BRAZILIAN CONSENSUS ON CHAGAS’ DISEASE AS A TOOL TO GUARANTEE THE RIGHT TO HEALTH THROUGH ACCESS TO COMPREHENSIVE CARE IN THE UNIFIED HEALTH SYSTEM (SUS)
Alberto Novaes Ramos Jr
Federal University of Ceara, School of Medicine, Department of Community Health, Fortaleza, Ceara, Brazil.
Andréa Silvestre de Sousa
Oswaldo Cruz Foundation, Evandro Chagas National Institute of Infectious Diseases, Rio de Janeiro, Rio de Janeiro, Brazil.
Federal University of Rio de Janeiro, School of Medicine, Department of Internal Medicine, Rio de Janeiro, Rio de Janeiro, Brazil.
João Carlos Pinto Dias
Oswaldo Cruz Foundation, René Rachou Institute, Belo Horizonte, Minas Gerais, Brazil.
Introduction
In Brazil, Chagas’ disease has an expressive burden of morbidity and mortality, with millions of people affected in different scenarios of the country, given the historical and current migratory flows. Despite this, significant failures persist in the Unified Health System (SUS) in guaranteeing access to diagnosis and treatment for affected people, their families and the community. In addition, it is recognized that its character as a chronic condition and the need to prevent disabilities and rehabilitate affected people bring challenges that have not yet been overcome. On the other hand, the stigma related to the disease and the impact on quality of life potentiate the cycle of neglect and poverty.
Globally, it is estimated that less than 90% of people in need of specific treatment in the world actually have access to this intervention. There are critical gaps in terms of the availability of effective diagnostic methods and of new, safer and more effective therapeutic options at different stages of the disease. Access to these interventions is recognized as a critical element of the right to health, with a view to reducing the burden of disease and contributing to breaking the cycle of poverty in different generations of families and communities.
After almost 110 years since the discovery of the disease by Carlos Justiniano Ribeiro Chagas (1909), important gaps in the technical, scientific and political fields make the construction of any document synthesizing scientific evidence a great challenge. The scarcity of scientific evidence for neglected diseases in general places affected people in a situation of great vulnerability and amplifies the cycle of neglect. Despite this scenario, these issues must be overcome in order to effectively face this condition. In the case of Chagas’ disease, the situation of indications for specific treatment (expanded in the current Brazilian consensus) and epidemiological surveillance of the disease in its chronic phase (strongly recommended in the current Brazilian consensus) is emblematic.
In fact, guidelines, protocols and consensuses have become increasingly common as tools that help care and clinical practice (without replacing clinical judgment), generating improvements in teaching and management, in addition to serving as a basis for claims from patients. social movements. An important objective of these documents would be to expand the scope of the agenda of diseases insufficiently recognized by society in general, such as Chagas’ disease and other neglected diseases, organizing the work of health services and professionals.
Brazilian consensus
On September 8, 2000, the Millennium Development Goals (MDGs) adopted by the 191 member states emerged from the United Nations Millennium Declaration. Although not directly mentioned in the document, neglected tropical diseases (NTDs), including Chagas’ disease, had their main social determinants put into perspective. Among these, the following were included as goals: 1 – Eradicate extreme poverty and hunger, 2 – Achieve universal primary education, 3 – Promote gender equality and empower women, 4 – Reduce child mortality, 5 – Improve maternal health, 6 – Combat AIDS, malaria and other diseases, 7 – Ensure environmental sustainability, and 8 – Global partnership for development.
In the midst of debates on the Brazilian response to this agenda, prompted by the Ministry of Health (MS) of Brazil, in conjunction with specialists and researchers, a series of meetings took place between the second half of 2004 and the first half of 2005. of planning for the composition of the I Brazilian Consensus on Chagas’ disease. Among the most significant activities, the National Meeting for the Constitution of the Brazilian Consensus on Chagas’ Disease was organized from June 7th to 9th, 2005, as a result of the partnership between the National Chagas’ disease Control Program and the Epidemiology Unit of the Program National STD and AIDS – currently Department of Surveillance, Prevention and Control of STIs, HIV/AIDS and Viral Hepatitis (both from the Health Surveillance Secretariat, Ministry of Health). Renowned Brazilian specialists and researchers were present, many of whom were authors of the document. The strong technical-political movements of the meetings of Applied Research on Chagas’ disease in Uberaba, Minas Gerais, under the leadership of the Brazilian Society of Tropical Medicine (SBMT) contributed greatly to enhance this initiative.
At that time, they were already explicitly signaled as concerns for the country:
“To reinforce the priority of Chagas’ disease as a public health problem, incorporating in a totalizing, integral and intersectoral way, other aspects besides vector control, such as new strategies for epidemiological surveillance and control of transfusional and vertical transmissions, the development of priority research and comprehensive care for individuals with chronic Chagas’ disease in the network.”
