Barriers to treating a globally neglected disease among deeply marginalized communities in Boston, Massachusetts

• In Event: Social inequalities and health: a case for social justice with a focus on Chagas disease

Abstract

3,400 people in Massachusetts are estimated to carry the Chagas microbe, among whom one-fifth to one-third will die of heart disease. In the absence of system-based efforts in the United States, the goal of the Strong Hearts/Corazones Fuertes/Corações Fortes project is to educate at-risk communities and their medical providers, and to facilitate Chagas screening and treatment as a component of primary care. Partnerships between a community health center and a tertiary care hospital were created and medical education sessions were held in both. Community outreach and -education was conducted in numerous churches and community-based organizations. Strong Hearts confirmed infection with the Chagas parasite in 25 patients of the East Boston Neighborhood Health Center within the first 14 months of screening. All patients were referred for the offer of treatment by Infectious Disease specialists. A major barrier to treatment was patients’ hesitation to go to an unknown hospital, due to fear of immigration detention and deportation. Other barriers were fear of asking the employer for time off work, lack of appropriate transportation connections, and not having received information on the disease from their primary care physician. Among life priorities of low-income Latin American immigrants in the United States, ensuring their and their families’ basic survival by retaining employment and avoiding deportation, supersedes focusing on their own medical care. Supports like accompaniment by a patient navigator and small-scale assistance like taxi vouchers can substantially help to overcome these barriers. Chagas disease can be addressed even among persecuted immigrants in the United States.

Author

• Julia Koehler