“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

Chagas disease (hereafter CD) is the neglected tropical disease of greatest public health importance in the United States, where it affects an estimated 326,000–347,000 people (Manne-Goehler et al. 2016). Worldwide, CD affects over six million people, mostly in mainland Latin America, with an estimated 68,000–122,000 in Europe (Basile et al. 2011). Roughly one in three people with CD eventually develops potentially serious complications affecting the heart and, less frequently, the digestive or nervous systems. While most people with CD in the US acquired the disease in Latin America as children, the triatomines (kissing bugs) which transmit the trypanosomes that cause the disease are also native to the southern US, and local transmission is known to occur (Garcia et al. 2015; Hernandez et al. 2016; Klotz et al. 2014).

Chagas disease is highly neglected in the US, even though it affects more people than more publicized conditions such as Zika or Lyme disease. Testing for CD relies on detection of antibodies for Trypanosoma cruzi in the blood, and requires two or more serological tests. Many people in the US find out they have CD through screening of blood donations, but testing does not routinely occur in primary health care. Estimates suggest that fewer than 1% of people with CD in the US have been diagnosed or treated (Manne-Goehler et al. 2015). This is of critical public health importance since early detection and treatment may provide better outcomes and survival for patients. Treatment should ideally be offered before the development of severe complications in the chronic stage of the disease, which typically occurs decades after infection. There is also a hidden burden of undiagnosed CD in centers providing cardiological care (Kapelusznik et al. 2013; Park et al. 2017; Traina et al. 2017, 2015). Although benznidazole was provisionally approved by the Food and Drug Administration in 2017, the indication is for children between the ages of 2 and 12. Nifurtimox was approved in 2020 for children 0–18 years old. However, 99% of people in the US with the disease are older (Herwaldt et al. 2018). The age limit is mainly a result of limitations in the available evidence on treatment efficacy, which is compounded by a lack of biomarkers indicating the effect of treatment on chronic infection in adults. While testing options are limited, various structural, health system, clinical, and psychosocial barriers severely restrict the availability of drug treatment (Forsyth et al. 2019).

Anthropological research on CD has been limited, and nearly all studies have occurred in Latin America or Europe (Ventura-Garcia et al. 2013). Studies in Argentina (Dell’Arciprete et al. 2014; Sanmartino 2009; Sanmartino et al. 2015), Brazil (Magnani et al. 2009), Colombia (Martinez-Parra et al. 2018), Mexico (Valdez-Tah et al. 2015), and Bolivia (Forsyth 2015, 2017), among others, have documented the challenges facing affected people, both in coping with the disease and seeking healthcare. Treatment is often located in facilities distant from where patients live, and healthcare personnel are frequently unfamiliar with the disease or reluctant to initiate treatment (Forsyth 2015; Martinez-Parra et al. 2018). CD represents one among many social, economic, and emotional challenges facing affected people in their day-to-day existence, and strategies for coping with diagnosis, in light of limited biomedical treatment options, range from trying not to worry about the disease (since worrying can bring negative health consequences) (Forsyth 2017; Sanmartino 2009) to self-treating with natural remedies (Forsyth 2018).

In this article, we describe anthropological research on CD in Los Angeles. Here, people with the disease face the challenge of adapting to a different cultural and linguistic milieu characterized by extreme social inequality and restrictions on access to health care. Previously, we have described the range of access challenges confronted by Los Angeles patients, including immigration restrictions and low awareness among healthcare personnel (Forsyth et al. 2018). Few people have been able to access treatment, due to multiple barriers both within and extrinsic to the health system, and even if healthcare is finally obtained from one of the only clinics in the country offering treatment for CD, the side effects of the existing medications present new challenges. Patients, most of whom had not heard of CD prior to diagnosis, have only just begun to develop coping strategies for this lifelong chronic infection.

Methods

The study setting is Los Angeles, which has the largest metropolitan population in the US of people born in Latin America, at around 2.5 million; Mexico (79%) and El Salvador (12%) are the two main countries of origin (Pew Research Center 2011). The Center of Excellence for Chagas Disease (CECD), one of the only providers in the country that offers comprehensive treatment for CD, including testing, etiological treatment, and the management of cardiac complications, is located within the Olive View-UCLA Medical Center, a safety-net hospital on the northern edge of Los Angeles, in the San Fernando Valley. The CECD conducts screening for CD in the Latin American community of Los Angeles; the prevalence of CD in this population is 1.24% (Meymandi et al. 2017).

We interviewed patients of the CECD with a diagnosis of CD. All patients were originally born outside of the US. Patients represent a convenience sample selected from CECD records. The CECD is one of the few facilities in the US providing comprehensive care for CD and thus one of the few settings where the experience of US patients could be researched; consequently, a convenience sample was used. Investigators attempted to contact 102 patients; 55 were successfully reached. Three declined to participate and two were physically unable, leaving a final sample of 50 people. In this article, all participant names have been changed to protect their anonymity.

