Chagas Disease in Tropical Bolivia
I Cannot be Worried”: Living with Chagas Disease in Tropical Bolivia
Forsyth investigated the outcomes on one of the neglected tropical disease affecting over six million human beings worldwide: Chagas disease. As he noted, the disease affects not only the physical functioning of the physique but also the emotional well-being of the affected person. The creator notes that while the clinicians focus on treating the medical aspects of Chagas disease (CD), the affected person is left to deal with the impacts of the disease, particularly the emotional and the socioeconomic impacts. To put the bodily and psychological impacts of the disease into perspective, Forsyth (2017) investigated how the human beings affected with the Chagas disease in a department in Santa Cruz, Bolivia manage the condition and strive to adopt a normal-functioning daily life.
While over six million people - and 6% of the Bolivian population - are infected with Trypanosoma cruzi (the Chagas infection agent) in the world, an estimated 99% of them do not receive any treatment. Just like other neglected tropical diseases (NTDs), CD is linked to the social, economic inequalities, and thus disproportionately affects the poor. Moreover, CD’s NTDs’ status negatively impacts its treatment since it relies on the ineffective and outdated treatment regimens. One of the medications used, “benznidazole and nifurtimox, was developed over forty years ago,” with frequent side effects, and ineffective in treating adult patients. Previously, there were assumptions that the disease was untreatable in adults. However, Argentinian studies and efforts by Doctors Without Borders rendered that untrue: Setting treatment camps and treating adults by large numbers. The Pan American Health Organization further asserted on the 2010 Chagas strategy that “care for the infected adults should be a guaranteed part of primary care.” To harness the fight against Chagas, Bolivia’s President Evo Morales declared the elimination of CD as a national priority.
To study the emotional and physical distress caused by the disease Forsyth (2017) conducted an ethnographic study coupled with semi-structured interviews between March and June of 2013. The study comprised of 63 patients previously diagnosed with CD at the Centro Medico Humberto Parra, at the Palacios, Santa Cruz, in Bolivia. Patients filled the questionnaires on their experiences with the disease as well as their treatment strategies. Moreover, they narrated the structural inequalities that impact their treatment. The participant was also observed while family members, community members, the health official were constantly consulted.
Evidence showed that, on diagnosis, the patients felt emotionally devastated, confused, and even worried as soon as they were diagnosed. The thoughts that they would probably die affected their emotional state as well. On access to treatments, Forsyth (2017) observed that poor infrastructure and lack of economic resources were major hindrances to health care. Large hospitals with all equipment were far away from the people, while the high antitrypanosomal treatment costs meant that only 6.3% of the people received any treatment. The prohibitively expensive consultation and cardiology examinations lead to the diagnosed patients from the marginalized populations shy away from treatment. Moreover, contradictory messages from health providers make it difficult for the affected to access medication. Respondents believed that strong emotions worsen the symptoms of CD. To nullify the emotional impact as well as attain normalcy to their lives, patients have adopted means of being calm and minimizing worries about their condition. These empower the diagnosed to return to a normal existence.
In conclusion, the difficulty in assessing the treatment options due to high costs and inadequate infrastructures have pushed the patients into seeking means of coping with their conditions. Rather than resigning and losing hope, patients have adopted means of maintaining calmness and eliminating worries about their status, therefore finding a pragmatic strategy for restoring the sense of normalcy into their lives. Based on these factors, Forsy (2017) suggests that programs aimed at treating CD should be mindful of the social and economic impact of the disease so as to offer maximum support to the patients.
Reference
Forsyth CJ (2017) "I Cannot Be Worried": Living with Chagas Disease in Tropical Bolivia. PLoS Negl Trop Dis 11(1): e0005251. doi:10.1371/journal.pntd.0005251
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