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2018 Annual Report maya health alliance | Wuqu' Kawoq

Dear Friends,

This year, our programs and partnerships have continued to flourish, with amazing results.

Just one example is the mobile health, or mHealth, smart phone application that we developed to enable midwives to detect problems during pregnancy and connect mothers with medical care when they need it. In the three years since we piloted this app, we have seen deaths from childbirth in our service area drop from 8 to 4 to 0! We intend to expand this work, and impact, to other regions.

Monitoring mother's and baby's health.

We also continued to grow and develop our nutrition program. We laid the groundwork for a garden research project to help families grow and eat a greater variety of foods. We delivered trainings in collaboration with groups around the country. And we partnered with FUNDEGUA, The Academy of Nutrition and Dietetics, and Duke University, to develop Conéctate Guate, a national mapping project of all of the initiatives and programs addressing chronic malnutrition in this field. In addition, Al Jazeera featured Maya Health’s multi-pronged, individualized approach to combatting malnutrition in a video report, and we were invited to contribute a chapter to an important global resource, the Handbook of Famine, Starvation and Nutrient Deprivation.

garden research project

We marked 10 years with our diabetes program. Through this program, we’ve transformed the lives of hundreds of patients who otherwise would not have access to care and helped to tackle Guatemala’s exploding diabetes epidemic. We plan to continue to expand the program, particularly among poor and rural people, enabling them to better control their disease and live longer and more active lives.

Your support has propelled all of these remarkable achievements and more. I am filled with enormous appreciation and excitement about what we can do together in 2019!

With deep gratitude,

Anne E. Kraemer Diaz, Executive Director

We work in Guatemala’s most impoverished communities, solving their pressing health care needs. We overcome barriers to health–uniting medicine, culture, and language.

We believe everyone—no matter where they were born or what language they speak—should have the highest quality health care.

Annual Impact

20,000 patients served

15,000+ home visits

3,500 women provided access to reproductive health care

1,500 children treated for malnutrition

Financials

Leadership

WALESKA LÓPEZ CANÚ, Medical Director

ANNE KRAEMER DIAZ, Executive Director

Board

President: BRENT HENDERSON, Assistant Professor Gainsville, FL

Secretary: PATRICK JENNINGS, Health Care Consultant, San Francisco, CA

Treasurer: RUSSELL ROHLOFF, Engineer. Bethel, VT

Members: KARA ANDRADE, PhD Candidate, American University School of Communication; MARK DOERR, Attorney, Chicago, IL; CLAIRE MELVIN, Attorney, New York, NY; TOM MELVIN, Financial Analyst, Chicago, IL; VALERIE ROTH, Physician, Chicago, IL

Complex Care: Hidden Heros

“Is it usually like this?”

“Oh yes. This is a normal day,” Mérida explained as we stood pressed up against the wall at Roosevelt Hospital waiting for her patient, who was undergoing blood tests. It was barely six in the morning, and a line of patients extended down the hallway.

“Permiso, permiso,” yelled men in white scrubs pushing a patient prepped for surgery through the sea of people.

As the director for complex cases, Mérida acts as a bureaucratic navigator for patients requiring treatment and care in Guatemala City’s hospitals—everything from cataract surgery to ongoing cancer treatment.

“If a patient does not understand what the doctor said, I explain it to them again. Some of the doctors are understanding, but some will only explain once. Or if a patient needs paperwork done, I run to do that,” Mérida said.

After dropping off the first patient for blood work, Mérida and I made our way along the forested path from Roosevelt to INCAN, a semi-private cancer hospital, to meet with another patient awaiting her colposcopy results. In her weekly visits to these hospitals, Mérida has become an expert at navigating the labyrinth of cars, people, and vendors that extend between Roosevelt and INCAN.

“Most of the guards don’t give me trouble anymore,” she commented. “However, they haven’t let me accompany patients before when I was wearing a corte. There is still discrimination against indigenous people and indigenous dress here at hospitals in Guatemala.”

There is still discrimination against indigenous people and indigenous dress here at hospitals in Guatemala.

Like Roosevelt, INCAN was swarming with people - patients, family members, security, and medical staff. Lines extended outside the facility, where waiting patients and family members were curled up, sleeping on the steps.

Scanning the crowd, Mérida spotted her patient. The three of us weaved our way through the masses and dashed down winding hallways, barely making the appointment. The doctor shared the good news that the test results were negative and provided follow up instructions.

