a 46 kilómetros.

“Una reubicación debe tener una visión de respeto por la gente. Porque las familias no son sillas. No son muebles. No es que se agarran y se van a poner a otra parte”. La arquitecta defiende el derecho de las personas a mantener contacto con sus medios de vida. Un pescador, así, no puede ser reubicado lejos del mar.

***

Azucena tenía 14 semanas de embarazo. No se había hecho ecografía, pero había decidido nombrar Milton si era niño y Daniela Salomé, si era niña. Nunca le dijeron a qué se debió su aborto espontáneo. Los médicos, cuenta, se limitaron a decirle que lo iban a investigar. Ella y su pareja pasan el dolor de la pérdida refugiados en la casa de unos familiares. Ella está segura de que fue el susto, el frío, el esfuerzo, la angustia por huir.

La noche del 31 de mayo, mientras Juan y Guadalupe dormían en el albergue del Instituto Nacional de La Libertad, mientras Emelia y Zuleyma coordinaban comida y abrigo para 65 familias en dos refugios y mientras Azucena intentaba gestionar la pérdida de su embarazo, el presidente de la República Nayib Bukele dio una conferencia de prensa. Lo hizo desde la comunidad Nuevo Israel, en San Salvador, un asentamiento levantado a las orillas de la quebrada La Lechuza.

Muchos en poco espacio. En un 42.6 por ciento de casas hay hacinamiento, quiere decir que más de tres personas comparten el mismo cuarto, según la EHPM del año pasado.

Las lluvias ahí ocasionaron luto y pérdida total en algunas casas y severos daños en otras. Bukele anunció que el plan para reducir la vulnerabilidad es reubicar a las familias y entregar viviendas de un costo de $10,000. Los ministerios encargados de llevar a cabo el proyecto son Obras Públicas y el recién creado Vivienda.

La ministra Sol anunció en rueda de prensa que ya se está realizando el censo de las familias afectadas con la pérdida de su vivienda y que ya se están evaluando algunos terrenos en donde se pueden construir las casas. También presentó una proyección de cómo pueden llegar a verse las primeras 60 viviendas. Esta información se encuentra publicada en la cuenta de Twitter de la institución. En la página web, sin embargo, no hay ninguna información acerca de presupuesto. Y en el portal de Transparencia, en donde las instituciones gubernamentales deberían colocar los documentos de interés público, Vivienda mantiene vacías las carpetas de Presupuesto, Plan Operativo Anual, Estadísticas y la de Contrataciones y adquisiciones. Lo único que este ministerio ha publicado ahí está en Remuneraciones, en donde consta que le paga a un especialista ambiental $1,200 al mes y a un especialista en desarrollo territorial, $1,385. Mientras que, quien ocupa la plaza de coordinador de redes sociales de esta institución aparece con un salario de $1,730.

Es justamente en la cuenta de Twitter del ministerio de Vivienda en donde aparece colgado un video en el que la ministra Sol asegura que muchos de los posibles beneficiarios han expresado agradecimiento al gobierno, mientras que otros han señalado que el terreno se encuentra muy lejos. “Estamos buscando las opciones”, agrega la ministra.

Como institución, Fundasal acumula 52 años de experiencia. Sobre eso, la directora Blanco afirma: “Una reubicación debe tener una visión de respeto por la gente. Porque las familias no son sillas. No son muebles. No es que se agarran y se van a poner a otra parte”. La arquitecta defiende el derecho de las personas a mantener contacto con sus medios de vida. Un pescador, así, no puede ser reubicado lejos del mar. “Las redes son muy importantes para todas las personas, son las que nos permiten estabilizar la vida y una reubicación debe contemplar no solo la seguridad física, sino que también los mecanismos que sostienen la existencia de las personas”, señala.

En Jute Esperanza, los recorridos de Emelia no han terminado. Ahora con sol, las tareas son sacar con palas el lodo de las casas y lavar, en el mismo río que se desbordó, la ropa que se pudo rescatar. Hay humedad por todos lados. “Después de estos fenómenos, la gente queda con hongos en los pies”, revela como un detalle de esa parte de la historia que, casi siempre, queda sin contar. “Así es aquí -dice-, toca levantarse aunque duelan los pies”.

Sin margen. Un 29 por ciento de hogares vive en pobreza multidimensional, de acuerdo con la Encuesta de Hogares y Propósitos Múltiples de 2019.

Sonia’s little wooden room for dialysis

Fotografías de Glenda Girón y Francisco Corado

The room has four wooden panels that do not reach the ceiling. Inside, there’s a green plastic chair, on a table a pink canister with water, and on the floor a red plastic bucket. For the hydration solution, there is no pedestal. A nail in the wall supplies that function. On the door, in green color letters with crooked and childish strokes, someone wrote: treatment room. An arrow, just as bent as the letters, marks the entrance.

This square meter is the place where 50-year-old Sonia Ruth Alpirez locks herself up for detoxification on peritoneal dialysis. Her kidneys no longer work. She cannot pee. Through a catheter -that can be seen above her navel-, she connects two hoses, one to enter the serum that hangs from the nail and the other to take it out and pour it into the bowl on the ground. She repeats this procedure three to four times a day.

Sonia lives in a village in Tiquisate, Escuintla; one of the departments of Guatemala that, for over ten years, has reported most cases of Chronic Kidney Disease.

The advance of this disease in Escuintla has been notable. In 2008, there were 114 cases, and the death rate was 17%. While by 2017, there were already 233 cases detected, and the death rate had already escalated to 29%. These are data from Guatemala’s Department of Epidemiology, Ministry of Public Health and Social Assistance.

Escuintla is a department located on the coast of Guatemala towards the Pacific Ocean. It is part of a cord of populations affected by a type of Chronic Kidney Disease with no other previous illnesses, such as diabetes and hypertension. For this reason, experts have agreed to call it Chronic Kidney Disease of non-traditional causes. Escuintla also appears in agricultural productivity reports. 61% of the sugarcane cultivation area is in this department.

This type of CKD has taken place inside the farming communities. It’s not just Escuintla, nor is it limited to Guatemala. In Mexico, El Salvador, Honduras, Nicaragua, Costa Rica, and Panama, a high and unusual number of cases reported for almost two decades. Those affected are people like Sonia -who has worked in agriculture or lives on plantations- and who has some degree of loss of kidney function.

The CKD in these communities is not an immediate death sentence. It can be detected in the early stages. By doing so, patients have the opportunity to get treatment and slow the progress of the damage. Most cases, however, are detected in more advanced stages, when the kidneys are no longer able to do their function, and people suffer a collapse. After that, they are tied to a substitute therapy, such as Sonia’s peritoneal dialysis. It’s not a cure; it is, barely, what keeps them alive.

