Chagas Observatory measuring progress in providing care for people affected by Chagas disease

Access to real data on people diagnosed, treated and monitored for  neglected diseases within health systems is a real challenge. The inherent silent nature of Chagas disease, its low priority within health systems , and the lack of awareness and data reporting systems complicate attempts to improve the availability of relevant information. The Chagas Coalition together with DNDi, the World Heart Federation and partners  have asked the Chagas programs and subprograms of 7 countries (Argentina, Brazil, Colombia, Guatemala, Paraguay, United Kingdom – London and Switzerland – Geneva) to provide the data they have available from the last three years regarding the care of  people affected by Chagas Disease.

This is how the Chagas Observatory was born, an online tool (available in Portuguese, Spanish and English) that provides a snapshot of progress on Chagas Disease based on data provided by countries and complementing other efforts to collect and monitor information about the problem. It is a parallel and realistic view that complements the global and regional estimated data with which the community of experts works. In addition to quantitative data such as the number of people tested, diagnosed and treated, classified  by age, sex and child-bearing status, the initiative also provides qualitative information. Topics such as the availability and registration of medicines, the use of rapid diagnostic tests, the existence of patient associations, provides  useful complementary information to give a comprehensive view of the progress of countries.

The added value of the Observatory lies in making data on the disease available in a didactic way and in a language accessible to all. The creation of the Observatory has enabled,  and encouraged ongoing dialogue between governing health bodies and civil society organizations, with the purpose of creating more coordinated and necessary responses to meet the demands of the people affected.

The Chagas Observatory showcases the information obtained  by several countries and their progress, as in the case of Paraguay, which managed to control vector transmission throughout its territory and is now focusing a large part of its efforts on controlling vertical transmission.  For Dr. Vidalia Ramos, head of the national Chagas disease control program: “This platform helps us see how much progress we have made and where we need to make progress, and perhaps adding the small or large advances of the countries we can paint the map globally and answer the question of how many we are and where we are – and be able to improve on those areas where we have not advanced.” 

Likewise, countries such as Colombia have increased the percentage of the population tested and diagnosed in areas that, having been punished by the conflict for years, had not been accessible by healthcare systems. Now they are thanks to the establishment of the Comprehensive Health Care Roadmap (RIAS). “Simplifying diagnosis, guaranteeing medication supply, implementing screening for pregnant women at risk and demonstrating that comprehensive care is feasible in primary care in areas of high prevalence made it possible to reduce the inequity and therapeutic gaps for Chagas disease in Colombia by 40%,” according to Mauricio Vera, head of the National Chagas Disease Subprogram of the Ministry of Health of Colombia.

This initiative also provides us with different indicators on the implementation of policies and control strategies for Chagas disease, which allow us to know if, for example, cardiological examinations are carried out at primary care level  for people with a positive diagnosis , or if the ETMI+ (for the elimination of mother-to-child transmission of HIV,  syphilis, hepatitis B and Chagas) is implemented, as attested by countries with very high incidence, such as Argentina and Brazil.

One of the Observatory’s most innovative data is the overview of treatments distributed over a two-year period: 5 million doses of medications (the sum total of the two available trypanocides ie Benznidazole and Nifurtimox), which would be equivalent to 21,000 complete treatments provided worldwide. 

This and other data give us an idea of the magnitude of the challenge still faced  in terms of Chagas elimination goals. Current estimates state that some 7 million people are affected and more than 75 million people are at risk. 

The Chagas Observatory, therefore, allows access to different information at the national level, facilitating analyses and interpretations of existing disease control policies, the scope of testing programs, or even the available data themselves. At the latter level, for example, this initiative encourages reflection on barriers in accessing data on Chagas disease, as well as on the responses of health systems to this issue. The existence of robust, agile, and integrated tools for data collection and reporting tends to ensure better analysis and sharing of information.

On ChagasWorld Day, on April 14, a few years ago, the associations of people living with Chagas Disease requested something very concrete: “Help us to know how many we are and where we are”. The Observatory, with the collaboration of Ministries of Health and civil society organizations, is a partial and small attempt at a response, but a progress that we hope to improve and expand in the coming years.

 

CHAGAS OBSERVATORY

 

Read this content in Portuguese.

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Global Chagas Coalition: The Global Chagas Coalition is a collaborative alliance for the exchange of experiences, knowledge and capacity for action to increase the visibility of this problem and the commitment to alleviate the human suffering it causes, with the aim of eliminating it as a public health problem.

DNDi: The Drugs for Neglected Diseases Initiative (DNDi) is an international non-profit research organization that develops treatments and access projects for the most vulnerable populations, especially those affected by socially determined diseases.

World Heart Federation: Leading and organizing  global cardiovascular health, the World Heart Federation advocates for heart health and works to reduce the global burden of heart disease, including Chagas disease. The Federation is composed of more than 200 cardiac foundations, scientific societies and patient organizations in more than 100 countries.