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Access to care for Chagas disease in the United States: a health systems analysis
Jennifer Manne-Goehler1, Michael R Reich2, Veronika J Wirtz2
1Department of Internal Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts; Department of Global Health and Population, Harvard School of Public Health, Boston, Massachusetts; Center for Global Health and Development, Boston University, Boston, Massachusetts jmanne@post.harvard.edu.
Insights
Access to Chagas disease treatment in the U.S. is limited for an estimated 300,000 individuals. Key barriers include diagnostic challenges, financing gaps, and insufficient provider training, necessitating a health systems approach.
Area of Science:
- Public Health
- Health Systems Research
- Infectious Diseases Epidemiology
Background:
- An estimated 300,000 individuals in the United States have Chagas disease.
- Limited data exists regarding access to care and treatment for Chagas disease in the U.S.
- Chagas disease, caused by *Trypanosoma cruzi*, requires timely diagnosis and treatment.
Purpose of the Study:
- To analyze trends in access to Chagas disease care in the United States.
- To identify national and state-level barriers hindering access to Chagas disease treatment.
- To evaluate the health system's role in facilitating or impeding access to essential medicines for Chagas disease.
Main Methods:
- Analysis of Chagas disease case data from blood donors (AABB) and drug release data (CDC) from 2007-2013.
- Conducted 30 semi-structured in-depth interviews with key informants at national and state levels.
- Interview data analyzed using health systems dimensions: regulation, financing, payment, organization, and persuasion.
Main Results:
- 1,908 Chagas disease cases were identified in the U.S. blood donation system (2007-2013).
- Only 422 courses of benznidazole or nifurtimox were released by the CDC during the study period.
- Identified barriers include limited diagnostics, lack of referral/care processes, insufficient financing, and inadequate provider awareness/training.
Conclusions:
- Access to Chagas disease treatment in the United States is significantly limited.
- Barriers extend beyond licensing, emphasizing the need for a comprehensive health systems approach.
- Scaling up access to essential Chagas disease medicines requires addressing systemic issues in healthcare delivery.
Abstract:
There are 300,000 estimated cases of Chagas disease in the United States but limited data on access to care. This study analyzed trends in access to care for Chagas disease in the United States and assessed the national and state barriers to access. Data on cases in blood donors and drug releases were obtained from the AABB (formerly American Association of Blood Banks) and U.S. Centers for Disease Control and Prevention (CDC), respectively. Semi-structured in-depth interviews were conducted with 30 key informants at the national level and in five states where treatment had been released. Interview responses were analyzed according to the health systems dimensions of regulation, financing, payment, organization, and persuasion. Data indicate that 1,908 cases were identified in the blood donation system from 2007 to 2013 and that CDC released 422 courses of benznidazole or nifurtimox during this period. The barriers to access at the national level include limited diagnostic and institutionalized referral and care processes, lack of financing for patient-care activities, and limited awareness and training among providers. This study demonstrates that access to treatment of Chagas disease in the United States is limited. The lack of licensing is only one of several barriers to access, highlighting the need for a health systems perspective when scaling up access to these essential medicines.
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