Sonia

Sonia tells the beginning of her story in a few words: “I started to swell, my breathing was difficult. They took me to the hospital and did tests. That’s when the doctor told me that I was sick with kidney failure. They treated me and put the catheter in once.” Before this, she had multiple episodes of UTIs but never found an opportunity to undergo a study more focused on detecting kidney damage.

Since August 4, 2012, Sonia must isolate herself in that cubicle that her husband built to do her detoxification process. At the same time, she follows a strict diet, cannot carry out physical activities, and, most importantly, she must limit her water intake, a significant challenge considering that, in Tiquisate, the temperature can exceed 38 Celsius. Sonia has been in this dynamic for eight years.

Sonia lives in the village Los Barrilitos II. And, here, she has more neighbors who have been diagnosed with CKD and also know of acquaintances who have died from the same disease. Every year, around 5,000 new cases appear in Guatemala. The departments with more CKD cases are Guatemala (capital), Santa Rosa, Petén, and, of course, Escuintla, to which Tiquisate belongs.

CKD from non-traditional causes has been the subject of several studies. However, it has not been possible to identify a specific reason for it. Some factors classified as risks are agricultural practices that involve intense work, heat stress, exposure to agrochemicals, indiscriminate consumption of anti-inflammatory drugs, and lack of access to drinking water.

Dr. Vicente Sánchez Polo, head of Nephrology and kidney transplant service at the Guatemalan Social Security Institute, adds more risk factors to what he describes as “the perfect storm” for CKD patients: the difficulty of finding health services,  low to non-schooling, poor nutrition, and low birth weight. “Everyone just by living in that place, have increased kidney vulnerability because that’s where all the risk factors come together,” explains Sánchez Polo. He is also a member of the board of directors of the Center for the Study of Central American Nephropathy in Central America and Mexico (CENCAM).

Housing. The qualitative housing deficit index in Guatemala is 61%. Six out of 10 houses are in poor condition. In agricultural communities, such as those of Tiquisate, Escuintla, the problem is serious.

El Barrilito II is like this. It is green, agricultural, and hot. It is a series of houses of sheet and plastic poorly placed on twisted sidewalks that become rivers of mud when it rains a lot. It is in this village where Sonia already lives only to connect to hoses four times a day in a wooden room. “Everything costs more with this disease. But the hardest thing to endure is bone pain, back pain, as well as having my lungs full of water, that’s how it feels,” Sonia tells from outside her house.

Among families in this area, it is not uncommon for CKD to be a diagnosis or a cause of death. What is rare is prevention. In Prevalence and Mortality of Chronic Kidney Disease in Guatemala (2008-2018), (published March of 2020), Dr. Berta Sam-Colop explains: “Patients with early stages of CKD are generally not diagnosed or treated promptly and frequently have multiple risk factors that increase the risk for loss of kidney function, the development of complications and early cardiovascular death.”

Sonia doesn’t live alone. She has a husband and eleven children. For them, and the rest of the residents who live in this “perfect storm,” the risk is high, and the prevention insufficient.

***

SONIA’S HOUSE HAS A TIN ROOF, painted walls, and a concrete floor. But living like this is not the norm in this municipality of Tiquisate. Most inhabitants have much less. In agricultural communities like this, there are houses built with boards and plastic and with a dirt floor where chickens dig, like the one where Francisco Santay, 58, another patient with CKD lives. Like Sonia, he lives in Tiquisate.

The land where Francisco has his house cost him 30,000 quetzals, equivalent to $3,900. He and his wife have five children. It took him and his family 11 years to finish paying this amount of money.

Strengthening the structure of the house was the most ambitious project they had when Francisco fell ill. Then, the sewage placement put in a hold. Now they don’t have any. And, since the conditions of his home are so weak and below what is considered worthy, Francisco is not a candidate for home dialysis. He must travel to the head hospital in Escuintla, two to three times a week, to undergo a machine-assisted detox called hemodialysis. These weekly trips came to complicate the family economy further. The family lost its ability to pay services, and now they don’t have electricity. Francisco, wife, and children have a debt of more than 1,800 quetzals ($235), here that kind of money is an impossible amount to collect.

In Guatemala, the qualitative housing deficit corresponds to 61%. This fact translates that of every ten houses, six have some or several issues, in poor condition. According to the study “Diagnosis of housing in Central America,” published four years ago, among the primary deficiencies are 29% of the houses have a dirt floor, and 22% have walls with defective materials, such as Francisco’s. “The lack of drinking water affects 9%, while the lack of easily accessible sanitary service in the home represents a very high 44% of the homes, as they lack this service in its entirety or only have a latrine,” the document describes.

These deficiencies become a greater danger in the case of families in which there are people with chronic and progressive diseases, such as CKD. Families like those of Sonia and Francisco. “This is the real problem of having health systems that are so deplorable and so weak, you do what you can,” says nephrologist Sánchez Polo, from the IGSS. And he adds: “We know that dialysis does not cure anything, it only serves to expel toxins, and the poor people have to do three to four replacements a day, what will happen to a poor farmer who does this process in a house with a dirty floor and with flies? He is going to have an infection.”

The most affected. The agricultural workers sector is at the forefront in the prevalence of chronic kidney disease. It is one of the most visible because, in general, it has social security coverage.

***

NON-TRADITIONAL CHRONIC KIDNEY DISEASE IN TIQUISATE, in Escuintla, Guatemala, is the same that has farmers and their families captive in Jiquilisco, Usulután, in El Salvador. And it is the same that causes anguish in Bagaces, Guanacaste, in Costa Rica. It also affects hundreds of people in Chichigalpa, Chinandega, Nicaragua. And this disease is the same in Marcovia, Choluteca, Honduras. As Dr. Sánchez Polo says, it is not just a medical problem; it is also a population problem.

“Un chico de estas zonas ya nace pobre, con dificultad de acceso a la salud, con bajo peso; cuando empieza a trabajar a temprana edad, sus reservas renales ya van disminuidas”, expone el doctor Sánchez Polo, y suma que la normalidad en estas comunidad incluye el consumo de agua de mala calidad, uso o exposición a agroquímicos, abuso de medicamentos antiinflamatorios, bebidas azucaradas, exceso de calor y esfuerzo físico extremo a la hora del trabajo. “Esto hace que esta sea una enfermedad más de carácter epidemiológico, poblacional y no solo relaciona a una causa, son múltiples causas”, agrega.

“A boy from these areas is born poor, with difficult access to health and low weight. When he starts working at an early age, his kidney reserves are already diminished,” explains Dr. Sánchez Polo. He adds to this situation the consumption of poor quality water, use or exposure to agrochemicals, abuse of anti-inflammatory drugs, sugary drinks, excess heat, and extreme physical effort at work. “This makes this a disease that is more epidemiological and not only related to one cause, but there are also multiple causes,” he adds.

