The right to health in the context of judicialization: itineraries and experiences of users in the Brazilian semi-arid regionAbstract
The article aimed to analyze the itineraries and experiences of users in the context of judicialization in health. This was a descriptive and documentary study with a qualitative approach, based on a survey of the profile of demands in health-related lawsuits and semi-structured interviews with ten users who resorted to the courts to guarantee health care. Data analysis was performed using the Thematic Content Analysis technique. The results pointed to three thematic categories: 1) User itineraries: from diagnosis of the disease to seeking treatment in the UHS; 2) “Not available in the UHS”: the judicial route as an alternative to obtain treatment; and 3) Right to health under the bias of judicialization: scenarios of expectations and challenges. Journeys were identified, marked by the surprise of the diagnosis of the disease, the search for treatment, and the consequent denial of access to treatment, constituting a complex process between services and public agencies. Judicialization emerged as the main alternative to mitigate the wait for standard administrative process and guarantee access to the right to health.
Keywords:
Right to Health; Health Judicialization; Public health; Unified Health System.
Resumo
Objetivou-se analisar os itinerários e as experiências de usuários no contexto da judicialização na saúde. Estudo descritivo e documental, de abordagem qualitativa, feito a partir de um levantamento do perfil de demandas das ações judiciais em matéria de saúde e entrevistas semiestruturadas com dez usuários que recorreram à via judicial para garantia de assistência à saúde. A análise dos dados se deu pela técnica de Análise de Conteúdo Temática. Os resultados apontaram três categorias temáticas: 1) Itinerários dos usuários: do diagnóstico da doença à busca pelo tratamento no SUS; 2) “Não tinha no SUS”: a via judicial como alternativa para conseguir o tratamento; e 3) Direito à saúde sob o viés da judicialização: cenários de expectativas e desafios. Identificaram-se itinerários marcados desde a surpresa do diagnóstico da doença até a busca pelo tratamento, e a consequente negativa de acesso ao tratamento, configurando um processo complexo entre os serviços e os órgãos públicos. A judicialização emergiu como a principal alternativa para atenuar a espera da via natural e garantir o acesso ao direito à saúde.
Palavras-chave:
Direito à; Saúde; Judicialização da Saúde; Saúde Pública; Sistema Único de Saúde.
Introduction
In Brazil, the phenomenon of judicialization has been the subject of discussion regarding the jurisdictional control of public health policies, as individuals increasingly turn to the Judiciary to claim their rights and have their health needs met within the scope of the Unified Health System (UHS) (CNJ, 2021; Leão; Ianni, 2020).
Judicialization in the field of public health begins when users (patients) of the public health system need a service that is not covered by the clinical protocols of the UHS, leaving them unable to solve their problems, and continues when the user does not have the financial means to purchase a certain medicine that is in short supply or not provided by the health service. Thus, they seek information and means of acquiring it (Freitas, Fonseca, Queluz, 2020; Lisboa; Souza, 2017). The judicial route appears as a possible means for citizens to access health services in the public sphere (Diniz; Carvalho, 2024).
This phenomenon is understood as a transfer of power to judicial institutions, to the detriment of traditional political bodies: the executive and legislative branches (Barroso, 2018). The judicialization of health encompasses the actions of the Judiciary in response to the State's failure to implement public health policy, thus serving as an alternative for citizens who see their rights infringed upon (Silva; Nicoletti, 2020).
In recent years, the population has become more aware of their rights and the failure of public authorities to meet these demands. In addition, the strengthening of public defenders, the referral of cases by doctors to the courts, and difficulties in managing financial resources have contributed to this phenomenon (Sant'ana, 2017; Wang et al., 2020). In this scenario, where recognized rights clash with the state's inability to meet demand, there has been an explosion of lawsuits seeking health services and medications (CNJ, 2019; Martins; Allen, 2020; Diniz; Carvalho, 2024).
