Abstract

Seen as a serious public health problem in different locations, leprosy is marked by taboos and carried by stigma. It is a neglected disease and made up of several explanations throughout history, which update living marks of the past, including in the implementation of public policies. Health conferences are spaces for society to participate in the definition of policies, aiming to impact the care plan of different illnesses. The objective of this article is to understand the relevance and perspectives pointed to public policies for the care of people affected by leprosy present in the municipal, state, and national stages of the 16th National Health Conference. This is a documentary research based on the final reports and in the wake of the ascending process of the 16th National Health Conference. The results show the lack of visibility of leprosy in the reports of the municipal and state stages of the conference and, in the national stage, the record has a double emphasis: producing visibility about the disease and its context, claiming to update social mobilization around it and permanent education actions aimed at workers.

Keywords:
Neglected Disease; Stigma; Community Participation; Public Health Policies

Introduction

Seen as a serious public health problem in several places, leprosy bears taboos and stigmas. The religious and transcendental explanation of the disease was paradigmatic throughout the Middle Ages and associated with a dogmatic principle that subjected science and life (Inacio; Invernizzi, 2019INÁCIO, M.; INVERNIZZI, N. Nanotecnologias para doenças negligenciadas no Brasil: trajetórias de pesquisa, incentivos e perspectivas. Acta Scientiarum. Human and Social Sciences, Maringá, v. 41, n. 1, e45769, 2019. DOI: 10.4025/actascihumansoc.v41i1.45769
https://doi.org/10.4025/actascihumansoc.... ). The religious explanation in force throughout the medieval period produced most of its stigma. Later, the action of public policies further strengthened it as they centered around isolating and criminalizing carriers and holding society accountable for “denouncing” suspected cases to the police and health authorities.

The religious explanation equated this millennial disease to a divine punishment for humanity’s sinful actions. Families and friends excluded the affected individuals from society, condemning them to compulsory isolation in what were known as “leper colonies.” Other measures to control and treat patients have been incorporated over the years (Baialardi, 2007BAIALARDI, K. S. O estigma da hanseníase: relato de experiência em grupo com pessoas portadoras. Hansenologia Internationalis, Bauru, v. 32, n. 1, p. 27-36, 2007. DOI: 10.47878/hi.2007.v32.35191
https://doi.org/10.47878/hi.2007.v32.351... ), including the development of drugs (Baialardi, 2007BAIALARDI, K. S. O estigma da hanseníase: relato de experiência em grupo com pessoas portadoras. Hansenologia Internationalis, Bauru, v. 32, n. 1, p. 27-36, 2007. DOI: 10.47878/hi.2007.v32.35191
https://doi.org/10.47878/hi.2007.v32.351... ; Pinto Neto et al., 2000PINTO NETO, J. M. et al. O controle dos comunicantes de hanseníase no Brasil: uma revisão da literatura. Hansenologia Internationalis, Bauru, v. 25, n. 2, p. 163-176, 2000.). However, in Brazil, only the expansion of the concept of health in the 1988 Brazilian Constitution and the creation of the Brazilian National Health System (SUS) substantially advanced actions toward the care for this disease within health services.

Although leprosy cases are decreasing, Brazil has failed to reach its elimination target (one case per 10,000 inhabitants) and ranks second in the world ranking of cases. Leprosy is a silent (with an incubation period ranging from two to seven years) and greatly disabling disease. Its first symptoms manifest themselves as lesions such as pigmentary or dyschromic spots, plaques, tubercles, and nodules with altered sensitivity. The disease spreads by untreated multibacillary cases, which spread the infection at the beginning of contamination until the first dose of polychemotherapy (Magalhães; Rojas, 2007MAGALHÃES, F. G. G. P.; XAVIER, W. S. Processo participativo no controle social: um estudo de caso do conselho municipal de saúde de Juiz de fora (MG). Revista Eletrônica de Administração, Porto Alegre, v. 25, n. 1, p. 179-212, 2019. DOI: 10.1590/1413-2311.233.87813
https://doi.org/10.1590/1413-2311.233.87... ). The SUS institutional context defines the access to necessary actions and services as a people’s right, and the guidelines for health policies in each locality are defined by the participation of the population in conferences and health councils. The participation of society is guaranteed in the 1988 Federal Constitution and Federal Law no. 8,080 of 1990.