In Latin America, countries with the highest mortality rates from CKD are Nicaragua and El Salvador. Just in El Salvador, deaths reach 2,500 annually. The populations most affected in each of these countries are on the Pacific coast. A document endorsed by the World Health Organization (WHO) indicates: “This geographical area contains the largest portion of arable area, and agriculture, especially sugarcane has intensified in recent decades, which resulted in an increase in the cultivated area, a higher yield per hectare and greater productivity of the harvests”; this is how the document “Epidemic of Chronic Kidney Disease in farming communities in Central America,” published in 2017, describes the situation.

Escuintla, to which Tiquisate belongs, has 165 thousand hectares dedicated only to the cultivation of sugar cane. “Most of the national mills and cane production locates in the department of Escuintla, due to its strategic geographical location towards the main port of the country (Puerto Quetzal),” says a report from the Department of Macroprudential Analysis and Standards Supervision of the Sugar Sector.

Sonia hasn’t always lived here, in Barrilitos II. Before, she lived in another community in Tiquisate called San Juan de la Noria.

When viewed from a satellite map, San Juan de la Noria looks like a sharp point with very straight edges. What makes it that way are the crops. Hundreds and hundreds of green hectares surround it. The main economic activity is agriculture, and the predominant plantations are sugar cane, bananas, and African palm. These harvests represent 84% of the municipality’s production.

Access to health. Francisco Santay, 58, is a kidney patient. He has to travel to the Escuintla hospital, from Tiquisate, to receive hemodialysis.

It was this agricultural character of the area that made Dr. Sánchez Polo and his team head towards Escuintla, where Tiquisate is, to conduct a study on the prevalence of Chronic Kidney Disease. In a sample that included 700 people of all ages, the researchers screened them. “We focus on a community that is located 200 meters above sea level, it is in a risk area, because several sugar mills surround it,” explains Sánchez Polo.

The results of that study are worrying. “We found that half of the children already have kidney damage,” says the researcher and nephrologist. These children are in school; they aren’t workers and, if they do some work, it’s not the whole day. Sánchez Polo explains that, although there are attempts to link CKD only to agricultural workers and this reduce it to an occupational risk, this is not a reality.  Research like this, which includes populations beyond the mills, reinforces the idea of ​​multiple causes. “We found that 30% of women who were housewives, already had kidney damage,” he adds.

Sonia, in fact, only worked in agriculture for a short time when she was a child and helped her father. Between 2008 and 2018, 35,877 people with CKD were registered in Guatemala, according to data from the service network of the Ministry of Public Health and the National Unit for Care of the Chronic Kidney Disease (UNAERC). In that same period, 19,491 deaths related to this disease were documented. The mortality rate of CKD in Guatemala is 54%.

The risk for the researcher and nephrologist Sánchez Polo is not just the job: “The fact that you live there already makes you a person at risk of kidney damage. Early detection and protection are required. But, in the same context of poverty, these people are not checked not cared for.”

For Sonia and her family, El Barrilito II’s house is, without a doubt, an improvement. “A blessing,” she says, which came to them through the evangelical church they attend. When asked if she would move from here, the answer is no. And, in this regard, she has only one request that she makes almost as a whisper: “Here, I would only improve my little wooden room so that I can get myself my treatment in a better way.”


Glenda Girón es becaria 2019-2020 de Bertha Foundation.

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

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

Living and dying between crops: Chronic Kidney Disease in Chichigalpa

imagen de casa de agricultores
Photography by Glenda Girón

A company, producing sugar and its derivatives, provided housing and basic services to entire colonies of people. They were tenants, thousands of tenant farmers who lived with the smoke from the burning of sugar cane fields, as well as with the spray of agrochemicals thrown by the planes. That’s how it was just over 20 years ago, when braceros, paileros, fumigators and their families lived inside San Antonio sugar mill, toward the Pacific coast of Nicaragua. There were farmer’s markets on weekends, there were days of house cleaning and medical ones. Also, people celebrated birthdays and weddings. People had a home, a job and a family. They were a community, the community that lived and kept alive the San Antonio sugar mill of The Nicaragua Sugar State in Chichigalpa, Chinandega.

Chichigalpa, this hot municipality of narrow streets, was completely changed by three events. The first one was the eruption of the Casitas volcano in October 1998, which left hundreds dead and displaced. In November of that same year, Hurricane Mitch flooded and carried what little was left standing in the mud. The third was of a population’s nature, a movement unprecedented until then: The San Antonio sugar mill removed all the tenants from the sugar mill’s lands. They were thousands. It was 1999.

“Let’s put it this way: Chichigalpa originally had 174 acres. The amount of land that the mill bought for the tenants was, at first, 104 acres. But they got to buy 174. So Chichigalpa practically doubled when they founded La Candelaria”, says Víctor Sevilla, who was mayor of this municipality for three periods. Those extra lots that the mill bought, explains the former mayor, were divided. For each one, two families were placed. “The latrines were so close together that when it rained, overflowed,” says the mayor who puts his hands together to illustrate the distances and extends them as far as he can to illustrate the overflows.

The impact was not only of demographic density. People in those new settlements started to get sick. The common diagnosis: Chronic Kidney Disease. People recently moved from the San Antonio sugar mill to La Candelaria, and other scattered in smaller settlements, began to see their kidney function deteriorate rapidly. From that beginning of the 2000s, people remember that they came from burying one when they had to take another person to the cemetery.

The former mayor does not want photos taken, nor does he get out of his car for this interview somewhere in the middle on the road, outside the city. But he says one thing for sure: “People were taken out of the mill because they were going to start dying and that’s how it was.”

“Our houses, our regions, our cities such as Chichigalpa, El Viejo, Pozoltega, Quezalhuate, and León itself, all are in the middle of the sugar cane fields. The natural environment of these populations is sugar cane,” explains the former mayor Sevilla.

***

NICARAGUA IS A COUNTRY THAT WAS SPLIT IN 2018.
Protests against government decisions about social security filled the streets. There was violence and repression. From this event, fear and political polarization are taken to the extreme. Since Daniel Ortega regained presidential power in 2007, the government has obscured his entire management. And, after the recent day of protests, government activity became more secret. In this context, government institutions are not used to providing data. It happens with the statistics of violence and with those of hospitals. The data, if there is any, is not public information.

A study dated 2003 includes, to illustrate the number of diagnoses, a map in which each point is a dead person. The points are concentrated in the departments of León, Chinandega, and Managua, on the side that this country faces the Pacific Ocean. The same strip in which the cases of Guatemala, El Salvador, Honduras, and Costa Rica are also concentrated. This study was carried out by the Nicaraguan Ministry of Health and is one of the few official documents that are available in this regard. At the time, the alert was noticed because in 1990 were only 200 deaths, and it jumps to 500 in the 2000s. “Between 2004-2006 there were more and more cases, but we do not know how many,” explains a medical source who prefers anonymity.

