On Tuesday morning of our last week with ASPAT, we accompanied Melecio and two clinical psychologists — Lucero and Liz — to the San Cosme Community Health Center, the largest in Lima. We were to attend a “charla educativa” — one of the potential projects in consideration for this year’s Partnership Action Framework — and meet with doctors and patients, all of which we were very excited for. We were warned that it would be different from the health center we had previously visited in Barrio Altos, but what stood out more to us at first was not so much the bigger structure or higher patient intake, but rather what we observed passing through the neighborhoods and communities surrounding the health center.
We met up with Melecio, Lucero and Liz near the Lima Museum of Art, and jumped into a microbus to cross the freeway into La Victoria/San Cosme. The Lima Museum of Art is located in the Parque de Exposiciones in the city’s historic center, near the Peruvian Supreme Court, and other governmental buildings. It’s a busy, touristic, and relatively clean area; we stood between many professionals in suits and ties as we waited to change buses on the street corner. After just ten minutes on the microbus, it was as if we had crossed an unmarked, but very salient border. We entered San Cosme near the “estacion”, where trains and buses leave for towns on the outskirts of Lima. Beyond the estacion was a huge depot building, outside and inside of which people were laying out second-hand items to be sold. The scene was very different than a thrift store or used car dealer district in the US, though. Here, men and women were seated in uncovered areas off the side of the road outside of often abandoned buildings and had, laid out in front of them, everything from worn pair of shoes to old kitchen appliances, including dolls with missing limbs or stained dresses, and fruits and vegetables, which ranged from familiar celery to unidentifiable tropical offerings. Seeing this from the bus window, we understood what a different world we had just entered — one where poverty drove an informal economy where many people on the streets bought, sold, used, and reused items that others would have thrown away. This market scene went on for several blocks, until we got off by a gas station where a narrow lane allowed cars to come in and out for fuel, but which was also occupied by heaps of unbagged trash. Getting off the bus, we could only see grey and brown; and the pungent smell of an environment clearly beyond the reaches of effective municipal infrastructure for street cleaning overcame us: Lima’s shantytown.
Walking down just one block, we arrived at the San Cosme Health Center, where we immediately found the stairs which led us to the second floor: an open-air TB treatment center. The health center, which had views of the surrounding slum-covered hills, seemed like a welcoming place: staff was very friendly, benches and plants created an inviting atmosphere for patients, and colorful painted walls and poster boards gave patients information on resources and statistics (from the demography of TB patients the center sees, to tools for undocumented patients seeking treatment). The upper level was an outdoor hallway with, like in the other center we visited, with separate treatment rooms for drug-susceptible TB and MDR-TB patients. Plastic tiles, on which several stray cats slept, covered the walkway below, and metal gates demarcated the first-floor ceilingless waiting room, where mothers and children sat among wheelchairs made of plastic garden chairs and bicycle tires.
Seated with Lucero and Liz and soon joined by two doctors, two simultaneous and interesting conversations ensued. Liz and Lucero, were at first very curious about where we came from and what we had enjoyed so far in Lima, and shared with us that they had known each other for the past six years — from psychology school and working together. Both clinical psychologists working for the municipality, they divide their time between schools, health centers, and home visits (although they do not administer medication, they help the most vulnerable patients stay motivated through home psychosocial support).
The doctors that welcomed us were also fascinating to listen to. The first man to approach Melecio was Dr. Maldonado, a lively doctor who has been working at the San Cosme health center for 6 months and seemed to know the patients very well. The second, Dr. Anthony Byrne, wore a Socios en Salud lanyard around his neck, and after several exchanges in fluent Spanish, switched to English for our ease much more than his. Dr. Byrne is an Australian pulmonologist, who, having recently completed the MD portion of his education on the other side of the Pacific Ocean, was just starting his research here in Peru for his PhD from the University of Sydney. Married to a Peruvian and the father of three, he has been volunteering for Socios en Salud at the health center for the past five months, time to adjust to this new environment, fill out all the paperwork, and lay the foundation for the next year of research that awaits him here. Melecio later told us that Dr. Byrne was planning on leading clinical trials and researching alternative drugs. Dr. Byrne didn’t tell us much about himself, but was instead interested in hearing about our work and experiences so far. He introduced us to the work of this health center by stating that while the rest of Lima generally sees an incidence of 100 new TB cases per 100,000 people, the neighborhoods of La Victoria and San Cosme that this health center serves has quadruple that rate: incidence here is 400-500 cases per 100,000 people. This, he said, is in large part due to the barriers in maintaining hygienic living conditions for the people he serves: his patients are poor and live in crowded homes and neighborhoods with little ventilation. Furthermore, the rates of prostitution and/or drug-use are high due to the lack of economic opportunities, which only worsens the state of public health.