Social participation in health and public policies in Brazil has a historical milestone in the holding of the eighth National Health Conference (8th CNS), which was fundamental to reform the health system, basing actions and services on a more democratic modeling and integrality of care (Ferla, 2004FERLA, A. A. Participação da População: do Controle sobre os Recursos a uma Produção Estética da Clínica e da Gestão em Saúde. Physis, Rio de Janeiro, v. 14, n. 1, p. 85- 108, 2004. DOI: 10.1590/S0103-73312004000100006
https://doi.org/10.1590/S0103-7331200400... ). Health conferences are spaces that occur periodically so society can participate in the evaluation and definition of health policies. Thus the 16th CNS was carried out in 2019. Its general theme (as with the 8th CNS) was the relation between health and democracy. This association was made visible with the motto of “Conferência 8ª + 8” (8^th+8 Conference) and the resumption of the fundamental themes of the 8th CNS such as the right to health, the restructuring of the health system and sectorial financing, and the ratification of the course of the Brazilian health reform as per the documents generated during its implementation.

The official documents used in this research include the fixed records in history, those referring to the “achievements produced by man that are shown as indications of his action and that can reveal his ideas, opinions, and ways of acting and living” (Silva et al., 2009SILVA, L. R. C. et al. Pesquisa documental: alternativa investigativa na formação docente. In: ENCONTRO SUL BRASILEIRO DE PSICOPEDAGOGIA. 3., 2009, Paraná. Congresso [...]. Paraná: UFPR, 2009. Disponível em: <Disponível em: https://proinclusao.ufc.br/wp-content/uploads/2021/08/pesquisa-documental.pdf >. Acesso em: 11 jul. 2021.
https://proinclusao.ufc.br/wp-content/up... , p. 4554; our translation), and a plateau in the construction of consensus and/or negotiation of disagreements on the agenda of health policy that explains both a certain “archaeological” accumulation related to the development of knowledge and practices in health and public policies and a “genealogical” alchemy referring to the exercise of power and the articulations of force between participating segments (Ferla, 2004FERLA, A. A. Participação da População: do Controle sobre os Recursos a uma Produção Estética da Clínica e da Gestão em Saúde. Physis, Rio de Janeiro, v. 14, n. 1, p. 85- 108, 2004. DOI: 10.1590/S0103-73312004000100006
https://doi.org/10.1590/S0103-7331200400... ). This double condition of production of reports is fundamental in the construction of analyses.

This condition is visible in the documents that show the coping with leprosy throughout history. Important initiatives, such as the 2004 National Program for the Elimination of Leprosy, the 2006 Ordinance no. 399 (Pact for Health) of 2006, and the 2009 Ordinance no. 125 (Leprosy Control Actions), are valuable for their technical content, but they also express the relevance the theme has for the different actors while showing their ability in inserting the theme on the agenda of the debates and making leprosy a priority within SUS.

We describe the results of a participation that has been able to impact the aesthetic plan of care and that can incorporate knowledge beyond biomedicine, involving a greater degree of user participation in the management of their care, in which they can place not only the needs related to the biomedical aspects of the disease but also the other involved aspects, including their support networks (Ferla, 2004FERLA, A. A. Participação da População: do Controle sobre os Recursos a uma Produção Estética da Clínica e da Gestão em Saúde. Physis, Rio de Janeiro, v. 14, n. 1, p. 85- 108, 2004. DOI: 10.1590/S0103-73312004000100006
https://doi.org/10.1590/S0103-7331200400... ).

This study aims to analyze and understand the relevance and perspectives pointed to public policies to care for people affected by leprosy in the municipal, state, and national levels of the 16th National Health Conference.

Methodology

This is a case study on the formulation of policies to control leprosy and care for people and communities affected by it or by the risk of contracting it and its consequences following the ascending process of the 16th CNS. This study is based on the final reports of several Conferences, among them the 16th National Health Conference, the ninth Mato Grosso do Sul State Conference, and the eighth Municipal Conference of Campo Grande - Mato Grosso do Sul. The documents were treated by thematic content analysis with fluctuating reading and empirical categorization. Both what is common in the three reports and what is particular to the municipality was sought. In each situation, this research begun from the local context to discuss broader circumstances (Alves-Mazzotti, 2006)ALVES-MAZZOTTI, A. J. Usos e abusos dos estudos de caso. Cadernos de Pesquisa, São Paulo, v. 36, n. 129, 2006. DOI: 10.1590/S0100-15742006000300007
https://doi.org/10.1590/S0100-1574200600... . The documentary research is based on materials considered primary sources, which received no analytical treatment. In them, the researcher analyzes the facts without interference, only interpretations (Sá-Silva; Almeida; Guindani, 2009SÁ-SILVA, J. R.; ALMEIDA, C.D.; GUINDANI, J.F. Pesquisa documental: pistas teóricas e metodológicas. Rev Bras Hist Cienc Soc, [S. l.], v. 1, n. 1, p. 1-13, 2009. Disponível em: Disponível em: https://periodicos.furg.br/rbhcs/article/view/10351 . Acesso em: 31 jul. 2021.
https://periodicos.furg.br/rbhcs/article... ).

