This summer, I learned that ASPAT-Peru does their work out of a place of great love. This love is a choice.
For those who don’t know him, Melecio, the Director and President of ASPAT-Peru, is one of the kindest, most selfless people I’ve met. So, during our conversation with law school administrators at PUCP, I was shocked by something Melecio said as he was introducing himself, his work and ASPAT-Peru’s mission:
“Before I contracted tuberculosis, I never would have thought that I would end up here, doing the work I’m doing now. My family has land; they have money.”
“I didn’t have to do this.”
Melecio’s life-threatening experience with tuberculosis changed his life trajectory in more ways than one. At this meeting, Melecio went on to remark that it also led him to meet his now-wife, Judy.
Both former tuberculosis patients, Melecio and Judy form the backbone of ASPAT-Peru. Most of our time on the GROW team was spent with this power duo, gathered around the round table of the Sarita Colonia office in Callao. One day, while we were eating tallarines saltados and tallarines verdes from Judy’s nearby family restaurant, we asked Melecio and Judy how they’d met.
“We were both advocating for tuberculosis patients and we’d see each other at meetings to address tuberculosis,” they said. “So who made the first move?” we asked. Melecio smiled sheepishly while Judy told us about how he invited her to a conference he was helping to plan. They continued to see each other since then. Now married, Judy and Melecio have a precocious 4-year-old, Sebastian, who was the subject of many of our photos this summer.
Judy and Melecio gave us a glimpse into their unique and inspiring relationship (really, partnership) through the lens of ASPAT-Peru in how they cover and complement each other: Melecio is the strategic face of ASPAT-Peru while Judy ensures that crucial finances and back-office functions get done. When Melecio was taking an accounting course for his business classes this summer, Judy tutored him because, as she teased, Melecio’s strength had never been mathematics.
The strength of their love in some way parallels the love with which they approach their work. Their commitment is unfailing - requiring that they be willing to risk everything and yet to also give it their all.
In the past several years, free of the active burden of tuberculosis, Melecio, Judy and the other members of ASPAT-Peru have had time to build their family, careers and lives. But they continue to wake up every single morning and decide to do this incredibly challenging and meaningful work.
I don’t think I realized this fully until, a couple weeks into the GROW internship, Sarah and I accompanied Melecio to a health center in a more dangerous part of Callao. Callao itself is a region with many issues of urban poverty - including drugs, gangs and crime. On our way to the health center, Melecio warned us not to talk too much on the street: es una zona peligrosa. It’s a dangerous area.
After leaving the health center, we walked in silence to the combi stop nearby. It was then that I realized exactly how great the love is with which ASPAT-Perú approaches their work.
We at only been at the stop for a couple minutes when five men surrounded Melecio, robbing him at gunpoint of his backpack right before Sarah and my shocked eyes. There were no other people in sight. In that single, silent moment, while he struggled against the muggers, Melecio glanced at us with a look that said ‘don’t get involved, don’t get hurt, don’t worry,’ while I questioned noiselessly: ‘what should we do? how do we stop this? are you okay?’
Several police rides, four hours and two police stations later, it was revealed that one of the men Melecio identified and had arrested from the armed robbery had several peoples’ documents on him. He had been involved in several kidnappings. We were lucky.
Even after this, I knew that ASPAT-Peru would be back at this exact same health center — perhaps next week, perhaps next month — for whatever work needed to get done. I’m sure Melecio knew, too, even as he worried about the danger the episode could put his family in. Why? Because I have seen, consistently, the compassion and grace with which ASPAT-Peru treats tuberculosis patients who are also jobless, alcoholics and drug addicts. They know, as well as I do, that:
“You can’t save people, you can only love them.” (Anaïs Nin)
The tenacity of ASPAT-Peru’s work emanates from this place of deep empathy, strength and love. It reveals itself in Melecio taking a 2-hour combi ride from Sarita Colónia back to Miraflores with us to teach us how to use the combi system. In the way that ASPAT-Peru treats tuberculosis patients of all ages and backgrounds with the same compassion and respect. Most of all, it reveals itself in the way that ASPAT-Peru members wake up every single morning and decide to do this incredibly challenging and meaningful work.