We soon had to end our English conversation when Melecio called us over from the laboratory, where his lab technician friend, Juan Martin, had agreed to give us a tour. The two-room facility, albeit equipped with well-worn instruments (a microscope, hood, fridge, and sink), was clean and orderly. Martin briefly explained the TB-test procedure (coloration of the bacilli) and how to recognize the positive samples (red strands) and negative ones (only blue) in the microscope. He had a pile of forms neatly stacked up, and trays of samples to test. He told us that nowadays, he only detects two to three new TB cases a week. Three years ago, it was two to three a day. He conducts about 100 of these tests, called “Baciloscopia” or “Tincion de los frotis de BAAR”, per week (between 400-500 a month).
Back from our tour of the laboratory, Melecio, Lucero and Liz had regrouped patients to start the day’s “charla educativa” (or educational conversation). Three benches were pulled together in a U-shape, with Melecio, Liz and Lucero standing on the fourth side, facilitating the conversation. Thirteen people were seated on the benches — eleven patients, and two women here to support a husband and a son. Of the eleven patients, only two were women. Three were under twenty years old, six were 20-50, and three older than 50. The youngest attendee was a seventeen-year old boy (accompanied by his mother), and the oldest a 68 year old woman, whose body clearly showed the signs of the challenges it had faced before this point, with a hunchback and missing teeth. After signing everybody in and making sure that this group had never participated in this activity before, Lucero signaled to Melecio that the charla could start.
The first phase of the charla was introductions — everyone in the circle went around and shared their name, how long they had been on treatment, and how they were feeling. Squatting down to speak at level of his seated companions, Melecio initiated a short applause after every single person’s introduction, and asked follow-questions (“how are you feeling?”) if he sensed a sadder tone in someone’s voice. Melecio then concisely explained the importance of staying on treatment, keeping hope alive, and not giving up on one’s dreams — indeed, while six months might seem like a long time, it is nothing next to the risk of incurring 18+ months treatment if you develop a resistance to first-line TB drugs. Melecio went on to explain how he had found himself in their shoes 15 years prior, at a time when he hoped to become a pilot and could not imagine himself working on public health for the rest of his life, and how he had watched many of his now close friends undergo this difficult experience as well. Throughout his speech, Melecio was calm, made eye contact, and was very encouraging, stating multiple times that they should “sigue adelante” (continue moving forward).
The second phase of the charla, following Melecio’s personal testimony about shattered air pilot dreams and the rise of a new vocation to serving TB patients, was another pass around the circle during which each patient was asked to share their hopes, goals, and dreams. Almost all patients said their dream was to go back to work again; the younger patients wished to finish school. After everyone shared, Melecio insisted that TB should not come to interfere, and that TB would not prevent them from going back to school or work soon, or from having a career and family later. Although everyone’s personal battle must go on, Melecio also stressed the importance of having someone to talk to, and of sharing one’s fears and feelings.
The third and most touching phase of the charla started with Melecio giving everyone 10-15 minutes to write two anonymous messages of support that would then be randomly distributed to someone else in the group, and that they could keep and look at again in difficult times. The four of us wrote motivational messages along the following lines: “Don’t give up, continue fighting and stay on treatment”, “Harness your inner strength, stay strong!”, “You are more than your disease”, “Six months of treatment is worth a lifetime of health”, “Never forget that someone out there loves and cares for you deeply. You can get through this.” When Melecio re-distributed the messages to other participants, he also gave out brochures on municipality-sponsored employment for TB patients, and other resources for patients, such as psychosocial services, and legal help. Before dismissing participants, granola bars and peach juices were distributed as a snack to take along with their daily dose of medication. Melecio wished them all well, and promised that he would be available for consultations at this health center at the same time next week.
After the charla was over, the GROW team regrouped to talk about two patients who had caught our attention in particular. The first was the 68 year old lady. She had shared that although she lived with her two sons, she receives very little help and support at home. “Everyone is just living their own life,” she said, speaking of the fact that she has to do all her cleaning and cooking on her own. The second patient whom we were all worried about, whom we will refer to as Alfonso, had problems of a different nature. During the charla, he was on the verge of tears and lightly shaking when he had shared that this was his second round of TB treatment, and that he was depressed and experiencing debilitating fears. He talked about not being able to endure his current state. To all of us, he appeared very alone and in serious need of professional support. Luckily, as soon as the talk was over, he came to sit by Melecio, Liz, and Lucero and talked to them for the next half hour.
When Alfonso, seemingly reassured and in a more composed state, walked back into the office to receive his medication, we took his place by Melecio and were joined by Dr. Maldonado. Melecio and the doctor shared that Alfonso, a former cook, had been quite optimistic about his treatment following his initial diagnosis. It was only a few months into his treatment, when the results of his drug-susceptibility tests came in, that he began feeling so bleak. Receiving the news that he had MDR-TB and that his treatment regimen would therefore be at least 14 months longer than initially projected crushed him. Following this news, he had become extremely depressed and suicidal — to the point where he experienced a serious hallucination, the exact psychiatric cause of which is still unknown. His mother, who Dr. Maldonado labeled quite supportive, helped Alfonso get hospitalized. But, even in the hospital, TB patients can face discrimination. Alfonso was kicked out of the psychiatric ward and the hospital at large, on the pretenses of being rapidly ready for discharge, when the healthcare professionals realized he had MDR-TB. Let me stress that point again: he was kicked out of a hospital for being sick. I doesn’t get more mind-blowing than this. Luckily, Alfonso has now also been prescribed drugs to stabilize his psychological condition. Though it was unclear whether or not Alfonso was in fact seeking mental health care, Dr. Maldonado commented on how much Melecio’s chat with him had calmed him today. Liz also shared that while many patients theoretically have access to these services, few are able to find the schedule regularity, mobility, and motivation to follow the frequent meetings or counselling sessions. In today’s conversation, although the topic was centered around Alfonso looking for employment, it was a good opportunity to also share information about other services available to him.