The first moment of this research consisted of a documental analysis of the final reports of the municipal, state, and national levels of the 16th National Health Conference. The three reports were initially read, giving rise to a central theme “Democracy and Health: Health as a Right and Consolidation and Financing of SUS” and the following thematic axes: Health as a right; Consolidation of the Brazilian Unified Health System (SUS) principles; and Adequate and sufficient funding for SUS. Soon after the general reading, detailed readings were carried out seeking records on the care services for the disease and/or proposals to organize work in primary care that would eventually change the care for people with leprosy. Then, the material was surveyed by themes that encompassed the universe of the research, which were subdivided into axes: 1) specific propositions for people living with leprosy, 2) specific propositions about neglected diseases and/or relevant diseases to more vulnerable groups, and 3) general propositions that apply to leprosy and neglected diseases.

Soon after, the material was organized with the aforementioned themes and the most significant excerpts from the analyzed documents were transcribed. The third step was to construct tables with the related data without losing sight of the main contextualization of this study. This organization managed to find the circumstances on the themes to be analyzed and, as observed, the material itself directed the establishment of the themes that would compose the categories of analysis, enabling the mapping of emerging themes and promoting the categorization and the crossing of its key content with the literature. Thus, each axis enabled the construction of three new categories of analysis. It is important to note that thematic categorization fails to precisely depict reality but produces an interpretive rhizome that enables movements of thought and opens new windows to support initiatives by articulating ideas.

The first axis (Specific propositions for people living with leprosy) produced three categories of analysis: a) the invisibility of leprosy in health policies and in the health system, b) leprosy as a disease in its clinical and biological dimensions, and c) leprosy as a stigma.

The second axis (Specific propositions about neglected diseases and/or relevant diseases to more vulnerable groups) produced three more categories of analysis: a) social and sanitary vulnerability as a health system problem, b) the access of vulnerable populations and groups to care networks with specialized and resolutive actions, and c) vulnerable populations and groups and territorial primary care actions.

Finally, the third axis (General propositions that apply to leprosy and neglected diseases) organized three other categories: a) the defense of SUS as a modeling of actions and services and as a social achievement, b) the financing of the health system and its threats, and c) the involvement of society as a whole to defend SUS.

For a better visualization of the produced material, tables were constructed summarizing these axes and the most significant fragments of the analyzed documents. This analysis showed fundamental points regarding the reality experienced by people affected by leprosy and construct the thematic categories that make up the analysis of this research.

Results

As mentioned, our analysis of the reports of the levels of the 16th National Health Conference enabled the construction of three axes of analysis. Chart 1 organizes the records about the disease based on a careful reading to locate textual records or initiatives aimed at the care services for people or groups affected by leprosy.

The table shows very few specific records on leprosy, found only in the national level of the 16th National Health Conference. Thus, this study found no specific discussions and records about leprosy in the analyzed conferences. This lack of recognition in Chart 1 highlights how important it is to think about the struggle of people affected by the disease and its relocation in the imagination of the population, including health activists. The construction of the specific axes in these frameworks seeks to give greater visibility and better understanding of the space that people and groups affected by the disease occupy in the formulation of public policies and in the proposal of promotion measures. In the specific case of leprosy, a disease whose history involves the social and sanitary production of stigma and isolation, the records in the final reports of the conferences also explain the secondary place measures to reintegrate people into society occupy in the socio-sanitary agenda.

This finding produced three empirical categories of analysis for this axis: a) the invisibility of leprosy in health policies and systems, b) leprosy as a disease in its clinical and biological dimensions, and c) leprosy as a stigma. This study will address these categories later.

Chart 2 characterizes the second axis of analysis, seeking to find the presence of deliberations to guide public policies on diseases that affect specific populations that endure neglect and vulnerability in different ways or whether these go unnoticed due to unequally distributed variations.

This axis of analysis shows deliberations in the three levels of the 16th National Health Conference. This study found important variations regarding the detailing of actions and the denomination of specific groups but the sense of neglect of public policies with specific social groups and populations configures a problem in the agenda of health and other public policies, especially by intersectoral health actions. In the three forums, policymakers received the indication of the need for differentiated actions for these populations, groups, and diseases as initiatives to produce equality.