Hardly out the door, Mérida broke out into a smile and mini celebratory dance.

“This is great news. Did you understand all of the doctor’s instructions?,” she asked, embracing her patient.

“I live for these cases,” she said. “They make me so happy. It is always good news when a patient no longer needs me.”

It is always good news when a patient no longer needs me.

Unfortunately, not all cases are that simple or end happily. They are, after all, complex cases.

Back at Roosevelt, we met up again with the patient, who had finished her blood work. We waited with her to see the doctor. As a terminal breast cancer patient with metastasis to the lungs, she was waiting for another round of chemotherapy.

“Chemo has not been helping. It is very sad. She comes from very far and came to our organization already like this,” Mérida explained. We waited in line while her patient rested on a nearby bench.

The doctor confirmed that chemo was doing little to stop the growth and recommended a transfer to INCAN to begin radiation therapy. On a bureaucratic level, this is not an easy feat. The process requires filing another set of paperwork and making a series of photocopies to transfer everything appropriately. Only then can treatment commence.

The hospital’s bureaucracy makes it impossible for patients to receive the care they deserve, Mérida lamented. “There is so much paperwork required, and for what?”

The paperwork is hard enough for anyone dealing with a complex health condition. The challenge becomes even greater for patients who don’t speak Spanish, can’t afford the long trips to the hospital for treatment, or lack the emotional support to move forward in the face of persistent discrimination.

Although I’ve only been in Guatemala for a few weeks, I know that complex care navigators like Mérida and many others at Maya Health are the hidden heroes working to break down the inequality that still exists when it comes to accessing health care. They’re the superheroes battling against bureaucracy and discrimination to ensure that their patients receive the care they need, but more importantly, deserve.

- Sophie Kurschner, Complex Care Coordinator and research fellow

Sophie and Mérida

REPORTS FROM THE FIELD

Mobile Health: Stunning Success

More than 300,000 women a year die from complications during pregnancy and childbirth.

This problem is particularly acute among Mayan women in rural Guatemala, who typically lack access to medical care during pregnancy, and who experience discrimination when they do visit health care facilities. As a result, up to 75% of women in Guatemala’s rural communities give birth at home, typically with the assistance of midwives.

Given these realities, we have equipped midwives with a smartphone application that helps identify potential concerns to increase the likelihood that mothers and their babies will get the care they need to remain healthy throughout pregnancy and birth. Our mCare app provides checklists of maternal and newborn warning signs, and enables midwives to check vitals like blood pressure and pulse. It securely transmits the information to clinical staff and flags serious complications for follow-up. An emergency on-call team is available to provide support during the referral process. When mothers need to access hospital care, we help navigate the system.

This early detection and support enables more women to get timely care when complications arise, leading to fewer deaths of mothers and infants at childbirth.

We are heartened to report stunning results. In our small service area, the number of women who died in childbirth has dropped from 8 to in 2016 to 4 in 2017 to 0 in 2018.

We are continuing to grow this project and to scale this lifesaving model to other regions in Guatemala and beyond.

Nutrition: Building Foundations for Healthy Lives

More than 45% of children in Guatemala under five years suffer from malnutrition.

Guatemala’s Mayan population has one of the world’s highest rates of childhood stunting, or impaired growth and development; rates reach as high as 90% in some rural indigenous communities.

Malnourishment in the first two years of life affects cognitive development, education, and health later in life, increasing risks of chronic diseases like diabetes and diminishing the ability to work and participate in family and community activities.

Maya Health provides treatment for 1,500 children a year suffering from malnutrition, contributing to a 35% reduction in malnutrition in the communities where we work.

Anderson was only 20 days old when he was diagnosed with acute chronic malnutrition.

His mother had severely inflamed breasts, which prevented her from nursing, and as a result, he was drastically underweight and at serious risk of stunting and other developmental problems that could trigger lifelong consequences.

Following his diagnosis, Anderson’s family enrolled in the Maya Health nutrition program. Rosita, a local nutrition technician, visited the family at their home in rural Chimaltenango twice a month. Initially, she focused on helping Anderson’s mother by providing injections to reduce swelling in her breasts and then offering breastfeeding education. While this greatly improved Anderson’s condition, he continued to grow at a slow rate. Once he was old enough to eat solid foods, Anderson’s family began receiving a monthly allowance of eggs, beans, and Nutributter (a supplemental vitamin for children). Anderson also had regular parasite treatments, and his mother received nutrition counseling in their home to help her find ways to provide a healthy diet for her baby.