Visibly distraught by Alfonso’s situation, Dr. Maldonado shared with us his indignance at society’s discrimination against TB patients — both within families when patients are “quarantined” in their own homes and made to feel dangerous and alienated (some individuals do not interact with their family members, or are not allowed to use the same kitchen utensils at meals) — and within communities. Indeed, regardless of whether or not TB patients wear a mask, they are subject to discrimination (social isolation, loss of employment, etc.). Dr. Maldonado believes these social ills can be cured, just like the disease, but that it will take time. In the meantime, TB patients must find resilience within themselves, and find support from family members; (for example, some male patients who must stop working to stay on treatment but cannot afford to lose their job can ask employers to replace them with their wife or oldest child for a six-month recovery period).
This last point touched on some of the medical ethical dilemmas that Dr. Maldonado faces every day. In many cases, he wants to tell patients they must stop work to stay healthy, rest, and take their daily medication, but the difficult truth (which he empathizes with), is that giving up the job that pays for all a family’s expenses is not something that many patients can realistically comply with. These dilemmas seemed to really dismay Dr. Maldonado, who let us in on some of his frustrations and values. After discussing these in the context of the incident of Alfonso being kicked out of a hospital, Melecio told us that few doctors were like him. And unfortunately, we all agree. Many doctors distance themselves from TB patients, which only furthers their feelings of hopelessness, and in some cases, lack of self-esteem. If even the doctors, whom to many patients are their only allies in the fight against TB, turn against them, who is there to help them through this difficult time? Dr. Maldonado strongly believes in the importance of doctor-patient relationships, which he envisions as horizontal, not vertical. “Just touching a patient — putting a hand on their lap or shoulder, reassuring them with physical contact— can make a huge difference in your relationship. It instills trust, and lets them know you are here to care and support them through this rough journey. The problem is that not enough doctors are doing this simple human act.”
At the end of a week that flew by in the flurry of translating a grant proposal for ASPAT and helping them prepare a budget on a tight timeline, Melecio told us to meet him downtown Lima for a meeting on Friday. We were excited to spend the day with him and discover a new side and setting of ASPAT’s work, but we did not expect to be treated to such an incredible experience. Much to our surprise, we were invited to sit in on a meeting of the Multi-sector Committee for the Prevention of Tuberculosis, which was run of the Ministry of Health for the municipality of Lima.
Our meeting spot was to be in front of the Palacio del Gobierno on the Plaza Mayor de Lima, which we thought was just an easy-to-find meeting spot conveniently located near the Ministry of Health’s office building. Getting into the Plaza de Armas, where the Peruvian President’s house, Lima’s main cathedral, and the Municipality are located, required talking our way past policemen who had the nearby streets blocked off for a strike. We successfully convinced them that us “rubios” did in fact have business to do at the Municipal Palace other than just taking tourists’ pictures, and we made our way to Melecio, who was unphased by our delayed arrival. Instead of greeting each other and starting to walk in another direction, we were led inside of the ornately decorated building, away from the bright yellow exterior and hustle-bustle of the street into a white glass-roofed lobby. Inside, a table with folders, documents, a banner printed for the occasion, a photographer and several administrators were there to greet us and sign us in.
After introducing us to a couple of his colleagues from the municipality, Melecio escorted us to the Salon Azul where a few promotores were already seated. Once there we met Jose, another ASPAT volunteer, and then Melecio proceeded to disappear for an hour. In proper Peruvian style, we were in fact among the first to arrive to the meeting, which we were 20 minutes late to. In the hour interim before the meeting actually started, various participants from the Lima city government and MINSA trickled in, and we had the time to compare and contrast our surroundings in a colonial palace complete with velvet chairs, stained glass ceilings, and centuries old paintings, with their counterparts in various city governments in the US. Our conclusion: we were thoroughly impressed by the elegance, and interested in the cultural differences this embrace of the colonial elements of Peruvian heritage represents. It was a pleasant surprise for us to see the two supposedly divided worlds of elite government officials and low-paid promotores united in this official venue.
About fifteen minutes before Melecio came back with the presenting MD, the deputy mayor opened the meeting by talking about the importance of intra-governmental collaboration between the national level Ministry of Health and the local Lima municipal government. This was followed by an awards presentation that honored some of the city’s most committed promotores, including Grace whom we met last week, and whom we applauded wholeheartedly.
