CKD in Guatemala

Guatemala is an LMIC in Central America with a population of 16 million people. While the epidemiology and risk factors for renal disease are not well understood in Guatemala, available evidence including from the Global Burden of Disease Study suggests that, as in other LMICs, the burden of CKD is significant and rising.1 2 WHO estimates that renal failure mortality in Guatemala in 2007 was 24.7 per 100 000 people, one of the highest rates in the Americas.3 In the Latin American region, diabetes has been identified as the leading cause of CKD requiring dialysis, and, as of 2013 in Guatemala, 30% of new patients requiring renal replacement therapy had diabetes.4 Our organisation previously reported high rates of CKD in a rural diabetes cohort,5 6 data which were consistent with evidence from Mexico showing a strong link between diabetes and renal cause of death.7

For the patient in this case, the aetiology of CKD remains unknown, and a wide differential includes diabetic nephropathy, nephrotoxic exposure, chronic nephrolithiasis, chronic UTIs and other causes. The patient has a 6-year history of uncontrolled diabetes and has experienced diabetes complications such as hyperglycaemic crisis and severe peripheral neuropathy. However, he does not meet criteria for diabetic kidney disease given that he had no history of diabetic retinopathy, did not have severely increased albuminuria (previously known as macroalbuminuria, ACR >300 mg/g) and had a more rapid progression of renal disease than would typically be expected from diabetes alone.8 He also did not have a history or laboratory evidence suggestive of other common causes of ESRD—including hypertension, UTIs or nephrotoxic ingestion. Although echogenic foci were found on renal ultrasound, the pattern was not consistent with nephrocalcinosis, and the presence of non-obstructing kidney stones without hydronephrosis in a patient denying a history of symptoms of renal colic makes chronic nephrolithiasis seem less likely as the primary aetiology for his CKD.

In recent decades, there has been an increasing incidence of renal disease of uncertain aetiology in Central America observed in male agricultural workers in coastal areas. This entity has been termed ‘CKD of non-traditional aetiology’ (CKDnT) and is a source of active research throughout the region. The Pan American Health Association (PAHO) recently released a report on CKDnT epidemiology, consensus case definitions and methods for surveillance.9 In Guatemala, dialysis enrolment rates may be higher along the southwestern coast.10 11 However, epidemiological studies using dialysis registries are susceptible to confounding as indigenous Maya people, like this patient, tend to live in highland rather than coastal towns and also face barriers to accessing dialysis.12 The patient described in this case does not meet PAHO technical criteria for a ‘confirmed clinical case of CKDnT’ given the presence of diabetes with diabetic neuropathy.9

Renal replacement therapy in rural Guatemala

Once a person develops ESRD, the only means of survival are through renal replacement therapy, which includes dialysis—haemodialysis or peritoneal dialysis—or renal transplantation. Like other nephrology-related medicines and technologies, renal replacement therapy is unequally distributed around the world. Millions of people die prematurely each year because they cannot access dialysis or transplantation, particularly in LMICs.13 14 Even among those who can access renal replacement therapy, there are significant outcome disparities by socioeconomic status and geography.13 15 16

Kidney transplantation confers survival and quality of life advantages over dialysis.17 The first renal transplantation programme in Guatemala was launched in the 1980s in the Social Security health system.18 In 2015, according to data from the National Nephrology Association, there were 117 total kidney transplantations: 68% were performed in the public sector, 15% of transplant recipients were children and 17% involved deceased-donor kidneys.19 The overall renal transplantation rate in Guatemala in 2013 was 5.6%, which is lower than the overall rate in Latin America of 19.8%.4 Barriers to expanding access to renal transplantation include limitations in public sector funding, lack of structured waiting lists, incomplete coverage of post-transplant immunosuppression therapy, opt-in organ donation laws and minimal health protection for living donors.20

In Latin America, rates of dialysis are rising sharply, and haemodialysis is the modality of choice in 90% of cases.4 Guatemala is unique in that more than half of dialysis patients undertake peritoneal dialysis, giving the country one of the highest per capita rates of peritoneal dialysis in the world.21 The public nephrology centre, UNAERC, manages a dialysis caseload of approximately 4500 people, of which two-thirds use CAPD.22 Advantages of CAPD over haemodialysis include allowing rural patients to undertake therapy in their homes, requiring less infrastructure or specialised staff and not depending on the availability of rationed machines.23 Rural CAPD programmes have been reported in multiple LMICs.24–26

