A Role for NGOs in Cancer Care in Latin America: Patient Accompaniment

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Peter_Rohloff
Peter Rohloff has training in parasitology, internal medicine and pediatrics. He practices in Boston, MA at Brigham and Women's Hospital and Boston Children's Hospital. Since 2003, Peter has been working in Guatemala, where he serves as the medical director for a health systems NGO – Wuqu’ Kawoq | Maya Health Alliance. Peter’s interests include the management of chronic diseases of children and adults in resource poor settings and how indigeneity, cultural, and language barriers impact access to and utilization of health care. @wuqukawoq
José translates instructions about how to take anti-nausea medications after chemotherapy into Dominga’s native language, Kaqchikel.

José translates instructions about how to take anti-nausea medications after chemotherapy into Dominga’s native language, Kaqchikel.

This is a guest post by Anita Chary. Anita is an MD/PhD student in anthropology at Washington University in St. Louis. She is also the research director for Wuqu’ Kawoq | Maya Health Alliance.

Cancer rates are rapidly rising in Latin American countries, according to a recent report published in the Lancet [1]. Low- and middle-income countries of Latin America have a lower overall prevalence of cancer, but higher cancer death rates, than developed nations. This disparity can be largely explained by several common themes in cancer care provision throughout Latin America: late diagnoses, poor access to treatment, and limited availability of efficacious therapies.

Guatemala faces many of the challenges that beset Latin American countries in cancer care. Geographic, economic, and linguistic barriers conspire to restrict access to cancer therapy for a large portion of the population. Guatemala’s National Cancer Hospital [Instituto de Cancerología, INCAN], the nation’s only institution that provides cancer care to the public sector, is located in the capital, Guatemala City. Patients living in other areas of the country—particularly rural areas—must travel anywhere from several hours to several days to reach the hospital. Although INCAN receives some funding from the Guatemalan Ministry of Health to offset the costs of patients’ initial laboratory exams and diagnostic procedures, patients must pay for the majority of their treatment costs, which are all too often prohibitively expense. While the majority of Guatemala’s population is indigenous and 23 indigenous languages are spoken in the country [2], all services at INCAN are delivered in Spanish. On top of these issues, the hospital itself suffers from an enormous backlog of 1200+ patients on the waiting list for radiotherapy services. These problems are intimately linked to poor follow-up care and patient retention rates. According to the director of the hospital, Dr. Walter Guerra, 33% of patients who receive a cancer diagnosis at INCAN never begin treatment; 33% of patients start, but do not finish, therapy; and only 33% of patients complete the recommended course of therapy. These statistics are worse for indigenous patients with cancer, 50% of whom never begin treatment after initial diagnosis.

In the midst of these challenges, the non-governmental sector has come to represent an important source of health care for many Guatemalans [2-4]. In Guatemala alone, there are an estimated 10,000 to 15,000 non-governmental organizations [NGOs], many of which are involved in health care provision to varying degrees [2]. Other Latin American countries, such as Bolivia, El Salvador, and Mexico, have experienced similar explosions in the NGO sector in recent years, in light of global economic policies encouraging the privatization of social services [5-7].

Private sector health organizations could play a crucial role in increasing the number of patients who make it all the way through treatment. Take the case of Dominga Puac*, a 60-year-old woman who was diagnosed with cervical cancer three years ago. Dominga is a monolingual speaker of the Mayan language Kaqchikel. She lives in a small adobe house in a rural hamlet of the highland town of San Juan Comalapa, and supports herself through subsistence agriculture, farming a small plot of land adjacent to her home. In 2010, Dominga began to experience vaginal hemorrhage. After seeking care at the local government health center in San Juan Comalapa, Dominga was referred to INCAN.

Public transportation from Dominga’s village to San Juan Comalapa is only available once a week, and as such, Dominga planned well in advance the four-hour journey to the capital. When she arrived at INCAN for an initial consultation, she barely understood what the Spanish-speaking doctors there told her. She completed required initial laboratory exams, whose costs were already beyond her means, only to receive a staggering estimate of treatment costs for several thousand quetzales—more money than she sees in one year. Lacking the ability to pay for the services, she did not return to INCAN for her first chemotherapy appointment.