In the subsequent presentations, we learned that Lima now has over 800 trained promotores, community health workers who work on an entirely volunteer basis to follow up with patients and assure that they are receiving the emotional support they need to stick with their treatment regimens. Not all volunteers stay on for a long time- it is a large time commitment, and many are unable to work long hours without compensation. But, like Grace, there are a good number who stick with it and, in the words of many of the promotores we heard from, their patients “become like family”.
The importance of non-medical interventions such as nutritional care and psychological support was stressed throughout the meeting. It was really encouraging to hear municipal officials and medical experts talking about the fight against TB in such broad terms, with an emphasis on training all their peers to treat TB patients as holistic people and not just attack the biology of the bacteria.
The doctor reminded the audience that treatment abandonment is the most common way that patients develop MDR- and XDR-TB. In addition to the importance of genotyping all samples to identify and closely monitor mono-resistant cases, he said that increased contact and social support of patients is to be at the heart of Peru’s fight to reduce TB. In order to reduce abandonment, there must be systematic attention paid to a patient’s lifestyle, wellbeing, and access to opportunities, which include: education (about TB and generally, as an opportunity to increase their social mobility), family and community support (which contrasts with the discrimination that patients often face due to misinformation about the way TB spreads), and psychosocial support (including access to psychologists and consistent contact with community health workers, who listen to patients explain the non-medical obstacles they face, give them tools to remedy these problems, and keep them motivated to get better). Furthermore, access to social services programs and the DOTS-mandated direct supervision of treatment are also channels through which patients receive support from peers and professionals, which enables them to keep providing for their families and not lose sight of their goals throughout treatment.
Between 2011 (when the first collaborative policy plan against TB was rolled out by MINSA, the Ministries of Housing and of Work, and the Lima Municipal government) and 2014, the government has educated 189,000 people of various social backgrounds about TB in regional parks and trained 824 promotores. In 2013, MINSA also created a new manual of official treatment guidelines that mandates that patients who test positive for TB get tested for other chronic diseases including HIV and diabetes. It also advises healthcare providers to inform their patients about all social services programs that they might qualify for and reiterates the importance of moral support. Access to the 72-hour genotyping test has been increased — there are now four in the Lima-Callao area. Concluding his presentation, the doctor also confirmed that MINSA has promised to implement increased food baskets in the near future.
When we discussed the presentation, the usually calm, cool, and collected Melecio was almost beaming. To have MINSA officials labeling as essential the emotional support consultations and increased food basket programs that ASPAT pioneered is a huge triumph for TB patient quality of care, and rightfully a source of pride and motivation for our partner.
Yesterday was a comparatively unadventurous, yet nonetheless rather exciting, day spent reveling in the beauty of in-person communication at the ASPAT office in Callao.
Our first achievement of the day was proving our recent mastery of the Lima public transit system, a sprawling, decentralized tangle of privately-managed vans and buses that run along the city’s main thoroughfares. In fact, many of the ubiquitous posters for mayoral candidates tout platforms of transit reform, reassuring us that we are not the only ones who find the system chaotic. We were more or less mentally prepared for a distinctly non-Western commuting experience when we realized about a month before leaving that there is no such thing as a map of Lima’s public transit system in existence. Indeed, the difficulty of creating one is perceived to outweigh the potential profit of selling it to thousands of tourists (especially since most of them travel by foot, city tour bus, or Lima’s cheap taxis). We have yet to have encountered other tourists on our bus trips. Yet, we have been pleasantly surprised at how relatively quick the buses actually are, at least in contrast to how deteriorated they feel, though they are not particularly speedy compared to how long it would take to travel that distance in the U.S. Their speed seems to be in large part due their barely stopping to pick up passengers, and being able to swerve among cars. Thus the upside of the transit system is that it has led us to an important new theory in the scientific understanding of time: time slows down at a rate equal to the square of the amount of pressure that the other bodies you are crammed between exert on you, multiplied by the number of transfers you have to make. We’ve now got the route to ASPAT’s office perfectly timed and perfectly planned, with the motive of maximizing morning sleep, of course.
ASPAT’s office itself is very modest; no exterior indications or signs: you knock on a house front door and enter one room divided by a wall. The back area is Melecio’s office: a central desk, a few cabinet, and bare walls. The front part of the room is the ASPAT common working space, made up of a desk with PC, a large table seating up to six people, a few book shelves, and piles of empty hardback binders. ASPAT’s humble quarters (protected by several locks and out of sight from passer-bys thanks to window shades) are located on the bottom floor of Melecio and Judy’s small two-story purple house, which they share with their five year old son, Sebastian, and Judy’s mother and sister. The first floor includes another bedroom and bathroom, and the upper floor common living quarters, as well as an open-air terrace which where clothes are hung to dry. Below, the street is dusty and dirty: garbage is strewn on the sidewalk, there are no plants or grassy areas, and stray dogs watch the come-and-go of cycle rickshaws. This means there is largely no hard and fast separation between work and home life for Melecio, which seems to have both its pros and cons. We’ve learned that Melecio often works on Saturdays, especially since that’s the only day that some of ASPAT’s volunteers are available, yet, even during the week, he also needs to be available for Sebastian when he gets off school to meet him for lunch at Judy’s mother’s restaurant around the corner. We are immensely impressed by what ASPAT is able to achieve with such modest human, spatial, and financial resources.
