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

Objectives: Chagas 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. Methods: Retrospective 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. Results: Of 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. Conclusion: In 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. Author Summary: Chagas disease is a neglected disease which, when left untreated, leads to severe cardiac and or digestive problems in 40% of the affected individuals. Globally, less than 1% of affected people have access to care. While mainly documented in Latin America, Chagas disease is not limited to this region due to population movements; however, awareness and provision of care are poor globally. Because of the relatively high levels of Chagas disease reported in Italy and the lack of information on programmatic management of the disease outside of Latin America, we aimed to analyse the outcome of an integrated program of health education, free universal screening, and free access to care, managed in collaboration between the NGOs Médecins Sans Frontieres and OIKOS, and the Centre of Tropical Diseases of Negrar Hospital in Verona province, with the active participation and empowerment of the local communities. Our results show that the prevalence of Chagas disease among people of Latin American origin in Bergamo province was high and that, despite an increased access to diagnosis and treatment in the program, many people did not complete the full course of treatment. More efforts should be done by the Italian authorities to facilitate access to care.