Patients at UNAERC receive, free of charge, all supplies directly necessary for CAPD: expert nephrology consultation, catheter insertion and maintenance, dialysis solution and laboratory monitoring of dialysis function. Basic survival is the chief concern. Unfortunately, UNAERC is unable to fund treatment for many sequelae of ESRD such as anaemia, mineral bone disease, hypertension, metabolic acidosis or dyslipidaemia. Additionally, the rural public healthcare system is not adequately equipped to meet the considerable primary healthcare concerns of patients with ESRD, which may include insomnia, pruritus, diabetes, hypertension, neuropathy, diarrhoea, sexual dysfunction and depression.

Systemic barriers to primary care in rural Guatemala

The Guatemalan healthcare system is marked by extreme fragmentation, privatisation and inequity.12 The rural public healthcare system was established following the 1996 Peace Accords, which formally ended a 36-year civil war. The system was designed primarily to deliver basic preventative services to mothers and children.27 While the disease landscape has shifted considerably since 1996, with chronic conditions comprising an increasingly significant burden, the health system has not been reoriented to this new epidemiology. Overall, the public health system in Guatemala is persistently underfunded; as a per cent of GDP, the country has the lowest government spending on health in Central America.28

Like the patient in this case report, over half of Guatemalans are indigenous Maya, a group that faces formidable socioeconomic, linguistic and geographic barriers to healthcare.12 Indigenous populations have high rates of poverty, limited access to education and poor health as measured by a range of indicators including infant mortality, child malnutrition and access to prenatal care.29 The most reliable data on health disparities between indigenous and non-indigenous people derive from reproductive health surveys, which generally suggest that such poorer health indicators in indigenous groups are not solely explained by poverty and rural residence.29 There are limited studies on the prevalence and outcomes of diseases like diabetes, cancer or CKD in indigenous areas. Available data show that ethnic disparities exist in both paediatric and adult populations.30–32

In theory, all Guatemalans can access primary healthcare either within the network of free clinics and hospitals operated by the Ministry of Health (MOH), through a system of employment-based insurance at designated facilities, or at military hospitals. However, in reality, only a small proportion of the population has public or private insurance, particularly in rural areas, and MOH healthcare is limited by resource constraints. For example, patients at MOH health centres may be sent to purchase basic medications or laboratory tests, and certain resources like insulin are typically only available at regional referral hospitals. With these shortcomings in the public health system, many Guatemalans seek care in the private sector. While private sector care is considered more responsive than care delivered at public health centres, private care is expensive and fragmented. In general, the poorest and most marginalised patients are unable to access regular primary care for chronic diseases like diabetes or CKD.

This case illustrates many of the major challenges in accessing chronic disease care for both diabetes and CKD in rural Guatemala. Prior to seeking care at the non-profit clinic, the patient had entered a sickness-poverty cycle due to uncontrolled diabetes: he became too sick to work, then too poor pay for quality healthcare and medications and consequently he became even sicker. On developing CKD, there was no coordination between the public nephrology clinic and his local health centre and no primary care infrastructure to manage his associated symptoms and conditions. His indigenous ethnicity may have also contributed to his poor diabetes control and difficulty accessing high-quality primary care services.

While strengthening the rural public health system would be the most powerful approach to improve primary care in rural Guatemala—and to thereby both prevent and manage chronic disease—in the current political and economic environment, it is difficult to imagine the government dramatically increasing public outlays for chronic disease care. Care coordination and intensive social work interventions are potential strategies to assist patients with ESRD and other complex care needs, and there are examples of such programmes in Guatemala.30 31 33 34 However, scaling up such interventions would require massive philanthropic or public sector investments.