Study design

This is a mixed-methods study combining qualitative and quantitative approaches. We created a semi-structured interview questionnaire focusing on interviewees’ experiences and opinions on CD. Sample characteristics and findings from semi-structured interviews on access to diagnosis and treatment for CD are described elsewhere (Forsyth et al. 2018). Based on information gathered during the first nine semi-structured interviews, we created a cultural consensus analysis (CCA) questionnaire. The purpose of the CCA questionnaire was to gain an understanding of culturally patterned concepts regarding CD and its management in the sample. CCA is a method allowing for statistical analysis of these patterns, to better understand the prevailing explanatory model of a disease in a group or community (Romney et al. 1986; Weller 2007). Kleinman (1980) proposed that individuals develop explanatory models for health conditions which encompass etiology, pathophysiology, time and mode of onset of symptoms, course of sickness, and treatment. Explanatory models are likely to differ not only between cultural contexts, but also between patients and healthcare personnel. CCA helps characterize explanatory models shared within the group, and patterned on the basis of cultural precepts (Weller 2007). This approach has been used to understand explanatory models for various diseases, including HIV/AIDs (Baer et al. 2004), diabetes (Weller et al. 2012), and cancer (Chavez et al. 1995).

The CCA questionnaire contained 62 yes/no and true/false statements about CD, modifying a questionnaire previously used in Bolivia (Forsyth 2015). Over 30% of questions were phrased to elicit a likely negative response, to prevent respondents from a pattern of answering all items in the affirmative (Weller 2007). The questionnaire was validated with Spanish-speaking CECD staff and volunteers. While the first nine participants only completed the semi-structured interview, the remaining 41 participants completed both the semi-structured interview and the CCA questionnaire. All but one of the interviews were conducted in Spanish. Most interviews were conducted over the phone, although some took place in the clinic as patients came for appointments. After a verbal informed consent process, participants were asked for their approval to record the interview.

Data analysis

Interview recordings were transcribed as Word documents, and then loaded into a data analysis tool (QDA Miner Lite v. 2.0, Provalis Corporation, Montreal, Canada). The semi-structured interviews were analyzed and coded for themes. The authors used a social constructionist approach to grounded theory, which acknowledges that researchers’ perspectives influence the framing of questions and interpretation of responses (Charmaz 1990). In this study, the research questions and subsequent analysis reflect a concern for improving access to treatment for Chagas disease.

The cultural consensus analysis responses for all participants were recorded in an Excel sheet, and consensus analysis was completed using UCINET v. 6.685 (Borgatti, Everett and Freeman 2002, Harvard Analytic Technologies, September 17, 2019). One question which over 10% of respondents had not answered was removed from the analysis. CCA yields three types of data: 1) an eigenvalue ratio, which provides a test of whether a single cultural pattern prevails in the sample; 2) a culturally correct answer key, indicating the correct response to each item in the questionnaire according to the prevailing cultural model of CD in the sample; and 3) a cultural competence score for each respondent, measuring between 0 and 1, which indicates how closely the individual approximates the cultural ideal of the entire group. An eigenvalue ratio >3 provides strong evidence of a shared cultural pattern. We calculated eigenvalue ratios and mean competence scores and generated culturally correct answer keys for the overall sample as well as for subsets based on gender, nationality (Salvadoran and Mexican), and disease phase (indeterminate phase and Chagas cardiomyopathy). Analysis of eigenvalue ratios, mean competence scores, and culturally correct answer keys helped us assess whether a shared model existed in the overall sample, and the extent of differences associated with disease phase, gender, and national origin. Using SPSS v. 26 (IBM Corporation, Armonk, NY), we conducted a Spearman’s correlation and Mann-Whitney U tests to assess the impact of key variables on cultural competence scores.

Results

Interviews

In the semi-structured interviews, participants were asked about the perceived causes of CD, impact of diagnosis, symptoms, access to treatment, strategies to treat the disease, sociopolitical context of CD, and adaptation to life in the US. Respondents’ narratives centered on four major themes: conditions in home countries, adaptation to life in the US, the emotional impact of the disease, and challenges in completing antiparasitic treatment. Participants’ management of CD entailed not only dealing with potentially severe biological impacts but engaging in a day-to-day struggle in the context of poverty and marginalization, while learning to live with the knowledge of having a silent, unpredictable, and potentially fatal infection.

Conditions in home countries

Forty-five participants (90%) had originally been born in Central America (n = 32) or Mexico (n = 13). The other five were from Bolivia (n = 4) or Argentina (n = 1). Thirty-three were female (66%), and seventeen male (34%).

Nearly three-quarters of respondents (n = 36) had lived in a rural area of Latin America, often in conditions of poverty and marginalization. Most had lived in housing made of materials susceptible to triatomine infestation, including adobe (n = 28), mud walls/floors (n = 13), or thatch roofs (n = 5). Respondents often painted a bleak picture of conditions in their home countries prior to emigrating to the US. “I was so poor, sometimes I ate and sometimes I didn’t,” said Paola, who moved to the US 36 years ago. “Before coming here, we lived in a really bad place,” noted Mayara, who had also been in the US for over 20 years. “It was like shacks of cardboard and sheet metal.”

