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In the third floor waiting area of the pediatric hospital in the Chiapas state capital of Tuxtla Gutiérrez, 3-year-old Ernesto seemed content to play quietly by himself while waiting his turn to see the ophthalmologist. Watching him, it might have been easy to peg him as simply shy. But someone who knows him and his story well could tell you that there’s more to understand about this young boy than meets the eye.
Dr. Francisco “Paco” Rodríguez, a physician from Compañeros En Salud, had accompanied Ernesto and his family to this and many other appointments. “I think that, due to his condition, Ernesto has developed his own vivid inner world,” Dr. Rodríguez observed, “as well as a strong sense of resilience.”
Well before his second birthday, Ernesto’s parents had also known better than to attribute his reluctance to venture far from his mother to mere shyness.
“He started to cry; he was crying a lot,” his mother, Florinda, recounted. “I was holding him almost all the time. Because if I put him down on the floor, he wouldn’t walk; he would just start to cry.”
“Because he was afraid,” Ernesto’s father, Oscar, added.
“He was afraid,” his wife agreed.
But afraid of what? And why? They were right to worry that something was wrong. But any parent of such a young child would have been hard-pressed to guess what the issue would ultimately turn out to be.
The family’s closest option for medical care (located an hour’s walk from their community) is a clinic staffed only part-time by a nurse, and–as is often the case with public clinics in the rural Sierra Madre region of Chiapas–no doctor. The family made arrangements and paid a series of fares for transportation to a city some four hours away from where they live, and there a doctor gave them the grim news about what it was that had been keeping Ernesto from walking, causing him to trip and bump into things when he did, and making him cry even when what he needed was already within reach: their one-year-old son had cataracts in both of his eyes. What’s more, they were told that the surgeries their son needed would cost them $70,000 Mexican pesos.
“They were charging $70,000 pesos,” said Florinda, “and we have no money.” She turned to her husband, “He just works planting his corn crop and beans. That’s all that we grow here. There is nothing more.”
The family’s adobe brick home is one of the farthest from the center of a small, rural community situated on a steep hillside in the Sierra. From the unpaved road, a well-trodden path winds upwards, through the trees and past a few neighbors’ homes before leading (with considerable effort) to theirs. From this high perch, there’s an expansive view of the surrounding slopes rising almost as sharply as the one their home is on. The peaks of the surrounding mountains disappear into the heavy grey cloud cover above. On small clearings dotting the forested banks, they and their neighbors grow the corn and beans that Florinda is referring to.
For generations, families have cultivated these staple crops using practices adapted to the terrain and the cyclical wet/dry climate of the region. In recent years, as the climate has become less stable and more prone to erratic conditions, local families face increasing hardship in providing for themselves and also being able to sell any surplus to buy other necessities. Too much rain–or too much at one time–and the soil is at risk of eroding from the precipitous slopes. Too little rain–or spread too far apart–and crops suffer stress from periods of drought.
“It rained about two times, that’s it,” Ernesto’s father said, referring to recent weeks.
“It’s all following over,” his wife said. “The corn crop is falling over.”
“And then there’s a worm that eats the corn,” he added.
The family’s life, in recent years, has been much like the climatic conditions: no lack of dark clouds, but little of the rainmaking they’ve needed. Ernesto’s condition and their failing crops haven’t been the only hardships the family has faced. “First his mom died,” Florinda said of her mother-in-law. “His mom […] was really ill. She died of a problem with her kidneys. It was really advanced and that was it.” But that wasn’t all. “Six months after his mom died, his father died. It was quick.”
Timely, affordable and adequate health care simply hadn’t been within their reach or their means. They knew they would need help when they were faced with Ernesto’s condition.
“We went to ask for some help and there [in a neighboring community] was a man working and he told us, ‘Why not go over there,’ he said, ‘with [those doctors],’ that sometimes they’re really great, and he started to talk about how they’ve cured several people. And because of that, we took the boy to La Soledad,” said Oscar.
