Murcia and the human factor

The control of Chagas disease by interrupting mother-to-child transmission has been possible in this community in Spain. This is the chronicle of our visit there to find out how they have achieved it. With more than 2,000 patients under follow-up, they have now been 2 years without a single congenital case.

03 March 2022

 
While endemic and non-endemic regions face this crucial decade with an eye on strategies to eliminate or interrupt mother-to-child transmission of neglected diseases such as Chagas, there is a small, dynamic community in Spain where this has already been achieved.
 
Murcia, with a population of 1.5 million inhabitants, 54,000 of whom are of Latin American origin, is today a spearhead in demonstrating that this goal is possible. The general data at the heart of this work, launched in 2006 at the Hospital Clínico Universitario Virgen de la Arrixaca, show it: a cohort of more than 2000 patients under follow-up, and more than two years without detecting any case of mother-to-child transmission, after having diagnosed and treated 26 congenital cases in the last 16 years. An example highlighted by the World Health Organization (WHO), with whom the center collaborates.
 
How has this achievement been possible? What factors have played a role in achieving it. And above all, can the example of Murcia be adapted to other non-endemic and even endemic areas?
 
To find out some answers, we visited the center and the team led by the microbiologist Manuel Segovia and the specialist in Chagas disease, Bartolomé Carrilero, a dynamic duo that promoted the implementation of a pioneering service in this community, the Tropical Medicine Unit (UMT) at the Arrixaca Hospital (or simply “La Arrixaca”) as it is popularly known.
 
At the beginning, in 2006, this region served by the hospital was still experiencing a time of economic boom that attracted a significant number of Latin American population, specifically from countries such as Ecuador and Bolivia, with high endemicity of Chagas disease. "At that time," recalls Dr. Segovia, "there was still much to learn about the management of Chagas disease. Shortly before, when chronic cases were detected, it was even widely considered an autoimmune disease, as if there were no effective treatment, especially if diagnosed in time".
 
The complexity represented by the different routes of transmission makes more difficult to monitor, control, care and eliminate this disease, especially where it is most prevalent, in the regions of the Americas. But case detection and prevention of some routes can be carried out with demonstrable success.
 
Vector-borne transmission in endemic countries remains the predominant route. It poses an enormous challenge to health systems because of the difficulty of dealing with the vectors, the insects (triatomines known as "vinchucas, pitos, chinches, barbeiros", etc.) that prey on residents of rural and peri-urban settings in the Americas. The difficulties imposed by the Covid-19 pandemic have hindered the continuation of decades of progress in vector-borne transmission, and may even have regressed to the situation several years ago. However, there are other transmission routes, such as mother-to-child transmission, the most important after vector-borne in many areas, which is susceptible to great improvement when control strategies are included in comprehensive care programs.
 
Since 2018, there has been a regional and global consensus trend, with different nuances depending on the area, to test new strategies in the maternal and infant control of Chagas disease. Thus, the Framework for Elimination of Mother-to-Child Transmission of HIV, Syphilis, Hepatitis B, and Chagas (EMTCT+) represented a first proposal in the Americas to include Chagas within maternal and child health programs alongside routine controls for prioritized diseases such as HIV or syphilis, among others.
 
The consensus is even more evident in non-endemic countries, where mother-to-child transmission is the main route of transmission. It is not a coincidence that Spain is near to establish a national screening protocol, following the example of some communities that have been implementing it for several years, such as Murcia, whose example was highlighted during a recent visit by the Spanish Minister of Health. In Catalonia, for example, with more than 7.7 million inhabitants and more than 344,000 of Latin American origin, the evidence of the cost-effectiveness of systematic screening in women and children of Latin American origin convinced the health authorities of this autonomous region to incorporate early screening for Chagas disease in pregnant women and children, through the primary health care system.
 
Dr. Manuel Segovia / Ulrich-Dietmar
Dr. Segovia, based in Murcia, but originally from Salamanca, showed us the ins and outs of the laboratories of the microbiology service and the UMT that he heads. We were able to observe the diagnostic and care pathway followed, as well as to meet some of the laboratory professionals and auxiliary equipment, now in full swing due to the analyses and studies related to the Covid-19 epidemic. Part of this team was put in place at the beginning of the Chagas program.
 
