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Roadblocks in Chagas disease care in endemic and nonendemic countries: Argentina, Colombia, Spain, and the United States. The NET-Heart project

['Andrés F. Miranda-Arboleda', 'Cardiology Department', 'Pablo Tobón Uribe Hospital', 'Medellín', 'Division Of Cardiology', 'Kingston Health Science Centre', 'Queen S University', 'Kingston', 'Ontario', 'Ezequiel José Zaidel']

Date: 2022-02 

Multiple barriers negatively impact the prognosis of CD. Identification of these roadblocks both nationally and globally is important to guide development of appropriate policies and public health programs to reduce the global burden of this disease.

This is a nonsystematic review of articles published in indexed journals from 1955 to 2021 and of gray literature (local health organizations guidelines, local policies, blogs, and media). We classified barriers to access care as (i) existing difficulties limiting healthcare access; (ii) lack of awareness about CD and its complications; (iii) poor transmission control (vectorial and nonvectorial); (iv) scarce availability of antitrypanosomal drugs; and (v) cultural beliefs and stigma. Region-specific barriers may limit the implementation of roadmaps and require the application of tailored strategies to improve access to appropriate care.

Chagas disease (CD) is endemic in Latin America; however, its spread to nontropical areas has raised global interest in this condition. Barriers in access to early diagnosis and treatment of both acute and chronic infection and their complications have led to an increasing disease burden outside of Latin America. Our goal was to identify those barriers and to perform an additional analysis of them based on the Inter American Society of Cardiology (SIAC) and the World Heart Federation (WHF) Chagas Roadmap, at a country level in Argentina, Colombia, Spain, and the United States, which serve as representatives of endemic and nonendemic countries.

Chagas disease (CD) has been described as an epidemic in Latin America, but its geographical influence is global. One of the biggest challenges in providing care for patients with CD is to improve access to early diagnosis and treatment in order to avoid chronic cardiovascular and gastrointestinal complications. However, different roadblocks interfere with the optimal care of these patients, which facilitates disease progression. While some barriers to care are global in scope, there are additionally national and even local obstacles for patients with CD. Appropriate delineation of these barriers will allow for the development of targeted interventions to improve the outlook for CD patients in both endemic and nonendemic countries alike.

Copyright: © 2021 Miranda-Arboleda et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Citation: Miranda-Arboleda AF, Zaidel EJ, Marcus R, Pinazo MJ, Echeverría LE, Saldarriaga C, et al. (2021) Roadblocks in Chagas disease care in endemic and nonendemic countries: Argentina, Colombia, Spain, and the United States. The NET-Heart project. PLoS Negl Trop Dis 15(12): e0009954. https://doi.org/10.1371/journal.pntd.0009954

The SIAC’s NET-Heart project is a program that evaluates current evidence about NTDs and other infectious diseases with cardiac manifestations [ 4 ]. Gathering experts from the SIAC-WHF roadmap and NET-Heart project, we aimed to analyze and classify current barriers for optimal care for CD in endemic and nonendemic countries.

Argentina and Colombia are 2 upper-middle-income countries that have had resources and programs for the eradication of CD for decades. Spain is a nonendemic country, but large-scale immigration from endemic countries in Latin America has introduced CD and transmission by nonvectorial routes. Finally, there has been a growing understanding that CD poses an important problem in the United States (US), chiefly as a disease in immigrants, but also with an as-of-yet incompletely understood burden of domestically acquired disease [ 3 ].

Chagas disease (CD) is both preventable and treatable; however, the number of infected individuals worldwide remains approximately 6 to 7 million. Numerous barriers to care are responsible for this impressive figure ( Fig 1 ) [ 1 ]. In a recent document, the Inter American Society of Cardiology (SIAC) and the World Heart Federation (WHF) delineated the obstacles to providing effective care for this neglected tropical disease (NTD) [ 2 ]. That document functioned as a frame of reference and was not intended to address country-specific barriers.

We performed a nonsystematic review of literature published in indexed journals from 1955 to 2021 and a selection of gray literature including abstracts, local guidelines issued by health entities, blogs, media, and local policies. Lists of references were used to complete the search. Experts representing SIAC NET-Heart project [ 4 ] and the WHF Roadmap [ 2 ], from 2 endemic countries (Argentina and Colombia) as well as 2 nonendemic countries (Spain and the US) performed a detailed analysis of national barriers based on data identified, knowledge of the disease, and local context. Barriers were classified, and potential solutions were proposed.