Based on these records, this study produced three empirical categories for this axis of analysis: a) social and sanitary vulnerability as a health system problem, b) the access of vulnerable populations and groups to care networks with specialized and resolutive actions, and c) vulnerable populations and groups and territorial primary care actions.

To elaborate Chart 3, this research systematized records on the characteristics of what could be conducted by the principles and guidelines of the SUS and proposals and policies for implementation, universal and free access, pharmaceutical assistance, and influence of the biomedical model.

These deliberations resume the defense of SUS, adequate financing, and of the implementation of policies according to the definitions in the 1988 Federal Constitution and of the ideology within the Brazilian Health Reform Movement and respond to the device of the convocation of the conference, which symbolized its 16th edition with the mark of the “8th + 8,” by recovering the slogan and ideas that founded the formulation of SUS.

These deliberations evidently discuss the guarantee of rights in laws but the effective capacity of public health offers and services to the population remains a gap. Moreover, the struggle for equality and integrality entails reconsidering important aspects of planning, supply and demand, and managing and constructing new knowledge (Cecilio; Kings, 2018CECILIO, L. C. O.; REIS, A. A. C. Apontamentos sobre os desafios (ainda) atuais da atenção básica à saúde. Cadernos de Saúde Pública, Rio de Janeiro, v. 34, n. 8, 2018. DOI: 10.1590/0102-311X00056917
https://doi.org/10.1590/0102-311X0005691... ).

This axis of analysis gave rise to three empirical categories that are relevant to our research problem: a) the defense of SUS as a modeling of actions and services and as a social achievement, b) the financing of the health system and the threats to it, and c) the involvement of society as a whole under an agenda to defend SUS.

Discussion

Specific propositions for people living with leprosy

As mentioned, the reports of the municipal and state levels of the 16th CNS lack a specific reference to leprosy. At the national level, registration as a motion has a double emphasis: producing visibility about the disease and its context and guaranteeing the human rights of those who live with it. The invisibility and neglect of people affected by leprosy is explicit in the general context, naturalizing stigmas.

The invisibility of leprosy in health policies and the health system

An important finding is that leprosy was totally or partially invisible in the levels of the 16th CNS. Recognizing this problem corroborates issues such as the recognition of those with leprosy, lack of communication, and difficulties in access and care. If subjects/groups remain unmentioned, they become imperceptible. Therefore, public policies are neither constructed nor receive proper attention, thus perpetuating risks and the illness. Invisibility is, thus, an integral part of the current vicious cycle of leprosy (Martins; Spink, 2020MARTINS, M. H. M.; SPINK, M. J. P. A leptospirose humana como doença duplamente negligenciada no Brasil. Ciência & Saúde Coletiva, Rio de Janeiro, v. 25, n. 23, p. 919-928, 2020. DOI: 10.1590/1413-81232020253.16442018
https://doi.org/10.1590/1413-81232020253... ).

It is possible to assume that the invisibility in the debates of the conferences feeds a cycle that produces fragile subjects who are unable of acting and positioning themselves in the world as active beings. This issue must be overcome so that those affected can disseminate their ideas, express their needs, and recognize themselves as rights-holder.

Leprosy as a disease in its clinical and biological dimensions

In the biomedical perspective of health, leprosy is a disease as any other, manifesting signs and symptoms and requiring tests to confirm diagnosis and appropriate treatment until cure, which SUS should make available for free.

Adopting the Family Health Strategy reoriented health priorities, which now focus on the needs of the population in the territory (Leal et al., 2017LEAL, D. R. et al. Programa de Controle da Hanseníase: uma avaliação da implantação no nível distrital. Saúde em Debate, Rio de Janeiro, v. 41, n. esp., p. 209-228, 2017. DOI: 10.1590/0103-11042017S16
https://doi.org/10.1590/0103-11042017S16... ), a strategic point to incorporate disease control measures. This level of care promotes active searches (routine visits by health teams to people affected by the disease or exposed to great risk), thorough clinical examinations, and treatment to promote recovery, social reintegration, and the restoration of values (Sobrinho et al., 2016SOBRINHO, R. A. da S. et al. Repercussões sociais: histórico da hanseníase. Varia Scientia: Ciência da Saúde, Cascavel, v. 1, n. 2, p. 188-195, 2016. Disponível em:< Disponível em:http://e-revista.unioeste.br/index.php/variasaude/article/view/12882/9378 >. Acesso em: 24 jan. 2021. DOI: 10.48075/vscs.v1i2.12882
http://e-revista.unioeste.br/index.php/v... ).