In some cases, respondents directly linked CD to experiences of poverty and violence in their home countries. “When I was a little girl, at the age of six, I worked a lot in the fields alongside my parents, and we were poor and went barefoot. That’s why I didn’t feel the bite of this animal. Because we were poor and went barefoot” (Carlota, Guatemala). For Victoria, the dislocation caused by El Salvador’s civil war, as well as conditions in the countryside, ultimately led to her Chagas disease.

I think that I got [Chagas] during the war … The chinches[kissing bugs] bit me because many times I had to sleep in the mountains, on the bare ground, under rain, storms, fleeing from the war. And the homes, too, there were a lot of chinches. They were all homes of the poor. They were houses of thatch, mud, and I remember that in the cracks of the mud, of the wall, there were chinches. In the beds. It was normal to see chinches.

For half of the respondents, the decision to go to the US was framed in terms of securing a better future (n = 17) or escaping poverty (n = 8). “I needed to help my family,” said Luis, “because in Guatemala you couldn’t make money.” Catarina, a 55-year-old Salvadoran, recalled, “I had a small child, I was alone with him, you could say I came fleeing from poverty.” Others were motivated by a desire to find work (n = 8) or be closer to family (n = 8), while still others were fleeing war or violence (n = 5).

Adaptation and marginalization in the US

Public health programs have typically confronted CD as a distinct, biomedical challenge decontextualized from the broader socioeconomic context in which affected people live. However, for participants in this study, CD was but one concern in a host of daily life challenges emerging from economic vulnerability and adaptation to a new sociocultural landscape. In turn, socioeconomic conditions complicated confronting and managing CD. While participants had lived an average of 21.8 years in the US, many continued to face severe socioeconomic marginalization; over 60% lived in households earning below the federal poverty line, while 60% had not completed high school (Forsyth et al. 2018). Two respondents had migrated as children, had become fluent in English, and launched successful careers with accompanying middle-class lifestyles. However, the majority faced an ongoing economic struggle for survival.

The bulk of respondents (n = 30) identified language as the most difficult aspect of adjusting to the US. For many respondents, like Eleana, unfamiliarity with English and distance from family support networks created profound feelings of isolation

Perhaps language, above all. And then jobs, education, the jobs are so far from where you live, you have to travel so far to get there. Also, if you don’t have a lot of family here, the whole process is a little depressing, because you need family to help you in any kind of change.

Finding and maintaining jobs was another challenging aspect of coming to the US, according to 13 respondents. This was particularly difficult for those who had begun to suffer debilitating symptoms from CD. Carlota had to give up her job cleaning houses:

That was the most difficult part, the jobs. I started to get jobs here and there, and worked and worked. And then [the doctors] found out I had this Chagas disease and I had to stop working because I didn’t have time to go to work. I was spending all my time in the hospital.

Finally, immigration status was a major source of anxiety for respondents who were not citizens or permanent residents. Roberto’s status augmented the isolation he felt from being unfamiliar with English: “Well when you get here you go about in fear, if you don’t have papers here. Also language, well you know that if you don’t speak the language you feel afraid and that frustrates you in the beginning.” It could also compound the already difficult situation of finding work. “I’ve had a lot of opportunities for work,” said Marisol, “but without a work permit I couldn’t get them.” The gnawing fear of deportation is a major deterrent to seeking healthcare. “Many [in the community] are undocumented Hispanics, and they are afraid to get treatment because they think they will get deported,” said Sofia.

Separation from families posed another challenge, according to 13 respondents:

The first years I suffered a lot. My father was back there, and my mother wasn’t with us anymore. The hardest part was getting used to not seeing them … Above all the face-to-face contact with my family, because you can call, but it’s not the same. That was the most difficult for me, being far from family (Sandra).

This separation deprived respondents of their support system, making it harder to manage the impact of the disease. Family members play a critical role not only in helping with transportation to appointments and payment of medical bills, but in providing emotional support when respondents experienced anxiety over their CD. Other difficulties in adjusting to life in the US mentioned by participants included healthcare (n = 3), expenses/bills (n = 3), and cultural differences (n = 2).

Emotional impact

In participants’ narratives, the physical and emotional consequences of CD are closely interwoven, disrupting daily life. A CD diagnosis is often traumatic, even for asymptomatic patients, since they must learn to live with the ongoing worry that the disease could worsen at any moment, without warning. Diagnosis forces respondents to confront the possibility of a premature death. “I felt terrible,” said Beatriz, “that the sky was falling, that I was going to leave my daughter behind, that I was going to die without seeing my grandkids … I felt like crying – I was devastated.”

Knowledge of the disease heightened many respondents’ anxiety, as in Lorinda’s case:

I am always in a panic that these larvae will grow in my blood … It’s always in my thoughts … because this illness, once it’s advanced, there’s no cure … My brother died from [Chagas disease], and I don’t want to die, I’m only 57. I want to see my family and my grandkids grow.

