Opinion – Cecilia Machado: The Yanomami tragedy that the numbers could anticipate

The images that have circulated in recent weeks of sick, malnourished and weakened Yanomami leave no doubt that this is a tragedy of major proportions. But a number, obtained exclusively from the report on the Sumaúma website via the Access to Information Law (LAI), helped to expose the dimension of the problem: in the last four years (2019-2022), 570 children under 5 years of age died in the Yanomami territory for “avoidable deaths”, an increase of 29% compared to the previous quadrennium.

But why did such a relevant number, which should help in the formulation of public policies for the vulnerable population, need to come to light through a request for access to information and is not systematically included in publications or regular disclosures of the same Ministry of Health?

The fact is that there are numerous limitations and information gaps on indigenous health, especially in the Legal Amazon, which encompasses about half of the population that declares itself indigenous in the country and includes the Yanomami. A 2021 study by the Institute for Health Policy Studies (IEPS) brings important considerations about the limitations of data on the health of indigenous people in that region.

Starting with the coverage of deaths in the Mortality Information System (SIM) records of the Ministry of Health: some states in the North and Northeast still have coverage below the national average, and underreporting of records is related to the social exclusion of this population and the long distances that need to be traveled to access public and health services. Thus, variations in occurrences in these records need to be interpreted with caution, especially when considering that the coverage of mortality data has improved over the years.

Furthermore, despite the creation of the Indigenous Health Care Information System (Siasi), in 1999, and the Special Secretariat for Indigenous Health (Sesai) at the Ministry of Health, in 2010 – two important advances in the model of indigenous health care in recent decades–, information remains difficult to access.

Siasi, whose objective is precisely the collection, processing and analysis of information for monitoring the health of indigenous communities, only makes data available on demand via LAI, unlike what happens with the other information systems of the Ministry of Health , whose data is publicly available for access. Thus, instead of facilitating the monitoring of health actions aimed at indigenous people, the request for Siasi data made exclusively via LAI undermines the publicity of the information. The IEPS itself illustrates some difficulties in Siasi’s requests for information via LAI, such as the fact that the information compiled in Siasi is not listed in a public domain.

However, several limitations persist even after accessing the Siasi data, since various information produced by this system differ substantially from those found in other Ministry of Health systems. An example of these inconsistencies is the mismatch in the number of deaths of the indigenous population, at least three times higher in Siasi when compared to SIM.

It is possible that the discrepancy is related to the incorrect completion of the race/color variable in the SIM (where indigenous people tend to be classified as brown), but some studies also question the reliability of the data produced in Siasi itself, such as filling errors, ambiguity in the variables and double counting.

There are also differences in the coverage and reach of the different data (in Siasi are only the indigenous people who are being monitored) and in the processing and ratification of the compiled information (Sesai points out that there is a delay of approximately two years in the recording of data due to a process of qualification and verification of information and official data are published with an interval of 18 months after the end of the year of occurrence).

The unreliability of the data produced on indigenous peoples ends up prioritizing less detailed and outdated analyses, as is the case of the important publication “The Indigenous People in the 2010 Demographic Census”, by IBGE. Without easy and reliable access to indigenous health information, it is difficult to monitor and bring up emergency situations for a prompt response by the public authorities. Even though the photos are striking records, only data can help us quantify the dimension of the Yanomami tragedy.

Without publicizing information and improving data collection instruments, our society continues to condone the invisibility of the indigenous population.