During the visit to this labyrinth of well-equipped rooms and laboratories, Dr. Segovia explained to us in detail, and with Castilian courtesy, that all this would not have been possible without the involvement of the people affected and many health colleagues at the hospital who believed in the project. Nor would it have been possible without the support of the hospital's directors, as well as the regional government of Murcia, who believed in the need and importance of treating diseases that were considered to be emerging and imported, treating them as what they are: a disease and a local reality.
 
The economic crises that originated in 2008 and the pandemic from 2020 onwards have had an impact on a certain reduction of the migrant population in Murcia, but in general, Segovia assures: "the Latino migrant population does not usually move so much. Contrary to popular belief, it is a community that is very established here. There are comings and goings, but most of the people we see are still here after more than 15 years”.
 
Early on in our visit, Segovia put us in touch with several people of the interdisciplinary team who fell in love with the project and collaborate with UMT. The first name is his partner in this adventure since the beginning, Dr. Bartolomé Carrilero.
 
The waiting room of the tropical diseases care unit, that morning at the end of October, during our visit, was reminiscent of those of other projects and care units in Latin America. Several women, a few men, seated, chatting, waiting for the visit to pass. Inside the consulting room, Carrilero attends to a young woman whose son was diagnosed and treated early. Successive check-ups show that the treatment is effective. There are times when patients without appointment pops up. They just drop in to ask a quick question or to consult about a family member or an upcoming trip.
Carrilero is not just a doctor behind a desk in the consultation. This type of disease requires a large dose of human factor. And of his own initiative. In the early days of the project, Carrilero used to travel around the community on a Harley-Davidson motorcycle to promote recruitment campaigns. Today, he also has the help of his wife, of Bolivian origin, who runs a restaurant where part of the Latino community tends to congregate. And, of course, the restaurant has also become a place to promote information, raise awareness and carry out Chagas tests.
 
The first baby girl detected with congenital Chagas disease in Murcia is Susana's daughter, who continues to attend the clinic for follow-up care. Her daughter, Sol (Sun), is now 14 years old and her mother uses to tell her story in information and awareness campaigns to show the effectiveness of an early diagnosis and care program like the one in Murcia. Carrilero remembers each of the congenital cases because of their special relevance, and also because of the risk that some babies face. Some patients who attend the consultation during the morning confess that one of the reasons they come it that they trust on the medical staff. They inspire confidence in them.
 
Recently Carrilero's mother-in-law, who is also affected by Chagas disease, knocked on the door for a follow-up visit. He is now seeing a lady who tells him about her plans to travel to Bolivia. She is in her late sixties. The doctor asks her if she plans to return so that he can plan the follow-up. The woman hesitates: "I don't know doctor, that's what I'm going to see over there: whether or not I'm going back".
 
Neglected tropical diseases (NTDs) that have expanded globally often accompany the migratory route. They are incorporated into the process experienced by populations on the move, characterized by the same doubts, the same twists and turns of the road, the uncertainties and the questions (to stay or to return; and if to return: to return where?). And it is not only about migration from countries with vector transmission to countries without vectors, from the Americas to other continents, but also from rural to urban areas and vice versa, or from countries with porous borders in the same region of the Americas. All this requires the adaptation of health services around the world where people affected by Chagas disease move: how to offer a follow-up adapted to this uncertainty.
 
"If in the end you decide to stay there, in Santa Cruz," Carrilero tells the woman, "here you have the contact of the center and of the colleagues you can turn to." And he gives her a document with the diagnosis, names and telephone numbers of the Bolivian health professionals who will attend her in case she wishes to stay.
 
Another patient, a 56-year-old woman, is referred by a general practitioner. The doctor detected in the system that the woman had a diagnosis of Chagas disease in another service in the country. That was in 2014, but either they didn't explain it well or they didn't tell her at all. Her mother also has Chagas. When Carrilero asks her about her working hours, she says: "24 hours." She works as a live-in maid, so it is difficult for her to come to follow-up visits. Carrilero explains to her that she has the right to attend the service for her medical follow-up and begins to register her case conveniently to give her a careful attention. He asks her about her family in Bolivia. She is also from Santa Cruz. And he gives her information about the care services there in order she share it with her family in Bolivia.
 