Respondents’ anxiety and fear was fueled by uncertainty over cure. When Nuria, a 35 year old Salvadoran housekeeper, was diagnosed, she felt “very scared. Because they told me there was no medicine, or that there was medicine but it wasn’t 100% certain that it would cure. I just got so scared.” For respondents who had already developed complications from the disease, feelings of fear, powerlessness and depression were magnified. Etiological treatment is not thought to be effective in this group, leaving people without hope of a cure. This knowledge was especially troubling for Victoria, mother of two young children:

I got scared. I sought help in the hospital but they couldn’t treat me because my case was chronic and treatment was more for people who had more recently acquired it … they didn’t tell me in those words but what I felt was, that it was practically a waste of time. It hit me hard.

Cristobal stated, “Dying is what worries me. It’s been 15 years that I’m sick. I don’t get better but I don’t die. But that’s my fear, I’m getting on in age and I’m always sick.” Sara, who had developed heart complications, struggled with depression. “Once I learned more about Chagas disease, I started to worry … I became depressed, I felt very sad, because you don’t know if you’re going to die tomorrow or what … I felt down, sad, without desire to do anything, and insomnia.”

Some patients, like Jimena, lived with pacemakers or defibrillators, which, while helping manage the impact of Chagas cardiomyopathy, provided a new source of anxiety, with the devices providing constant reminders of the presence of the disease and the possibility of life-threatening impacts:

Well I’m on medication and my worry is that the [defibrillator] is going to activate, because it happened to me once, that I’ll have a heart attack and the device will activate … When I have a scare [susto] or something frightens me, I’m mortified, because if it occurs when I’m out on the streets it’s really bad. Because that happened to me already.

For Sara, the physical impacts of advanced chronic CD disrupt the possibility of tranquility in her daily life. The emotional and physical impacts of the disease are enmeshed, and compounded by doubts surrounding curability, preventing the possibility of returning to a “normal” or disease-free existence:

There were strong palpitations that didn’t stop, and I felt my heart was very large. It’s very uncomfortable because you don’t have time to sleep, or anything, you can’t relax with the constant jumping of your heart that isn’t at all normal. It’s just horrible, you feel bad, angry, irritated, and sleep deprived … and besides you are always wondering if it can be cured and they say there is no cure. The truth is it’s very worrying, you don’t have a normal life.

Challenges in completing treatment

People with asymptomatic chronic CD need to be targeted for screening and treatment to prevent complications from the advancement of the disease or, in the case of women of childbearing age, preventing future congenital transmission. However, this requires people who essentially feel healthy (in the absence of other health problems) to undergo a treatment which could result in nausea, insomnia, rash, and other side effects. “Really I don’t feel anything,” said Galilea. “I don’t know what the symptoms are, just that it’s a very silent disease without symptoms, nothing. The only symptoms I had were from the treatment, it shook me up some.” Treatment is often an ordeal that makes it difficult for patients to continue working or functioning in a normal way, as Camilo, a successful mechanic born in Bolivia, described it: “Terrible. It gave me a headache, it made me feel lethargic, just sick. I wasn’t hungry, [I felt] slow, weak, and the last dose made me break out into hives.” Other patients could not tolerate either of the two available medications. Cristobal first took nifurtimox, and then tried benznidazole.

One went to my head, it was like it erased my mind and I think I lasted one or two weeks taking it. And then they gave me another and my hands started to swell and I got spots and a rash and all that. I also took that one two or three weeks and then I told the doctor that I wasn’t going to be able to take it anymore.

Sara likewise first attempted treatment with benznidazole, then switched to nifurtimox, but both caused strong reactions:

They were pills, first they gave me a medicine that gave me a strong allergy and a rash broke out all over my body, and since it was going to my lips and eyes … they suspended this treatment and gave me another, that other one completely took away my hunger. I didn’t eat for months, just liquids.

Treatment with these drugs can entail a period of physical suffering for patients who may otherwise feel perfectly fine physically, yet as Lorinda explains, treatment is the only hope of overcoming the disease:

[The medicine] was so strong, it really weakened my bones … From then on my bones have hurt … From so much medicine you get scared, it frightens you, but you don’t want to die either, right? And sometimes I feel panicked, I feel scared, but the truth is I did the treatment because I don’t want to die, I want to live, and thanks to it I’ve lived longer.

Alternative treatments

Respondents made frequent use of both alternative remedies and conventional healthcare providers (Table 1). Over half of respondents had used an alternative remedy in the preceding year, while 30% had used such remedies five or more times. The majority of respondents had also frequently sought care from conventional healthcare providers, and only five (10%) had not seen a doctor in the prior 12 months. We also asked respondents what alternative or ethnomedical remedies would be good for CD or heart conditions (Table 1). Only one respondent mentioned a remedy specifically for CD (chlorophyll), although nine remedies were mentioned as beneficial for heart problems.

