Can you imagine a game that lasts more than a hundred years, in which the 400,000 square kilometres of Paraguay is one of the playing fields? A diverse dream team of administrators, health professionals, a group of puppeteers and the citizens themselves rise up to defeat ‘Chagas’, a deadly parasitic disease. This photo story depicts the efforts being undertaken to triumph over the disease.
A battlefield called El Chaco
We leave Asuncion's Silvio Pettirossi airport and head to what was once the scene of one of Latin America's deadliest wars in the 20th century —the Chaco, in western Paraguay. Today, the enemies at El Chaco are no longer humans, but rather they are the many endemic and sometimes forgotten diseases, holding back progress in the health and well-being of the region's people, who make up two per cent of the country's total population.
Jorge, our experienced pickup truck driver takes us across 440 kilometres through dry and clayey land, punctuated by green palm groves and bushes, with occasional carob trees, toboroches and a few lakes and streams. On the vast ranches on either side, cattle graze impassively, a few rheas scamper about and a carancho glides with its wings outstretched.
Six hours later, we reach Loma Plata, our headquarters for the next five days. From here we will travel through the departments of Presidente Hayes and Boquerón, opening a new chapter in the project 'Strengthening the Paraguayan Ministry of Health in the Global Fight against Chagas Disease through the Creation of a Network of Protocolised Care Centres of the National Health System'. This is a collaborative project to improve health care in Paraguay, with a focus on Chagas disease. It is promoted by ISGlobal and the Spanish Agency for International Development Cooperation (AECID), in collaboration with the Paraguayan Ministry of Health and Social Welfare, which includes the National Malaria Eradication Service (SENEPA), and with the participation of the community.
Chagas disease: 100 years of oblivion
Although DNA from the protozoan Trypanosoma cruzi, which causes the disease, has been identified in mummies dating back 9,000 years, the first case of Chagas disease in a human was reported just over 100 years ago. It was in 1909 that Carlos Ribeiro Justiniano das Chagas found trypanosomes in the blood of a two-year-old girl named Berenice. A little earlier, he had linked the parasite to the disease in inoculated animals and identified the vector, known as the vinchuca, kissing bug, chirimacha or chichã guasú.
Although he could not explain the cycle of the parasite, Dr Chagas studied its impact on the cardiovascular system, worked on the prevention of infection and pointed out the need to act against the vector and the poor quality of housing.
"It is a problem of vinchucas, which invade and live in poorly constructed, dirty spaces, with ignored, malnourished, poor and degraded inhabitants, without hope or social horizon, and who are reluctant to cooperate," he said in one of his letters to Salvador Mazza, an Argentinian Chagasologist.
Chagas disease is one of the 20 neglected or forgotten tropical diseases, and according to the WHO, between 6 and 7 million people worldwide are infected with T. cruzi, most of them in Latin America. With today's knowledge and means, don't we have the capacity to change this black and white picture? It is only a question of will and commitment.
Communities involved in improving health
The support of citizens is fundamental to the success of a health strategy that includes both vector surveillance and access to diagnosis and treatment to control the disease. Gaining this support is precisely one of the objectives of the workshops we are conducting in the communities of Casanillo Centro, Campo Aroma, Capiatá, San Rafael and Tres Palmas, as well as the training of professionals, adoption of participatory research methods and improvements in equipment and health care.
"Mba'eichapá. Che réra Aleix" (How are you? I am Aleix). My rudimentary Guarani, limited to this humble greeting, causes more than a few laughs. Apparently the intonation should be affirmative and not interrogative, I am told. This is how we all introduce ourselves in each of the communities. Then we thank them for their cooperation and make it clear that we are here to listen and take notes: we want to know what their main health concerns are and what they think the solutions might be.
Of all the answers recorded in the five villages, it is worth noting those that are the most common and those that should be considered unnacceptable. For example, the lack of food, the lack of a vehicle to transport patients and medicines, the need for more health promoters or the lack of health information. On this last point, the community itself suggests the role that local radio could play in transmitting knowledge—messages that, we agree, should be broadcasted in Spanish, Guarani and Tobamascoi, depending on the locality.
Leonardo de la Torre, sociologist, communicator and research assistant at ISGlobal, moderates the discussion with questions and explanations, giving the floor and taking detailed notes.
"The best moments of the process were when we became more or less invisible, when we became mere articulators of moments of dialogue and exchange between different local actors," he points out.
