Chagas Disease: Celebrating a Victory over Fear and Misinformation

The night before her first visit, Irene could not sleep: “What will they find? Do I have Chagas disease? Or HIV/AIDS? There are so many possibilities. And what about my daughters, my brothers, my sisters?" 

'Spread the Word in the Fight Against Chagas' is an initiative to inform Bolivian families living in Barcelona about the disease

This was the story Irene told when she opened the discussion organised by Pasa La Voz Contra el Chagas  (Spread the Word in the Fight Against Chagas), a joint initiative of ISGlobal and the Global Chagas Disease Coalition with the collaboration of the Catalan Agency for Development Cooperation (ACCD). The aim of the project is to inform Bolivian families living in Barcelona about Chagas disease and to help them access diagnosis, treatment and follow up services.

During the workshop held on Sunday 15 May, the 19 participants talked about the reasons why they had put off going to the doctor to seek a diagnostic test and discussed the kind of care and follow-up that patients with Chagas disease need.

During the workshop, the 19 participants talked about the reasons why they had put off going to the doctor to seek a diagnostic test

After the meeting the participants shared a celebratory meal. What were they celebrating? The simple fact that all of them had overcome fear, misinformation and inertia and had taken the test. Irene’s results are confidential, but what she wanted to do was to share and analyse in depth why so many people prefer not to know the result.

One reason often mentioned is a desire to avoid adding to the burden of their families. “When they hear the news, some people give themselves up for dead— they resign themselves to dying", explained Lisbeth. “Better to die in silence”, added Jessica, another participant.

“Obviously, we have not been properly informed by our doctors in Bolivia and the health care system has its shortcomings, but we ourselves are also to blame: people are not interested and we are very lackadaisical”, says Victor Zacharias, a representative of the Asociación de Personas Afectadas por el Chagas en Barcelona (ASAPECHA—the Association of Persons Affected by Chagas in Barcelona). As several researchers have shown, there are many reasons why people do not act promptly and postpone taking the first step.

In Bolivia, a major problem for the patient is the cost, not just of treatment but also of the hospital care related to possible complications (pacemakers, cardiac and intestinal testing, etc.), which is neither subsidised nor free. On the subject of problems specific to Spain, participants cited the fear of losing a job as a reason why patients would hesitate to request time off to see a doctor.

Participants asked for much more information to be made available. The opinions heard at the workshop highlighted the need for many more campaigns like Pasa la Voz contra el Chagas, which was praised highly by the participants.  The use of social networks was also identified as a strategy that should be explored. “And we could ask doctors to treat people with more warmth, to be more human, like you are being here today”, Irene added.

The participants shared a celebratory meal. What were they celebrating? The simple fact that all of them had overcome fear

Finally, when commenting on the materials handed out to all the attendees, everyone remarked that it was great news that the families of those receiving medical attention could attend any of the six centres in Bolivia run by the Platform for the Comprehensive Care of Patients With Chagas Disease (ISGlobal-CEADES Foundation-AECID).

Referrals are already standard practice in the International Health Department at the Hospital Clínic; when patients tell their doctors that they are returning home to Bolivia or another country, they are given a full report to facilitate medical follow-up of their condition. Referral between the Platform’s centres in Bolivia is also standard practice. There is a plan to introduce the same referral system into the National Health Service in Bolivia.

Participants asked for much more information to be made available

“We are very happy the Platform exists in Bolivia" says Eva Muñoz Valda, the nurse responsible for managing the first visits of people coming to the department as a result of the Pasa la Voz programme. “However”, she went on, “we need to persevere because there is still a great deal to be done."

Leonardo de la Torre, coordinator of the "Pasa la voz contra el Chagas” programme

Learn more

Online report on Chagas disease: 5 Problems and Some Solutions

Global Chagas Disease Coalition

Spread the Word in the Fight Against Chagas

InfoChagas.org