Syndemic vulnerability and the right to health.

Investigators working both in syndemics, a field of applied health research with roots in medical anthropology, and in the field of health and human rights recognise that upstream social, political, and structural determinants contribute more to health inequities than do biological factors or personal choices. Syndemics investigates synergistic, often deleterious interactions among comorbid health conditions, especially under circumstances of structural and political adversity. Health and human rights research draws on international law to argue that all people deserve access not only to health care, but also to the underlying determinants of good health. Taking the urgent matter of migrant health as an empirical focus, we juxtapose the fields of syndemics and health and human rights, identify their complementarities, and advocate for a combined approach. By melding insights from these fields, the combined syndemics/health and human rights approach advanced here can provide clinicians and other key stakeholders with concrete insights, tools, and strategies to tackle the health inequities that affect migrants and other vulnerable groups by: (1) mapping the effect of social, political, and structural determinants on health; (2) identifying opportunities for upstream intervention; and (3) working collaboratively to tackle the structures, institutions, and processes that cause and exacerbate health inequities. Undergirding this approach is an egalitarian interpretation of the right to health that differs from narrow legalistic and individual interpretations by insisting that all people are equal in worth and, as a result, equally deserving of protection from syndemic vulnerability.

Untimely care: How the modern logics of coverage and medicine compromise children's health and development.

How do families manage when health care systems do not "cover" and clinicians do not acknowledge their children's condition? This article presents an ethnographic study in the Northeastern region of the United States with 20 families with children diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Two of the 20 families had moved to the U.S. seeking care. The for-profit structure of the U.S. health care system resulted in costly and lengthy therapeutic journeys to access a diagnosis and adequate treatments. In the U.S., PANS/PANDAS coverage depends on legislation, advocacy, clinical characteristics of each child, and how for-profit insurance companies react to an increased demand for a given service. Many medical professionals, both in the U.S. and in other countries, refuse to acknowledge the condition or offer effective treatments that lack "acceptable" evidence. We argue that the financial logic behind coverage exists across modern health care systems and imposes restrictions and exclusions that impede access to care. Thus, untimely care, the time gap from PANS/PANDAS symptoms to diagnosis and treatment is the result of the modern logics that structure medicine and coverage. The results of this study illustrate how modern medicine and coverage fail to protect families with children with PANS/PANDAS against catastrophic expenses and often block care that would prevent developmental disruptions and losses, avoid much suffering, and even save costs to health care systems. New and controversial conditions like PANS/PANDAS highlight the importance of separating the financial logics behind proposals such as "universal health coverage" from the provision of comprehensive forms of care that acknowledge uncertainty and prioritize action and flexibility.

The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil.

Whether, how, and when children's HIV/AIDS diagnosis needs to be disclosed to them has received growing attention. This paper describes and conceptualizes how communication about HIV/AIDS influences disease knowledge and psychosocial development in a group of children and adolescents living with perinatally acquired HIV infection in an AIDS institution in São Paulo, Brazil. Data consist of the lived experience of 36 children ages 1 to 15 and was gathered through ethnographic research methodologies: participant observation and semistructured informal interviews. Results show that AIDS diagnosis is not disclosed to children, who experience a growing confusion about the interconnected meanings of sickness, medications, living at a house/institution, and having AIDS. Children younger than 6 learn to accept medication taking and to silence illness-related questions. Seven to 9-year olds perceive that the word AIDS and/or being sick are considered negative attributes, but are confused about how these relate to their lives. Preadolescents' growing awareness of the relationship between their lives and negative social values associated with AIDS produces shame and anger. Adolescents exhibit a poor understanding of the implications of HIV/AIDS for their lives and cynicism toward AIDS care, their future, and information about risks to their health. In conclusion, lack of communication about HIV/AIDS creates a context of confusion and mistrust, is detrimental to psychosocial development and coping, compromises disease knowledge, and increases vulnerability to risk behavior. Providing developmentally appropriate information about HIV/AIDS that matches children's illness experiences at all ages would eliminate the need for disclosure and reduce children's emotional distress.

The Transformation of the Value of Life: Dispossession as Torture.

Workers at the oldest maternity hospital in Colombia experienced the privatization of health care and the flexibilization of their labor. Drawing on their experience, I illustrate how neoliberalism transforms the value of life. This transformation occurs first in terms of its moral worth: the worth of life changes over time, as people and public hospitals are stigmatized as the 'living memory' of the old. Second, the hospital buildings, the land on which they sit, and the roles of workers within the hospital are all transformed. Both similarities and differences emerge between a type of systemic or chronic violence that is inherent to the capitalist system and modern practices of torture. Examining how capitalist forces transform the value of life opens up new fields of inquiry to study links between critical political economy and subjectivity.

