“It’s Like a Phantom Disease”: Patient Perspectives on Access to Treatment for Chagas Disease in the United States

INTRODUCTION

Chagas disease (CD), caused by the protozoan Trypanosoma cruzi, affects more than six million people worldwide and leads to more than 7,000 deaths annually.^1–3 It creates a greater burden of morbidity and mortality than any other parasitic infection in the Americas.³ CD primarily affects marginalized populations with limited access to health care.

Trypanosoma cruzi is spread by blood-sucking triatomine insects, congenitally, via blood transfusion and organ transplant, and through consumption of infected food. After infection, an acute phase ensues which is either asymptomatic or easily confused with a viral illness. Subsequently, the disease enters a chronic indeterminate phase where the parasites take refuge in deep tissue, especially the heart and digestive system, to avoid the body’s immune response, remaining hidden for years. The affected person remains asymptomatic and typically unaware of the infection. In 20–30 years, 30–40% of infected individuals progress to an advanced chronic stage of the disease characterized by damage to the heart, gastrointestinal tract, and/or nervous system.⁴ Early treatment with antiparasitic drugs (benznidazole or nifurtimox) can significantly delay or halt complications from chronic CD, as well as prevent congenital transmission.^5–7 However, < 1% of cases in Latin America and the United States, and < 10% in Europe, receive this potentially life-saving treatment.^8–11

In the United States, 326,000–347,000 Latin American–born individuals have CD.² Although the disease is also transmitted locally by native species of triatomines,^12,13 the incidence is unknown. Importantly, Latin Americans with CD do not pose a threat of infection to the nonimmigrant population now that blood transfusions and organ transplants are fully monitored. CD is not contagious through person-to-person contact. Triatomines and T. cruzi are part of the natural environment in much of the United States,¹⁴ and autochthonous transmission has taken place since pre-Colombian times.¹⁵ Therefore, halting immigration flows from Latin America would never succeed in eliminating CD from the United States and would do nothing to help those who have been infected by U.S. triatomines, who are also impacted by many of the barriers described in this article.

Most of the people with CD do not realize they are infected. A host of barriers impedes diagnosis and treatment⁹: low awareness among providers,^16–18 a lack of routine screening programs outside of blood donations, nonexistent health education campaigns, challenges in diagnosis, regulatory barriers impacting availability of benznidazole and nifurtimox,⁹ and the side effects these drugs produce.^19,20 For Latin American immigrants, these barriers compound sociopolitical inequalities that make health care difficult to access.

Patients with T. cruzi infection have a range of health-care needs which presently languish in nearly total neglect. At minimum, they should receive an electrocardiogram and echocardiogram to determine cardiac involvement. Patients from South America may also require a gastrointestinal evaluation. If the patient is less than 50 years old and in the indeterminate stage, without significant evidence of cardiomyopathy, etiological treatment with benznidazole (60 days) or nifurtimox (90 days) should be offered. Before treatment, a series of laboratories, including complete blood count and renal and hepatic function, are administered. These should be repeated every 2 weeks until treatment concludes. Subsequently, annual follow-up is recommended with an electrocardiogram, echocardiogram, and serologic testing (however, seroreversion typically takes years in chronic patients).^21,22

Prior U.S. research has examined barriers to medical care for CD from the perspective of providers, experts and policymakers,⁹ or gauged awareness of CD in Latin American immigrants.^23,24 However, the experiences and perspectives of people living with CD in the United States are largely unexplored. This study investigates the following research questions: Who are the people with CD in the United States? How do they experience CD, confront barriers, access care, and manage their health? Answers to these questions can inform public health programs while conveying the human and social dimensions of CD.

METHODS

The Center of Excellence for Chagas Disease (CECD) at the Olive View–UCLA Medical Center in Los Angeles is one of a handful of providers treating the disease in the United States. Founded in 2007, the CECD has screened more than 8,000 Los Angeles residents using a community-based model.²⁵ In the only large-scale U.S. prevalence study outside of blood banks, the CECD found 1.24% of 4,755 Latin American–born individuals screened in Los Angeles were positive for T. cruzi.²⁶ The CECD is housed within a safety-net facility in the San Fernando Valley on the north side of Los Angeles, the U.S. metropolitan area with the largest Latin American–born population (2.5 million). Median income for this population ($24,000) is less than half that of non-Latino whites in Los Angeles County.²⁷

A semi-structured interview questionnaire was administered to a convenience sample of 50 patients with CD who were recruited from CECD records (Figure 1). Demographic information was collected and patients were asked about their experiences with CD and the steps they took to access treatment. All participants were adults born in Latin America. Four interviews took place in person at the CECD and 46 via telephone. One interview was conducted in English and the rest in Spanish. The Institutional Review Board of the Education and Research Institute at the Olive View–UCLA Medical Center approved the study. A verbal informed consent process was used and all patient names have been changed in the article text to protect patients’ anonymity. Patients were asked for consent to record the interview, which all but one granted. Interview recordings were transcribed in Microsoft Word (Microsoft Corp., Redmond, WA), then coded for themes using qualitative analysis software (QDA Miner Lite v. 2.0, Provalis Research, Montreal, Canada). Coding involved an inductive process based on the social constructionist version of grounded theory²⁸; themes emerged mainly through our analysis of the interview texts, yet we were also cognizant of prior research on barriers to CD diagnosis and treatment, as well as the historical experience of the CECD in confronting many of these barriers.

