The BeatChagas platform is a tool developed by the Technical Group of Information, Education, and Communication (IEC) for Chagas Disease (TG6-IEC Chagas), part of the Chagas Disease Control Program by the World Health Organization (WHO). The purpose of this platform is to share information about the TG6-IEC group’s activities.
The platform contains information, materials, strategies, experiences, and IEC methodologies to: promote the development of IEC proposals; support surveillance, prevention, and control activities for Chagas disease around the world; and contribute to the WHO’s control and elimination goals.
All of the IEC content shared on the platform, including graphics, commercials, documentaries, songs, animation, text, and videos, has been approved by TG6-IEC and is available for any interested individual, organization, or institution.
Chagas disease, caused by the parasite Trypanosoma cruzi, was named after its discoverer, the Brazilian doctor Carlos Chagas. In 1909 he diagnosed the first human case in a 2-year-old girl named Berenice.
“CHAGAS”, A MULTIDIMENSIONAL REALITY
The TG6-IEC believes that the word “Chagas” means much more than a disease. Recognizing its complexity in terms of biomedical, epidemiological, psychological, sociocultural, political, economical, and contextual aspects makes it clear that the approach to this disease through research, prevention, control, and treatment must be truly integral and adapted for each specific situation. This is especially relevant for our current age of increased globalization.
Historically, the lack of understanding of Chagas as a multidimensional challenge gave way to inadequate professional approaches, which contributed to the issue of prolonged inattention to the Chagas problem. Its different dimensions interact with each other like cogs in a machine, which justifies the need for intersectoral, interdisciplinary, and multidimensional approaches and perspectives centered on dialogue. This likely the only way to evaluate the problem and respond appropriately according to its characteristics:
- A mostly chronic and silent illness (asymptomatic or oligosymptomatic) and frequently a transgenerational disease.
- Millions of people are directly affected by the disease and face problems related to their condition as: i) a carrier of the parasite (in most cases between 60% and 70%), meaning someone that is infected with the parasite but has no symptoms or affected organs; ii) a person with clinical presentation of the disease, meaning a change in their health condition and in need of comprehensive medical attention; iii) a person with complications related to the disease, such as a stroke, meaning specific consequences of Chagas and frequent disability.
- Low detection index (less than 10%, often less than 1%) caused by routine barriers to accessing adequate medical care.
- Millions of people, in addition to Chagas, face challenges such as:
- inconsistent information and education, and lack of communication about illness and their rights to healthcare
- psychological barriers such as fear, shame, and isolation related to their disease or their social environment
- social problems such as stigma, exclusion, inequality, discrimination, and barriers to the access of medical attention
- multiple perspectives and conditions related to cultural beliefs and cosmogony
- gender inequality related to the many different social, psychological, and cultural contexts
- socioeconomic inequality related to diagnosis, treatment, and work and social conditions
- limitations in social security and labor rights
- Women in childbearing years and pregnant women face particular challenges related to the possibility of congenital transmission of their infection, which brings other (and sometimes invisible) psychological, family, social, and medical consequences.
- Outdated information about Chagas disease still circulates, which can manifest in patient care and social treatment and uphold stereotypes about those affected and how to treat them. For example, Chagas is often considered a disease that is only found in rural areas, that only affects low-income populations, that only exists in Latin America, and that is essentially terminal and without any possibility of treatment.
- Stereotypes about affected people: they are completely lacking in knowledge, qualifications, and power, meaning they lack the ability to take action, make decisions, and organize themselves independently and freely.
- General misinformation; lack of interest from the general public, the medical community, and politicians, among others; and lack of social demand and weak political commitment to resolve problems related to Chagas disease.
- Insufficient research and development; lack of scientific evidence in regards to detection, prevention, and comprehensive care, which includes elements such as diagnosis, treatments, sociocultural understanding; and lack of development of informative, educational, and communicative tools, among others.
The BeatChagas platform emerged in 2014 as a result of collaborative work among several different institutions: the Leo Messi Foundation; the FC Barcelona Foundation; the Catalan Institute of Health’s International Health Program (PROSICS); Vall d’Hebron University Hospital (VHIR); the group “What are we talking about when we talk about Chagas?” (¿De qué hablamos cuando hablamos de Chagas?) by CONICET, UNLP, and CIIE of Argentina; and the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS).
From the very beginning, one of the objectives of this platform was to help spread awareness of the complexity of the Chagas disease problem to the general public and to institutions, organizations, and governments. Through its wide variety of resources and strategies, the platform is a space where different aspects of Chagas disease can be shown and discussed, always keeping those affected by the disease as the focus.
BeatChagas is meant to open the eyes of its viewers to the reality of people affected by Chagas disease–patients, carriers, their loved ones–and how they are viewed both by society in general and by those in their individual social environments.
Another objective of the platform is to bring awareness to the magnitude and prevalence of the Chagas problem on a global scale, including the need to implement detection and diagnostic protocols and to guarantee access to comprehensive care.
It is still only calculated that less than 10% of people infected with Chagas disease are aware of their condition (https://www.eurosurveillance.org/content/10.2807/ese.16.37.19968-en). This platform aims to work toward beating Chagas, overcoming the silence and the barriers that have characterized this disease since its discovery.
Technical Group 6 (WG6-IEC) is convened by the Chagas Disease Control Program, Department of Control of Neglected Tropical Diseases, WHO, to make technical contributions in the area of Information, Education and Communication (IEC) regarding the problem of Chagas. It is integrated by a group of people, professionals from different disciplines and geographical origins, with wide and varied experience in the subject.
HOW CAN I SHARE MY IEC TOOLS
WITH BEATCHAGAS PLATFORM?
If you have one or more IEC tools, didactic resources or you have developed IEC strategies, you can share them with the TG6 IEC Chagas disease. The members of the Group assess and select the tools, resources and strategies based on pre-established criteria in order to include them in the BeatChagas platform and share them with the public health, health system and scientific communities and people interested worldwide, recognizing and acknowledging the authors and their institutions with their copy rights.