In that vein, we were able to get a lot of substantial updates from ASPAT about many of the projects our partnership with them has touched on over the past 4 years:
1. Canastas: A couple of years ago, GlobeMed at UChicago’s Memorandum of Understanding (MOU) funded the delivery of food baskets to low-income patients receiving TB treatment at some of the clinics that ASPAT regularly works with, and the positive results of that project are finally trickling through the government bureaucracy and beginning to influence the Peruvian Health Ministry’s (MINSA) policy proposals. MINSA currently gives some very basic food supplies to low-income patients who have lost their jobs as a result of starting daily TB treatment, but not enough to prevent malnourishment. Melecio says that MINSA is currently discussing increasing the food baskets they provide to be much more similar to the ones that ASPAT was delivering, increasing their investment per basket per month from a cost of 50 nuevos soles (about 18 USD) to 300 soles (about 110 USD). This comes probably in part as a response to an analysis of government policy by some low-income Peruvians that Melecio encapsulated as, “the national economy has improved recently but that has not translated into better social services and policies.”
2. Desayunos nutritional guide: While the UChicago chapter is working on raising the last of our funds for our previous MOU, ASPAT is working on getting everything lined up to begin the implementation of the Desayunos pilot program we are funding. One of the final steps in that process is finalizing the recipes and beginning the creation of the nutritional guide. We learned today that the initial nutritionist who was supposed to work with ASPAT on refining a menu tailored to the needs of TB patients has virtually dropped out of the project and no longer answers Melecio’s emails. But we got the good news that Judy has found two young nutritional consultants with a wide breadth of experience and expertise between them, who are now collaborating on the recipes. A draft is expected in about a week, meaning that Desayunos is finally almost ready to get up and running.
3. Micro-Business Seminar: Workforce discrimination is a huge barrier faced by many TB patients, exacerbating the financial strains that are often a large contributing factor in creating the conditions that lead to their contraction of TB in the first place. In response, GlobeMed and ASPAT collaborated last year on the development and execution of micro-business training seminars for fifteen TB patients so that they could start their own small businesses to give them a flexible source of income while they continued to comply with treatment. Melecio let us know today that, despite initial difficulties in finding interested candidates who had the initiative to follow through and run a business, ASPAT was able to identify and train fifteen patients, all of whom successfully started their businesses in the beginning of 2014. Some of the patients have returned to higher paying employment since finishing their six month regimens, or have moved back to provinces outside of Lima to rejoin their families, but a number of them are still running their businesses. We are hoping to meet some of them in the days to come.
4. STOP-TB grant: ASPAT was recently awarded a new grant from the international organization STOP-TB giving them funding to start a leadership training program for patient advocates from other provinces outside Lima. True to their title (the Associacion de Personas Afectadas por Tuberculosis), the heart of ASPAT’s mission is enabling and amplifying the voices of TB patients themselves in Peru’s conversation about public health and policy. This new program will allow them to take big steps towards that goal.
On Friday, September 5, we met with Melecio in downtown Lima to visit the Juan Perez Carranza clinic. This open-air facility welcomes hundreds of out-patients everyday, and serves as an information, diagnosis, and treatment center for people living in Barrios Altos. Around a central atrium, which is made up of a outdoor waiting room and shrine to the Virgin Mary, wards branch out on all sides. Services offered here include HIV and TB diagnosis and treatment, OB/GYN appointments, a dentist, a radiology center, a pharmacy, a laboratory, and a children’s ward. We were led to the “Neumologia”, or pulmonary ward, where 100 patients come in every day from 8am-2pm to take their free medication, supervised by a nurse. In the Neumologia ward, composed of an open-air courtyard and two offices (one for MDR patients, the other for regular TB patients), we find patients and their families, nurses, doctors, reporters, and promotores (community health workers). We had the pleasure of meeting two individuals in particular, one patient and one promotora, who told us their stories. Each painted a different picture of strength and hope in the face of vulnerability and the realized threat of TB.