The first ones affected by Chronic Kidney Disease (CKD) in Nicaragua were men: agricultural workers, with little access to drinking water. A profile already described in several of the scientific studies carried out that seek to define why, in this region, CKD is not only a consequence of diseases such as diabetes or hypertension (which is the traditional behavior of the disease), but also affects younger and, apparently, healthier people. But above all, why, if CKD is not a communicable disease, it has a specific niche in farming communities.

No distance. Pedro is standing on the sidewalk that divides his house from the crops. In Chichigalpa, it is impossible to segregate residential areas.

Juan de Dios Guzmán, this morning of February 2020, does not have enough fingers or memory to make a list of how many people from La Candelaria he has seen die from this disease. He prefers to summarize: “Here, we all have creatinine”, this is how Chronic Kidney Disease is known. He is with other neighbors in the patio of his house, a surface of the land and some stones where, with plastics and crooked sticks, he has made a kind of very precarious terrace. Juan is shirtless, the heat, the wind and the dust almost do not let speak. Hemodialysis marks are visible on his arms. They are bulging veins like balls.

Juan was a pailero -a person who cuts the sugar cane with the machete from the field-. Juan has been ill since 2002. Juan says he got sick from working at the sugar mill and living in this area. Juan has children. Juan’s children are paileros. Two of Juan’s children have Chronic Kidney Disease. “We don’t have anywhere else to go. If it isn’t there, there’s no work,” he says as he shrugs. This cycle is the same in most of the houses of La Candelaria. It’s not that the women in the house aren’t sick; they just don’t know, because they’ve never been tested. They don’t have health insurance.

Community. La Candelaria is the neighborhood created for people who were moved from the grounds of Ingenio San Antonio. Here, Juan de Dios takes the bus that takes him to receive treatment for Chronic Kidney Disease in León.

“It’s a tragedy,” is how one of the doctors quoted by Boston University researchers in an independent report published in 2011 describes it. Another of the doctors estimates that the number of cases increases by 10-15% each year; and, pharmacist suggests that the cases increase exponentially: “About five years ago they began to fall like flies, almost every day a dead person appears or extremely sick with this disease.” This document collects the impressions of doctors and pharmacists who are in the front line of battle in diagnosis and treatment.

In 2019, a group of 17 scientists from different countries published another study in which they analyzed, for a year, the cases of 34 patients from El Salvador, Sri Lanka, India, and France. Professionals found in common “lysosomal lesions of proximal tubule cells associated with various degrees of epithelial atrophy and detachment of cell fragments present in 81.3% of kidney biopsy samples from patients.”

Carlos Orantes, Salvadoran nephrologist and one of the 17 researchers in this study says: “The person who suffers from this particular type of CKD has three characteristics as an element of development: poverty, environmental pollution, and unhealthy working conditions.” This document relates the exposure to agrochemicals with a propensity for kidney deterioration. “Geographical or residential provenance is very important in this; where you live, what you do, where you grew up, how you developed are the social determinants of this disease”, he adds from the headquarters of the Ministry of Health in San Salvador, capital of El Salvador.

Productivity area. The municipality of Chichigalpa, in Chinandega, on the Pacific coast of Nicaragua, is an area of ​​high agricultural production.

The study published in scientific journals delves further into the profile of the patients: “They are young men, mainly agricultural workers, with common socioeconomic and occupational determinants that include a warm tropical climate, poverty, and exposure to potentially toxic substances, mainly agrochemicals to through ingestion of contaminated food, through drinking water from shallow contaminated wells, inhalation, and direct skin contact. It has been found among less exposed people, including non-farm workers, women, and children living in the same environment. ”

Chronic kidney disease of non-traditional causes is sown in farming communities, and regardless of whether the causes are not yet determined, the geographic component is undeniable.

Juan has been ill since 2002. Juan says he got sick from working at the sugar mill and living in this area. Juan has children. Juan’s children are paileros. Two of Juan’s children have Chronic Kidney Disease. “We don’t have anywhere else to go. If it isn’t there, there’s no work,” he says as he shrugs. This cycle is the same in most of the houses of La Candelaria.

***

La Candelaria is a cloud of light brown powder. In the middle, where the precarious houses stand, it’s impossible for them to be clean. The fine earth sneaks all over the place. And the intense heat forces you to go out, to take your shirt off, and to create shadows with plastics to be able to stay.

That’s how Juan de Dios is when he receives a visit from Jorge Romero. CKD, like dust, sneaks in the middle of every conversation.

—”They were taken out by commitment, to avoid problems, but they knew that all these people came stuck with creatinine,” says Romero, who is 65 years old, worked 14 harvests in the sugar mill, also lives here nearby and also has kidney damage. But he doesn’t need replacement therapy yet, the one in which a machine does the job that the kidneys lose.

—“Nobody has ever given us an answer to this creatinine thing. We have been waiting 20 years”-, points out Juan de Dios.

Between neighbors. Pedro is one of the people who lives in La Isla and who shares space with macrocrops, in this case, sugar cane.

La Candelaria is the starting point for buses full of people who leave for the hospital of León every day. People take turns, because everyone must, at least twice a week, undergo the only treatment that worked among the people of Nicaragua: Hemodialysis. The other alternative, peritoneal dialysis was not massive, since it is domiciliary and requires basic housing and hygiene conditions that are not met in this settlement.

In La Candelaria there is electricity, but there are no sewers. As the former mayor Sevilla described it, the latrines are glued together. And so, too, are the people who live with CKD.

Juan de Dios is one of those patients who fill the buses, which are a service provided by the Chichigalpa city hall. There are so many that Juan belongs to the third group and, even later, there is one more. Every day, four buses with between 60 and 80 people leave La Candelaria for León, the white and tourist city, but they don’t do sightseen, they go straight to the hospital. It’s not just them. Here, in Chichigalpa, some people receive the treatment in Chinandega or Managua. They are various armies of people with withered kidneys. “And those are the sick, but alive. Of the old paileros there is almost no one left,” says Jorge, looking at the ground. Juan de Dios nods.

***

Nicaragua has always been agricultural. When it wasn’t sugar cane, it was cotton. These coastal lands have always been sown, always harvested, always occupied.  The sugar industry already celebrated its 100th anniversary. People work here and to live here, they have been fighting space for crops.

“Our houses, our regions, our cities such as Chichigalpa, El Viejo, Pozoltega, Quezalhuate, and León itself, all are in the middle of the sugar cane fields. The natural environment of these populations is sugar cane,” explains the former mayor Sevilla.