Table 1. Los Angeles CD patients’ utilization of conventional and traditional medicine

Use of conventional vs. traditional medicine for any reason during the past year
Frequency	Conventional doctor – n (%)	Traditional remedy – n (%)
None/did not use	5 (10)	21 (42)
once	4 (8)	9 (18)
2–4 times	19 (38)	5 (10)
5+ times	22 (44)	15 (30)
Natural remedies mentioned for Chagas disease or heart symptoms
Spanish term	English term	Remedy use
clorofila	chlorophyll	Chagas disease
ajo	garlic	heart condition
Jugo de manzana y pepino	apple and cucumber juice	heart condition
la manita	chiranthodendron	heart condition
floricuerno	rat-tail cactus	heart condition
botella de alcohol y toalla caliente sobre el pecho	bottle of alcohol and hot towel compress	heart condition
te de hoja de mandarina	mandarin leaf tea	heart condition
ruda	rue	heart condition
canticle (boldo)	boldo (Peumus boldus)	heart condition
te de manzanilla	chamomille tea	Chest pain, stress, fever

Cultural consensus analysis

The CCA questionnaire focused on causes, symptoms, treatment, access to treatment, and the sociopolitical context of CD, largely reflecting the major themes emerging from the semi-structured interviews. Forty-one participants completed the CCA questionnaire; 28 self-identified as female and 13 as male. In CCA, a ratio of the first and second eigenvalues that is greater than 3 provides an initial indication that a shared cultural model exists in the sample. In this study, the eigenvalue ratio was 8.37, providing strong evidence of a shared cultural model.

Moreover, CCA provides a competence score between 0 and 1 which assesses how closely each participant matches the shared model. The mean competence score in the sample was 0.59, with only slight variation between men (0.60) and women (0.59). We assessed differences between groups based on an analysis of competence scores and the culturally correct answer keys. A Spearman’s correlation of several demographic variables including sex, age, years lived in the US, and disease phase indicated that years of education (0.495) and age (−0.385) were significantly correlated with competence. Mean competence was significantly higher in participants under 50 (0.64 vs. 0.53) and with a high school education or above (0.64 vs. 0.55). We did not observe significant differences in mean competence based on gender, disease phase (indeterminate vs. presence of cardiomyopathy), national origin, use of an herbal remedy in the last year, or length of time living in the US. Overall, younger respondents were more likely to have completed a high school education or above.

CCA also produced a “culturally correct answer key” for all items in the questionnaire, based on the group’s shared cultural model. The key is produced in part based on the frequency of positive or negative responses to each item. Additionally, individuals whose responses more closely approximate the cultural ideal are accorded more weight in the analysis. While CCA suggested a shared overall model of CD, there were variations on some subthemes. Differences (on 18% of items) arose particularly between respondents with cardiomyopathy and those in the indeterminate phase of the disease. Below we describe the overall explanatory model of CD and key differences based on gender, disease progression, education, and other factors.

Causes and risk factors

In CCA, respondents’ cultural model of causes of CD largely approximated the biomedical model of the disease (Table 2), with the key difference being that dogs were not recognized as a reservoir of infection. Participants affirmed kissing bugs spread the disease, and that living in the countryside or in housing made of natural materials increased the risk of exposure to kissing bugs. Mother-to-child transmission was also affirmed in the shared cultural model. Other causes outside of the biomedical understanding of CD, such as witchcraft, exposure to excess heat, and contagion through touch, were rejected.

Table 2. Chagas disease causes and risk factors, cultural consensus analysis

Can people get sick from Chagas because they do not eat well?	No
Does someone get sick from Chagas because they have been bitten by a kissing bug?	Yes
Do dogs carry Chagas?	No
Can you get Chagas from touching another person who has Chagas?	No
Do kissing bugs live in palm or thatch roofs?	Yes
Is Chagas caused by a virus (microorganism) that lives in the blood?	Yes
Can you get Chagas from spending too much time in the sun or in hot places?	No
I got Chagas because of the kissing bugs.	Yes
Children can inherit Chagas disease from their father.	No
Mothers can pass Chagas disease to their babies.	Yes
Chagas disease may have been created in a laboratory by the US government.	No
There is a lot of Chagas because they are cutting down the forests.	No
Chagas is sometimes caused by witchcraft.	No
I have Chagas because I lived in the countryside.	Yes

Table 3. Chagas disease symptoms, cultural consensus analysis

Does Chagas affect the liver?	Yes
Can Chagas cause diabetes?	No
Can Chagas cause a heart attack?	Yes
Does Chagas cause swelling in the body?	Yes
Does Chagas feel like a cold?	No
Do people with Chagas have difficulty breathing?	Yes
Do people with Chagas have difficulty seeing?	No
Does Chagas produce tiredness and fatigue?	Yes
Does Chagas produce pain in the chest?	Yes
If I argue with my significant other, my Chagas gets worse.	No
Chagas only lasts a while and then gets better.	No
Chagas mainly attacks the heart.	Yes
A lot of people have Chagas but don’t realize it.	Yes
I felt worried when they told me I had Chagas.	Yes
I feel happy when I think about Chagas.	No
I can’t relax because I have Chagas.	Yes