As far as Chagas disease is concerned, most of them know about the vector and the disease, but not always about its possible consequences. They also have doubts and reservations about diagnosis and treatment, which are essential if we are to know the real incidence of the infection and make progress in eliminating the parasite.
Elizabeth Posada, a social anthropologist and research associate at ISGlobal, studies each intervention to identify key people in the community and make their knowledge, experience and practices visible.
"What is really important is to strengthen the invaluable work of professionals like Valeria [nurse at Conactomololac’s Family Health Unit] and her health promoters, because they can make a difference; we need to highlight what they are already doing, the knowledge they have," she says.
Benicia Almeida, an engineer in human ecology and a specialist in territorial development, records, visualises and cross-checks all the data generated during the five workshops. In the end, all the information gathered will help to define strategies and implement them.
The curtain opens and the vinchuca appears!
At the same time, a team from SENEPA's Social Mobilisation and Community Participation Department holds a playful workshop on Chagas, the vector and the treatment of the disease. There is jumping, music and laughter, lots of laughter. Without even realising it, children learn by singing, playing el descanso—that's hopscotch in Paraguay—and paying close attention to the SENEPA puppets. How important it is to adapt the language and the channel so that the audience gets the message!
Outside, some women from the community are preparing the communal pot of broth, meat, wheat paste, locote (pepper), onion, tomato and spices. Its aroma permeates every workshop, just before a metallic clang announces that it is time to eat.
'Triatoma sordida', on the counterattack
Equipped with tweezers and undoubted tenacity, SENEPA entomologist Sinforiano Ovelar inspects the shriveled bark of carob trees, sheds and chicken coops in search of vinchucas or their eggs. The latter, he says, are an excellent hiding place for Triatoma infestans because food is guaranteed.
"A few months ago we found some that were infested with the parasite [T. cruzi]," he tells me as he sets aside bricks, rocks, wooden planks and other debris. As a result, the entire community was quickly tested, a positive case was found and the person was able to receive treatment.
Although Paraguay has managed to interrupt household vector-borne transmission of T. cruzi, as reported by the Pan American Health Organization (PAHO) on 7 August 2018, Ovelar is concerned that the vinchuca found in Casanillo was not Triatoma infestans, but Triatoma sordida. The latter, he explains, does not usually seek out where there is food, but instead flies until it finds it—a behaviour that cannot be overlooked.
There is no sign of vinchucas in any of the five communities we visit, although some residents claim to have seen one a few days ago.
Finally, Valeria González, a nurse at Conactomololac’s Family Health Unit, approaches with the trophy. She had found a bedbug in her house and had put it in a plastic bag, as recommended by the community surveillance programme, so that its morphology could be assessed to determine whether it contained the parasite.
Points on the scoreboard for Paraguay
Currently, the main mode of transmission of Chagas disease in Paraguay is vertical or congenital (from mother to child). The prevalence in pregnant women is 5% and an estimated 400 children are born with the infection each year.
Hence the efforts of the ChagasLAMP consortium, coordinated by ISGlobal, to validate rapid diagnostic methods to detect chronic Chagas disease in pregnant women and congenital Chagas disease in their babies.
It should be noted that Paraguay has strengthened its fight against the disease by adopting the first guidelines for the management of Chagas disease in adult patients and a specific one for the control of congenital transmission and chronic cases in children. Six months ago, it also approved a strategic-operational guide for entomological surveillance and vector control.
To the efforts focused on vertical transmission, education, prevention, diagnosis, treatment and vector control, we must now add the role that communities play and can play in this game.
"First of all, we are a team and we have to play, stop and pass the ball, and be fast," stresses Elizabeth Posada. "We already have the inputs, now there is a commitment: to make a quick return so as not to cool down the players".
Leonardo de la Torre is clear: "To win the game we need high morale, and morale can break down if we fail to meet our commitments.
As we sip iced tereré from a shared guampa in the dry heat, I can't help but think of Carlos Ribeiro Justiniano das Chagas. I wish he could see how the people of the Chaco are now working together in this centuries-old struggle. His doubts, his fears, his insights and his most intimate experiences are heard in rooms so crowded that the curiosity of others must remain on the other side of the doors and windows. Thanks to them, we are a more diverse, multidisciplinary team, bringing together knowledge, skills and talents. May Chagas disease tremble!
AUTHOR'S NOTE: This article would not have been possible without the invaluable cooperation, help and dedication of all the people mentioned and many more who contributed to the preparation of the trip and various arrangements in the Chaco. Thanks to all, and especially to Elizabeth and Leo for making me feel at home.