Results

Current situation of CD in Argentina In Argentina, a marked decrease in vectorial transmission has been achieved since the early 1990s via the international collaborative project INCOSUR [7]. Despite this, Argentina is the country where most CD patients live worldwide, with approximately 1 case of CD for every 27 Argentinians [2]. Health personnel are chiefly located in cities where there are not vectors (“vinchucas”), and have little awareness of CD, so it remains undiagnosed for decades [2]. Rural-to-urban migration and the reduction of vectorial transmission have made vertical transmission the main route of infection in the country. In local estimates, the proportion of pregnant women with positive Chagas serology was significantly reduced over time, but the proportion of infected neonates remained stable [8]. Diagnostic lab tests have variable accuracy, even in blood banks, where CD screening is mandated and must then communicated to a seropositive donor [9]. However, there is no oversight for this screening process, and positive cases may not receive either confirmation or access to treatment. Currently, in Argentina, both adult dose and pediatric dose benznidazole is produced domestically and is widely available; it is also exported internationally. Nifurtimox, however, is imported, and its supply is interrupted intermittently. A pediatric dosage is under development in the country [10]. Recently, the Ministry of Health published updated guidelines for the diagnosis and management of CD [11]. Unfortunately, these recommendations have not been fully disseminated or implemented, mainly due to fragmented provincial legislation and a concomitant shift in focus away from Chagas due to the Coronavirus Disease 2019 (COVID-19) pandemic. Gastrointestinal complications are infrequent in Argentina, but simultaneously underrecognized. Cardiovascular complications are widely recognized in both endemic areas and in urban centers. Nevertheless, because of the lack of a strong Chagas-specific evidence base, uncertainty about the efficacy of pharmacologic and device therapy for Chagas heart disease compared to other heart diseases means a lack of a “standard of care.” One of the main determinants of the persistence of CD is that it is neglected by most policy makers. The budget for CD was less than 3% of what is allocated to political publicity campaigns and governmental events, and of what is allocated, less than 50% is implemented. CD requires long-term health policies that are difficult to implement in a rapidly changing political scenario [12].

Current situation of CD in Colombia In Colombia, it is estimated that 2% of the population has CD, with regional rates as high as 7%. The most affected age group are working-aged adults. Universal screening for CD in blood donors has been mandated by law since 1995, and seroprevalence based on blood bank data is approximately 0.5% [13]. Zones of higher prevalence are characterized by domestic and peridomestic cycles of T. cruzi, higher rates of natural infection in triatomines, and nonhuman mammal species that serve as natural reservoirs [13]. As an endemic country, vectorial transmission continues to be a problem, with rates up to 23.1 cases/1,000 habitants in high-endemicity locales. Appreciation of the importance of oral transmission has increased in urban and rural areas; outbreaks around the country have been attributed to ingestion of beverages or food contaminated with T. cruzi. Oral infection causes a more severe acute presentation, with rapid evolution to complications such as myocarditis, and is associated with increased mortality [14]. Since the inception of the national CD control program in 1996, Colombia has continuously made efforts to control CD: Program goals are to clarify the national epidemiological status; identify the distribution of vectors, index of domiciliary infection, rates of infection in school children, and conditions of housing; and prioritize efforts to control the disease. In 2007, the Ministry of Social Protection updated the National Guidelines for the diagnosis and management of patients with CD [15]. Eradication of CD has been an area of interest for the Colombian government; the country is part of the Andean Initiative to Control Vectorial and Transfusional Transmission of CD and Medical Care of CD (IPA). Due to this initiative, by 2018, Colombia achieved interruption of vectorial transmission in more than 23 municipalities and 4 departments [16,17]. Colombia is currently implementing the Strategy for the Integrated Management of Health Promotion, Prevention, and Control of Vector-Transmitted Diseases for 2012–2021, which aims for a reduction of 40% of social, clinical, and economic consequences of vector-borne diseases including CD [18].

Current situation of CD in Spain According to the Spanish National Institute of Statistics, the number of foreign nationals living in Spain exceeded 5 million in 2020 [19,20]. Over the last 20 years, there has been an exponential increase in the number of migrants from Latin America, and many diagnoses of CD have been reported in an area considered to be nonendemic, which challenges the concept of endemicity itself. Spain is currently the European country with the greatest number of estimated cases of CD in absolute numbers (between 48,000 and 86,000 people) [21] and in percentage (between 2.7% and 4.9% of the Latin American population) [22]. Prior analyses of barriers to care in CD have highlighted a lack of knowledge among health professionals, but there are few studies evaluating awareness of CD among healthcare professionals. Based on the study by Ramos-Rincón and colleagues, the level of knowledge of CD among healthcare professionals and students in a specific territory in Spain was adequate but could be improved [23]. One of the main challenges in Spain is the significant underdiagnosis of the disease. Despite evidence suggesting the cost-effectiveness of screening [24], it is voluntary and is not widespread in Spain. National regulation regarding screening in pregnancy to prevent congenital disease has been established, and in autonomous regions like Catalonia and Valencia, control measures for T. cruzi infection in pregnant women at risk and control programs of newborns have already been approved [25]. Spain’s ministry of health requires screening for T. cruzi infection before organ donation from immigrants as well as children born to mothers from endemic countries [26]. Clinical guidelines and consensus documents have been published to provide protocols for the care of chronic Chagas cardiovascular and digestive disease. [27–30] Recommendations about the management of CD in primary care [31] and in the immunosuppressed patient have also been published [32,33]. The 2 antiparasitic drugs used currently to treat T. cruzi infection (benznidazole and nifurtimox) are available in Spain. However, because they are imported, there is limited access due to (1) requirement that a hospital-based pharmacy disburse the medication; and (2) bureaucratic procedures that delay the immediate start of treatment [34]. Several studies focus on the social dimension of CD and describe the complex psychosocial barriers [35]. CD diagnosis has caused social and labor discrimination in endemic countries, and at-risk individuals postpone diagnosis/treatment due to lack of economic resources, fear, and even the lack of interest of some toward a disease that manifests mainly in the long term [35]. In nonendemic countries, migrants at risk for CD face similar concerns [36,37]. People residing legally in Spain have access to universal healthcare through the National Health System, theoretically facilitating treatment, but barriers such as work schedules, legal issues, language barriers, unfamiliarity with rights, social exclusion, and direct and indirect discrimination hinder their care [38]. During the last decade, as these barriers have been identified, patient advocacy organizations have organized to demand easier access to care for individuals with CD [39,40].

[END]

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