This summer, I learned that ASPAT-Peru does their work out of a place of great love. This love is a choice. Like Melecio said, “I didn’t have to do this.”
But we do, out of love.
In solidarity and gratitude,
Many thanks to former GlobeMed at UChicago Co-President, Ethel, for this wonderful, inspiring read.
Please check out our UChicago GROW 2013 blog to read more about the exciting work we did in Peru this summer with our partner, ASPAT-Peru!
Non-communicable diseases (NCDs) cause 63 percent of all cases of death in the world. That is equal to 36 million people per year. Nine million people die prematurely every year — even before the age of 60 — because of NCDs.
People from developing countries suffer the most: 90 percent of the people who die before the age of 60 come from middle and low income countries. The World Health Organization (WHO) estimates that without preventive measures 52 million people will die because of NCDs before the year of 2030.
In India, the second largest country of the world, non-communicable diseases are responsible for two thirds of the total burden of disease (66.7 percent in 2010, 53 percent of all death). Not only a country’s people but also its economy is affected: According to a WHO report $236 billion of the national income of India between 2005 and 2015 will be lost because of the incidence of NCDs.
Public health experts provide various reasons for the increase of NCDs: In developing countries the standard of living has become more and more similar to that in the developed world. Social class also influences disease risk. The lower the social class the higher the disease risk — in developed and countries. Poor food choices and high tobacco and alcohol consumption occur more often with people from lower social classes. Lastly, many people from developing countries have no form of health insurance—and therefore little access to healthcare.
Read more of Pulitzer Center grantee Martina Merten’s reporting on non-communicable diseases.
By Elena Hadjimichael
The three years I’ve spent in GlobeMed have taught me that, sometimes, improving health in a community isn’t about the grand gestures, like a new hospital, a fleet of ambulances, or a six-figure donation. Sometimes, it’s about the smaller things.
In this case, it’s about breakfast.
In the port city of Callao, Peru—part of the Lima Metropolitan Area— tuberculosis presents a serious threat to public health. The disease is spread via airborne droplets, and transmission occurs easily among family members living in close quarters. But tuberculosis is a curable disease, treatable with a six-month course of antibiotics. The clinics are supplied, for the most part, with the necessary drugs and diagnostic tools. Why, then, does tuberculosis remain a problem in Callao? The answer, as ASPAT-Perú has found, has to do with stigma.
ASPAT-Perú, or the Association for People Affected by Tuberculosis, is a Callao-based organization run by tuberculosis survivors who have experienced firsthand the social, as well as the physical, effects of the disease. Melecio Mayta Ccota, the president and founder, was studying to become a pilot when he was diagnosed. Soon, he was too weak to continue his studies and was obliged to abandon his career.
This is not an uncommon story. Often, either the tuberculosis itself or the side effects of its treatment will cause patients to be unable to work. This feeds into the pervasive stigma surrounding tuberculosis in Callao; many associate the disease with poverty and ostracize anyone known to be infected. People who have tuberculosis are afraid to admit anything to their family, neighbors, and employers to avoid being marginalized or fired. Even being seen going to the hospital could be dangerous. Fear of stigma ultimately leads to lack of detection, increased risk of transmission, and low adherence to treatment. Uneven treatment is particularly pernicious because it generates drug-resistant forms of tuberculosis, which in turn require even more demanding treatment regimens.
But where does breakfast come into all this? ASPAT-Perú believes that tuberculosis patients need, more than anything, support. Some of this support is psychosocial: community health promoters visiting patients to offer a listening ear or to demonstrate that they’re not alone, even if their families don’t understand what they are going through. But some of the support required by patients is, in fact, nutritional. If those infected with tuberculosis cannot work, they generate no income to pay for food. To overcome the illness, however, tuberculosis patients must consume more than their normal daily allotment of calories. Furthermore, malnutrition exacerbates the effects of the disease. To make matters worse, one of the common adverse effects of tuberculosis treatment is nausea and stomach upset. Not only do tuberculosis sufferers have difficulty affording and keeping down food, they are also reluctant to continue taking medicine that makes them feel, paradoxically, sicker.