La Soledad is one of the ten communities in which Compañeros En Salud (CES) works in partnership with the public health system, supporting rural clinics that not long ago had no full-time physician or, in some cases, no physician at all. After establishing a program to recruit and support medical pasantes who serve as primary care physicians in these communities during their year of social service, CES quickly identified the need for a program to connect patients to specialized care outside of the community when necessary.
“Can you imagine having skin cancer eating your face? Or a hernia that keeps growing because you’re unable to stop working? Or your uterus completely outside of your body and not having access to a surgery? These are actual cases of patients that we’ve seen and cared for in our clinics, and only some examples of the conditions that people confront and live with in places where there is limited access to care, like the area where we began working just a few years ago,” says Dr. Valeria Macías, director of secondary and tertiary care at Compañeros En Salud. Dra. Macías was among the first pasantes to carry out their social service year with CES. “CES started with primary care. When I was a pasante, we had everything for primary care. Sadly, for some patients, this isn’t enough. Some conditions are complicated and a rural clinic, however well-equipped, it is not enough. We started seeing a huge need for surgeries, cancer treatments and other specialized care that we could not provide. We saw patients with conditions that they had been suffering from for years or decades without any relief because they couldn’t access care. The burden was overwhelming. As a team, we decided that CES needed a referrals program, so we started the Right to Health Care program to serve as a link between the health centers and the government hospitals. It’s a program dedicated to learning the health care system, finding all the resources available, and addressing the barriers that our patients face in order to connect them with care in order to alleviate their suffering. Wouldn’t we want the same for ourselves and our families?” After her social service year, Dr. Macías became the first coordinator of the newly created Right to Health Care (RTHC) program. She later went on to earn her Master’s degree in Global Health Delivery at Harvard Medical School before returning to take her current position as director of the programs that link CES’s patients to advanced care.
Ernesto is just the type of patient the RTHC program was created to serve, and Dr. Montserrat Quesada, the CES pasante they met with in La Soledad, wasted no time in referring him into the program after examining him. The family had traveled more than an hour and a half to arrive at the community clinic in this small community that was not so different than their own, but it opened a new world of possibility to them.
“We arrived in La Soledad and it was quick. They sent us to Jaltenango. From Jaltenango, again, it was quick, being sent to Tuxtla,” said Ernesto’s father.
Although CES quickly engaged the team, resources and systems of their Right to Health program for Ernesto’s case, there were still barriers to work through in his access to care. The team knew that, if they were going to be effective in helping their patient, they were called to attempt a deep understanding of the family’s lived experience.
“They scolded him there; the social workers scolded him,” Florinda said, speaking of one encounter her husband had in a health facility during their struggle to seek care for Ernesto. “About why we let the boy’s condition advance so much. They scolded him and then he explained, ‘Because of the money,’ he told them. But, yes, they were scolding.”
The pasantes who join Compañeros En Salud for their social service year receive monthly continuing education courses. These courses cover not only clinical topics and instruction on the highest standards of care in the world, but also modules on global health and social medicine. Through these lenses, Ernesto’s family’s hardships in accessing care for him become understandable not as problems to be left to individuals to overcome, but as issues to be addressed and taken into account in the way that health care and other types of social systems are designed.
"We have seen that, with the support that our team gives to our patients, the success rate for referrals goes pretty much from 0 to 100% effectiveness, which reminds us of the importance of addressing social determinants and material barriers,” says Dr. Hugo Flores, director of Compañeros En Salud. “We continually train our pasantes to see beyond the physiological causes of disease and show them how the success of a treatment relies on addressing these issues.”
Dr. Rodríguez was one such pasante. After graduating from medical school, he carried out his social service year with Compañeros En Salud and later became the coordinator of the Right to Health Program. During his pasantia, Rodríguez completed its year-long continuing education course in global health and social medicine while he accompanied patients through the lived experiences that he was learning about.