Table 4. Access to treatment for chagas disease, cultural consensus analysis

Most doctors in the US don’t know what Chagas is.	Yes
It’s easy to get medical treatment for Chagas.	No
If I had money, I would have already cured my Chagas.	No
It’s hard to communicate my health needs to American doctors.	Yes
It’s easy to get to my medical appointments.	Yes
It’s hard to do the treatment for Chagas because I lose a lot of time.	No
I would rather get treated for Chagas in my home country than the US.	No
Due to other responsibilities I have it is difficult to go to the doctor.	No

Table 5. Treatment of chagas disease, cultural consensus analysis

Is there a cure for Chagas?	Yes
Should a person with Chagas donate blood?	No
If I have Chagas, is it good to eat a lot of fried food?	No
Garlic is very good for people with Chagas.	No
If you have heart pain it is good to drink a tea made from mandarin leaves.	No
You can cure Chagas with nopal.	No
Chest pains can be eased with mint tea.	No
Chagas gets better if you drink Coca Cola.	No
Teas or home remedies can help with pains in the chest or heart.	No
If you have Chagas, you will need a pacemaker sooner or later.	Yes
The medicines to treat Chagas are very toxic.	Yes

Symptoms

Respondents’ description of symptoms correlated closely with the biomedical model (Table 3). One key difference was that respondents’ explanatory models indicated Chagas could affect the liver. (Although liver damage from Chagas disease is not described in the biomedical model, patients need to undergo liver testing while taking benznidazole or nifurtimox because of these drugs’ potential toxicity.) However, men and women differed on this point; women did not agree that CD could affect the liver. Respondents’ explanatory models emphasized CD’s impact on the heart and affirmed associated symptoms, such as shortness of breath and chest pain, though only men acknowledged swelling as a potential symptom. Participants also indicated CD had an important emotional impact, causing worry, yet would not be easily aggravated by stress such as an argument with a loved one. In contrast to participants with indeterminate CD, those with CD-related cardiomyopathy attributed both swelling and vision loss to the disease, but rejected liver damage. Participants with cardiomyopathy also affirmed CD caused ongoing anxiety, while those without symptoms experienced worry primarily at the time of diagnosis. Participants originally from Mexico and respondents with less than a high school education tended to identify more symptoms and also associated CD with ongoing anxiety.

Table 6. Social context of chagas disease, cultural consensus analysis

Do Americans (Anglos) also get Chagas?	Yes
Chagas is only in the countryside.	No
There are also kissing bugs that transmit Chagas in the US.	Yes
There is a lot of talk about Chagas on TV.	No
Most people who have Chagas are rich.	No
There are many programs and campaigns against Chagas in the US.	No
People will think less of me because I have Chagas.	No
It’s hard to find work because I have Chagas.	No
Chagas mainly affects poor people.	Yes
I can’t tell them I have Chagas at work.	No
The authorities in the US are doing all they can to eliminate Chagas.	No
Chagas is more common in the US than my home country.	No

Access to treatment

The culturally correct answer key revealed several challenges to accessing treatment for Chagas disease (Table 4). Respondents agreed that it is difficult to communicate about health concerns with American doctors, who were largely unfamiliar with CD. Although respondents, men especially, felt in general it was easy to get to medical appointments and see a doctor, getting medical treatment for CD was considered difficult. Respondents with less than a high school education cited difficulties in communicating with US doctors but found it easy to get to medical appointments, whereas the opposite was indicated by respondents with a high school education. While participants with cardiomyopathy considered it easy to get to appointments and obtain treatment, those with indeterminate CD did not.

Treatment

Regarding treatment, respondents rejected alternative treatments, such as teas and garlic (Table 5). At the same time, the overall respondent explanatory model considers the medicines to treat Chagas as toxic, although men and women differed on this point. Men stressed the toxicity of the medication, but women did not. Respondents, many of whom were diagnosed following blood donation, recognized that people with CD should not donate blood. Finally, the potential need for cardiological intervention (a pacemaker) was affirmed. When analyzing by nationality, Mexicans especially considered treatment toxic, and did not feel the disease could be cured. Participants with or without cardiomyopathy affirmed CD could be cured, but those with cardiomyopathy emphasized potential side effects, and also affirmed the value of natural remedies (garlic and mint tea).

Social context

Participants’ explanatory models underscored the socioeconomic context of CD, affirming it mainly affects the poor (Table 6). While the overall model asserted that disease was not restricted to rural areas, women and respondents with less than a high school education affirmed they acquired CD because of living in the countryside. Concerns about potential stigma surrounding the disease were not evident, but participants noted the absence of public health responses or discussion in the media. Most respondents noted that kissing bugs also inhabited the US and that the disease could also affect Anglos (non-Latinos), although respondents with less than a high school education did not feel that this was the case. In contrast to the overall sample, Mexicans and respondents with cardiomyopathy expressed concern about sharing their CD diagnosis with employers.