This coordination and exchange of knowledge between the different services becomes crucial in the world of Chagas disease. Thanks to the fact that the disease is less invisible than it was years ago, there is an increasing exchange of experiences between different professionals and centers around the world, something promoted by International platforms, like the Global Chagas Coalition, to which the UMT of Murcia has recently joined.

 
From a neglected disease to a "normal" disease
 
For Carrilero, in places like Murcia it is more feasible to reach the majority of affected people because of the geographical and population circumstances. However, can the experience be replicated in other places with fewer resources but with similar circumstances? The answer may depend on the strength of cooperation and the human factor provided by the involvement of as many people as possible.
 
For Segovia, control of mother-to-child transmission can be achieved in rural and urban areas of endemic and non-endemic countries. Vector control is much more complex. "Now," Segovia comments, "we are at the right time to change the approach to Chagas management." The change he proposes is to move from considering it as a neglected, invisible and silenced disease, to "a normal disease", included in comprehensive care routines. To this end, at least in Murcia, all possible means of communication and campaigns have been used to reach not only the beneficiary population but also the health community. He mentions universal screening for Chagas disease, and even the possibility of screening in pharmacies. This would also help to reduce some of the stigma of the traditional view of it.
 
The human factor in the UMT is transmitted by a committed staff: assistants, specialists in Gynecology and Pediatrics and residents, or microbiologists such as Marina Simón Páez, who enrich this school of good practices. Concepción Martínez Romero ("Chitina"), supervisor of the delivery room at the beginning of the project, joined this team and strengthened the maternal health screening and care program. In fact, Segovia recalls that the first professionals to get involved were the midwives, and that was crucial. Concepción confirms: "The most beautiful thing was the response of the midwives and how they got involved in addition to the fact of being able to detect and prevent the developing of the disease with an early diagnosis in children," she says as a gratifying example of the experience.
 
Fuensanta Franco Mirete, a nurse attached to the UMT, had no experience in Chagas disease until she started this service. Ninety-five percent of the entire cohort of patients pass through her office, whether they come for a first diagnoses or just for routine control and follow-up tests. She is now an expert in this disease and its management, and knows the importance of communicating with people who share cultures and linguistic codes with very different nuances. The chief pediatrician of neonatology, José Diego Gutiérrez Sánchez, and the resident Ana Jaén Prat did remember having studied something about Chagas disease at the Medicine School, but here they have had the opportunity to delve deeper and contribute to the success of the program. Gutiérrez conveys a passion for treating this type of disease to his residents. "We are very insistent to the residents when they take care of women and children of Latin American origin in order to pay attention to detect Chagas disease." And he recalls the names of children who experienced hard moments with heart disease but were able to pull through.
 
Both Carrilero and Segovia are confident that, after their retirement, the service will continue with the young staff that has been trained here.
 
By 2030, WHO’s member countries have launched a roadmap that aims to eliminate Chagas disease as a public health problem, along with other NTDs. This involves verifying the interruption of different transmission routes. As far as mother-to-child transmission is concerned, Murcia expects to fulfill the WHO’s verification process by 2025, which, according to Segovia, will undoubtedly be a good stimulus for many other places.
 
The data collected here are of particular relevance, especially when Chagas disease still lacks a lot of data and is based on large estimates. To systematize the information collected at the Arrixaca Hospital, two pharmaceutical companies are collaborating with the team in the WHO project to widely share data on the disease and thus overcome the epidemiological silence at the global level. During this visit, we were able to get a glimpse of what the possible horizon of a controlled disease looks like, at least in one of its most important routes of transmission.
 
During the visit, we were assisted by Dr. Ulrich-Dietmar Madeja of Bayer's NTD program, which is partner of the Chagas Coalition.
 
 
Photos: Ulrich-Dietmar Madeja.
 
 
Related: The involvement of affected people // The story of Fanny Brito (Loja, Ecuador). President of Asapechamur.