Now, at 14 months, Anderson is at a healthy weight, has a good appetite, and is very active. His mother is participating in a Maya Health nutrition class at the local health center to learn more about healthy food options. Rosita will continue to visit to monitor Anderson’s growth until he turns two, when he will graduate from the nutrition program.

Anderson is one of 1,500 children who receive treatment in Maya Health’s nutrition program each year.

We take a comprehensive, individualized approach to addressing malnutrition that combines monitoring, education, empowerment, and nutritional supports.

Our nutrition interventions include:

  • Growth monitoring
  • Micronutrient supplements
  • Deworming
  • Nutrition advice delivered at the home by Community Health Workers
  • Classes and cooking demonstrations delivered in mothers’ languages and communities
  • Women’s empowerment; building self-esteem and support among women
  • Family gardens

Diabetes Program: Marking 10 Years

With Guatemala’s growing and aging population, the number of people with diabetes is expected to double in the next 20 years, from 700,000 to 1,400,000. Despite the quickly expanding number of diabetes cases, the public health sector, chronically underfunded, has not invested in diabetes care.

So one of the first services we provided when Maya Health began was home visits to elderly indigenous patients with Type 2 diabetes in Santiago, Sacatepequez. Over the last decade, we have cared for hundreds of indigenous people with diabetes who otherwise would not have been able to access health care.

Our blend of clinical expertise, deep local knowledge, and partnerships with local organizations enables us to deliver high-quality diabetes care to 150 patients a year at the relatively low annual cost of $200 per patient.

All patients are offered free, standard-of-care services, including regular medical check-ups, home education visits, laboratory testing, medications, and supplies (including insulin and syringes), and screening for diabetes complications. Diabetes nurses provide the bulk of direct patient care under close physician supervision. We also have invested in an electronic health record and medicine procurement system that dramatically reduces costs and increases efficiency.

Our approach integrates medical care with behavior change strategies that work for rural, indigenous people. We work with local partners in each community who can provide in-kind support such as access to local community leaders or space in existing facilities. This makes it possible for us to transfer nutrition knowledge to help build local capacity and reach more patients. We have published more than a dozen scientific papers and have become one of the country’s leading experts on treating Type 2 diabetes in rural Guatemala.

We have never wavered from our vision that Guatemalans, including indigenous Maya, should be able to access quality diabetes care in their native languages. It is heartening to see that some of the same patients we visited in 2006 are still thriving today.

For many Guatemalans, diabetes is an incredibly frightening diagnosis, one that suggests years of suffering, expense, and early death. When we meet a diabetes patient for the first time, we let them know that they can still live a long and happy life; that there is no reason that they cannot see their children, grandchildren, and great-grandchildren grow up.

STAFF PROFILES

Andrea Paola Guzman

Andrea manages our internationally recognized nutrition program and coordinates our community gardens pilot study.

She spends her days working with our nutrition clients, monitoring growth in the critical first years, and helping families learn about healthy diets and food preparation. She focuses on acute cases in which children are recovering from severe malnutrition, and on complex cases in which patients have suffered from serious illness and need nutritional follow-up. While the work is challenging, she also finds it enormously rewarding, especially when she is able to see children grow and thrive. Andrea believes that supporting mothers is a key factor in combating malnutrition since these women often face daily barriers to providing and preparing healthy food for their families, from lack of resources to domestic abuse.

Thanks to Andrea’s excellent leadership, our programs continue to flourish and improve lives in rural Guatemala. This year, the US Academy of Nutrition recognized Andrea with the Wimpfheimer-Guggenheim Competitive Essay Award for her paper on our nutrition program.

We are so thankful for all of Andrea’s hard work and feel very lucky to have her on the team.

Glenda Angelica Gomez

I’m sitting with Glenda, a member of Maya Health’s Women’s Health and Chronic Disease teams, in her kitchen after a long day of home visits in the Boca Costa. Thunder from the incoming rainstorm rumbles in the distance and cumbia music blasts from a neighboring home as she tells me her story.

Like many other women growing up in Guatemala, Glenda was told from a young age that she couldn’t. She could not keep studying because she was a woman. She could not complete first aid certification because she had to support her male siblings. But Glenda continued to look for opportunities to continue her education. “Finally, after much insistence on my part, my parents allowed me to study and I earned a degree in primary education,” she said. She had to fund herself by selling drawings, purses, and backpacks, but was able to pursue her dream of higher education.