As also:
“To reinforce that the Technical Management of the Ministry of Health for the control of Chagas’ disease must be valued, both from the point of view of its technical staff (human resources) and in the contribution of financial resources (budget).”
The publication of this I Consensus had a significant technical-political impact, not only in the country, but also in other endemic regions, as well as in non-endemic regions that were being challenged with the occurrence of the disease related to migratory movements. There was a commitment to compose systematic reviews every 5-10 years to ensure the best evidence. With this accumulated experience, faced with the clear need to revise that document, a new major work was undertaken. The objective was to systematize and standardize strategies for the diagnosis, treatment, prevention and control of Chagas’ disease in Brazil, in order to reflect the most current scientific evidence available at the national and international levels.
The movement was triggered between 2010 and 2011, with the beginning of planning. In this period it became a reference document, especially for managers, researchers, health professionals, university professors and for society in general, including the organized social movement focused on Chagas’ disease that was structured in 2010 in a Federation International – FindeChagas. However, it was only in May 2013 that the effective construction of the entire process resumed in Brazil, based on the reorganization of the nine working groups and the strengthening of the coordination group within the MS and SBMT.
On the international stage, the post-2015 (post-MDG) agenda was reconfigured, generating a new and ambitious universal agenda with 17 Sustainable Development Goals (SDGs) and 169 targets. For the first time, NTDs are incorporated into a specific goal within an objective (3) that refers to “ensuring a healthy life and promoting well-being for all, at all ages.”Target 3.3 refers to “by 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases, and combat hepatitis, waterborne diseases, and other communicable diseases.”
Concerning the SDGs, the II Brazilian Consensus on Chagas’ disease was published, a fundamental milestone for shaping part of the Brazilian response. Care throughout the process reinforced the search to reach contexts beyond Brazilians, with a view to use by other endemic countries, but also non-endemic ones.
The complex and challenging political-economic scenarios in Brazil and Latin America reinforce the importance of consensus building. Brazil has played a leading role in this movement along with other countries. However, they have also raised questions that aim to reflect on the real limit between the availability of evidence-based guidelines and the health needs perceived and felt by the affected people. In addition to the availability of evidence-based guidelines, it appears that between and within different countries there is a lack of minimum standardization of the indicated behaviors, which in fact creates even greater obstacles in thinking about an integrated global response.
Challenges:
The consensus building process involves a group of experts and/or researchers, and should also include representatives of the affected populations. For the composition of this 2015 Brazilian document, collectively collected quantitative evidence was taken into account. This evidence was filtered through a “clinical lens” of the elaboration group in order to guarantee greater rigor in the recommendations and their applicability in the real scenarios of the SUS. The current epidemiological scenario, the technical-scientific advances based on evidence, as well as the experience of several specialists who are dedicated to the study of the disease and act as national and international references were taken into account.
With all these dimensions included, we sought to compose a document with maximum precision, responsible (to the affected people and their families, community, science in general and society as a whole), predictable (providing specific details and numbers), defensible ( transparent), and usable (in a variety of real-world settings).
For affected people, the greatest benefit that can be achieved with consensus is to improve their health outcomes, with greater certainty that the behaviors adopted by health professionals represent national benchmarks, with a view to guaranteeing their quality of life. In a broader perspective, the appropriation of consensus by affected people and their families can contribute to their having greater potential to influence public policies. This means, for example, the greater integration of control actions in the health system, obtaining in response, the composition of other points of care, aiming to guarantee access with equity.
As for health professionals, the adoption of consensus can improve the quality of clinical decisions, especially for those professionals who are not fully qualified or whose conduct is outdated within national public policies. The document’s guidelines can act as a common reference point for prospective and retrospective evaluations of health professionals’ practices, aiming at greater qualification in the fulfillment of best care practices.
In summary, the elaboration and dissemination of this document aim to contribute to the improvement of clinical practice, prevention, research development and the planning of public policies aimed at health surveillance and control of Chagas’ disease in all spheres of management, aiming to reduce its morbidity and mortality in Brazil. It is also intended to instrumentalize the people affected in making their individual or collective decisions, as social movements.The current political-economic scenario in Latin America has rapidly expanded social inequalities, at the same time that the role of the State in the development and regulation of health care actions, surveillance and control of neglected diseases, such as of Chagas’ disease. In the last three years, in particular, Brazil has been rapidly retreating in its social policies, with a strong deepening of income concentration, being once again included in the list of the most unequal countries in the world. This expands the contexts of individual and social vulnerability that place old and new determinants for the occurrence of transmission of this disease. At the same time, the weakening of the health care network in the SUS further limits access to services, generating situations of serious programmatic vulnerability, with a strong restriction of access to health, especially in areas of greater endemicity. It is hoped that this scenario does not diminish the great potential that the II Brazilian Consensus on Chagas’ Disease may have.