The teams’ lack of guidance or preparation promotes the continuity of the disease, late diagnoses, and thus the evolution to disabilities and deformities (Bordon et al., 2019BORDON, B.P. et al. O manejo da hanseníase na atenção básica: um relato de caso. Perspectivas Experimentais e Clínicas, Inovações Biomédicas e Educação em Saúde, Campo Grande, v. 5, n. 1, p. 48-53, 2019.).

Leprosy as a stigma

In general, the disease is still marked by the lack of knowledge of its cause, cure, and form of contagion from the past. Compulsory isolation and family breakdown reflect the strong stigmatization of the disease (Pinto Neto et al., 2000PINTO NETO, J. M. et al. O controle dos comunicantes de hanseníase no Brasil: uma revisão da literatura. Hansenologia Internationalis, Bauru, v. 25, n. 2, p. 163-176, 2000.). The humiliation, embarrassment, fear, and contempt attributed to these people influenced-and still influences-the devaluation of their images in their lives and in public space (Almeida et al., 2018ALMEIDA, A. I. S. et al. Marcas do passado: memórias e sentimentos (ex) portadores de hanseníase residentes em um antigo “Leprosário”. Enfermagem em Foco, Brasília, DF, v. 9, n. 4, p. 13-17, 2018. DOI: 10.21675/2357-707X.2018.v9.n4.1353
https://doi.org/10.21675/2357-707X.2018.... ). Stigma is socially and historically constructed and is updated in the reactions of prejudice and even forgetfulness, including reactions to body changes as the disease progresses in the absence of treatment (Bordon et al., 2019BORDON, B.P. et al. O manejo da hanseníase na atenção básica: um relato de caso. Perspectivas Experimentais e Clínicas, Inovações Biomédicas e Educação em Saúde, Campo Grande, v. 5, n. 1, p. 48-53, 2019.). The lack of adequate guidance and the shame patients may feel tend to lead them to a scenario of omission of the disease. In addition to physical distress, work skills decrease and other psychological aspects harm patients. Rather than an individual issue associated with changes in people’s bodies, this configures a cultural issue rooted in the imaginary. Confronting leprosy requires prevention, treatment, rehabilitation, and initiatives to break stigma and prejudice. Integrality, as it has been said, includes both good individual and collective clinical practice, seeking to reconfigure social imaginaries (Ferla, 2004FERLA, A. A. Participação da População: do Controle sobre os Recursos a uma Produção Estética da Clínica e da Gestão em Saúde. Physis, Rio de Janeiro, v. 14, n. 1, p. 85- 108, 2004. DOI: 10.1590/S0103-73312004000100006
https://doi.org/10.1590/S0103-7331200400... ).

Specific propositions on neglected diseases and/or those relevant to the most vulnerable groups

Table 2 shows a common concern in the three reports about the production of inclusion and equality policies that, to some extent, contrasts with the invisibility of leprosy as a singular problem in the first axis.

Social and health vulnerability as a problem for the healthcare system

The different conditions of social inequality to which certain groups are subjected influence their well-being given that those who are socially less favored show a greater possibility of falling ill than the more privileged groups. This is because the health scenario is determined by social, economic, cultural, ethnic/racial, psychological, and behavioral issues (Souza; Silva; Smith, 2013SOUZA, D. O.; SILVA, S. E. V.; SILVA, N. O. Determinantes Sociais da Saúde: reflexões a partir das raízes da “questão social”. Saúde e Sociedade., São Paulo, Brasil, v. 22, n. 1, p. 44-56, 2013. DOI: 10.1590/S0104-12902013000100006
https://doi.org/10.1590/S0104-1290201300... ).

The production of social vulnerability precedes any disease and is expressed in the difficulty of access and quality deficits of the activity of social policies related to people or groups. Leprosy is doubly associated with this concept, as an increased risk and as a difficulty of access since, despite affecting any person or social class, it occurs more prevalently in poor groups due to unfavorable socioeconomic conditions that facilitate contamination and the spread of the bacillus. Moreover, it is marked by customs that expand its dissemination, hygiene habits, and the late search for care, leading to some degree of disability or deformity of the disease (Lopes; Rangel, 2014LOPES, V. A. S.; RANGEL, E. M. Hanseníase e vulnerabilidade social: uma análise do perfil socioeconômico de usuários em tratamento irregular. Saúde em Debate, Rio de Janeiro, v. 38, n. 103, p. 817-829, 2014. DOI: 10.5935/0103-1104.20140074
https://doi.org/10.5935/0103-1104.201400... ).

