title: Access to care for Chagas disease in the United States: a health systems analysis.
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.
authors.affiliation: Department 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.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Manne-Goehler
authors.affiliation: Department 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.
authors.forename: Michael R
authors.initials: MR
authors.lastname: Reich
authors.affiliation: Department 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.
authors.forename: Veronika J
authors.initials: VJ
authors.lastname: Wirtz
mesh_terms: D001782:Blood Donors; D002487:Centers for Disease Control and Prevention, U.S.; D014355:Chagas Disease / Q000175:diagnosis / Q000188:drug therapy* / Q000453:epidemiology; D002983:Clinical Competence; D003695:Delivery of Health Care / Q000458:organization & administration*; D015507:Drugs, Investigational / Q000627:therapeutic use*; D006297:Health Services Accessibility / Q000458:organization & administration*; D006801:Humans; D009547:Nifurtimox / Q000627:therapeutic use*; D009593:Nitroimidazoles / Q000627:therapeutic use*; D012017:Referral and Consultation; D013597:Systems Analysis; D014344:Trypanocidal Agents / Q000627:therapeutic use*; D014481:United States
chemical_list: D015507:Drugs, Investigational; D009593:Nitroimidazoles; D014344:Trypanocidal Agents; D009547:Nifurtimox; C009999:benzonidazole