[Colombian experience regarding skin cancer: healthcare-related barriers to access to healthcare and bureaucratic itineraries]. / Cáncer de piel: barreras de acceso e itinerario burocrático. Una experiencia colombiana.

OBJECTIVES: Describing and understanding the experiences of people suffering non-melanoma skin cancer in their struggles to recuperate, deciphering their itinerary regarding their health-seeking behavior, describing the relationship between patients and the Colombian healthcare system by referring to the number of pertinent writs and the percentage of denied services, and documenting the determinants which are related to timely diagnosis. METHODS: This was a mixed-methods study, combining epidemiology and critical medical anthropology; the study involved a retrospective cohort of 369 people, 3 focus groups including 48 participants and in-depth interviews regarding 20 cases. RESULTS: The data revealed specific healthcare system-related barriers to access to healthcare, intermediate barriers (work-related and geographical) and structural barriers (economic-, income-, purchasing power-, social cohesion- and education-related). Timely diagnosis was made in 32.5% of the reported cases. Related determinants consisted of educational level equal to or above technical training (OR 4.4), home ownership (OR 4.8), living in an urban area (OR3.5) and contributory regime affiliation (OR 1.9); 28% of the people involved in the study reported that they had been denied access to a service (biopsy, surgery) and the rate of resorting to legal means (i.e. writs) was 5 out of every 100 new cases per year. The itinerary from the time of the appearance of a particular disease to definitive resolution was established. DISCUSSION: People living in unfavorable social conditions were involved in the severest cases and, paradoxically, faced the largest set of barriers to access to healthcare in Colombia. Such barriers extend beyond the healthcare system and will not become resolved solely through healthcare reform.

Cáncer de piel: barreras de acceso e itinerario burocrático. Una experiencia colombiana / Colombian experience regarding skin cancer: healthcare-related barriers to access to healthcare and bureaucratic itineraries

RESUMEN Objetivo Describir y comprender de forma integral las experiencias que han vivido personas con cáncer de piel no melanoma en su lucha por recuperar la salud, descifrando el itinerario que recorren en busca de atención, describiendo las relaciones con el sistema de salud, estableciendo la tasa de tutelas y el porcentaje de servicios negados, y documentando los determinantes relacionados con el diagnóstico oportuno. Métodos Se realizó un estudio con metodología mixta desde la perspectiva combinada de la epidemiología y la antropología médica critica. El trabajo incluyó una cohorte retrospectiva con 369 personas, tres grupos focales con 48 participantes y entrevistas en profundidad a 20 casos. Resultados Se documentaron barreras propias del sistema de salud, barreras intermedias (laborales y geográficas) y barreras estructurales (economía, ingresos, poder adquisitivo, cohesión social y educación). Los diagnósticos oportunos fueron del 32,5 %. Los determinantes relacionados fueron: escolaridad igual o superior a la formación técnica (OR:4,4), vivienda propia (OR:4,8), vivir en medio urbano (OR:3,5) y afiliación al régimen contributivo (OR:1,9). El 28 % reportaron la negación de algún tipo de servicio (biopsia, cirugía), y la tasa de uso de recursos legales fue de cinco por cada 100 casos nuevos año. Se documentó el itinerario desde la aparición de la enfermedad, hasta la atención definitiva. Discusión Las personas en condiciones desfavorables presentan los casos más complejos y paradójicamente enfrentan la mayor cantidad de barreras de acceso. Estas barreras trascienden el sistema de salud, y no dependen exclusivamente de una reforma al sector.

ABSTRACT Objectives Describing and understanding the experiences of people suffering non-melanoma skin cancer in their struggles to recuperate, deciphering their itinerary regarding their health-seeking behavior, describing the relationship between patients and the Colombian healthcare system by referring to the number of pertinent writs and the percentage of denied services, and documenting the determinants which are related to timely diagnosis. Methods This was a mixed-methods study, combining epidemiology and critical medical anthropology; the study involved a retrospective cohort of 369 people, 3 focus groups including 48 participants and in-depth interviews regarding 20 cases. Results The data revealed specific healthcare system-related barriers to access to healthcare, intermediate barriers (work-related and geographical) and structural barriers (economic-, income-, purchasing power-, social cohesion- and education-related). Timely diagnosis was made in 32.5% of the reported cases. Related determinants consisted of educational level equal to or above technical training (OR 4.4), home ownership (OR 4.8), living in an urban area (OR3.5) and contributory regime affiliation (OR 1.9); 28% of the people involved in the study reported that they had been denied access to a service (biopsy, surgery) and the rate of resorting to legal means (i.e. writs) was 5 out of every 100 new cases per year. The itinerary from the time of the appearance of a particular disease to definitive resolution was established. Discussion People living in unfavorable social conditions were involved in the severest cases and, paradoxically, faced the largest set of barriers to access to healthcare in Colombia. Such barriers extend beyond the healthcare system and will not become resolved solely through healthcare reform.