“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.

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

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.