Leprosy today: A visit to Agua de Dios

For the first 90 years, the village did not appear on any official maps. Surrounded by frothing rivers and barbed wire, Agua de Dios was where people affected by leprosy in Colombia were sent to be banished.

A three-hour drive from the capital Bogotá, Agua de Dios is found in the tropical inlands of Colombia, beyond the bridge “El Puente de los Suspiros” – The Bridge of Sighs. This was where, for almost a century, family members said their last farewell to relatives affected by leprosy. Regardless of their disabilities, those left at the bridge had to make their way to the village alone, which lays some ten kilometers further inland. There, they were given new identities. They were no longer considered citizens of Colombia, but members of the leprosy village.

In the tropical heat, hidden by lush vegetation, remnants of the barbed wire that surrounded the village can still be found. For the people living here, the present is still shaped by the past.

The professor

Established 1870, Agua de Dios was the third village in Colombia set aside for persons affected by leprosy. It was not until 1961, when global leprosy advice was made less strict, that the village was again properly incorporated into the country. Before that, it was a blank spot on the map – a parallel society with its own juridical system and its own cultural institutions. It existed solely to remove those affected by the disease from sight, from mind, from the country.

As in many places, the disease was originally understood as genetic or related to food. After learning about Hansen’s discovery of M. Leprae in 1873, this quickly changed. The fight against the disease became instead a fight against those affected by it. Contagion measures were put in place, aggressive policies to control the spread of disease through isolating those affected. To protect healthy people, those diagnosed with leprosy had to be identified and banished.

– The disease was introduced by European colonizers, brought in black bodies. The slaves were treated as cattle onboard slave ships. It was exacerbated by malnutrition, and overcrowding, explains Professor Hugo Sotomayor Tribín.

Originally a pediatrician, Professor Sotomayor has been dedicated to the social history of medicine in Colombia for many decades. In 2009 he established a large exhibition in one of the hospitals in Agua de Dios. It includes medical equipment used, images, but also musical instruments and other remnants of lives lived. The area of Agua de Dios is massive, as shown by a model dominating one of the rooms in the exhibition. On the wall hangs a portrait of Armauer Hansen – the same image that is still found in hospitals and classrooms around the world. Below him, parts of the barbed wire fence that surrounded the village are displayed.

In Colombia they refuse to use the term “Hansen’s Disease”.

– To understand the history of leprosy, you must understand the difference between pain and suffering, Professor Sotomayor explains. – The disease, how the bacteria affects the body, causes pain. But the responses to the disease, the abuses these people were subject to, caused suffering. The term “Hansen’s Disease” only focuses on the pain. The word we use, “lepra” (leprosy), explains the suffering: the widespread and irrational fear of the bacillus. In Colombia, first the black slaves were segregated, then the criminals and members of the guerillas. Subsequently, the lessons learned were used to abuse those affected by leprosy, in the name of science. This is my motivation for telling this story: We must request forgiveness for the many human rights violations that happened here. Physicians did this. Medicine was used to justify abuse. This cannot be repeated, Profesor Sotomayor explains with emphasis.

Some of the objects on display in the museum are special coins, which represent one of the novelties of the leprosy campaign in Colombia: special coinage to be used only inside the leprosy villages. The rationale was twofold: the first was the notion that coins could transfer the bacillus. This is, of course, not the case. The second was more sinister. The goal of the villages was to keep the people living there inside in place. With coins that were worthless outside the colony, it further ensured that there was no contact with anyone in the outside community. This practice was inspired by “farm coins” used in colonial farms in several parts of Latin America, typically meant to keep “mozos colonos”, peasants trapped within the large haciendas where they lived and worked. Later, some fifteen countries adopted similar practices. (See: Roger R. McFadden et.al: “The Numismatic Aspects of Leprosy”, 1993).

The archivist

Around the time the exhibition opened, head archivist María Teresa Rincón was hired to organize the many patient records and find out more about what had taken place in this parallel society. Much was still unknown, including how many people lived here. Ms. Rincón leads us past a room where six archivists and conservators work to preserve and organize documents, and then into the archive proper.

– These boxes contain patient records. The white boxes are for people with leprosy, the brown boxes are for the “healthy” – people who were born here but suffered from other diseases, explains archivist Rincón.

The boxes are put on shelves, from floor to roof, and fill several large rooms. So far, she has identified more than 100 000 individuals. Rincón opens a few of the files, and shows us the contents: picture IDs, detailed clinical descriptions, annual checkups, and documented attempts at various treatments.

– Colombia has faced many problems, and as a society, it is blind to this history. Some argue this is a waste of time, or that the archives should be destroyed. Many still feel the shame connected to the disease, and don’t want it known that the disease affected members of their families. On the other hand, we are frequently contacted by people hoping to find family members. In a country where “disappearance” has a specific historical meaning, and where it has occurred for several reasons, this is a chance to find the fate of loved ones, the archivist explains, and adds: – It might also be that we can learn more about the disease from these detailed records. So far, they have not yet been properly studied. But to do that, first we need the archive, she points out.