In places like these, especially in Chichigalpa, separating residential from industrial areas is practically impossible. “The houses are in the middle of the sugar cane,” says Sevilla. He doesn’t exaggerate.

La Candelaria is the settlement from which the sickest comes out to receive treatment. There’s another town where the dead came from. It received media attention for it. It is called La Isla, but in the newspapers of several parts of the world, for about five years, it has been known as La Isla de las Viudas (The Island of the Widows). This is very common in the countries of this region, attention comes with death, not with sustained social injustices, such as safe access to housing.

Pedro Amador is wearing a dirty bandage covering his catheter. You can see it through his shirt when he extends his arms, as he is doing now trying to list his neighbors from La Isla who have died: “I don’t think I can finish that list today. Just here, on the other side, three went almost at the same time.” With other of his relatives present in this house, he puts together a list in less than two minutes: “Tino Calderón, Pedro Calderón, Felipe Calderón, they were brothers; Julio Altamirano, the other Julio, Salomón, Chepe Luis, Tomás Calderón, Aurelio, Virgil … “. Those only in recent years.

The Island is a community added to a sugar cane field. Pedro’s house is in front of a huge area of ​​newly planted sugar cane. They are barely divided by a dirt path. The cane has its routines. It is sown, it is fertilized, and agrochemical is applied to it that is used to mature it. There are no walls here or any type of border. The fertilizer reaches the mango and avocado trees of Pedro’s house and, when that happens, the fruit rots. Then comes the burning, necessary to overcome the resistant texture of the reed, and then to be able to cut it. At this stage, Pedro, his family, the neighborhood, the municipality, the entire coast, breathe smoke.

Pedro Amador stopped working at the San Antonio sugar mill in 2001 when kidney damage was diagnosed in the same company. Since May 23, 2019, his chart became complicated and he became part of the dozens of men who, on La Isla, live with a catheter in their neck that serves to connect them to a machine that fulfills the function that their kidneys can no longer do.

Today, when he saw two women arrive, Pedro was happy. He thought we were representatives of the association to which he applied for a loan to buy the metallic sheets and fix his house. But no, we are only two journalists to whom he tells what it’s like to live and die among crops.

Access to water. Pedro’s wife collects water from the well. The families of La Isla are supplied by this way. They have no access to controls over the quality of the liquid they use.

Pedro wants to show us the part of the roof of his house that is damaged. He makes numbers, he needs 22 metallic sheets to replace everything and to have one sheet left to leave an overhang. The sheets that for the moment are supported on four walls and protect the sleep of him, his wife, son, daughter, and grandson are corroded, broken. They don’t work. But, if he could remove them, Pedro would not throw them away. He plans to use them to cover the kitchen, which is outside. Because, inside, there is hardly any room for beds, a refrigerator, a table, a screen and a couple of furniture to put their clothes.

Pedro also needs some cement bricks. He does numbers again, adds, multiplies and, in the end, divides the sum he would borrow among all the months in which he could pay it. It doesn’t fit. When he talks about remodeling his house, his face covers him with illusion and frustration. “I am not telling you how much each sheet is worth, because I haven’t asked. I am afraid to, I have no courage to go,” he says today when he is wearing a white shirt with a red heart.

Although he wants to believe that he can borrow the 20,000 córdobas that he needs so that in the next rain nothing gets flooded, or so that the fertilizer from the sugar cane doesn´t impregnate all, he admits that he lives on a pension of 4,600 córdobas. He estimates he could pay a fee of 1,600 a month, and that would mean tightening his belt. People with kidney disease live longer because of the treatment. But not all other basic needs, such as the roof, are met.

Pedro wants to show us the part of the roof of his house that is damaged. He makes numbers, he needs 22 metallic sheets to replace everything and to have one sheet left to leave an overhang. The sheets that for the moment are supported on four walls and protect the sleep of him, his wife, son, daughter, and grandson are corroded, broken. They don’t work.

***

At La Isla, while Pedro has been talking, his wife is preparing a pot of soup. She is going to sell it. She has already cut the vegetables and has brought the meat to a boil. But what she has done most is draw water from the well. This is the form of supply that is here in most houses. This is a barely covered well and it is not tested to find harmful chemicals in humans. There was once an attempt to introduce piped drinking water service, but the institution leading the project was not even able to offer a service without long interruptions. People, like Pedro, preferred to continue with their well.

In La Candelaria, when Juan de Dios and Jorge talk, Juan’s wife does the laundry. Here there is a water service by pipeline. But they are not systematically checked either. And, if they are, the results of those controls are not made public. People do not know what kind of water they use to wash, cook, or drink.

The face of this disease is farmer men. But it is a face made based on incomplete data. A nephrologist who has been working closely with them for decades explains: “More male patients come because there are more men among insured. This statistic gives a fictional value, not a real one.”

Universal treatment. The Nicaraguan health system has strengthened the treatment network for Chronic Kidney Disease.

With the outbreak of the Chronic Kidney Disease crisis in the early 2000s, changes in social security were also promoted. “At that time people died in their houses; it was horrible to see them with dry mouths, among high fevers, they said that they burned and that they had sand in their throats. They died in front of their loved ones,” recalls the former mayor Sevilla.

Then, the law required 750 weeks of work to be entitled to a reduced old-age pension. The law was amended in 2013 and then in 2015. Now it requires 250 weeks to be able to have a pension of 1,910 córdobas for people who do not reach the age of 60 that requires retirement. With this, health insurance coverage was extended and more workers were able to extend their lives thanks to the treatments. But the new cases didn’t stop.

The San Antonio sugar mill maintains strict security measures, according to those who have worked there. Among them, are pre-diagnoses, the prohibition of working in the company if you have kidney damage, scheduled breaks, and the indication to only drink water that is inside the facilities, employees cannot bring any liquid from outside. The representatives of the San Antonio sugar mill were asked for an interview, but we were not able to get a response and schedule it.

Between Pedro and Juan there is a common characteristic. They speak in the short term. Every time they figure out the future of wife and children, they do so from their absence. Juan only wants his already sick children to receive better health care than him. And Pedro wants to hurry to inherit a house with the roof in better conditions, at least without holes. It is what it is.

Glenda Girón, Bertha Fellow 2019-2020

A house, a job, a disease

Fotografía de Raúl Benítez

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.

Shadow. One of the measures to which agricultural companies are forced is to have shaded areas so that workers can rest and balance the temperature.

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.”

Fotografía de Raúl Benítez

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.

Renal disease. José Quiroz always worked in macro crops such as sugar cane, pineapple, rice, melon. He has been diagnosed with chronic kidney disease.

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.