Recognizing differences and vulnerabilities would enable access to public policies. Thus, insufficient care and the scarcity and weakening of the experienced social protection intensify the vulnerability of these subjects. It is important to recognize them to ensure effective popular participation in decision-making (Adorno, 2011ADORNO, R. C. F. Atenção à saúde, direitos e o diagnóstico como ameaça: políticas públicas e as populações em situação de rua. Etnográfica, Lisboa, v. 15, n. 3, p. 543-567, 2011. DOI: 10.4000/etnografica.1068
https://doi.org/10.4000/etnografica.1068... ) and break the stigmatizing social imaginary to socially reinsert those affected by the disease and its context.

Access of vulnerable populations and groups to care networks with specialized and resolutive actions

Constitutionally guaranteed access to health care is an achievement of social movements. Although the right is guaranteed to all citizens, vulnerable populations/groups still face difficulties in accessing health care, remaining unnoticed by the system (Engstrom; Teixeira, 2016ENGSTROM, E. M.; TEIXEIRA, M. B. Equipe “Consultório na Rua” de Manguinhos, Rio de Janeiro, Brasil: práticas de cuidado e promoção da saúde em um território vulnerável. Ciência & Saúde Coletiva, Rio de Janeiro, v. 21, n. 6, p. 1839-1848, 2016. DOI: 10.1590/1413-81232015216.0782016
https://doi.org/10.1590/1413-81232015216... ).

The principle of universality rearranged the territory to ensure health care. Thus, its organization in care networks enabled hierarchization and regionalization (Araujo et al., 2017ARAUJO, G. B. et al. Territorialização em saúde como instrumento de formação para estudantes de medicina: relato de experiência. SANARE, Sobral, v. 16, n. 1, p. 124-129, 2017.).

The challenges in health are great and include the ability to respond to the problems faced by various population groups since distributing a service fails to ensure the production of good effects (Cecilio; Kings, 2018CECILIO, L. C. O.; REIS, A. A. C. Apontamentos sobre os desafios (ainda) atuais da atenção básica à saúde. Cadernos de Saúde Pública, Rio de Janeiro, v. 34, n. 8, 2018. DOI: 10.1590/0102-311X00056917
https://doi.org/10.1590/0102-311X0005691... ).

Vulnerable populations and groups and the territorial actions of primary care

To mention the issue of territory regarding health is to understand that space includes the dissemination of news, information, ideas, movement of people, exchange of knowledge, and structured actions, rather than only referring to geographical characteristics. Therefore, it configures a place that offers advantages for analyses as it seeks to understand the health-disease process beyond its biological aspects, considering the way societies function to build a relation with the territory (Colin; Pelicioni, 2018COLIN, E. C. S.; PELICIONI, M. C. F. Territorialidade, desenvolvimento local e promoção da saúde: estudo de caso em uma vila histórica de Santo André, São Paulo. Saúde e Sociedade, São Paulo, v. 27, n. 4, p. 1246-1260, 2018. DOI: 10.1590/S0104-12902018170850
https://doi.org/10.1590/S0104-1290201817... ; Teixeira et al., 2014TEIXEIRA, M. B. et al. Avaliação das práticas de promoção da saúde: um olhar das equipes participantes do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica. Saúde em Debate, Rio de Janeiro, v. 38, n. spe, p. 52-68, 2014. DOI: 10.5935/0103-1104.2014S005
https://doi.org/10.5935/0103-1104.2014S0... ).

The introduction of the Family Health Strategy expanded the coverage of Primary Health Care since its action seeks to prioritize the promotion, prevention, and recovery of health (Teixeira et al., 2014TEIXEIRA, M. B. et al. Avaliação das práticas de promoção da saúde: um olhar das equipes participantes do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica. Saúde em Debate, Rio de Janeiro, v. 38, n. spe, p. 52-68, 2014. DOI: 10.5935/0103-1104.2014S005
https://doi.org/10.5935/0103-1104.2014S0... ).