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Recruitment process, Center of Excellence for Chagas Disease (CECD) patients. The process of recruitment of patients of CECD in Los Angeles for participation in the study.

Citation: The American Journal of Tropical Medicine and Hygiene 98, 3; 10.4269/ajtmh.17-0691

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RESULTS

DISCUSSION

Other research on barriers to treatment of CD has taken a system-level perspective. Manne-Goehler et al.⁹ identified multiple barriers, including a complicated diagnostic process, limited follow-up of positive blood donors, lack of organized systems of care and financing for the disease, low provider awareness, lack of Food and Drug Administration (FDA) approval of medications, and limited investment in research and education. The study noted that only 422 courses of treatment had been released by the Centers for Disease Control and Prevention (CDC) from 2007 to 2013, which would not even cover 0.2% of the most conservative estimate of expected cases nationally. Similar systemic barriers were identified in studies of access to treatment in Colombia¹⁰ and Mexico.⁸ Our research supports Manne-Goehler et al.’s findings for the United States and underscores the importance of insurance coverage, follow-up of blood donors, health education, and provider awareness. Moreover, patients identify language, transportation, time off from work, and side effects from treatment as additional barriers.

In our study, increasing provider awareness was a major need emphasized by patients. Other U.S. research has investigated low awareness of CD. In a prior CECD study, 86% of Latin American–born individuals in Los Angeles had never heard of CD.²⁴ Stimpert and Montgomery¹⁶ analyzed survey data of 1,142 U.S. physicians: 47% of obstetricians/gynecologists and 23% of cardiologists had never heard of CD. Even in physicians who were aware of CD’s existence, a large segment did not feel confident that their knowledge of the disease was up to date.¹⁶ Other studies indicate physicians do not consider CD in their diagnoses, even when patients are from endemic countries.^17,18

The FDA recently approved benznidazole, the first-line medication for CD, for use in children 2–12 years old. This removes a major bureaucratic barrier for physicians, but prescriptions for patients outside this age range will be considered “off-label.” With most U.S. Chagas patients being older than 12, it is imperative that the indication for the drug be expanded as broadly as possible to facilitate physicians’ use of benznidazole for treatment.

Many barriers impeding patients’ access are rooted in sociopolitical inequalities impacting Latin American immigrants. A study predicts that half the projected 2.7–3.4 million uninsured in California in 2019 will be undocumented immigrants, despite state programs designed to cover this population.²⁹ Bureaucratic complexities and fear of deportation limit enrollment. Even after passage of the Affordable Care Act, 47% of Mexican immigrants still lack insurance coverage (compared with 9% of the U.S.-born population).³⁰ An estimated 30% of the Latin American–born population with CD is undocumented,² and research suggests this has a significant impact on treatment seeking for CD.^9,23,31 In our study, this barrier was partially mitigated by Medi-Cal emergency coverage and other local programs. The situation is apt to be bleaker in states which have refused federal funds to expand Medicaid, including Texas and Florida, which rank second and third nationally in terms of CD burden.²

There is a strong link between socioeconomic conditions and CD.³² Jackson et al.³³ examined socioeconomic conditions among 137 immigrants with CD in Switzerland. The majority (89.1%) lived below the Swiss poverty line, compared with 63.4% in our study living below the U.S. poverty line. Socioeconomic conditions may play an important role in disease progression. A study in Argentina of 801 patients with CD found having health insurance and more years of education were protective factors against progression to chronic cardiomyopathy.³⁴ Similarly, we found that education and language differences posed a significant barrier, compounded by low provider awareness. Lack of insurance posed another key barrier, yet bureaucratic delays with private insurers also impeded treatment. Furthermore, some patients could not afford transportation or had no time off benefits, making it extremely difficult to go to appointments. Geographic distance of providers offering treatment was identified as a major barrier in studies in Latin America as well.^10,35

Our study has several limitations. Because the sample consisted of patients who were able to obtain diagnosis at the CECD, they are not representative of the > 99% of CD patients who remain undiagnosed. Furthermore, 40 respondents received etiological treatment, which is even rarer. We use a convenience sample; patients in the study are more likely to live near the CECD and to be affiliated with churches and other organizations connected to the CECD’s outreach program. Although we attempted to reach 102 current or former patients, we could only connect with 55. The population served by the CECD may be harder to contact because of high mobility, restrictions on time due to work, difficulties with immigration status, or apprehension about interacting with official institutions. The patients we were not able to contact may actually face more severe barriers to accessing health care. Most patients’ information about CD came from their interactions with the CECD, which could have influenced their responses.

With < 1% of U.S. patients diagnosed, there is a need for widespread screening. However, diagnosed patients will struggle to find treatment until there is a concerted effort to educate health-care personnel on CD. Moreover, both Medicaid and private insurers should cover treatment in a straightforward manner. Ideally, treatment of CD should be available in primary care facilities near to where patients live. Information on CD should be available in straightforward terms in language that is familiar to patients, and there is a critical need for increased public awareness campaigns.

United States CD programs cannot ignore the constellation of political, economic, and cultural factors which severely limit this group’s access to the health-care system. Our study highlights the importance of patients’ transportation needs, employment situation, family/social support systems, and linguistic preferences for programs designed to increase access to CD health care. Reaching the 99% of U.S. patients who presently do not receive diagnosis and treatment of CD will require a strong commitment from government, public health entities, providers, and insurers, based on the premise that access to care for a life-threatening disease should be a fundamental human right.