The archive also contains fragments from the political and social context, such as documents from the local courthouse, newspapers, and documents of administrative purposes.

– While life here happened in isolation from the rest of Colombian society, the residents brought with them the culture and conflicts of the country that expelled them, Ms. Rincón explains as she shows us boxes containing the competing newspapers that were published here – one for the socialists, one for the conservatives. Interestingly, both share the same interest for football, both share the same vulgar jokes about the disease – a coping mechanism to make sense of the fates brought by the disease and society’s responses to it.

Many of the stories she has found are heartbreaking. Parents disowning their children; children renouncing their parents. In addition to family tragedies and medical abuses, there were abductions. Priests working in the colony would falsely claim that children living there were orphans, and offer them for adoptions in Europe, first in the Netherlands, later in France and Germany.

– Children with blue eyes and blond hair were especially attractive to families wanting to adopt. Their new families never knew they were taken from their birth families. These were not adoptions but forced disappearances. This was, of course, facilitated by the persons given new names and identities as they exited Colombia and entered Agua de Dios, the archivist laments.

Rincón has won several awards for her work with the archives, and as we walk around the village she is frequently recognized and greeted by members of the community. Initially the community was skeptical of uncovering the past, which for many is filled with nothing but pain: Let bygones be bygones, don’t let the present be tainted by the past, she was told. This has changed only in recent years, as more and more have come to recognize that the past has shaped the present; that this is part of their identity, and that the people living here were victims, not villains. But she worries what will happen when she eventually retires. Will someone take over and continue her work? As the burden of the disease has dropped (now there are about 300 new cases reported in Colombia every year), attention to leprosy has also dwindled. Leprosy is no longer a priority.

– I think this is naïve. We have a window to stop this disease, now. If it is not used, the social determinants suggest leprosy again will spread more widely, Rincón says, pointing at the forced migration from Venezuela, displacement of indigenous populations, stark inequalities, overpopulated prisons, and a marked increase in the cases of tuberculosis.

– Three years ago, there were cases of leprosy in one of our prisons. The response was telling: a policy was put in place to keep it a secret, Rincón sighs and shakes her head.

Another rationale for preserving the past is to address the stigma and discrimination that still exists. The cause of stigma, Rincón argues, is ignorance. The solution is knowledge, even if it is painful.

The patient

About a kilometer from the hospital, we visit a sanitarium where about a hundred persons affected by leprosy, a nurse and ten nuns, live their lives. One of the patients is William Hernández, who came here from Bogotá three years ago. Surrounded by mango trees, and with the sounds of chirping birds competing with patients playing backgammon, arguing, and sometimes laughing, he gets up from behind a plastic table. He leans on one of his crutches as he stands on his remaining leg and stretches out his slightly disfigured hand.

– We are well taken care of here by the health workers and staff, but it used to be better, he explains as we sit down. As part of the state’s reparations for past injustices, the patients here receive free leprosy medication and a state stipend corresponding to minimum wages.

– With leprosy, you are very fragile. If the sun is shining, you must beware of sunburns, if it is raining, you can get soars. Everything that is damaging to the skin is doubly so for us. While medication against the disease is free of charge, medication for other skin conditions is not. I have developed a rash, probably a fungal infection, but I cannot afford the cream.

Hernández lets out a sigh, before he again smiles and adjusts his crutches. Despite severe disabilities, and an amputated leg, he smiles a lot. The story of his disease illustrates how stigma and past abuses still impact people affected by leprosy today, and how this is a hinderance to eradicating the disease.

– For all my life, I have been a carpenter. I used to have my own workshop. When I was fifteen or sixteen, I started developing small marks on my forehead, followed by depigmentation in the skin on my arms. When I was 24 years old, a nurse told me it could be Hansen’s Disease. I ignored her. The word she used, “lepra” was very frightening. I didn’t want people to find out; I knew that would mean rejection. Stigma is still very strong here in Colombia, he explains.

– Then, about a decade later, I developed rashes and a strong fever. I had started to develop purple spots, and lost sensation in my skin. I went to the hospital, but they could not find out what was wrong. They asked if I had been in the jungle, or in an area with yellow fever. I said no. This is when I remembered what the nurse had told me. I told the doctor: “This is probably leprosy”. The doctor replied: “Don’t be silly!”. I contacted the hospital director and asked for a leprosy test, but then my father got sick, and I had to return to Bogotá to take care of him, he recalls.

The fever subsided, and eight more years passed before he again sought out a hospital. Meanwhile, the symptoms had slowly gotten worse, and Hernández was already dependent on crutches.

– At the hospital in Bogotá, there were many tests. Again, they could not explain what was wrong with me, and again I mentioned it could be leprosy. This time, they agreed to request a test from a hospital specializing in Hansen’s disease. The result came after three or four days: “You have leprosy”. The doctor asked: “Why are you so relaxed? You have leprosy!”. I said: “I know, and I have known for some time. I have had time to process.” In reality, I had known this for many, many years.

