“Leprosy leads to the emergence of social stigma and prejudice”
Paolo Moiola 4/7/2016
Interview with Olívia Dias de Araújo, a public health specialist of the IntegraHans project
Hansen’s disease (leprosy) can be disfiguring and mutilating for those people affected by it and can lead them and their families to being socially marginalized. According to the World Health Organization (WHO) Brazil is the country in second place with the highest number of new cases of leprosy behind India: 31,064 compared to 125,785 new cases, of a total of 213,899 worldwide in 2014. The estimates also mention between 1 and 2 million people with irreversible disabilities related to this disease, caused by the Mycobacterium leprae bacteria, discovered in 1873 by the Norwegian scientist Dr. Gerhard Armauer Hansen.
Paolo Moiola , a Latinamerica Press collaborator, spoke with Olívia Dias de Araujo , a public health specialist and professor of nursing at the Federal University of Piaui in Teresina, capital of the state of Piauí. The professor is currently following up on a project on Hansen’s disease named IntegraHans-Piaui, coordinated by Dr. Telma Maria Evangelista de Araújo in Floriano, a small town where, in recent years, the number of patients has reached alarming levels.
Hansen’s disease is found mainly affecting poor people in poor living environments. Can anything be said about a cause and effect correlation?
Although Hansen’s disease is found in the poorest countries these days, and in the poorest strata of the population within these countries, it is not known with certainty how much some of the variables weigh, such as housing, nutritional status, concomitant infections — such as HIV and malaria — or previous infections caused by bacteria. The role of the genetic factors has been evaluated for a long time: the distribution of the disease in urban centers, families or communities with common genetic composition suggests this possibility.
Because of its appearance — sores, deformities of the body, in particular feet and hands — people with Hansen’s disease have always been socially stigmatized which has in turn marginalized them from their communities. Does this still hold true today?
Damage to the peripheral nerves is the main characteristic of Hansen’s disease. This condition can lead to physical disabilities and deformity. Disabilities and deformities are the cause of many problems for the patient: reduced working capacity, limiting their social life, development of psychological problems, and rejection by society. Therefore, the answer is: yes, even today leprosy brings about the presence of social stigma and prejudice.
So, to avoid the stigma and social exclusion, people with leprosy try to hide their disease.
This is true. The sick persons hide their condition even from their relatives for fear and shame. We see this in all social classes and at all levels of education. Moreover, the reality is that, once discovered, patients are shunned and excluded by many people from their own families and social environment.
Brazil is the country of the continent with the largest number of Hansen’s disease cases.
Hansen’s disease is gradually concentrating in a small number of countries. Most of new cases, roughly 81 percent, are occurring today in just three countries: India, Brazil and Indonesia.
Brazil ranks second in the world in total number of new cases. In the Americas it is the only country that has not reached the global goal of eliminating leprosy. WHO has established that Hansen’s disease is considered eliminated when only one case per 10,000 inhabitants is recorded.
In Brazil, the epidemiological situation is very heterogeneous because of the great variability of the “prevalence rate” in the different regions of the country. Mato Grosso, Tocantins, Maranhão, Pará and Piaui have the highest number of cases. However, leprosy is virtually nonexistent in the southern states of the country.
In your opinion, is the Brazilian government combating Hansen’s disease adequately?
According to my personal perception, Brazil is making efforts in this fight with the right strategies, but it is also making mistakes that end up compromising the achievement of the objectives set by the WHO. The federal government argues that we are now close to eliminating Hansen’s disease. The reality is different and it shows that there are insufficient statistics and hidden situations in some regions where the disease is endemic. The problem is that it will be difficult to reach the elimination of leprosy without an improvement in the general living conditions.
You are doing follow up on the IntegraHans project against Hansen’s disease in Floriano. Why was this city chosen?
Because the city of Floriano is a municipality that has historically been hyperendemic in regards to Hansen’s disease. The numbers show it. It has a prevalence rate of the disease that is six times higher than the ideal: six cases per 10,000 inhabitants. Between the years 2001-2014 the city reported 1,083 cases of leprosy, coming in second place in the northeastern state of Piaui, preceded only by Teresina, the state capital, despite being the fifth city in population statewide; this is why Floriano presents a worrying situation.
What needs to be done to help those afflicted and to prevent the spread of the disease?
To help them, it would be important to invest heavily in basic hygiene and health services, improve housing conditions and nutrition, and provide quality public education and access to health services at all levels, including the right get to rehabilitation treatment.
But an alternative in order to avoid new cases is to do what we are doing with the IntegraHans project: an active search for family members and all those who come in contact with the patients in a social setting, as these people are exposed to a seven times greater risk of contracting the disease; only then will we be able to break the “epidemiological chain.” The disease cycle will not close without an improvement in quality of life and health conditions.
You visit the patients in their homes. Have there been situations that have affected you in a particular way during these visits?
There are several situations that have impacted me greatly during all this time. I remember two cases in particular; there is the one of a man who was not even allowed access to the primary health care unit to treat his lesions. We found him in a terrible situation: severe malnutrition, foot wounds with exposed bone, alcoholism, and an unbearable smell. It was a sad reality that the health system that should have take care and cure him, had shunned him. We took him to Teresina and handed over his case to the community leaders. He is doing quite well today.
Another emblematic case is that of two sisters whose lives have been destroyed because of leprosy. They lived near a school that was eventually closed down due to the cases of leprosy that presented in this family. One of the sisters still lives confined at home, without even having learned to read or write. Stigma and prejudice are major problems. It is a devastating situation. Personally, I had never before known anything so upsetting and terrifying. Human beings are cruel.
As a health worker and as a person, what is your greatest hope?
My greatest hope is that the Unified Health System (SUS), to which I am proud to be part of and of which I am a defender, work as its guidelines foresee it: with comprehensiveness, universality, equity and efficiency; with committed professionals and administrators working in adequate conditions. As a person, for our people of the northeast and all of Brazil, I hope that illiteracy, hunger, poverty and the great social inequality that now exists are eradicated. —Latinamerica Press. Compartir