Neglect of a Neglected Disease in Italy: The Challenge of Access-to-Care for Chagas Disease in Bergamo Area

Abstract

ObjectivesChagas disease (CD) represents a growing problem in Europe; Italy is one of the most affected countries but there is no national framework for CD and access-to-care is challenging. In 2012 Médecins Sans Frontières (MSF) started an intervention in Bergamo province, where many people of Latin American origin (PLAO) are resident. A new model-of-care for CD, initiated by Centre for Tropical Diseases of Sacro Cuore Hospital, Negrar (CTD), the NGO OIKOS and the Bolivian community since 2009 in the same area, was endorsed. Hereby, we aim to describe the prevalence of CD and the treatment management outcomes among PLAO screened from 1st June 2012 to 30th June 2013.MethodsRetrospective cohort study using routine program data. Screening sessions were done in Bergamo at OIKOS outpatient service and serological confirmation, staging and treatment for CD was offered at the CTD. MSF provided health education on CD, awareness generation prior to screening days, pre-test and post-test counselling through cultural mediators of Latin American origin.ResultsOf 1305 PLAO screened, 223(17%) had CD. Among 210 patients eligible for treatment, 102(49%) were lost-to-follow-up before treatment. The median delay from diagnosis to treatment was 4 months (range 0.7–16.6 months). Among 108 started on treatment, 63(58%) completed treatment, 36(33%) interrupted treatment, (33 for drug side-effects, two for patients decision and one due to pregnancy), 6(6%) were lost-to-follow-up and 3(3%) were on treatment at study censuring.ConclusionIn this first study focusing on process of care for CD in Italy, less than 30% of patients completed treatment with drop-outs along the cascade of care. There is an urgent need to involve affected communities and local regional health authorities to take part to this model-of-care, adapting it to the local epidemiology. The Italian health authorities should take steps in advocating for a change in the current paradigm.

Does the Structured Operational Research and Training Initiative (SORT IT) continue to influence health policy and/or practice?

“…Pre-diagnostic and pre-treatment attrition were reduced to 24% and 0%, respectively.’ Repetto E.C. et al (2015), Italy [33]Retrospective cohort study involving review of patient data in an outpatient unit providing care for Chagas disease.Among 210 patients eligible for treatment, 49% were lost-to-follow-up before treatment. The median delay from diagnosis to treatment was 4 months.…”

Chagas Disease and Healthcare Rights in the Bolivian Immigrant Community of São Paulo, Brazil

“…In different countries and health systems, migrants with CD have faced key challenges to accessing care and often represent a particularly vulnerable group. In the United States and Europe, for example, immigration status can pose a major barrier to obtaining care for people with CD [12,14,46,47]. In Brazil, bureaucratic processes to obtain legal documents are potentially intimidating and make it very difficult for migrants to regularize their status.…”

Increasing access to comprehensive care for Chagas disease: development of a patient-centered model in Colombia

“…Many of the challenges involved in treating CD in Colombia are shared by other endemic and even nonendemic countries (30)(31)(32)(33)(34)(35). Although local contexts differ, several core components of the Colombian pilot project could provide a framework for increasing access to CD health care in diverse countries (Figure 2).…”