I asked Hernandez if I could share his story with the world, pointing out that in the period he had the disease, he could have infected others.

– Yes. Please share. It is important to continue talking about leprosy, because we have lost a lot of attention from public health. Less attention means that we don’t get help before the disease has progressed; it means that the doctors don’t know how to recognize the disease, and that they don’t prioritize us. Several times, I was told there was nothing the doctors could do. But once I got the diagnosis, I got the medication, and the disease stopped. If I had known this earlier, the disease could have been stopped earlier. But I was stubborn, I refused to accept I had leprosy; I was ignorant, I didn’t know there was a cure. I have suffered a lot for my stubbornness, for my pride, for my ignorance. It helps to have a special place for us, like this, but I don’t want this to happen to others. Tell my story. Remind people of leprosy, remind people of us patients who need care. Don’t forget us. Leprosy is not theoretical; it is lived experience. We are afraid of being forgotten.

The activist

Not all persons affected by leprosy live in the sanatorium. In another part of Agua de Dios, we meet Jaime Molina Garzón, who for the past twenty years has worked to fight stigma and discrimination through spreading knowledge. He frequently records content for his own YouTube-channel and radio-show “Plumas de Poder” – Quills of Power – from the veranda of the house where he lives with his wife.

– The history of leprosy in Colombia is a worst-case scenario. Those affected were treated as outcasts, forced to live in villages like this. While segregation also happened earlier, seeing the disease as contagious gave the policy a new rationale: protecting the herd. It was a matter of public health. Spreading stigma was part of this. Everybody learned that persons affected by the disease were to be stigmatized, even from family members and neighbors, Molina Garzón explains.

Molina Garzón himself has severe disabilities from the disease. In the early 2000s he started speaking up in public.

– My message was simple: good medical treatment exists. But there is also treatment for ignorance and stigma – knowledge that this is just a disease, he recalls.

This opened doors. Molina Garzón started talking about stigma and the disease, first regionally, then nationally. In 2003 he established the NGO, Corsohansen, dedicated to spreading information about the disease, and combatting stigma. He has later been invited to talk in numerous countries around the world, in Latin America, Europe, Asia, and Africa.

– The disease might have affected my body, but it has also given me experiences for life. In Frankfurt, I saw snow for the first time, lost my luggage, and was denied exit from the airport. Then we decided to have our awareness-raising seminar inside the airport, Molina Garzón laughs.

When he started Corsohansen, leprosy was associated with shame, not stigma. In the past two decades, this has changed, thanks in part to the efforts of Molina Garzón and others. Now, most experts recognize that ignorance and injustice get in the way of early diagnosis and – to use the terms coined by Professor Sotomayor – cause suffering on top of the pain produced by M. Leprae. The United Nations passed resolutions recognizing the human rights of persons affected by the disease, the WHO has a goodwill-ambassador for leprosy elimination, and the UN has a special rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

– We need to talk about this. Stigma is based on ignorance. Part of the cure is knowledge, Molina Garzón says.

—

Interviews for this story were made in Agua de Dios and Bogotá in October and November 2022. The interview with Prof. Sotomayor was done with translation help by Carlos Dáguer and Ana Lorena Ruano. The interviews with María Teresa Rincón, William Hernández and Jaime Molina Garzón were done with translation help by Natalia Estrada. Travel and accommodation was generously sponsored by the NORHED II-financed project Strengthening Agency and Learning Across Health Systems in the Americas (SALHSA), part of the Latin American Collaboration for Research in Health Policy and Systems (CLIPSS) .

The author, ass. prof. Magnus Vollset from the University of Bergen, is head of the anniversary committee commemorating the 150-year anniversary of Armauer Hansen’s discovery of M. Leprae. On June 21-22, 2023, Sasakawa Leprosy (Hansen’s Disease) Initiative and the University of Bergen are organizing The Bergen International Conference on Hansen’s Disease, where María Teresa Rincón are among the speakers.

2 thoughts on “Leprosy today: A visit to Agua de Dios”

Nora Cardona-Castro says:

April 12, 2023 at 1:28 pm

Leprosy transmission is still happen in Colombia. Covid pandemic affected the case detection and health resources for leprosy patients, so the statistics are underestimated. New cases have a late diagnosis, it is the most common in Colombia. A public health problem is not only a prevalence, we need to search a new cases in high risk population as an active public health measure, action that is too difficult to achieve because leprosy is neglected as the patients are. Nora Cardona-Castro, leprosy researcher at Colombian Institute of Tropical Medicine, Medellín, Colombia

Daniel Romero-Alvarez says:

April 19, 2023 at 2:41 am

Thanks for not forgetting. For helping their voices reach other corners of the world. Hope one day we can eradicate the stigma around this treatable disease.