To address the interrelated issues affecting tuberculosis patients in Callao—social marginalization, lack of nutrition, negative associations with treatment, and low adherence rates—ASPAT-Perú has devised, in partnership with GlobeMed at the University of Chicago, the Desayunos program. To be piloted at a clinic in Callao, this program will bring together 30 patients and provide health meals six mornings a week, for six months—the duration of tuberculosis treatment. The aim of the project is to boost patients’ immunity through improved nutrition, and to associate the act of taking medicine (while under observation at the clinic) with the sense of companionship that comes of sharing of a meal with others. For me, this project drives home the point that medicine is not the only piece to affecting health. The causes of health are various, both social and economic, and so too should health solutions be. Here, all it takes is breakfast.
Elena Hadjimichael is in her final year in the College, majoring in International Studies. She serves as the Director of Communications of GlobeMed at the University of Chicago, one of 56 chapters of the nationwide organization that partners college students with grassroots NGOs to combat global health inequities. On campus, Elena is also involved in University Ballet and the Woodlawn Youth Publication Program.
Another candidate from the Centro de Salud Santa Rosa, Fernando, describes his experience with a disease that prevented him from working.
With the microenterprise and entrepreneurship training program this year, we are hoping to give that opportunity back to patients like Fernando.
Hans Rosling’s 200 Countries, 200 Years, 4 Minutes
The Joy of Stats
"In this spectacular section of ‘The Joy of Stats’ he tells the story of the world in 200 countries over 200 years using 120,000 numbers - in just four minutes. Plotting life expectancy against income for every country since 1810, Hans shows how the world we live in is radically different from the world most of us imagine."
In case I didn’t make it clear earlier, I have a gross infatuation with data visualization, and Hans Rosling is pretty much king here. Check out the whole series over at BBC Four if you’ve got the time.
Health officials in Texas have quarantined a Nepalese man trying to enter the U.S. with a particularly nasty form of drug-resistant tuberculosis.
It’s called XDR-TB, and it doesn’t respond to eight standard TB drugs.
As the World Health Organization says, “XDR-TB patients can be cured, but with the current drugs available, the likelihood of success is much smaller than in patients with ordinary TB or even multidrug-resistant TB.”
XDR-TB is rare, but it has appeared in at least 77 countries around the world, with Central Asia being an especially troublesome hot spot for the pathogen.
Read more about XDR-TB and the recent U.S. case in the Wall Street Journal.
Graphic by the Wall Street Journal.
"As the only GROW member who didn’t speak Spanish, I had the amazing privilege of being taken care of by my GROW teammates and witnessing ASPAT-Perú and their work in a different context: mostly through non-verbal expression and connection.
I still remember my surprise walking in their office. It was so different from how I had imagined it. One small room, one round table, Melecio and Judy. But that was were all the projects were planned, all the goals were accomplished.
And it was on that little round table that we brainstormed and explored different possible projects to address the desperate needs and daily challenges faced by the numerous patients affected by TB and poverty. With passion and energy, Melecio, Judy and the GROW team worked best not only with the hope, but also with the determination that each and every of these projects will be carried out successfully in the future.
Each day, Melecio and Judy welcomed us, smiling, like it was the best day. They took care of us, in every detail possible, and made sure we felt most home. I was surprised—and touched— when Melecio took two hours to show us how to catch the bus back from Callao to Miraflores, even though he had just finished a long week filled with work and classes.
Most of the time, I couldn’t understand what the members of ASPAT-Perú were saying, but they always spoke to us with such kindness and care. They taught us all about Peru and were eager to learn more about us and share their stories. They treated every patient we met with equal kindness, humility, understanding and compassion, where it was when we were as visiting patients at the clinic or at home, checking on their health and well-being, providing them with information about tuberculosis, or recruiting patients for the entrepreneurship program.
Melecio always sat down to talk with each patient and listen their stories, sharing about his own experience to encourage and motivate them. With the patients, he shared his strong belief that nothing is impossible and together that they will fight on.
During these five weeks, I have witnessed so much of the impact of our partnership. And, despite being the only GROW team member who didn’t speak Spanish, I could understand how we have and will continue to work as a team: loving together, laughing together, helping together, crying together and fighting together.”
- Sarah “Sarita” Huynh, 2013 GROW Intern