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Proposed multidimensional framework for understanding Chagas disease healthcare barriers in the United States
Colin Forsyth1,2, Sheba Meymandi2, Ilan Moss1
1Drugs for Neglected Diseases initiative, North America, New York, New York, United States of America.
Insights
Chagas disease (CD) affects over 300,000 in the US, yet diagnosis and treatment remain low due to systemic, structural, clinical, and psychosocial barriers. Addressing these is crucial for public health.
Area of Science:
- Public Health
- Infectious Diseases
- Health Disparities
Background:
- Chagas disease (CD) impacts over 300,000 individuals in the US.
- Fewer than 1% of those affected receive diagnosis, and less than 0.3% receive etiological treatment.
- Untreated CD poses a significant public health risk due to potentially fatal complications.
Purpose of the Study:
- To identify and analyze the barriers preventing access to diagnosis and treatment for Chagas disease in the United States.
- To propose a multidimensional framework for understanding these barriers and informing public health responses.
Main Methods:
- Exploratory literature review.
- Analysis of experiences from a leading US clinic treating Chagas disease.
- Categorization of 34 identified barriers into four dimensions: systemic, structural, clinical, and psychosocial.
Main Results:
- Identified 34 barriers to Chagas disease diagnosis and treatment.
- Grouped barriers into four overlapping dimensions: systemic (public health gaps), structural (inequalities), clinical (medication toxicity, diagnostic challenges), and psychosocial (fear, stigma).
Conclusions:
- A multidimensional framework is proposed to explain low diagnosis and treatment rates for Chagas disease.
- This framework can guide public health strategies to improve access to care.
- Expanding access to Chagas disease diagnosis and treatment is framed as an assertion of vulnerable populations' right to quality healthcare.
Background:
Chagas disease (CD) affects over 300,000 people in the United States, but fewer than 1% have been diagnosed and less than 0.3% have received etiological treatment. This is a significant public health concern because untreated CD can produce fatal complications. What factors prevent people with CD from accessing diagnosis and treatment in a nation with one of the world's most advanced healthcare systems?
Methodology/Principal Findings:
This analysis of barriers to diagnosis and treatment of CD in the US reflects the opinions of the authors more than a comprehensive discussion of all the available evidence. To enrich our description of barriers, we have conducted an exploratory literature review and cited the experience of the main US clinic providing treatment for CD. We list 34 barriers, which we group into four overlapping dimensions: systemic, comprising gaps in the public health system; structural, originating from political and economic inequalities; clinical, including toxicity of medications and diagnostic challenges; and psychosocial, encompassing fears and stigma.
Conclusions:
We propose this multidimensional framework both to explain the persistently low numbers of people with CD who are tested and treated and as a potential basis for organizing a public health response, but we encourage others to improve on our approach or develop alternative frameworks. We further argue that expanding access to diagnosis and treatment of CD in the US means asserting the rights of vulnerable populations to obtain timely, quality healthcare.
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