The debate on judicialization is relevant for public health managers, since budgetary expenditures to comply with legal actions not only interfere with the structure and financing of the UHS, but also impact public accounts (Chieffi, Barradas, and Golbaum, 2017; Lima, 2020; Vieira, 2023). Based on this issue, the following question arises: What are the itineraries and experiences of users in the context of the judicialization of health? It is recognized that the narratives of experiences, the level of understanding of the right to health, and access to the UHS for users of the Brazilian public health system are still little known, as they are points that are not highlighted in discussions and literature on judicialization (Campos Neto; Gonçalves; Andrade, 2018).
This study aims to analyze the itineraries and experiences of users in the context of judicialization in health.
Methodology
This is a descriptive and documentary study with a qualitative approach, conducted in a municipality in the interior of the state of Rio Grande do Norte, Brazil, in the Brazilian semi-arid region. The municipality has an estimated population of 294,076 inhabitants and a land area of 2,110.21 km2, and is currently an important reference in state health care.
The documentary research was carried out at the Municipal Attorney General's Office (AGO) to collect data on the number of health-related lawsuits within the time frame from 2017 to 2019. The CRETA system was used, a virtual platform used by federal courts for legal proceedings, in which the entire process is conducted virtually.
A total of 575 lawsuits were identified according to the monitoring spreadsheets provided by the AGO, which were processed within the scope of the 13th Federal Court. Cases from other federal and state courts were excluded from the study because they have different access and organizational dynamics compared to those found in federal courts, which would imply logistical limitations for data collection.
After reviewing the cases, a random selection was made from among the registered cases to select the users to be invited to participate in the study. The sampling process chosen for this study was theoretical saturation, which is characterized by the emergence of repetitions during the interviews (Fontanella; Ricas; Turato, 2008).
The final number of 10 users who resorted to legal action to request the guarantee of the right to health through the UHS in the municipality between 2017 and 2019 was included. The instrument's script consisted of two sections: the first with a sociodemographic and educational questionnaire for participants, and the second with questions about the disease and its treatment, the legal route, and the right to health.
The interviews were analyzed using Bardin's Thematic Content Analysis (2009), which comprises three stages: pre-analysis, exploration of the material, and treatment of the results and interpretations. The first stage involved exhaustive reading and corpus construction. In the exploration of the material, coding was performed, which occurred through the repetition of words and expressions, in addition to categorization of the material, in which excerpts from the recording units were made. In the last stage, the results and interpretations were processed (Bardin, 2009).
Thus, three central thematic categories were developed, namely: 1) Users' itineraries: from diagnosis of the disease to seeking treatment in the UHS; 2) “It wasn't available in the UHS”: the judicial route as an alternative to obtaining treatment; and 3) The right to health from the perspective of judicialization: scenarios of expectations and challenges.
The research project in question was approved by the Research Ethics Committee (REC) of the State University of Rio Grande do Norte, under Opinion No. 3,785,614 and the Certificate of Ethical Appraisal (CAAE) No. 26743419.9.0000.5294. To guarantee the anonymity of the participants, the letter “U” was used to name the excerpts from the users' statements, followed by a number corresponding to the order in which the interviews were conducted.
Results
The profile of the participants was characterized as all female, presenting themselves as the main beneficiaries of the process (six), aged between 27 and 58 years, with household tasks as their occupation (four), born in the interior of RN (seven), had completed high school (five), and had an average income of 91.14% of the minimum wage. Regarding the treatment required, there was a predominance of medications (four), tests and procedures (four), followed by supplies (two). The participants' information is presented in Table 1 below.
Main sociodemographic, economic, and educational characteristics and the treatment required by study participants. Mossoró (RN), Brazil. 2020.
Based on an exhaustive reading of the material obtained through interviews with the female users participating in the study, three central thematic categories and their respective subthemes were developed. It was identified that the content of the corpus pointed to the itineraries and experiences of users in the context of the judicialization of health.