The first individual we met, Grace, is a transgender promotor. We never asked for preferred pronouns, but we will use the feminine form because she introduced herself using a female name (all names have been changed). Grace is tall, wears a long, untidy black wig, and thick eye makeup around her eyes. Besides from a long sweater with faux-fur cuffs and collar, the rest of her clothing (blue jeans, closed-toe shoes, and a patterned shirt) are quite ordinary. Grace is most likely in her late-30s, but is already missing several teeth. Grace was diagnosed with TB in 2009, at which point she underwent the 6-8 months drug treatment, and met Melecio. She is now cured, and has since then been working as a promotor – she acts as a community health worker and liaison between the clinic and the patient’s home by delivering and supervising daily medication for patients. She sees about 4 patients a day, but most of the time her work does not stop there. In many cases, she visits the homes of patients unable to travel to the clinic themselves. Traveling from home to home takes up much of her time, and she also often ends up cooking meals or caring for the children of the house whose parents do not have the energy to look after them. Outside of patient visits, Grace spends time at the clinic, counseling patients who come in and seem to have lost hope, or who are having a hard time taking their medication regularly. She says TB patients who have drug addiction problems are the most difficult to work with because of the dual stigma associated with their condition. She mentioned one particular young woman who came to the clinic because of severe back pains and was quickly diagnosed with TB. The woman initially refused to admit that the pain she was feeling was due to TB and left the clinic; it was difficult for Grace and other clinic staff to persuade her to start treatment. After giving us an extensive tour of the clinic and chatting for a while, Grace accompanied Melecio and the GROW team to lunch, and then made sure we made it safely back to the bus home. On the way to the bus, I couldn’t help but notice several instances of people turning around to stare at Grace: people in cars, pedestrians, or store-owners on the sidewalk. Most of these gazes seemed derisive or laden with shock. Either way, it made me feel uncomfortable and sad, but Grace stood her ground – not once did she look back in their direction, flinch, or say anything back. She was definitely owning her appearance and her pride was admirable, but it still hurt me to see that, despite dedicating so much of her time to help others, she herself remained so vulnerable. On the bus trip home, Jeanne L. and I chatted about Grace and her generosity, but also how her appearance and situation made her not only vulnerable in the streets, but also in the job market – although she might enjoy what she does, she may not really have a chance of trying a different line of work and permanently leaving behind her dark TB days.
The second portrait I would like to draw is Gabriela’s. We found her sitting on a bench outside the TB ward, a mask over her mouth, looking down at her lap. Gabriela is 19-23 years old, a young beautiful girl with long hair, an obvious sense of style, and a meticulous French manicure. Three days ago, she was diagnosed with TB. For the past two months, she was been feeling down, tired, and was spending less time with her friends. Because she lives only five blocks away, she came to the clinic to be diagnosed, fearing the worst. Yet, learning about her infected status was not the worse news to befall her: she had to quit her job, and most important, she had to interrupt her studies. Her class cycle started just days ago, all her friends are back at school, but she is forced to spend all day inside watching TV and cooking in her tiny, stuffy, windowless apartment. Although she agrees with Melecio that her health must come before everything else and knows she can resume her psychology studies when the next cycle starts in January, she still feels bored, depressed, and lonely. Following her diagnosis, her parents accompanied her back to the clinic to make sure neither they nor her three younger brothers (ages 5, 6 and 15) had been infected, and to learn about the precautions they should take. Upon returning home, Gabriela (who presumably shared a room with her 15-year old brother) moved into a room of her own in order to protect her family. The good news in all of this is that Gabriela seems to be receiving the support she needs in this difficult time, and has easy access and the will to take her medications. She has also learned that in a month, she will no longer be contagious, so although she will not be able to resume school yet, she will be able to spend time with friends again and maybe take up a job for a couple months. This will also ease up the situation at home. Until then, though, she must wear her mouth mask whenever she speaks and cover her cough and sneezes. After our conversation with Gabriela, Melecio shared his own story of having been in her shoes just a decade ago, when his dream of become an airline pilot were dashed by a TB diagnosis.Though her future may currently look bleak and uncertain, Gabriela is young, healthy, and driven. TB is an early obstacle in her career and life, but she will be able to overcome it and beat the disease. Her vulnerability will diminish as long as she continues treatment- in this sense it is more transient than that which Grace must endure. However, unlike that of Grace, Gabriela’s vulnerability is contagious: with three young siblings breathing the same air she does everyday, she feels a great deal of responsibility to avoid infecting them, which surely weighs heavily on her shoulders.
In 2013 in Peru, 31,000 new cases of TB were diagnosed.1,600 of those were MDR-TB, and 275 with XDR, of which only 40 are currently receiving treatment.
Experts contracted by the Peruvian Ministry of Health estimate that 56% of MDR cases are not detected, so it is difficult to know how many vulnerable people are being exposed to MDR/XDR and how many are carrying the disease, or getting the wrong treatment
Peru is the leading TB-afflicted country in South America, in front of Brasil, Ecuador, Bolivia, Honduras and others. For instance, there were 68 recorded cases of XDR-TB patients in the first trimester of 2013 in Peru, vs. 18 in Brazil. Of course, Peru’s 30 Million population does not rival with Brazil’s which is close to 200 million. This makes the figures, in proportion, even more alarming.
The highest number of new cases of TB in Peru was recorded in 1995; (4,200 for 100,000 people vs 1700 for 2013). Melecio says that this most likely has to do with the economic situation of the time produced by the switch to the Nuevo Sol (the current currency system), which caused many people to hit on hard times.
Age breakdown of TB cases in Peru by percent:
37% are adults ages 30-59
34% are young adults ages 18-29
15% are older adults ages 60+
9% are teens ages 12-17
3.4% are kids 0-11 years old
Seeing that Peru’s population is largely very young (29% of the population is under 14 years old), TB affects in large part a working age population that is already quite small. TB thus not only affects the economically active, but also their family’s ability to make ends meet. In addition, TB mostly affects men, who are detected with 61% of new cases every year. Luckily, the HIV-TB incidence is quite low, with only 4% of TB cases being HIV co-infections.