“Getting patients to the hospital, as challenging as it may be, is the easiest part. The real challenges lie in understanding how big of a role their socioeconomic background plays in the possibilities of accessing care. Why do these communities have to endure the burden of a disease for which there is already a treatment in a big city? Why do they have to sell their land just to get one appointment with a doctor? Health must be for all and not just for those who can afford it,” says Rodríguez.
The accompaniment that CES provides to patients in the Right to Health program is pragmatic: identifying specialists, making referrals and scheduling appointments, as well as arranging and covering the cost of lodging, meals and transportation while patients are accessing care at facilities located hours from their homes. But it’s also personal: the program’s team of logistics staff, social workers and physicians accompanies patients in every step of accessing, understanding and adhering to care, helping them confront obstacles as they navigate the healthcare system, and advocating on their behalf. Ernesto faced no shortage of obstacles.
“When a patient arrives to the hospital for their first appointment and receives the intended care, then maybe there is a chance that everything will be alright,” says Miriam Morales, the coordinator of social worker on CES’s Right to Health Care team. “But after that appointment, in some cases, the patients are sent for lab or imaging work, or are sent to schedule follow-up appointments, or to get a medication, and the patient doesn’t know where to go, or what transportation to take. Sometimes they don’t know how to navigate the health system, or they aren’t even familiar with the city where their appointment is. It’s essential to have accompaniment that can guide them in this system. The lack of accompaniment becomes a barrier to the patient’s ability to move forward with their medical treatment. Our patients and their families don’t just suffer from health problems, but from everything: education, access to services. Many of our patients don’t know how to read or write and for them it’s like being blindfolded. Not everyone had access to that education, because of a lack of resources, or for lack of a school. It's because of a lack of many things in our society that all this happens.”
The family made several trips to the pediatric hospital for a series of medical tests and consultations to fully evaluate Ernesto’s condition and plan his treatment: he would have surgeries in both eyes, one at a time. For each of these consultations, their trip involved a string of public transportation over the course of several hours to arrive in Jaltenango, an overnight stay at CES headquarters, and then a three hour trip to the hospital in Tuxtla Gutiérrez with the Right to Health Care team. On one occasion, the family needed help rescheduling an appointment because Ernesto was sick; on another, because of his grandmother’s death. Finally, in August of 2017, they made the trip for his first scheduled surgery. They arrived and Ernesto was admitted, but the hospital discovered that it lacked a piece of equipment needed for the surgery. Ernesto was discharged; the family made the long trip home, and the hospital asked the CES team to be in touch in about three weeks to reschedule the procedure. Three weeks later, a magnitude 8.1 earthquake occurred just off the coast of Chiapas. Public facilities such as a schools and hospitals were closed for inspection to assess possible damages. The pediatric hospital’s administration made a plan to reschedule that period’s disrupted appointments and procedures to dates in the following year: at least four months out. Without an advocate, a patient like Ernesto (living far away in a remote, rural area) was at risk of being compromised in the fall-out of an emergency situation that the overburdened public health system was ill-equipped to handle.
“In medical school, I learned about the physiological bases for a wide range of diseases. I developed technical skills to read imaging studies, and learned how pharmacological mechanisms and surgical techniques could solve most of the issues we diagnosed. In the city, hospitals had almost every textbook treatment available. It wasn’t until I left the “specialized medical world” in the city that I understood my medical training was not going to be enough to help my patients in rural Mexico. Most of the time we're able to identify the signs and symptoms and be certain about the diagnosis; then the path became thorny. Technology and break-through medicine to treat them existed, but the nearest hospital for many of these patients is often 4 or more hours away and it certainly means spending money they don’t have. And most of these patients are one setback–one personal tragedy, one failed harvest or one natural disaster–away from falling through the cracks in the system. As health professionals, understanding how non-biological forces like economy and politics shape the health of our patients is crucial to promoting wellness for all. Particularly, when serving vulnerable populations.”
