“You Don’t Have a Normal Life”: Coping with Chagas Disease in Los Angeles, California

ABSTRACT

Chagas disease is the neglected tropical disease of greatest public health impact in the United States, where it affects over 300,000 people. Diverse barriers limit healthcare access for affected people; fewer than 1% have obtained testing or treatment. We interviewed 50 people with Chagas disease in Los Angeles, California, and administered a cultural consensus analysis questionnaire. Participants were asked about their experiences and perceptions of Chagas disease, access to healthcare, and strategies for coping with the disease. In participants’ narratives, the physical and emotional impacts of the disease were closely interwoven. Participant explanatory models highlight difficulties in accessing care, despite a desire for biomedical treatment. Obtaining testing and treatment for Chagas disease poses substantial challenges for US patients.

RESUMEN

La enfermedad de Chagas es la enfermedad tropical desatendida de mayor importancia en los Estados Unidos, donde afecta más de 300.000 personas. Diversas barreras limitan el acceso a la atención de salud para las personas afectadas, y menos de uno por ciento han obtenido el diagnóstico o tratamiento. Entrevistamos a 50 personas con enfermedad de Chagas en Los Ángeles y administramos un cuestionario de análisis de consenso cultural. Se preguntaron a los participantes sobre sus experiencias y percepciones de la enfermedad de Chagas, acceso a la atención médica, y estrategias para enfrentar la enfermedad. En las narrativas de los participantes, los impactos físicos y emocionales de la enfermedad fueron estrechamente interrelacionados. Los modelos explicativos de los participantes resaltan las dificultades en obtener atención médica, a pesar de un deseo de hacer un tratamiento biomédico. Obtener el diagnóstico y el tratamiento para la enfermedad de Chagas representa un gran desafío para pacientes en los Estados Unidos.

KEYWORDS:

• United States
• Chagas disease
• explanatory models
• neglected tropical diseases
• Trypanosoma cruzi

Acknowledgments

We are deeply grateful to the patients, volunteers, and staff of the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center. We would also like to thank Doctors Without Borders/Médecins Sans Frontières USA for their support. The Drugs for Neglected Diseases initiative (DNDi) is grateful to its donors, public and private, who have provided funding to DNDi since its inception in 2003. A full list of DNDi’s donors can be found at http://www.dndi.org/donors/donors/. The study was approved by the Institutional Review Board of the Education and Research Institute at Olive View-UCLA Medical Center.

Additional information

Funding

Colin Forsyth received a salary from the Drugs for Neglected Diseases initiative and Doctors Without Borders/Médecins Sans Frontières USA while working on this research. No other outside funding was involved in the study.

Notes on contributors

Colin J. Forsyth

Colin J. Forsyth is a medical anthropologist and epidemiologist, and currently works as Chagas clinical project manager for the Drugs for Neglected Diseases initiative. In this capacity, he has formed part of multistakeholder efforts to expand access to treatment for Chagas disease in the United States, Colombia, and other countries. He has performed anthropological research on Chagas disease in Bolivia and Los Angeles, California.

Salvador Hernandez

Salvador Hernandez is an Internal Medicine physician; he trained at the UCLA-Olive View Internal Medicine Program, where he has also served as the Project Manager of the Chagas Clinic of the Center of Excellence for Chagas Disease. Dr. Hernandez coordinated the center’s Chagas screening outreach efforts to the Latin American community in Los Angeles, has led several key clinical and epidemiological investigations on Chagas disease, and presented at various internal scientific conferences. He earned his MD from the University of Guadalajara, Mexico in 2008.

Carmen A. Flores

Carmen A. Flores is a resident internal medicine physician at St. Barnabas Hospital in the Bronx, New York. She previously served as a research volunteer at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center. Dr. Flores graduated from the University of El Salvador with a degree in medicine.

Mario F. Roman

Mario F. Roman earned his MD at the University of Carobobo in Venezuela, and subsequently worked as a researcher at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center. He is currently at EXER Urgent Care in Culver City, California.

J. Maribel Nieto

J. Maribel Nieto graduated with an MD from the University of El Salvador in 2014. She subsequently served as a research volunteer at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center.

Grecia Marquez

Grecia Marquez is a resident Internal Medicine physician at St. Barnabas Hospital in the Bronx, New York. Previously she worked as a research volunteer at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center. She earned her MD at the Evangelical University of El Salvador.

Juan Sequeira

Juan Sequeira is an internist at Family Health Centers of Southwest Florida in Fort Meyers. He graduated with a degree in medicine from the Autonomous National University of Nicaragua in Managua, and later served as a research volunteer at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center.

Harry Sequeira

Harry Sequeira graduated in 2016 from the Autonomous National University of Nicaragua in Managua with a degree in medicine. In Nicaragua, he worked in prevention campaigns for Chagas and other tropical diseases. From 2016–2017, he worked as a research volunteer at the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center. He is currently a resident Internal Medicine physician at St. Barnabas Hospital in the Bronx, New York.

Sheba K. Meymandi

Sheba K. Meymandi is a cardiologist and director of the Center of Excellence for Chagas Disease at Olive View-UCLA Medical Center, which opened in 2007 as the first US clinic dedicated to the diagnosis and treatment of Chagas disease. She is also Clinical Professor of Medicine at UCLA’s David Geffen School of Medicine, and Director of Cardiovascular Research and Invasive Cardiology at Olive View-UCLA Medical Center. Dr. Meymandi has been extensively involved in clinical and epidemiological research on Chagas disease and works with global organizations including the Chagas Coalition and Drugs for Neglected Diseases initiative to strengthen efforts to raise awareness and fight the disease.