Over the next year, the hemorrhage worsened. Dominga grew increasingly concerned and desperate. With the help of relatives and village officials, Dominga reached out to Maya Health Alliance, a non-governmental organization (NGO) that sponsors a nutrition and primary health care program in a nearby village. After initial evaluation by a physician, Dominga was enrolled in the NGO’s Complex Care Program, which attends to rural patients with specialized health care needs ranging from pediatric heart surgeries to dialysis to cancer care. Through this program, Maya Health Alliance currently funds treatment for about 75 patients who require treatments in tertiary care centers in Guatemala City. Sometimes, the costs of treatment are covered in conjunction with other NGOs or charities, and local Guatemalan institutions collaborate with Maya Health Alliance by offering services at- or marginally above-cost.

Addressing economic barriers to care, however, is only one component of Maya Health Alliance’s Complex Care Program. Fulltime staff member José Cali works to address the cultural and logistical barriers to care, which would otherwise represent formidable obstacles for patients from rural and indigenous areas of Guatemala. José, who is bilingual in Kaqchikel and Spanish, takes care of the nitty-gritty details of scheduling consultations, transportation, and language interpretation.

Staff member José Cali begins his day at INCAN by reviewing the cases of the six patients whose care he will be managing for the day.

Staff member José Cali begins his day at INCAN by reviewing the cases of the six patients whose care he will be managing for the day.

In Dominga’s case, for example, José arranges her medical appointments at INCAN and reminds her of them, days in advance and the day before, encouraging her to attend. As José drives to the capital on a daily basis from a nearby highland town, he provides Dominga with transportation for her chemotherapy and radiotherapy sessions. He attends consultations with Dominga, translating physicians’ questions into Kaqchikel for Dominga, and translating Dominga’s responses into Spanish for physicians, clarifying doubts on both ends and ensuring adequate patient-provider communication. When Dominga, who cannot read or write, is sent to obtain exams and procedures in different departments of the hospital, José navigates the complex with her to ensure that she ends up in the correct place. And between treatments, José calls Dominga to inquire about her health; he arranges for a health care provider of Maya Health Alliance to conduct a home visit in case of medical complications, and he follows up with any required laboratory work or hospitalizations. To date, Dominga has gone through several rounds of chemotherapy and is recovering quite well.

The philosophy of patient accompaniment has long been recognized by health organizations, such as Partners in Health and the American Cancer Society, as a crucial step towards breaking down barriers to care for impoverished and underserved patients. In the realm of cancer care, a handful of other NGOs in Guatemala with similar programming to that of Maya Health Alliance can attest to this fact. Even when NGOs do not fund patients’ therapy or provide only partial funding, the logistical support in transportation, communication, and follow-up visits that they offer can spell the difference between a patient abandoning and finishing cancer treatment. By accompanying patients through care, non-governmental organizations could play an important role in reducing cancer disparities and deaths in Guatemala and, more broadly, Latin America.


References
[1] Lancet Oncology. 2013. Abstract. 14:391-436.
[2] Rohloff, P, Kraemer Díaz, A, and Dasgupta, S. 2011. “Beyond development”: A critical appraisal of the emergence of small health care non governmental organizations in rural Guatemala. Human Organization 70(4):427-437.
[3] Maupin, JN. 2009. “Fruit of the Accords”: Health Care Reform and Civil Participation in Highland Guatemala. Social Science and Medicine 68(8):1456-63.
[4] Cardelle, AJ. 2003. Health Care Reform in Central America: NGO-Government Collaboration in Guatemala and El Salvador. Miami, FL: North-South Center Press.
[5] Gill, L. 2000. Teetering on the Rim: Global Restructuring, Daily Life, and the Armed Retreat of the Bolivian State. New York: Columbia University Press.
[6] Smith-Nonini, S. 2010. Healing the Body Politic: El Salvador’s Popular Struggle for Health Rights from Civil War to Neoliberal Peace. New Brunswick, New Jersey: Rutgers University Press.
[7] Schneider, SD. 2010 Mexican Community Health and the Politics of Health Reform. Albuquerque, NM: University of New Mexico Press.

*Pseudonym.
Dominga and José gave permission for their photos to be used in this post.

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