The Association of People Affected by Chagas Disease in Murcia (ASAPECHAMUR) has been in existence for more than 12 years, and in its beginnings, they collaborated with the Tropical Medicine Unit of the Arrixaca Hospital, although today they have diversified and work in other areas and health structures of this Spanish autonomous region. Thanks to their work, Chagas disease is no longer a total unknown for health professionals and services in this part of the country.
For several years now, the WHO has been highlighting the work carried out in Murcia as a model to follow, which is not limited to non-endemic countries. Fanny Brito, who started to get involved in the fight against Chagas disease without even knowing she had it, chairs this association. We asked her why the work here in Murcia has gone so well:
"Ours has been the work of ants" says Fanny using a Spanish idiomatic expression to refer to a patient and hard work. "Word of mouth has been the best method to inform all the people from Central and South America now living here that we have been reaching through our activities". And she names some acquaintances of her with Chagas disease who came from Honduras, Nicaragua, Argentina and, above all, Bolivia and Ecuador.
Fanny Brito was born in Loja, Ecuador. She has been treated for Chagas disease and later had a daughter who tested negative. She recalls that in the first campaigns to raise awareness and recruit patients, the doctors' expectations were exceeded. "We convinced Dr. Segovia, from the Arrixaca, that the campaigns should be done on Sundays because of the working conditions of many migrants. It was agreed with the Blood Donation Center, next to the Reina Sofia hospital, that we could meet there, if campaign also include blood donation." The Arrixaca team came prepared to take samples from 100 people, "but thanks to word of mouth, 800 arrived". This is something that doctors Carrilero and Segovia also remember. This meant that the Tropical Medicine Unit of the Arrixaca had to adapt to these new dimensions. That day many people had to return to their jobs without being able to be diagnosed. The next campaign was carried out at the Arrixaca, with much more resources.
Since ASAPECHAMUR started, the integration with different services and civil society entities has been key, as it was for example with the catholic parish of Vista Alegre, a support center for the migrant community. In fact, Fanny did not start volunteering with ASAPECHAMUR because she contracted the disease, but because of her vocation to help as a volunteer since she learned about this problem in 2009. In that time, she didn’t know that she had gotten the infection of T.cruzi. She was part of the foundation of the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS).
In 2012, three years after she started her involvement in this cause, she decided to participate in the first campaign to donate blood, which was done in conjunction with the Chagas screening that they coordinated together with the Arrixaca service and the Blood Donation Unit of the Reina Sofia hospital. She tested positive and subsequently received her treatment. She had a daughter after her treatment, but she was born without the parasite. Later, she was tested again and their results were not yet negative. Dr. Dietmar-Madeja, who joined the interview, advises her to have at least two check-ups a year to see how she is doing. The good news is that some studies point to the efficacy of treatment in adults to prevent long-term complications compared to untreated individuals.
Her work with Latino networks and associations of all kinds has made it possible to reach different communities of the Americas in Spain. And, of course, it has been thanks to the complicity of the media, especially the collaboration of journalists, as in the case of Alvaro Salazar, born in La Paz, Bolivia, and resident in Murcia. He has been collaborating with the association since he met it while covering Latino news for a newspaper. He does not have Chagas disease. In fact, "the only thing I remember hearing about Chagas in Bolivia was that I was once told that there were vinchucas on my crib," he says. Currently, although he is unemployed, he continues to support communication initiatives of the association.
Near him sits Diva Salazar, who was born in Guayaquil, Ecuador. She had not heard much about the disease either and does not suffer from it. But, like other people, she collaborates with the association on a voluntary basis. She is even one of its founders. "I like to help," she sums up when asked why she did it. So does Patricia Coca, who was born in La Paz, and who, although she does not have Chagas, collaborates as secretary and does raising-awareness work. Coca comments on the false perception that Chagas is something that only affects poor people. "Chagas touches the poor and the rich. It is a problem that concerns us all."
"It concerns us all”. This phrase remains as a constant idea in the meeting with the association. It is something that has also been key to the success of programs such as the one in Catalonia, where a pioneering study conducted by the team at the Vall d'Hebron Hospital in Barcelona showed that thanks to the proximity and involvement of the entire community in improving services, it was possible to increase the diagnosis rate from 5-10% to 45%. Improved access is possible thanks to community work with the strong support of the people affected.
The concept of affected persons, thanks to the work of the associations, is now much broader than it was originally understood. It does not only include the people who have the disease, but also their families, their communities and, why not, those who want to be close to this problem which, in some cases, can have consequences that are difficult to bear.
Francisco Menacho is a man of strong appearance, smiling, friendly. He came from Santa Cruz, Bolivia, a few years ago. He is in a bit of a hurry. He has to leave us soon as he has to go to his night job as a security guard. He has Chagas and is being treated for esophageal complications. His two sons also tested positive for the disease. His family has a total of nine siblings. One of his sisters died of Chagas in Bolivia, he tells us. He knows that the power of his voice and his testimony can do a lot of good in the Latino community not to neglect the danger of this disease here and in his country of origin.
An association that can still do a lot of good.
During 2020 and 2021, several people from ASAPECHAMUR have been trained as Community Health Agents through the courses promoted by Fundación Mundo Sano, so that they have thus expanded their knowledge and skills to promote a more comprehensive health, beyond Chagas, in their communities both locally and in other countries. Sexual and reproductive health, addiction prevention or early attention in risk situations are several areas in which they can contribute as health agents.
The pandemic brought even more reasons to fuel their enthusiasm to continue promoting health, so the association started distributing masks and information activities in strategic places such as consulates, as they did in Ecuador, taking advantage of the occasion of the elections in that country in 2020 and the influx of potential voters.
The association can continue to grow in its services as community health agents. Fanny shares with us a document with some of the most urgent needs, such as a place where they can provide care and gather several people for meetings and trainings. They would also like to expand contacts and collaborations with more health care centers, not only in the area surrounding the capital of this community, but also in the towns and rural areas where a large part of the community of Latin American origin is also located.
The women and men who are part of this association often find time where there is none. In the evenings (like today, in this snack-dinner where we met in a cafeteria near a hospital in Murcia), or on weekends or other time slots to be able to offer their work as community health agents. The successes of their work are part of the success in the control and monitoring of Chagas disease in the region, but, all in all, they convey the feeling that there is still much to be done, and that their potential could provide much more for better health care for the whole community.
Dr. Ulrich-Dietmar Madeja, from Bayer's NTD program, member of Chagas Coalition, assisted and collaborated with the visit.
Photos: Ulrich-Dietmar Madeja.
Related: Murcia and the human factor // The story of Fanny Brito (Loja, Ecuador). President of Asapechamur.