Discussion

Taken together, participants’ responses in the cultural consensus analysis and the semi-structured interviews underscore Chagas as a hidden, neglected disease. People with CD predominantly describe conditions of social and economic marginality in their countries of origin, at times punctuated by violence. The majority were not recent immigrants and had spent decades in the US, but still faced significant challenges in adapting to US language and culture, while separated from family support networks. Daily life in the US continues to represent a significant struggle, with over 60% living in households that earn below the federal poverty line (Forsyth et al. 2018). Feelings of isolation are compounded by language barriers and restrictive immigration policies, which create anxiety for participants regardless of their status and reinforce feelings of not belonging. Moreover, diagnosis of CD can be emotionally traumatic, adding to a sense of isolation from mainstream society. While participants are willing to make use of conventional medical treatment, this is difficult given the lack of familiarity with the disease in the US health system. Treatment itself entails undergoing medications that produce side effects, without a straightforward way to determine whether treatment was successful.

While the CCA answers did suggest Chagas could be “cured,” some participants’ narratives expressed uncertainty and anxiety on this point. In particular, participants with CD-related cardiomyopathy sometimes noted in interviews that it was too late for their CD to be cured, even though they recognized the possibility of cure in those detected early. Several respondents affirmed CD was an ongoing worry, even following treatment, as they were aware of limitations in the efficacy of antiparasitic drugs (which necessitate ongoing monitoring of CD patients regardless of whether they are treated with benznidazole or nifurtimox). Moreover, participants described challenges in getting to medical appointments because of transportation difficulties, despite that the culturally correct answer key affirmed getting to medical appointments was easy. Still, in the CCA, there were several differences between groups on this point, with women, respondents of Mexican origin, and younger individuals affirming difficulties in getting to appointments. Younger individuals may have been more likely to face conflicts in getting time off from work. Overall, people participating in the interviews were more likely to be in regular contact with the Center of Excellence for Chagas Disease and so would find it easier to get to appointments than people with CD unable to participate in the study. Finally, while over half of respondents acknowledged using natural or herbal remedies, the value of these treatments for CD was not affirmed in the CCA. This likely points to the fact that CD patients in Los Angeles often have not heard of the disease before being diagnosed, and so are unlikely to have heard of either biomedical or ethnomedical treatments.

Certain findings contrast with previous research on CD. In Bolivia, patients exhibited strong confidence in the efficacy of ethnomedical remedies (Forsyth 2015), and were able to name 33 potential remedies for CD and 66 for heart conditions (Forsyth 2017a), compared to only one and nine, respectively, among Los Angeles patients. Likewise, a survey in the Latin American community of Los Angeles of 2,677 people found 86% had never heard of CD (Sanchez et al. 2014). Although the disease is highly neglected in all settings, Bolivia has had both a widespread vector control campaign and a campaign to control congenital transmission. Greater familiarity may have enabled Bolivians to begin developing an ethnomedical response to the disease, which was less possible amidst low awareness in Mexico and Central America, despite a willingness to use ethnomedical remedies for other health problems. Moreover, the Los Angeles explanatory model accepted the curability of Chagas disease, whereas the Bolivian explanatory model did not. This probably reflects the fact that 80% of Los Angeles patients had received treatment (Forsyth et al. 2018), whereas few participants in the Bolivian study had been able to obtain medical treatment. However, both models stressed the emotional and social dimensions of the disease while largely agreeing with the biomedical model on symptoms.

Previous research has noted stigmatization of Chagas disease, based on its association with rural poverty, and in some contexts a diagnosis could prevent securing employment (Guariento et al. 1999; Sanmartino 2009; Ventura-Garcia et al. 2013). Although items suggesting stigma were not affirmed by the CCA in this study, respondents did describe an overall sense of isolation upon being diagnosed, and encountered incredulity, unfamiliarity, and in one case laughter from healthcare personnel upon seeking medical attention. Similar difficulties in accessing care have been described in Colombia (Martinez-Parra et al. 2018). While Chagas, because it typically lacks outwardly visible symptoms, may not produce the same kind of stigma as a condition such as cutaneous leishmaniasis, it nevertheless serves as a reminder of patients’ difference and separation from mainstream society.

Side effects from the only two effective antitrypanosomal drugs, benznidazole, and nifurtimox, have been well described in the medical literature, leading some 20% of patients to suspend treatment (Forsyth et al. 2016a; Miller et al. 2015a; Sperandio Da Silva et al. 2017). Benznidazole can trigger neuropathy or dermatological reactions (Miller et al. 2015). Nifurtimox produces frequent side effects, including anorexia and amnesia (Forsyth et al. 2016). However, the impact of side effects goes beyond the biological. Side effects may compel patients to miss work, add to economic hardship, or exacerbate depression and anxiety, and fears surrounding side effects may discourage healthcare providers from offering treatment (Klein et al. 2017; Manne-Goehler et al. 2015; Pinazo et al. 2017). Along with improvements to current treatment regimens, a more comprehensive strategy of care, which recognizes patients’ socioeconomic needs and provides access to mental health support, is key to helping patients manage treatment.

