The Road to Health: The Experience of Tuberculosis in Southern Chile

Joan Elizabeth Paluzzi

PhD Thesis 2002

Tuberculosis, a highly treatable disease, continues to be leading cause of infectious-disease deaths in the world today. Through the use of illness narratives, health-worker interviews public health documents and archival materials, this research examines both the history of tuberculosis in Chile and the experience of tuberculosis by individuals, their families and communities throughout the Ninth Region of Southern Chile during the year 2000. Chile is recognized as having a highly effective, nationalized TB treatment program and the country continues to demonstrate declining national instances of TB. However, this investigation challenges the conventional use of overall incidence rates as a meaningful indicator by demonstrating that generalized disease incidences do not accurately reflect the disproportionately higher impact of tuberculosis within specific populations who are most accurately characterized by their poverty.

Access to primary health services, the critical link between individuals with symptoms of TB and the treatment program, is limited by geographic and systemic barriers for many individuals in this region. The frequently-publicized problems of the National Health System in Chile can be directly correlated with the re-allocation of health resources, both financial and human, into the expanding private health care sector, a persisting feature of the neo-liberal reforms enacted during the military dictatorship (1973-1989). An examination of the histories of 59 people in the treatment program for TB reveal that a significant number of the individuals in the lowest economic strata experienced delay in diagnosis even after they entered the primary health care system.

Individuals who withdraw electively from treatment or fail to seek treatment in a timely manner are often characterized within biomedical practice and research by negative stereotypes: alcoholic, irresponsible, inherently possessing poor judgement, etc. Through the use of illness narratives, this study contests this privileging of individual agency by arguing that these actions frequently emerge from the limitations imposed by the larger socio-economic context in which they occur. Given the current global health emergencies and inequalities, this work contributes to the understanding that "social" diseases (diseases characterized by a high correlation to poverty) require systemic, social responses.