Peru region who are leading the nation in TB caseload are (% of the nationwide load):
Lima Ciudad 24%, East Lima 18%, South Lima 8%, Callao 7%
Already, we see 57% of Peruvian TB cases in the Lima Metropolitan Area (8.4M people, about one third of Peru’s 30 Million people total). In fact, the coastal areas of Peru, which make up only 11% of the country’s territory, host 55% of the population.
Furthermore, another scary indicator is that 4% of people who are given general medical exams should be diagnosed with TB according to expert estimates, but only 2% are… Many medical professionals aren’t looking hard enough for the symptoms when the disease is in its earlier stages, and thus compromises the health of hundreds of families.
Although most TB is found in Lima, and XDR largely concentrated in Lima (with 557 recorded between 1997 and 2013, of which 40 only were being treated — and only 21 in hospitals), East Peru is also very affected. Indigenous practices replace western medicine, and these populations have very little access to drugs, tests, hospitals, or other health services.
Currently, Peru has largely sped up the screening and testing process by introducing the genotype test in 2011. Before this new test, the 1990 DOTS program, and the 2007 STOP TB were the only government-sponsored testing programs, which, with only one working lab in the country, were not as efficient in delivering results and getting patients on treatment fast.
ASPAT-Peru’s work has a lot of breadth, ranging from prevention and outreach in schools, to check in on patients about the quality of their day-to-day care, to giving policy suggestions to almost every level of local and national government. Yet, though it might seem slightly ironic, Melecio spent much of our first morning together explaining the Peruvian TB diagnosis and treatment process in-depth, as it is extremely important that we understand the context for their advocacy and the experiences of the patients we will be meeting.
Despite having one of the most well developed diagnostic processes in South America for identifying MRD- and XDR-TB, it still takes over four months for most Peruvian health centers to identify drug resistance in patients already diagnosed with TB. And that is only when they are tested for in the first place. Although the Peruvian Ministry of Public Health (MINSA) guidelines dictate that all patients diagnosed with TB should be immediately given a drug susceptibility test, Melecio and public health experts estimate this only happens for 40-50 percent of such patients. Peru’s lack of health infrastructure and easily accessible medical technology has historically made widespread and efficient susceptibility testing difficult- as recently as fifteen years ago, all samples had to be sent to Massachusetts for processing. However, in the past decade, MINSA has made considerable strides to improve health care systems for TB care, including building their own labs capable of performing susceptibility tests.
To summarize the diagnostic process here in Peru:
Step 1: A patient goes to a doctor’s visit because they are having symptoms of a serious illness. (90 percent of the time these are respiratory for patients with TB since only about 10 percent of TB cases are extra-pulmonary). The doctor takes two samples of mucus from the lungs and sends them to the lab for a TB test.
Step 2: If the TB test is negative, the doctor must continue to look for other possible illnesses. If the TB test is positive, another mucus sample should be taken from the patient and sent for the drug sensitivity test. Peruvian labs now have genotyping capabilities, which detect MDR resistance within 72 hours. A TB case is only labeled MDR if resistances to both of the primary first line drugs (rifampicin and isoniazid) are picked up by the genotyping test. If a strain of TB is resistant to one drug, it is known as mono-resistant and treated with the other first line medicine. If a strain is resistant to two drugs other than rifampicin and isoniazid, it is poly-resistant, but can be treated with a normal regimen.
Also of note, Peru has greatly improved its infrastructure for diagnosing MDR TB over the last ten years; at one time there was only one lab in the country that could do these tests and the 72 hour genotype test is quite new, having been introduced into the medical infrastructure here only in 2011. The quick turn around time is important because failure to receive the right treatment can result in the development of increasingly serious resistance and a loss of hope for the patient who will not see improvement despite taking their drug regimen regularly.
Step 3: If the patient does not have MDR-TB, they are given a doctor’s order for a first line drug regimen and are directed to a clinic to immediately start their six month treatment. If the patient is diagnosed with MDR-TB, the doctor must collect more samples and send them for two more extensive drug sensitivity tests, which check for all first- and second- line drug resistances. A case will be labeled XDR if it is resistant to the two primary first line drugs, as well as either Capreomycin or Kanamycin, which are the primary second line drugs, as well as one other second line therapy. Patients must wait 3 to 4 months to receive answers.
Step 4: Meanwhile the patient must also undergo an in depth medical examination. A physician records their full clinical history, do x-rays of their lungs, test for HIV and diabetes, and run a battery of other general tests (which even include hearing and seeing tests). They also see a psychologist and a social worker to receive an assessment of the social factors contributing to poor health and/or barriers to treatment access.
Step 5: All of the information from the medical tests and assessments is passed on to a local committee of medical experts, along with the results of the drug susceptibility tests. This committee is charged with drawing up the patient’s treatment regimen. This committee plays a continued, crucial role in the patient’s wellbeing, as they are the only ones that can alter the drug regimen or prescribe new drugs were the patient to have a bad reaction to certain drug or experience any other difficulties or resistances. The treatment plan the committee draws up is then taken to a regular health clinic where the patient will receive their medication multiple times a day for a year and a half or more.
