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      Leishmaniasis patients' pilgrimage to access health care in rural Bolivia: a qualitative study using human rights to health approach

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          Abstract

          Background

          Leishmaniasis is a neglected tropical disease endemic in Bolivia that disproportionately affects people with little social and political capital. Although the treatment is provided free of charge by the Bolivian government, there is an under-utilization of treatments in relation to the estimated affected population. This study explores the experiences of patients with leishmaniasis and the challenges faced when searching for diagnosis and treatment in Bolivia using a human rights approach.

          Methods

          We conducted open-ended interviews with 14 participants diagnosed with leishmaniasis. The qualitative data were analysed using thematic analysis and were interpreted under a human rights approach to health care.

          Results

          Four themes emerged during data analysis: (1) the decision for seeking a cure takes time; (2) the severity of symptoms and disruption of functioning drives the search for Western medicine; (3) the therapeutic journey between Western and traditional medicine; and (4) accessibility barriers to receive adequate medical treatment. This study showed that access to health care limitations were the most important factors that prevented patients from receiving timely diagnosis and treatment. Cultural factors played a secondary role in their decision to seek medical care.

          Conclusions

          Accessibility barriers resulted in a large pilgrimage between public health care and traditional medicinal treatments for patients with leishmaniasis. This pilgrimage and the related costs are important factors that determine the decision to seek health care. This study contributes to the understanding of the under-utilisation problems of medical services in leishmaniasis and other similar diseases in remote and poor populations.

          Electronic supplementary material

          The online version of this article (10.1186/s12914-019-0196-4) contains supplementary material, which is available to authorized users.

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          Most cited references24

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          Mortality experience of Tsimane Amerindians of Bolivia: regional variation and temporal trends.

          This paper examines regional and temporal trends in mortality patterns among the Tsimane, a population of small-scale forager-horticulturalists in lowland Bolivia. We compare age-specific mortality in remote forest and riverine regions with that in more acculturated villages and examine mortality changes among all age groups over the past 50 years. Discrete-time logistic regression is used to examine impacts of region, period, sex, and age on mortality hazard. Villages in the remote forest and riverine regions show 2-4 times higher mortality rates from infancy until middle adulthood than in the acculturated region. While there was little change in mortality for most of the life course over the period 1950-1989, overall life expectancy at birth improved by 10 years from 45 to 53 after 1990. In both periods, over half of all deaths were due to infectious disease, especially respiratory and gastrointestinal infections. Accidents and violence accounted for a quarter of all deaths. Unlike typical patterns described by epidemiologic transition theory, we find a much larger period reduction of death rates during middle and late adulthood than during infancy or childhood. In the remote villages, infant death rates changed little, whereas death rates among older adults decreased sharply. We hypothesize that this pattern is due to a combination of differential access to medical interventions, a continued lack of public health infrastructure and Tsimane cultural beliefs concerning sickness and dying. Copyright 2007 Wiley-Liss, Inc.
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            Chagas disease in Andean countries

            The Andean Countries' Initiative (ACI) for controlling Chagas disease was officially created in 1997 within the framework of the Hipolito Unanue Agreement (UNANUE) between the Ministries of Health of Colombia, Ecuador, Peru, and Venezuela. Its objective was to interrupt transmission via vector and transfusion in the region, taking into account that there are 12.5 million people at risk in the four Andean countries forming the initiative in the area and around 3 million people are infected by Trypanosoma cruzi. The progress of control activities for the vector species present in the Andean sub-region, for different reasons, has been slow and control interventions have still not been installed in all geographical areas occupied by the target species. This has been partly due to lack of knowledge about these vector populations' biological characteristics, and consequent uncertainty about which are the appropriate control measures and strategies to be implemented in the region. The main vector species present important similarities in Venezuela and Colombia and in Ecuador and Northern Peru and they can be approached in a similar way throughout the whole regions, basing approaches on and adapting them to the current strategies being developed in Venezuela during the 1960s which have been progressively adopted in the Southern Cone and Central-American region. Additional measures are needed for keeping endemic areas free from Rhodnius prolixus silvatic populations, widely spread in the Orinoco region in Colombia and Venezuela. Regarding aetiological treatment, it is worth mentioning that (with the exception of Colombia) none of the other countries forming the ACI have registered medicaments available for treating infected young people. There are no suitable follow-up programmes in the sub-region or for treating cases of congenital Chagas disease. An integral and integrated programme encompassing all the aspects including transmission by transfusion which seems to have achieved extremely encouraging results in all countries, are urgently needed.
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              Mucosal Leishmaniasis: An Underestimated Presentation of a Neglected Disease

              We present a review of current knowledge about mucosal leishmaniasis (ML). Although involvement of mucous membranes is classically admitted in New World leishmaniasis, particularly occurring in infection by Leishmania (L.) braziliensis species complex, ML is also a possible presentation of Old World leishmaniasis, in either L. donovani or L. major species complex infections. Thus, ML has to be considered not only as a Latin American disease but as an Old and New World disease. We describe ML epidemiology, pathogenesis, clinics, diagnosis, and therapy. Considering both its highly disfiguring lesions and its possible lethal outcome, ML should not be underestimated by physicians. Moreover, leishmaniasis is expected to increase its burden in many countries as sandfly vector distribution is widespreading towards non-endemic areas. Finally, the lack of clear understanding of ML pathogenesis and the absence of effective human vaccines strongly claim for more research.
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                Author and article information

                Contributors
                libremd@gmail.com
                miguel.sansebastian@epiph.umu.se
                karin.hurtig@epiph.umu.se
                isabel.goicolea@epiph.umu.se
                Journal
                BMC Int Health Hum Rights
                BMC Int Health Hum Rights
                BMC International Health and Human Rights
                BioMed Central (London )
                1472-698X
                5 March 2019
                5 March 2019
                2019
                : 19
                : 12
                Affiliations
                [1 ]Department of Biomedical Sciences Research, Faculty of Medicine, San Simon University, Aniceto Arce Avenue, 371 Cochabamba, Bolivia
                [2 ]ISNI 0000 0001 1034 3451, GRID grid.12650.30, Department of Public Health and Clinical Medicine, , Epidemiology and Global Health, Umeå University, ; SE-901-85 Umeå, Sweden
                Author information
                http://orcid.org/0000-0001-8145-0967
                Article
                196
                10.1186/s12914-019-0196-4
                6402110
                30837001
                71d77703-3144-48cb-bc07-d0f3dad8b64d
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 10 May 2018
                : 22 February 2019
                Funding
                Funded by: Swedish International Development Cooperation Agency (SIDA)
                Award ID: 75000554
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Health & Social care
                cutaneous leishmaniasis,human rights,health care,seeking behavior,bolivia
                Health & Social care
                cutaneous leishmaniasis, human rights, health care, seeking behavior, bolivia

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