"It's Like a Phantom Disease": Patient Perspectives on Access to Treatment for Chagas Disease in the United States.

Colin J Forsyth,Carmen A Flores,Grecia Marquez,Sheba K Meymandi,Salvador Hernandez,J Maribel Nieto,Harry Sequeira,Mario F Roman,Juan Sequeira

doi:10.4269/ajtmh.17-0691

Colin J Forsyth, Carmen A Flores + Show 7 more

Open Access

https://doi.org/10.4269/ajtmh.17-0691

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Abstract

.Chagas disease (CD) affects > 6 million people globally, including > 300,000 in the United States. Although early detection and etiological treatment prevents chronic complications from CD, < 1% of U.S. cases have been diagnosed and treated. This study explores access to etiological treatment from the perspective of patients with CD. In semi-structured interviews with 50 Latin American–born patients of the Center of Excellence for Chagas Disease at the Olive View–UCLA Medical Center, we collected demographic information and asked patients about their experiences managing the disease and accessing treatment. Patients were highly marginalized, with 63.4% living below the U.S. poverty line, 60% lacking a high school education, and only 12% with private insurance coverage. The main barriers to accessing health care for CD were lack of providers, precarious insurance coverage, low provider awareness, transportation difficulties, and limited time off. Increasing access to diagnosis and treatment will not only require a dramatic increase in provider and public education, but also development of programs which are financially, linguistically, politically, and geographically accessible to patients.

Highlights

Chagas disease (CD), caused by the protozoan Trypanosoma cruzi, affects more than six million people worldwide and leads to more than 7,000 deaths annually.[1,2,3] It creates a greater burden of morbidity and mortality than any other parasitic infection in the Americas.[3]
The Center of Excellence for Chagas Disease (CECD) at the Olive View–UCLA Medical Center in Los Angeles is one of a handful of providers treating the disease in the United States
In the only large-scale U.S prevalence study outside of blood banks, the CECD found 1.24% of 4,755 Latin American–born individuals screened in Los Angeles were positive for T. cruzi.[26]

Summary

Introduction

Chagas disease (CD), caused by the protozoan Trypanosoma cruzi, affects more than six million people worldwide and leads to more than 7,000 deaths annually.[1,2,3] It creates a greater burden of morbidity and mortality than any other parasitic infection in the Americas.[3]. The disease enters a chronic indeterminate phase where the parasites take refuge in deep tissue, especially the heart and digestive system, to avoid the body’s immune response, remaining hidden for years. In 20–30 years, 30–40% of infected individuals progress to an advanced chronic stage of the disease characterized by damage to the heart, gastrointestinal tract, and/or nervous system.[4] Early treatment with antiparasitic drugs (benznidazole or nifurtimox) can significantly delay or halt complications from chronic CD, as well as prevent congenital transmission.[5,6,7] < 1% of cases in Latin America and the United States, and < 10% in Europe, receive this potentially lifesaving treatment.[8,9,10,11]

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