Thus though the process for getting all TB patients onto an efficacious
ASPAT has also played a crucial role in increasing the efficacy of this infrastructure in Peru by providing transportation services for many sputum samples within the municipality of Lima. Since Lima’s public transit system is highly chaotic and unstandardized, samples often sit for days before arriving at the requisite lab facilities when it is left up to busy general public health workers to deliver them. ASPAT’s service has made a considerable increase in the number of samples that get to labs without being contaminated or spoiled.
ASPAT believes that one of the most important elements in assuring that Peru’s TB treatment infrastructure continues to improve has to do with informing citizens about TB and reducing the stigma of talking about it
, and other communicable diseases in Peruvian society. Melecio thoroughly explained the current structure of the government and
However, there is a long way to go. Melecio says health rarely even makes the government’s priority list, and even when it does, it falls far below other issues such as citizen security, education, and public works improvements. But, this switch in governance structure allowed ASPAT to make many positive changes in Callao, as they received ownership of a number of dilapidated wooden health clinics and were then able to make much needed sanitary and hospitality improvements. Their work continues to raise the profile of social factors that contribute to poor health outcomes, such as malnutrition and over-crowded housing conditions.
Hello from Lima, Peru!
The 2014 GROW team from the University of Chicago’s GlobeMed chapter has assembled and is reporting for duty. Our goal is to assist our partner ASPAT-PERU to implement the Desayunos pilot study, developed collaboratively with our chapter. For those unfamiliar with this project, our excellent Elena Hadjimichael has written a poignant and reflective blog post that captures its practical, intellectual, and emotional dimensions. To briefly summarize, the project aims to demonstrate that tuberculosis (TB) patients can benefit greatly from nutritional supplementation to bolster their ability to fight the disease. Desayunos will provide free, nutritionist-designed breakfasts to patients already receiving care at public clinics. We hope this will alleviate the debilitating side effects of tuberculosis medication, which are often exacerbated by malnutrition, and will keep patients on their medication more consistently and prevent the development of drug-resistant TB.
For the past year, our GlobeMed chapter has been working to develop this project with ASPAT, and has campaigned to fund the pilot program during the 2013-14 academic year. We not only hope that it will be successful for ASPAT’s participating patients, but that it will also lay the groundwork for similar programs in Peruvian health clinics in the future. Tuberculosis is highly stigmatized in many countries, including Peru, which impedes eradication of this very preventable and unnecessary disease. Poverty complicates the issue further because patients must often choose between either keeping a job to support their families or taking time off to recover and medicate. We aim to show that this disease must be treated not just with antibiotics, but with time, nutrition, and social support.
As Elena so eloquently put it,
“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.”
Beyond the Desayunos project, the GROW experience is one that many of us have been looking forward to after having spent 2-3 years working with ASPAT from a distance in Chicago. It’s a way for us to concretize a partnership, give a human form to what used to be a signature in an email and a voice over Skype. GROW is also a way to tangibly and realistically understand the realities of our partner’s work in order to not only educate our chapter, but build a concrete MOU and ensure that our partnership is rooted in a dialogue of mutual, responsive understanding. For many of us, GROW is also a unique pre-professional on-the-ground public health experience, facilitated by previous connections and and project we deeply care about. All in all, GROW is learning about the second half of the equation for social change that we fundraise for all year long, and propelling forward our dedication to global health equity.
Our GROW team mission is to work on-the-ground with ASPAT to make this project a success. Follow us on this blog and our Facebook page, or by using #uchicaGROW2014.
It is, says the World Health Organization, “an extraordinary event.” Polio is spreading to a degree that constitutes a public health emergency.
The global drive to wipe out the virus had driven the number of polio cases down from 300,000 in the late 1980s to just 417 cases last year. The World Health Organization has set a goal of wiping out polio by 2018.
But this year, polio has been reported in 10 countries, and there are fears the number could rise. Bruce Aylward, the head of WHO’s polio program, says if the international spread isn’t halted, the virus could easily re-establish itself, particularly in conflict-torn countries like the Central African Republic and South Sudan. The unrest makes it difficult to sustain vaccination efforts, and poor sanitary conditions cause the disease to spread.
Although polio mainly afflicts children under 6, a WHO emergency committee has stated that adults are to blame. The committee noted that there is “increasing evidence that adult travelers [from Pakistan, Syria and Cameroon] contributed” to the polio surge.
As a result, the World Health Organization has taken the unusual step of ordering these three countries to vaccinate any resident who travels internationally. In addition, WHO is calling for the three countries to continue efforts to inoculate their children. The mandate was issued by the director-general’s Emergency Committee on International Health Regulations.
Aylward says this focus on travelers is critical to stem the virus, which causes paralysis and can be fatal
Photo: A health worker administers polio vaccine drops to a child at Karachi International Airport in Pakistan. The country’s government has set up immunization points at airports to help stop its polio outbreak from spreading abroad. (Rizwan Tabassum/AFP/Getty Images)
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!