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“It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States
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 treatme...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
The American Society of Tropical Medicine and Hygiene
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5930901/ https://www.ncbi.nlm.nih.gov/pubmed/29380723 http://dx.doi.org/10.4269/ajtmh.17-0691 |
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author | Forsyth, Colin J. Hernandez, Salvador Flores, Carmen A. Roman, Mario F. Nieto, J. Maribel Marquez, Grecia Sequeira, Juan Sequeira, Harry Meymandi, Sheba K. |
author_facet | Forsyth, Colin J. Hernandez, Salvador Flores, Carmen A. Roman, Mario F. Nieto, J. Maribel Marquez, Grecia Sequeira, Juan Sequeira, Harry Meymandi, Sheba K. |
author_sort | Forsyth, Colin J. |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-5930901 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | The American Society of Tropical Medicine and Hygiene |
record_format | MEDLINE/PubMed |
spelling | pubmed-59309012018-05-08 “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States Forsyth, Colin J. Hernandez, Salvador Flores, Carmen A. Roman, Mario F. Nieto, J. Maribel Marquez, Grecia Sequeira, Juan Sequeira, Harry Meymandi, Sheba K. Am J Trop Med Hyg Articles 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. The American Society of Tropical Medicine and Hygiene 2018-03 2018-01-29 /pmc/articles/PMC5930901/ /pubmed/29380723 http://dx.doi.org/10.4269/ajtmh.17-0691 Text en © The American Society of Tropical Medicine and Hygiene This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Articles Forsyth, Colin J. Hernandez, Salvador Flores, Carmen A. Roman, Mario F. Nieto, J. Maribel Marquez, Grecia Sequeira, Juan Sequeira, Harry Meymandi, Sheba K. “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title | “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title_full | “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title_fullStr | “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title_full_unstemmed | “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title_short | “It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States |
title_sort | “it’s like a phantom disease”: patient perspectives on access to treatment for chagas disease in the united states |
topic | Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5930901/ https://www.ncbi.nlm.nih.gov/pubmed/29380723 http://dx.doi.org/10.4269/ajtmh.17-0691 |
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