Research Article: “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States

Date Published: March 29, 2018

Publisher: The American Society of Tropical Medicine and Hygiene

Author(s): Colin J. Forsyth, Salvador Hernandez, Carmen A. Flores, Mario F. Roman, J. Maribel Nieto, Grecia Marquez, Juan Sequeira, Harry Sequeira, Sheba K. Meymandi.


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.

Partial Text

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.1–3 It creates a greater burden of morbidity and mortality than any other parasitic infection in the Americas.3 CD primarily affects marginalized populations with limited access to health care.

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. Founded in 2007, the CECD has screened more than 8,000 Los Angeles residents using a community-based model.25 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 The CECD is housed within a safety-net facility in the San Fernando Valley on the north side of Los Angeles, the U.S. metropolitan area with the largest Latin American–born population (2.5 million). Median income for this population ($24,000) is less than half that of non-Latino whites in Los Angeles County.27

Other research on barriers to treatment of CD has taken a system-level perspective. Manne-Goehler et al.9 identified multiple barriers, including a complicated diagnostic process, limited follow-up of positive blood donors, lack of organized systems of care and financing for the disease, low provider awareness, lack of Food and Drug Administration (FDA) approval of medications, and limited investment in research and education. The study noted that only 422 courses of treatment had been released by the Centers for Disease Control and Prevention (CDC) from 2007 to 2013, which would not even cover 0.2% of the most conservative estimate of expected cases nationally. Similar systemic barriers were identified in studies of access to treatment in Colombia10 and Mexico.8 Our research supports Manne-Goehler et al.’s findings for the United States and underscores the importance of insurance coverage, follow-up of blood donors, health education, and provider awareness. Moreover, patients identify language, transportation, time off from work, and side effects from treatment as additional barriers.




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