As others have noted, attempts to describe culturally framed practices and perceptions around illness should not be disassociated from the political and economic structures which affected people negotiate. Structural violence not only places poor, vulnerable populations at greater risk of disease, but limits their options for accessing care (Farmer 2004). CD illuminates a particular aspect of structural violence, in which pervasive inaction from authorities, public health systems, the pharmaceutical industry and others have left a predominantly vulnerable population exposed to a disease producing substantial morbidity. The neglect of CD is but one facet of the intense structural inequalities which place socially vulnerable migrants at risk of harm in the world’s wealthiest nation (De Leon 2015; Holmes 2013). On the other hand, CD affects people of all backgrounds and income levels, and overemphasizing its connection with rural poverty risks perpetuating prevailing stigma.

Public health efforts in endemic countries of Latin America have focused primarily on eliminating domestic transmission by triatomines, with substantial success. Systematic screening and treatment programs have focused primarily on children and, more recently, women of childbearing age. This is a reflection of the strength of current recommendations for treatment of CD (shaped by more definitive evidence of treatment benefits for these groups), as well as the lack of a reliable test of cure (Kratz et al. 2018), which prevents better characterization of treatment benefits for other groups. Adults, particularly older adults with CD, have often felt excluded or left to fend for themselves (Forsyth 2015; Magnani et al. 2009).

In the US, the most significant public health actions against Chagas disease have focused on halting transmission through systematic screening of blood and organ donations. However, proactive screening in healthcare settings, which would enable timely treatment and care of affected people, is widely and conspicuously absent. In other words, CD is neglected provided it is not spread through blood transfusion and organ transplantation, emphasizing the “otherness” or separation of people with the disease from mainstream society. The lack of a healthcare response is sometimes justified by the limited available evidence on treatment effectiveness combined with the side effect profile of the drugs, even though drugs with similar side effects may be made quickly available for other life-threatening conditions. Meanwhile, right-wing news outlets and even mainstream media sometimes portray CD and kissing bugs as something “brought” by immigrants, ignoring that both kissing bugs and T. cruzi exist in the natural ecology of the southern half of the US (Klotz et al. 2014; Montgomery et al. 2014), and probable autochthonous transmission, though not well understood, is sometimes documented (Garcia et al. 2015; Hernandez et al. 2016).

Because participants were patients of one of the few US clinics offering treatment for CD, their experiences are not representative, but reflect the particular context of the San Fernando Valley in Los Angeles. This perhaps overestimates how much people with CD utilize the medical system. CCA indicated getting to medical appointments was not difficult for this sample, but we may have failed to reach those patients for whom access may be more challenging.

Our study highlights the impact on personal lives of a neglected and hidden disease. Although CD is typically treated from a strictly clinical perspective, this is insufficient to decisively eliminate the disease from a public health standpoint. Participants in this study highlight numerous challenges in accessing treatment, ranging from difficulties communicating with healthcare personnel who are unfamiliar with the disease, to challenges in enduring side effects from treatment. Effective programs to address CD in the US should include awareness-raising activities focused on both communities at risk and healthcare workers who serve those communities. Moreover, CD is accompanied by both social and emotional challenges. People may need support in finding and getting to healthcare providers who can diagnose and treat CD, and in linking with mental health or patient support resources to help manage the potentially acute anxiety and worry accompanying diagnosis. Growth and support of patient organizations is also a necessary step to raise awareness of the disease and to link newly diagnosed patients with networks of support. All these efforts should accompany the development of improved diagnostics, a better test of cure, and safer, more effective drugs for CD.

In conclusion, anthropological research on CD and other neglected diseases should consider both the specific cultural and historical contexts affecting patients, which may influence patterns around, for instance, ethnomedical remedies, while also analyzing the political and economic structures that cause a widespread, life-threatening disease to persist in the shadows. Ironically and tragically, greater visibility for CD is needed, yet the same visibility risks exposing people with the disease to anti-immigrant sentiment. In the US, discussions about improving access to healthcare for CD should not only consider potential language barriers and limitations in existing diagnostic and therapeutic tools, but widening gaps between rich and poor and intensifying discrimination against migrants. It is ultimately the people affected by CD who are neglected, and this is likely to persist as long as health is viewed as a commodity rather than a human right. CD should be a topic of broader conversations about addressing healthcare disparities and supporting the healthcare rights of vulnerable people and communities in the US. Ending CD as a public health problem will involve a long-term commitment from a wide coalition of stakeholders, not only healthcare institutions working in tandem with multidisciplinary teams, but also grass-roots organizations serving the diverse and heterogeneous people impacted by the disease.

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.