At 20, Glenda began working as an educator for Maya Health’s clean water program, teaching families about our point-of-use water filters. As time went on, she developed an interest in nursing and was able to study part-time while continuing to work. Now, ten years later, Glenda is a registered nurse who brings compassionate care to Maya Health patients in Boca Costa.

“I don’t see my patients as patients. I see them as my brothers and sisters and I listen intently every time they speak about their lives. I learn a lot from that,” she said.

Glenda uses the knowledge she gained from Maya Health to complement what she learned in school, and is now respected in her family and around her neighborhood as a health expert. Neighbors routinely visit her house with questions about medicine or for consultations.

Maya Health injects us with confidence. Maya Health teaches us that we can.

I asked Glenda to describe the best part of Maya Health. With a bright flash of a smile, she responded “Maya Health injects us with confidence. Maya Health teaches us that we can.”

- Leah Shaw, Maya Health Research Fellow

2018 Publications

Martinez B, Cardona S, Rodas P, et al. Developmental outcomes of an individualised complementary feeding intervention for stunted children: a substudy from a larger randomised controlled trial in Guatemala. BMJ Paediatr Open 2018;2(1):e000314.

Colom M, Austad K, Sacuj N, et al. Expanding access to primary healthcare for women through a microfinance institution: A case study from rural Guatemala. Healthc (Amst) 2018;6(4):223-30.

Flood D. Poverty, Genocide, and Superbugs: A Carbapenem-Resistant Wound Infection in Rural Guatemala. Am J Trop Med Hyg 2018;99(3):561-62.

Colom M, Rohloff P. Cultural considerations for informed consent in paediatric research in low/middle-income countries: a scoping review. BMJ Paediatr Open 2018;2(1):e000298.

Austad K, Shah P, Rohloff P. Correlates of long-acting reversible contraception uptake among rural women in Guatemala. PLOS One 2018; doi.org/10.1371/journal.pone.0199536

Martinez B, Ixen EC, Hall-Clifford R, Juarez M, Miller AC, Francis A, Valderrama CE, Stroux L, Clifford GD, Rohloff P. mHealth intervention to improve the continuum of maternal and perinatal care in rural Guatemala: a pragmatic, randomized controlled feasibility trial. Reproductive Health 2018;15:120.

Austad K, Chary A, Xocop SM, Messmer S, King N, Carlson L. Rohloff P. Barriers to Cervical Cancer Screening and the Cervical Cancer Care Continuum in Rural Guatemala: A Mixed-Method Analysis. J Glob Oncol 2018 July:(4)1-10. doi: 10.1200/JGO.17.00228.

Martinez B, Webb MF, Gonzalez A, Douglas K, Grazioso MdP, Rohloff P. Complementary feeding intervention on stunted Guatemalan children: a randomised controlled trial. BMJ Paediatrics Open 2018;2.

Flood D, Chary A, Austad K, Coj M, Lopez W, Rohloff P. Patient Navigation and Access to Cancer Care in Guatemala. J Glob Oncol 2018:1-3.

Flood D, Chary A, Colom A, Rohloff P. Adolescent rights and the “first 1,000 days” global nutrition movement: A view from Guatemala. Health and Human Rights Journal 2018 Jun;20(1):295-301.

Webb MF. Transnational Migration’s Psychosocial Impacts for Kaqchikel Maya Migrants’ Wives. Human Organization 2018;77:32-41.

Moore J, Garcia P, Rohloff P, Flood D. Treatment of end-stage renal disease with continuous ambulatory peritoneal dialysis in rural Guatemala. BMJ Case Reports 2018: online first.

Flood D, Rohloff P. Indigenous language and global health. Lancet Glob Health 2018 Feb;6(2):e134-135.

Flood D, Garcia P, Douglas K, Hawkins J, Rohloff P. Screening for chronic kidney disease in a community-based diabetes cohort in rural Guatemala: a cross-sectional study. BMJ Open 2018 Jan 21:8(1):e019778.

Colom M, Austad K, Sacuj N, Larson K, Rohloff P. Expanding access to primary healthcare for women through a microfinance institution: A case study from rural Guatemala. Healthc (Amst). 2018 Feb 7.

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