This is why health system strengthening is a central tenet in the approach taken by Compañeros En Salud: so that these systems are designed and operated to care for the needs of those who bear the greatest burden of injury and illness.
After the earthquake, CES’s social worker Miriam Morales and Dr. Rodríguez went to work advocating for their patient. Through the team’s efforts, Ernesto’s two surgeries were rescheduled and carried out by the year’s end.
Miriam emphasizes that the entire team was involved in Ernesto’s case. “We always made sure that one of us from the Right to Health Care team was there with Ernesto and his parents. This is a team. Not only our medical staff, but also our logistics staff–Edgar and Moises in Ernesto’s case, and now also Uver–know how to navigate [the health care] system really well and are able to resolve any problem that comes up in the moment, whenever the patient needs it. Accompaniment is a priority in our Right to Health Care program. It was essential so that Ernesto’s treatment was carried out.” And now that it has been, she says, “Personally, for me, there is no greater satisfaction than seeing all that was accomplished for Ernesto. I’m really happy for Ernesto and his parents.”
When Ernesto’s name was called in the ophthalmologist’s waiting area, Dr. Rodríguez accompanied him as he sat to have his eyes examined with bright lights in a dark room. After her exam, ophthalmologist Dra. Alma Leticia González Calderón decided to do a bit of laser treatment for posterior capsule opacification, a relatively common occurrence following cataract surgeries such as those that they had completed for Ernesto some months earlier, but she was otherwise pleased with his recovery. Ernesto quietly tolerated drops in his eyes to prepare him for the procedure, followed by another period of waiting, and then a long span of time kneeling so that his little chin could reach the platform of the headrest during his procedure. With the help of his father and Dr. Rodríguez, Ernesto stayed nearly perfectly still as Dra. González expertly and patiently orchestrated the lasers directed with precision at certain points in his eyes.
Ernesto and his parents were among twelve passengers on the CES trip to Tuxtla Gutiérrez that day with Dr. Rodríguez and Edgar Espinosa, one of the logistics staff members on the Right to Health program team. The team makes trips such as these several times per week, to places like Tuxtla Gutiérrez, Tapachula and beyond. Long drives, 4:00 a.m. departures, overnight stints, and changes in plans are routine. But even with all the support that they offer, the team maintains a humble awareness of the fact that, ultimately, the patient and their family are the ones who live the experience. It was 3-year-old Ernesto in treatment that day, after having nearly lost his sight. It was his parents who picked him up when he fell, who worried about what might be wrong before he could even speak to tell them, who went seeking help not knowing if it would be found, and who agonized about what the growing season would mean for the wellbeing of their family. And they’ve lived other hardships in the meantime. Besides his grandparents’ deaths and his cataracts, Ernesto has been hospitalized for both dengue and typhoid. The burden of disease falls on the most vulnerable patients, and that certainly describes Ernesto. Vulnerable but, as Dr. Rodríguez said, also resilient.
During a visit with the family in their home, Ernesto’s parents offered agua de carambola, as well as their gratitude. “Thanks to Dr. Paco and God, because he helped us,” said Florinda. “Miriam really helped us a lot, as well.”
Ernesto and his older brother, Abimael, were nearby, playing outside. “He goes out all the time, up and down. He’s all the time seeing little things. If he sees a little red bottle cap, he goes and picks it up, running,” she laughs. “Thank God that now he sees.” Arriving to this point with her son has been a long road for the family, and there is more that lies ahead. Florinda worries about how Ernesto will do in school, but she also has the support and encouragement of the team, who she says have told her how important it is that he go to school when the time comes. She appreciates the accompaniment as they continue on this path.
Ernesto is one of thousands of patients who have been able to access the care that they need thanks to the efforts of our team, and your support.
Thank you for your accompaniment.
"Lives of service depend on lives of support."
-Tracy Kidder, Mountains Beyond Mountains
We would like to extend a special thanks to Elena Muñoz Ruiz for her contribution to the transcript for this story.