The patient in this case is fortunate to live in a country providing public dialysis services to impoverished patients with ESRD from rural areas. Nevertheless, although dialysis has prolonged his life, this therapy has not necessarily nurtured his quality of life. With a national kidney transplantation rate of less than 6%,4 most Guatemalans with ESRD, like the patient in this case, have no reasonable hope for life beyond dialysis. We therefore should consider what makes life worth living for those able to successfully access dialysis in places like rural Guatemala.

Lived experiences of ESRD

The typical trajectory of ESRD resembles those of other organ failures: chronic, progressive debility interposed by episodes of acute decompensation, with death often sudden and unexpected. Like the patient in this report, people on dialysis can survive for years during which they may endure fatigue, weakness, pruritus, insomnia, pain, depression and functional impairment—in addition to the symptom burdens of comorbid conditions. These patients must adhere to a demanding dialysis regimen in order to live, yet they cannot be certain what their lives will entail or how long they will survive.

The patient in this case is a poor, indigenous man whose chronic illnesses have limited him from employment as a construction worker. He lives in Guatemala, a nation infused with legacies of colonialism, racism and oppression. Historically, indigenous people have been viewed by the state primarily as a resource from which to extract unpaid physical labour for the production of commodities and public works.35 Today, while indigenous people in Guatemala have more rights than in previous generations, the indigenous poor still often sell their labour in the informal economy. Rural men, like this patient, learn to maintain strong bodies to augment their labour potential and their ability to provide for their families. Hence, conditions of poverty and marginalisation lead to chronic illness and impairment, and also cause chronic illness and impairment to be felt more severely.36

Chronic diseases like ESRD often preclude patients from fulfilling expected roles and may result in altered social identities and self-concepts.37 The patient in this report tearfully described feeling like ‘a little baby’ unable to provide for his family or carry out basic activities of daily living without assistance from his wife and children. Indeed, those facing illness and impairment may perceive a loss of status within their families and communities, especially when moral worth is tied to a masculinity grounded in strength, endurance and the ability support others—as is common for men in rural Guatemala. Patients on dialysis may also endure tedium—an emptiness of time—as their treatment regimen ‘threatens to overcome, and for some patients, to become the life it extends.’38 The patient in this report has found meaning and joy being with his children, singing and praying, but others may not be similarly incorporated into family and community life.

As described in this report, patients on dialysis face significant social and occupational limitations from their time-consuming yet life-supporting treatment. Given the rising number of patients on dialysis in Guatemala and elsewhere who will never receive a kidney transplant, ‘health-related quality of life’—how patients perceive illness and treatment to affect their physical, mental, spiritual, emotional, social and functional well-being—has become an important dialysis outcome measure.39 Standardised instruments have not been validated in most LMICs, where the focus is more often on basic treatment provision and survival.40 Nonetheless, for patients on dialysis, poor health-related quality of life,41 discrepancies between expected and received social support42 and depressive symptoms43 have each been found to be associated with increased mortality.

As with other chronic conditions, the impacts of ESRD are not limited to a single patient but rather permeate households and communities. Patients who once earned wages to support their families can no longer work, requiring household roles to shift to replace lost incomes. Furthermore, chronic illnesses like ESRD entail direct costs for medical treatment and indirect costs such as the uncompensated labour of family members who provide caregiving. In countries like Guatemala without universal disability or health insurance programmes, those in poverty are exquisitely sensitive to out-of-pocket catastrophic health expenditures.44 The patient in this case has successfully performed dialysis for multiple years, in part due to material support received from a local church, extended family and a non-governmental organisation. Other ESRD patients in poverty who lack such support are unlikely to successfully access and sustain dialysis in Guatemala.

In addition to providing resources and basic income, the families and communities of patients with ESRD must often provide intimate care, including feeding, bathing, grooming, dressing and toileting. Although gender roles are shifting,45 46 in rural Guatemala, as in many cultures, there is a gendered division of labour in which women perform reproductive labour in the private sphere—including tending to the young, elderly and sick—and men perform productive labour in the public sphere.47 For the man in this case, his wife provides him constant and intimate care, and also works to generate income to provide for their four children.

In summary, the rising rate of patients with ESRD in LMICs will require rapidly scaling up nephrology care and interventions like dialysis and renal transplant. As this case illustrates, comprehensive ESRD care also must include access to primary care, mental healthcare and social work services.