However, the notorious and marked fragmentation of administration, programs, actions, and practices creates obstacles to the care model. These circumstances impose the need to adjust service offerings to the health needs of the population, considering the social and economic contexts in which they are inserted. Thus, it is essential that professionals consider subjects’ social determinants, individuality, and vulnerability in developing care strategies (Teixeira et al., 2014TEIXEIRA, M. B. et al. Avaliação das práticas de promoção da saúde: um olhar das equipes participantes do Programa Nacional de Melhoria do Acesso e da Qualidade da Atenção Básica. Saúde em Debate, Rio de Janeiro, v. 38, n. spe, p. 52-68, 2014. DOI: 10.5935/0103-1104.2014S005
https://doi.org/10.5935/0103-1104.2014S0... ; De Oliveira, 2018DE OLIVEIRA, R. G. Sentidos das Doenças Negligenciadas na agenda da Saúde Global: o lugar de populações e territórios. Ciência Saúde Coletiva, Rio de Janeiro, v. 23, n. 7, p. 2291-2302, 2018. DOI: 10.1590/1413-81232018237.09042018
https://doi.org/10.1590/1413-81232018237... ).

General propositions that apply to leprosy and neglected diseases

The general characteristics in Chart 3 implicitly show the variations of themes such as SUS financing and management, work valorization, health education, participation, social control, service intentionality to reduce social inequities, and professional interest toward patients/families.

Defending SUS as a model of actions, services, and social achievement

The idea of human rights evokes movements that culminated in the achievement of fundamental guarantees to citizens such as popular initiatives and conferences. The defense of SUS includes struggles regarding the provision of health services, regional inequalities, and underfunding (Campos, 2018CAMPOS, G. W. de. S. A defesa do SUS depende do avanço da reforma sanitária. Interface, Botucatu, v. 22, n. 64, p. 5-8, 2018. DOI: 10.1590/1807-57622017.0772
https://doi.org/10.1590/1807-57622017.07... ).

Services show a need to expand multiprofessional teams, reduce bureaucracy in specialty care, and build more humanized and welcoming care. Regarding inequalities, it is necessary to provide measures that guarantee integral health and equality to vulnerable populations, consolidate the care network, and structure policies that consider territoriality and regionality in access to health. Regarding underfunding, we seek to repeal Constitutional Amendment no. 95/2016, which froze public investments in health for 20 years (Marin; Marchioli; Morackvick, 2013MARIN, M. J. S.; MARCHIOLI, M.; MORACVICK, M. Y. A. D. Fortalezas e fragilidades do atendimento nas unidades básicas de saúde tradicionais e da estratégia de saúde da família pela ótica dos usuários. Texto & Contexto - Enfermagem, Florianópolis, v. 22, n. 3, p. 780-788, 2013. DOI: 10.1590/S0104-07072013000300026
https://doi.org/10.1590/S0104-0707201300... ; Fields, 2018BAIALARDI, K. S. O estigma da hanseníase: relato de experiência em grupo com pessoas portadoras. Hansenologia Internationalis, Bauru, v. 32, n. 1, p. 27-36, 2007. DOI: 10.47878/hi.2007.v32.35191
https://doi.org/10.47878/hi.2007.v32.351... ).

The financing of the health system and the threats to it

Despite its undeniable advances, SUS faces several obstacles, including funding, which is always insufficient to guarantee universal and quality public health. According to the constitutional resolution, SUS would have to be financed with resources from the social security budget and with the participation of each sphere (municipal, state, and federal), rather than being defined by the percentages each instance should provide (Cislaghi; Teixeira; Souza, 2011CISLAGHI, J. F. L.; TEIXEIRA, S. O.; SOUZA, T. O. Financiamento do SUS: principais dilemas. In: CIRCUITO DE DEBATES ACADÊMICOS, 1., 2011, Brasília, DF. Anais [...]. Ipea, 2011. Disponível em: <Disponível em: https://www.ipea.gov.br/code2011/chamada2011/pdf/area2/area2-artigo16.pdf >. Acesso em: 2 jul. 2021.
https://www.ipea.gov.br/code2011/chamada... ).

