Medical anthropologist examines the patient experience in Brazil.
An Uncertain Cure: Living with Leprosy in Brazil
By Cassandra White, Rutgers University Press (February 2009)
In the era of multidrug therapy (MDT), the treatment program that has transformed leprosy from a chronic disease requiring lifelong surveillance into one that can be treated and cured on an outpatient basis, the title of Cassandra White's book catches the eye. Dr. White, an assistant professor in the department of anthropology at Georgia State University, has made a study of how leprosy affects the daily lives of people in Brazil and the ways that economic and social realities constrain their attempts to get well.
She carried out the bulk of her research in 1998 and 1999. During those years, and on subsequent trips, she conducted in-depth interviews with 41 persons diagnosed with leprosy and two more who were being tested, and took field notes on the clinic visits of 144 separate individuals. She also interviewed 14 people who work with leprosy. Most of her research was done in Rio de Janeiro, at a referral center that primarily served patients living in the city's industrial North Zone and in the working-class suburban municipalities to Rio's north.
Dr. White's interviewees were from the favelas, or shantytowns, from low-income government housing, or lower middle class neighborhoods. While discarding the stereotypes of all favelas as dangerous, crime-ridden and filthy, she acknowledges problems favelados face, including flooding, poor sanitation, prevalence of disease, violence and economic hardship.
Conditions such as these provide a clue as to why leprosy persists in Brazil, Dr. White contends: the disease is a byproduct of structural factors, including an unequal distribution of wealth, power and healthcare services, which have negatively affected the health of the poor in Brazil. Added to that, for the individuals she met in Rio whose health, social life and work situation had changed because of the disease, "leprosy tended to exacerbate the problems of being poor in this Brazilian megacity." The 'uncertain cure' of the title arises from the difference between how the medical establishment defines the cure for leprosy and how the patient perceives it. Leprosy is cured with MDT within 6 to 12 months, yet someone who has been technically cured of the disease may continue to suffer from leprosy reaction, or may be permanently impaired because they were late to start treatment. As Dr. White writes of one of her interviewees, who had suffered severe nerve damage to his feet as a result of leprosy, "Celso was skeptical that leprosy was curable; to be cured, for him, would mean a return to the way life was before he began noticing symptoms."
Having observed healthcare workers argue with patients, telling them that they were "cured" and no longer had leprosy, even though they were still experiencing symptoms that were related to the disease, Dr. White suggests healthcare workers should find a way to acknowledge patients' suffering while helping them to understand the process of treatment for leprosy reaction. This is a lesson not to be lost on anyone treating the disease and its aftermath.
A chapter is devoted to the complexities of stigma -- on the job, among friends and neighbors, within the family -- and the book also addresses the campaign to rename lepra (leprosy) as hanseniase (Hansen's disease) as a way to reduce the stigma associated with the disease. Interestingly, among the people Dr. White interviewed, there was a wide range of understanding and interpretation of the two terms. While many knew lepra as a synonym for hanseniase, a few believed it was what they would get if they did not comply with the treatment program for hanseniase, while still others did not associate hanseniase with lepra at all.
Some of the individuals featured in An Uncertain Cure sail through their treatment with relative ease and only minimum disruption to their lives; others experience a range of physical, social and economic problems as a result of their disease.
All are given a voice in this sensitive and welldocumented study of the leprosy experience among low-income and working-class Brazilians which, while firmly rooted in its cultural context, succeeds in conveying what it is like for people to cope with leprosy.