“Help Us to Know How Many We Are and Where We Are”
Monday, April 11, 2022. Since April 14, 1909, the date of the first report of Chagas disease in a girl, in Brazil, this disease has been described as “silent and invisible”. This means that the available records and data do not offer the real and global dimension that the disease has acquired over the years. We need to know better its magnitude and distribution in order to be able to address it comprehensively.
However, we have estimates that point to between 6 and 7 million people with the infection, more than 70 million at risk, and more than 12,000 deaths annually. Most of the people affected live in endemic areas of 21 Latin American countries, but there are estimates of very high numbers in other countries with close and migration links, such as the United States and Spain. At present, people living in 44 countries across the Americas, Europe, Africa, Asia and Oceania have been diagnosed with Chagas.
At the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS, for its acronym in Spanish, Federación Internacional de Asociaciones de Personas Afectadas por la Enfermedad de Chagas), we would like to call on all the authorities of the countries, institutions, organizations, health professionals and civil society in general to help us to know more precisely “how many we are and where we are”. This information is vital for the respect of the rights of people with Chagas and for the proper management of the disease, as well as for the prevention of different forms of transmission, such as vectorial, mother-to-child, oral, and blood donation or organ transplantation.
We are aware of the difficulty for health systems in managing a neglected disease with multiple routes of transmission, and even more so in a context of the COVID-19 pandemic that has deeply affected our communities and health services. But now, more than ever, we also know that global health problems must be addressed from different sectors and with the best possible information, with close coordination between regions and countries, and greater commitment from the authorities of each country. We have effective diagnostic methods and treatment options, but access to them must be expanded through active detection of affected people, as well as further development of new tools. Likewise, information should be expanded on the offer of these tools, their possibilities, scope and limitations.
We believe that better registration of cases in each country will allow more effective monitoring and control of the disease, and the consequent comprehensive care that the affected people deserve. Likewise, the effectiveness of Chagas disease control programs and tools depends on health professionals having adequate training and minimum conditions that allow effective actions for transmission prevention. It is also necessary for them to be able to identify the infection early, both from a clinical and laboratory point of view, giving a precise diagnosis that does not allow confusion with other diseases and, thus, provide the timely and quality of care that people need.
The associations and individuals that are part of FINDECHAGAS request the health authorities for greater commitment and dedication to case reporting and epidemiological surveillance to improve care based on the health needs of affected populations. Otherwise, this disease will continue to be considered “neglected” without us being able to break the cycle of silence and invisibility.
From various sectors of society, we can support the visibility of our cause. FINDECHAGAS promotes and joins information, education and communication initiatives that aim to raise awareness of the reality of people living with Chagas and its consequences, in order to achieve the goal set by WHO member countries by 2030, as stated in the Roadmap for Neglected Diseases: Elimination of Chagas as a public health problem.
Without a good understanding of the problem of Chagas, it will not be properly addressed. Therefore, in this month of April, we ask for an answer to our call: “Help us to know how many we are and where we are.”
FINDECHAGAS is composed by a group of associations and people who live daily with Chagas disease. Among our objectives is to involve the greatest number of sensitized people who support us to strengthen our identity and actively participate in the activities that are promoted to ensure respect for the right to health of all affected people around the world.