However, problems include non-compliance by the spheres in the planned linkage and deviations from the purpose of the resources aimed at health. In 2015, Constitutional Amendment no. 86 determined that the minimum federal resources for health would be calculated based on the net current revenue of the Union, starting with 13.2% in 2016 until reaching 15% in 2020 (Menezes; Moretti; Kings, 2019MENEZES, A. P. R.; MORETTI, B.; REIS, A. A. C. O futuro do SUS: impactos das reformas neoliberais na saúde pública - austeridade versus universalidade. Saúde em Debate, Rio de Janeiro, v. 43, n. spe. 5, p. 58-70, 2019. DOI: 10.1590/0103-11042019S505
https://doi.org/10.1590/0103-11042019S50... ; Bevilacqua; Soares; Santos, 2020BEVILACQUA, L.; SOARES, F. F.; SANTOS, J. M. T. Novo regime fiscal frente à garantia constitucional de financiamento adequado das políticas públicas de saúde. Cadernos Ibero-Americanos de Direito Sanitário, Brasília, DF, v. 9, n. 2, p. 74-98, 2020. DOI: 10.17566/ciads.v9i2.672
https://doi.org/10.17566/ciads.v9i2.672... ). The current barrier refers to repealing Constitutional Amendment no. 95, which froze primary public spending for 20 years (Campos, 2018CAMPOS, G. W. de. S. A defesa do SUS depende do avanço da reforma sanitária. Interface, Botucatu, v. 22, n. 64, p. 5-8, 2018. DOI: 10.1590/1807-57622017.0772
https://doi.org/10.1590/1807-57622017.07... ).

The involvement of society as a whole in an agenda to defend SUS

The idea of society involvement comprises mobilizations that can influence the guarantee of rights and social protection. Merhy (2014MERHY, E. E. Saúde: a cartografia do trabalho vivo. 4. ed. São Paulo: Hucitec, 2014., p. 13) points out that each individual presents their singularity, which is ever changing. Subjects are in constant change and in “production.” This action exercises representations of speeches, discourses, and values that can provide greater visibility to SUS (Fernandes; Moreira, 2013FERNANDES, F. M. B.; MOREIRA, M. R. Considerações metodológicas sobre as possibilidades de aplicação da técnica de observação participante na Saúde Coletiva. Physis, Rio de Janeiro, v. 23, n. 2, p. 511-529, 2013. DOI: 10.1590/S0103-73312013000200010
https://doi.org/10.1590/S0103-7331201300... ; Ferla et al., 2019FERLA, A. A. et al. Narrativas como dispositivos de educação permanente em saúde: uma experiência em Tefé/AM. In: MOREIRA, M. A. (Org.). Educação permanente em saúde em Tefé/AM: qualificação do trabalho no balanço do banzeiro. Porto Alegre: Rede UNIDA, 2019. p. 194-216.). Strengthening social participation can advance universalization and equality of access to health as it gives space to several perspectives and voices and socializes and reconciles public health interventions with real social demands (Coelho, 2012COELHO, J. S. Construindo a participação social no SUS: um constante repensar em busca de equidade e transformação. Saúde e Sociedade., São Paulo, v. 21, n. supl. 1, p. 138-151, 2012. DOI: 10.1590/S0104-12902012000500012
https://doi.org/10.1590/S0104-1290201200... ).

Final considerations

Regarding the results in this study, it is important to note that the state and national levels of health conferences cumulatively focus on the municipal base of the Brazilian decentralized and ascending health system. Therefore, the deliberations made at the local, state, and federal levels affect the policies of the municipal system. In view of the observed aspects, it is important to point out that the absence of prioritization in conference reports continues to make leprosy a neglected disease. This disease affects vulnerable populations and causes stigmatizing social conditions, limitations, uncertainties, discomfort, and lower self-esteem and self-image.

However, the scarcity of specific propositions regarding leprosy in the reports of the levels of the 16th CNS contrasts with the records on the set of neglected diseases that affect vulnerable population groups more rigorously. By itself, this scarcity points to the need to induce SUS health policies in the three spheres of government toward inclusion and reduction of current inequalities. Moreover, it is necessary to enforce SUS as a policy of inclusion and as a social conquest in clear resistance to recent budget restrictions and reduction of the scope of care and/or access. It is very relevant to continue reflecting on the approach to leprosy as a socially relevant public health problem under an expanded understanding of collective health. SUS cares for individuals with diseases and people’s health and configures an observatory of civilizing processes and a laboratory of inclusion and equality since the production of health involves these dimensions.

Our analysis is limited by its basis on documental analysis that, even in the case of the reports of the Health Conferences, fails to directly represent the daily routine of care. These documents have the formal capacity to focus on the formulation of policies and initiatives. Further studies are needed, especially to monitor the implementation of the formulated guidelines in SUS health plans and strategies at the national, state, and municipal levels.

Our most relevant contribution refers to the invisibility leprosy continues to have in public policies, which is probably associated with its condition as a neglected disease and its current incidence and prevalence, reaching people and groups in greater vulnerability. This finding suggests the implementation of health education actions to mobilize the culture of society and permanent education in health, promoting and updating actions in workers of public and private health services.

References

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