 

Guanacaste. The Guanacaste area is one of the most productive. Here, sugar cane, rice, pineapple, and watermelon are planted, among others. In the middle of the crops, there are also settlements, schools and clinics.

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?

Macro crops. Residing near macro crops is, according to recent studies, one of the risk factors for suffering from Chronic Kidney Disease due to non-traditional causes.

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.

Hurt. Sugar mills like Taboga carry out prediagnoses for people looking to work. If they find kidney damage, it does not hire them, but it does not share this information with health authorities, nor does it tell people what steps to take.

Glenda Girón, Bertha fellow 2019-2020

Honduras: The neighbors of the South have damaged kidneys

Photography by Glenda Girón

Lea este artículo en Español: Los vecinos del Sur de Honduras tienen dañados los riñones

Ángel Ortega raises his arm and points with his finger. Eight hundred meters away from his house, where he’s pointing, is a field that right now appears empty, but that very soon will be filled with melons as far as the eye can see. Ángel lowers his arm quickly, he can’t hold it in that position any longer. His veins are swollen, showing knots, and his skin looks withered. Angel was diagnosed with chronic kidney disease five years ago, in 2015, and has been receiving kidney dialysis since then. He is in great pain most of his days and nights.

The 2018/2019 melon harvest was historical for Honduras. The international prices soared up 45% from previous years. The Honduras Central Bank estimated the value of exports to have raked in some 110 million USD The big melon producer is in the zone of the Choluteca and Valle, known as The South, bordering El Salvador and near the Pacific Ocean. Ángel points to the place where the melon plantation is, to the right side of his house. He says that if you walk one kilometer through the community, you’ll find sugar cane fields.

In 1977, Ángel arrived at Monjarás. This is one of the 23 villages of Marcovia, in the area of Choluteca. Eleven years later, in 1988, he managed to buy a piece of land to build his house. He arrived when he was 20 years old, seduced by the job prospects and the chance to have a place to stay. Every day he, and thousands of young farm workers, got up at 3 a.m. and went to the field. By 8 o’clock he was done with one tarea and began another. He did so until 4 in the afternoon, when he stopped working in the fields of others to work on his own piece of land. On his own land he planted corn and beans. This impossible schedule is normal life for almost all of the men working as agricultural labourers in Monjarás.

Now, Monjarás has 7,500 houses, 16 schools, two banking agencies, about 20 clothing stores and some restaurants. And Ángel doesn’t work anymore. He spends his days on a hammock that hangs on the outside corridor of his brick house. The house has an exterior latrine, like many houses in this area. Four years ago, when Ángel was diagnosed with chronic kidney disease, his diagnosis was common in this area; as common as the brick houses and the outside latrines.

Chronic kidney disease has two categories. The traditional one presents itself along with other diseases like diabetes and arterial hypertension. The other, the kind that Ángel suffers from, is more complicated to name. One of its characteristics is that it appears in patients who have no previous history of disease, and at an earlier age in comparison with traditional kidney disease. This new kind of kidney disease presents, in fact, among people belonging to certain social conditions.

Fotografía de señor en una hamaca
Diagnosis. Ángel Ortega has been in treatment for chronic kidney disease for 4 years. In Monjarás, Choluteca, Honduras, diagnosis is common among neighbors.

Prevalence studies of this disease that were carried out in the region indicate that patients have two characteristics: that they work in agriculture and that they live in areas where there are massive crops. One of the first studies was made in El Salvador in 2009 and was called NefroLempa. It was directed by Salvadoran nephrologist, Carlos Orantes, who is an advisor to the Group of Experts in Sri Lanka for the approach of Cronic Kidney Disease (CKD) that affects agricultural communities; he is the author of scientific publications in international journals and has recently published chapters on the subject in the book Internal Medicine and Cynical Nephrology at the University of Oxford. Orantes has been a visiting professor in the Nephrology division of the Massachusetts General Hospital, Harvard Medical School, Harbor-UCLA Medical Center and Cedars Sinai-Medical Center.

“Some people choose to call this a disease. But it’s an epidemic”, says Orantes without any hesitation.
“When your focus is from the point of view of on the individual, the phenomenon of CKD is limited to the signs, symptoms and how it presents in the individual sick person. This is traditionally how the medical profession approach CKD and that is how they then treat the individual” Orantes says.
“But when this disease presents itself not in one or two or three people, but in hundreds and hundreds more, in a specific geographical, social, environmental area, and all the people affected share the same specific unhealthy working conditions born from the current agricultural productive model, then it’s no longer an individual problem but a problem on an epidemic level affecting whole societies.”

Orantes is speaking from one of the meeting rooms in the Health Ministry, in downtown San Salvador, El Salvador – a five hour long busdrive from Monjarás. He gained his knowledge on the matter in the communities he visited and worked in. He has written and published his observations about them in various medical magazines like MEDICC Review.
From Mexico to Panama, all through the Central American Pacific corridor, nontraditional chronic kidney disease presents in high numbers, which is the reason why specialists have called it “Mesoamerican nephropathy”.

“This is a population phenomenon; we are not talking about a disease anymore. We are talking about an epidemic. And because it affects more than two countries, this is already a pandemic,” explains an alarmed Orantes, one of the leading authoritative voices in Latin America about this matter.

In Monjarás, Ángel and his neighbors don’t actually say it, but they have experienced this pandemic in the flesh for many years, a pandemic that has rooted itself in the agricultural communities of the Pacific with no end in sight. Honduras only has data by area and not by community. Between January 2018 and June 2019, 202 Choluteca patients were hospitalised for chronic kidney disease.

***

Honduras is divided into 18 areas, with a total population of 9.2 million people. Choluteca and Valle are the two areas that have the highest rates of chronic kidney disease. Between 2016 and 2017, 2,839 people were diagnosed with it in the public hospitals of Honduras. 30% of the diagnosed people said they lived in those areas.

Choluteca and Valle are also the two most productive areas in the country. In 2016, the South Honduran region alone delivered 16,000 20 foot containers full of melons for the international export market. For 2019/2020, the yield will only go up: melon will increase by 13%; okra by 19% and watermelon by 50%, economists predicts. From all this, the priority for the Central Bank in Honduras is the income produced and the jobs created.

“This is the region that produces most wealth for the country, but look around you! You wouldn’t say so!” says Marcos, standing at a dirt road running through Monjarás. Marcos is a community leader who prefers to remain anonymous because in the area of Choluteca more than a hundred human rights defenders have received death threats.

Marcos is wrong though. You can tell there is development in his community, but maybe not in the way he would want it. Studies show that farmers contracting chronic kidney disease is directly related to the presence of massive crops. One study that followed 34 patients in four countries over 12 months concluded that there was ‘a specific lesion that occurred in patients with chronic kidney disease from the farming communities. This work was published in 2019. “We suspect the pesticides used for agricultural purposes are the cause responsible for this nephropathy,” explains Marc de Broe, one of the specialists who participated in the study and signed the final report.

In his house, Ángel remembers what his work used to entail: “I sprayed the venom with the fumigating pack on my back starting at 4 a.m. At 8 a.m. I stopped, when the women brought me food. Once, a tank full of Metil 800 fell over me when a tractor had an accident. I was soaked and went blind from it. The tractor driver took me to the river and left me in the water for about half an hour. No matter how hard the women washed the clothes, they turned yellow”.

Ángel speaks openly in front of his family. Although he’s the only one officially employed by numerous farming companies around Monjarás, all the members of the family that live in this house have been exposed to agrochemicals like glyphosate and paraquat. But these family members are not recognised by the sanitary system or the massive crop companies. “People who live in the farming communities are at higher risk of contracting chronic kidney disease,” according to the investigation published by the Sanford University of South Dakota. Monjarás is the perfect storm for kidney disease: near to massive croplands, with direct or indirect contact with nefrotoxic agrochemicals and dubious water quality.

“One study that followed 34 patients in four countries over 12 months concluded that there was ‘a specific lesion that occurred in patients with chronic kidney disease from the farming communities.

***

The four most profitable products of the South — melon, watermelon, okra and shrimp — earned 304.8 million US dollars in foreign exchange for Honduras in 2018. What is produced here, travels to the markets of Germany, Colombia, El Salvador, Ecuador, Spain, France, Japan, Mexico, United Kingdom and Taiwan, among others. What’s left behind after such a production is, however, an empty landscape. Inhabited, yes, but by people who coexist with death.

Marcos, the community leader in Marcovia, Choluteca, just 14 kilometers from Monjarás, has come to visit Ángel: “Everywhere you look there’s a house with someone ill or someone who already died from it.” This is no exaggeration. Marcos and Ángel are calculating the number of deaths and sick people directly surrounding them: behind this house, a man died a few days ago; to the front, there, left, somebody else is sick. If you ask to your right, there are also sick people. If Honduras had a map with a red dot placed on every house where there’s someone with kidney damage, the community of Monjarás would look like a red blanket. But Honduras doesn’t have such a map, nor does it have studies that go deeper into the causes of this epidemic. The only certainty is the number of people diagnosed. Between June 2018 and June 2019, 3,085 people with chronic kidney disease were treated in public hospitals in all Honduras. 806 of them came from Valle and Choluteca. These two areas, from a total of 18 in the whole country, account for 26% of all recorded cases.

The rise of melon production has been meteoric. The 2017/2018 crop produced 70 million dollars in exports. Estimates for the 2018/2019 crop predicted that it would rise up to 90 million dollars, but the projections fell short, and in reality exports surpassed 110 million.

At home, Ángel is making another calculation. “Three of us got together to pay the for a taxi to go to Choluteca to receive treatment, so it wouldn’t be so expensive.” Ángel made this 31 kilometer trip with his friends, Rosa and Maura. The taxi costs 600 lempiras ($24 USD) from Monjarás to Choluteca, where the Dialysis Hospital is located. This hospital provides the service because it is subcontracted from the government to do so. “Between my friends, Rosita and Maurita, we only paid 200 lempiras ($8 USD) each,” says Ángel before adding and subtracting. “A year ago, Rosita died and so Maurita and I remained and payed 300 ($12 USD) each, to go two times a week.”

Dialysis is a treatment where a machine basically does the work a kidney would usually do. Patients must remain connected to this machine between four to six hours. Depending on the state of the patient’s kidney, two or three trips a week could be needed. “I was left by myself paying for the trip after my friends died,” says Ángel. Maura died last August because of complications due to the reduced kidney activity. Ángel is the only one remaining.

http://guilles.website/dev/honduras-ecr/datavis.html

***

Chronic kidney disease is a phenomenon concentrated in the Pacific Ocean corridor of Central America. In 2013 it became the reason for a meeting among the Health Ministries of Guatemala, Honduras, Nicaragua and Costa Rica, who met in El Salvador to declare the investigation of this problem as a regional priority. In a joint statement, the highest health authorities of each Central American government agreed to give medical treatment to those affected and to give high priority to study the causes and the risk factors of the disease.

“Honduras hasn’t provided input to the studies about the disease in the same way that Nicaragua, Costa Rica and El Salvador have. El Salvador is at the vanguard of information and Guatemala also has info, but not us. Not because we don’t have huge numbers of patients, but because we don’t have any resources or because we don’t want to admit how big this problem actually is,” explains Gemmer Espinoza, from his private clinic. Espinoza is a nephrologist. He is also the only one in Choluteca.

Espinoza also works in the Dialysis Hospital. Because of his experience there, he has been able to build a profile of patients with chronic kidney disease. They are, overwhelmingly, agricultural workers. But also, almost inevitably, they are people who live in the vicinity of massive croplands.

In Monjarás, the dusty streets fill with people around sunset, once the heat has dropped down a little. Youngsters exchange snacks in the corners and little kids ride bikes. If it rains, there will be puddles of water, some puddles stretching for meters. If the day is dry, clouds of dust will rise. Sometimes, pending the direction of the winds, strange smells waft over the village and houses from the direction of the crops. The most pungent smell is noticeable just before dawn when planes fumigate the plantations.

Espinoza cannot support his observations with any medically recognised study because he has not written it yet. But he points out that 80% of the cases arriving at the local hospital are in stage 4 or 5 of kidney failure, meaning that the kidneys have lost almost all their filtering capacities and the dialysis is needed to extend the life of the patient.

The Honduran State pays around $100 USD per patient to the private company that provides this service, according to sources that asked to be kept anonymous. Indirect payments for the treatment, like bus or taxi fees, like the ones payed by Ángel and his sick friends, come from their own pocket.

Living in this region increased the likelihood that Angel and his family would suffer from chronic kidney disease. And although the Honduran authorities have information that confirm it, this evidence has not been enough to provide and organise services, educational campaigns, early diagnosis or treatments. Save for the presence of patients that gather every morning in the hospital to receive dialysis, this disease is invisible rather than the medical catastrophe that it should be.

Productivity. Monjarás is a community surrounded by massive crops, such as melon, sugar cane and okra. This is one of the most productive areas of Honduras.

“El Salvador, Guatemala, Costa Rica and Honduras agree that people who are sick, are related in most cases, with massive agricultural farms and crops. We must remember that there has always been farming in our countries, planting corn-beans, corn-beans, for survival. What makes this different, is the massive scale of farming and production and the use of chemicals,” says Espinoza. “It’s hard to sustain this without arguments, because in Honduras we don’t have studies, but all the research from other countries point towards the use of pesticides.” At least 29 brands of Glyphosate and 19 brands of Paraquat are marketed in Honduras, and indication of the scale of nephrotoxic substances in crops. These are two of the agrochemicals that scientific studies relate to kidney damage.

In front of Ángel’s house, some men have passed by, riding their bicycles. It’s the end of the afternoon and they have done their work. Four years ago, Ángel was also riding those streets in his bicycle when suddenly he felt so dizzy, he had to stop.

“I already had a high fever, and I started feeling cramps on my legs. I send the güirro (boy) to buy me some pain killers and a juice,” he tells. But Ángel didn’t get better with the pills and the juice. Eventually he had to go to the hospital. In fact, he went to a few hospitals. His diagnosis came late, even with knowledge of where he lived and the nature of his work, because the health system isn’t focused on providing a prompt treatment for these cases. It took at least four months to receive a diagnosis of chronic kidney disease and to start the only treatment: dialysis.

This lack of convincing arguments as to the nontraditional causes of the disease has also delayed the development of programmes focused on the special needs of the population, such as early diagnosis. Manuel Sierra, member of the Medical Sciences Faculty of the Autonomous University of Honduras, directed a study in 2019 about the prevalence of kidney damage in patients from the six biggest hospitals in the country. “We made a screening question to people older than 18 years who were receiving treatments in Internal Medicine: ‘Have you been diagnosed with kidney disease’? If the answer was positive, they couldn’t participate any more.”

“People who live in the farming communities are at higher risk of contracting chronic kidney disease,” according to the investigation published by the Sanford University of South Dakota. Monjarás is the perfect storm for kidney disease: near to massive croplands, with direct or indirect contact with nefrotoxic agrochemicals and dubious water quality.

Researchers found that 774 patients said they didn’t have any kidney damage. But according to the tests results, only 20% of these answers were true. “82% of people who reported that they were healthy, did have some level of damage: 8% in stage 1; 28% in stage 2; 30% in stage 3; 10% in stage 4; and 6% in stage 5,” explained Sierra. That means that 8 out of 10 people who went to the hospital for other reasons already had damaged kidneys and didn’t know about it, and are not taking care of their kidneys nor receiving the proper medical treatment. They are only waiting to collapse, just like Ángel did, four years ago.

Between January 2018 and June 2019, 197 people died in public hospitals from chronic kidney disease in Honduras. The day when Ángel had to interrupt his bicycle trip, he was going to the funeral of a friend, El Chuta, a neighbor and farmer like himself. El Chuta died from the same disease that has Ángel lying on the hammock. Ángel has been watching his friends die for a while now.

The study into the prevalence of non-diagnosed kidney disease is being repeated, but now exclusively in the zone of Choluteca, according to Doctor Sierra. While this happens, in Ángel’s community, the one with the houses neighboring massive croplands and people who drink water from wells, kidney disease is like the Grim Reaper invisibly moving across farmlands taking with it many people. It also brings fear. “Until now they (his family) don’t suffer from this, but this disease is a bitch. I see my wife and my son both with the same cramps already. Here you never know, that’s the saddest part of all.”

In private hands. The Honduran state has subrogated the treatment of chronic kidney disease to Dialysis in Honduras. This company receives at least $100 for each session given to a patient.

* Glenda Girón is a Bertha Foundation Fellow of the 2019-2020 generation

Carta Editorial

La enfermedad renal crónica lleva décadas instalada en las casas de los agricultores. Y acá no importa si hablamos de Guatemala, Honduras, Nicaragua, Costa Rica o El Salvador. Esta enfermedad ha demostrado que no conoce fronteras. De lo que sí da cuenta es de desigualdad y silencio.

En esta edición, arranca una serie de reportajes que busca, de la mano de los datos y los hallazgos científicos, contar las enormes dimensiones que ha llegado a tener este problema para las familias marcadas por la escasez de recursos para hacerle frente al escenario tan complejo que impone esta enfermedad.

Con el apoyo de la Fundación Bertha, con sede en Londres, Inglaterra, como un socio externo para hacer posible la investigación, en estas publicaciones el principal objetivo es el de hacer la tarea de llegar a dar voz a las personas a las que les ha tocado apostar el cuerpo en función de que la tierra produzca tanto como pueda y, con ellos, crezca la productividad de los países. Así, han terminado siendo consumidos por una dinámica injusta en la que han sido los que más han perdido. Han acabado como protagonistas de una historia cruel de pobreza y enfermedad.

En contraste, los gobiernos y todos los que han reportados ganancias basadas en el esfuerzo campesino, no han hecho lo que les correspondía para atajar las consecuencias de esta epidemia. La desidia ha derivado en que el drama de miles de personas afectadas por la enfermedad ha sido silenciado, pese a las evidentes características sociales que unen a los diagnosticados y que la ciencia ya se ha encargado de delimitar bien.

Lo que sucede en la costa del Océano Pacífico de Centroamérica es, en toda regla, un caso grave de discriminación. La gente está sufriendo un serio daño en los riñones y ha faltado quien ponga atención a este flagelo colectivo.

Carta Editorial

Esta vez es un pasto. Es uno marino, que tiene propiedades muy valiosas, al menos las que se pueden reconocer hasta ahora. Porque hace falta más investigación para poder otorgarle a este descubrimiento una justa dimensión. El Salvador mantiene escondidos una serie de tesoros, se podría decir. Y no, no es una frase bonita, porque significa que ha faltado voluntad o recursos para darlos a conocer al mundo. Y ha faltado, más importante aún, conocimiento para poder aprovechar lo que se tiene.

En el reportaje de esta edición, el periodista Stanley Luna cuenta cómo, gracias a la curiosidad y perseverancia de una persona, fue posible identificar áreas de pasto marino en la Bahía de Jiquilisco. Casi cada paso que se ha dado en esta investigación ha sido producto de ese mismo empuje que han tenido otros científicos que saben que están ante un descubrimiento de una gran magnitud. Ojalá el interés por la ciencia fuera masivo. Ojalá recibiera los recursos que reciben otras áreas. Ojalá aquí el foco estuviera en educar más en ciencia y no en armas.

Una educación distinta también ayudaría a acelerar mecanismos de protección que, por ahora, no se están ejecutando. Todo lo que sabemos es que en la Bahía de Jiquilisco, en El Salvador, hay pasto marino, pero hace falta hacer más estudios para determinar cómo se reproduce. Ante todo, también hace falta destinar recursos para protegerlo, porque, en la ignorancia, este hallazgo está a merced de cualquiera.

Muchas cosas cambiarían por acá si la ciencia tuviera más voz en la toma de decisiones. Si se le abrieran más espacios. Si se formara a la gente para valorarla y seguirla con entusiasmo.