In Theme I: “Users' itinerary: from diagnosis of the disease to seeking treatment in the UHS,” participants express the stage of seeking diagnosis, which occurred in a heterogeneous manner and involved a complex itinerary between health professionals and services, whether using public or private services (Chart 1).
Although they point out the importance of starting medical treatment, they report difficulties in accessing prescribed medications and tests, requiring multiple visits to public health services. In some situations, the state does not meet the basic requirements for the provision of medicines and other supplies under the UHS, reinforcing a negative perception among the population of the inefficiency of the services offered, as well as discontent and distrust of the public system.
Theme II, entitled “It wasn't available in the UHS: the judicial route as an alternative to obtaining treatment,” provides an overview of the discovery, motivation, and formalization of the judicial process to guarantee the right to health. The testimonies showed that medical professionals were the main source of information on this topic, and that the motivations for this choice are related to the high cost of treatment, in addition to the scarcity of health services and supplies provided by municipal management (Chart 2).
Although it brings the user closer to resolving their problem by providing access to the requested treatment, judicialization requires an investment of time in formalizing and following up on the process. The journey taken by citizens ends up frustrating their expectations and generating despair in the Judiciary as a tool for resolving their problems. With a positive outcome of the process and the provision of treatment, the search cycle comes to an end; in other cases, the rejection of requests has generated frustration and a feeling of disbelief in relation to justice and the guarantee of the right to health in the country.
In theme III: “The right to health from the perspective of judicialization: scenarios of expectations and challenges,” the nuances surrounding judicialization in the UHS and the “balancing act” of ensuring the right to adequate treatment for health demands are highlighted, a path that requires waiting on the part of the applicant, given the entire process from formalization to receiving the outcome of the case (Chart 3).
The idea of the right to health is related to the availability and dispensing of medicines, procedures, and supplies in the UHS. In practice, judicialization has become a habit because if treatment is not provided “naturally” (through administrative channels, via the UHS), the Judiciary is called upon to seek health care. Although the Judiciary can function as a tool that guarantees the interviewees' right to health, their statements suggest dissatisfaction with having to use it and reveal that the State is not complying with what is provided for in the legislation.
Discussion
The understanding of health as humanity's greatest asset and the importance of remaining active and productive in society are still predominant factors in the common ideology of the study participants, considering the various elements that involve the broader perspective of these concepts as qualities resulting from access to education, income, housing, health services, among others (Ferraz, 2020; Martins; Allen, 2020; Diniz; Carvalho, 2024). In this sense, the period from the onset of illness to diagnosis is generally marked by feelings of surprise and fear in the face of the unexpected or even death, given the challenges involved in treatment. The condition of illness confronts the individual with unexpected changes, bringing new configurations in their relationships with work, family, and friends, directly affecting their life context (Leite; Mafra, 2010; Lisboa; Souza, 2017; Leão; Ianni, 2020).
Once the diagnosis has been made and the prescription issued, users begin their search for treatment in the public health system (via the UHS), in a journey marked by multiple visitss between services, political office holders, public and/or private institutions, promises, and frustrations (Lima, 2010; Oliveira et al., 2021). Information about the legal route was received by prescribing physicians and social workers. It is observed that the referral reflects the professionals' commitment to guaranteeing access and raising awareness among the population about the constitutional right to health (Dias, 2015; Vieira, 2023).
The search for assistance and treatment within the UHS can be likened to a veritable multiple visits between public agencies, resulting from countless attempts, some unsuccessful, to obtain treatment (Leite; Mafra, 2010; Ferraz, 2020). When seeking health services, the user's main objective is to solve their health problem. Thus, it can be observed that the different paths taken by the population in the context of access to health care in the public network are based on elements linked to their symbolic universe and what they believe to be most appropriate, creating the most appropriate itinerary for themselves, based on the possibilities and adversities encountered (Dias, 2015; Oliveira et al., 2021).
Users begin their multiple visits to health units in search of primary care; however, as they are unable to obtain answers from the public service, they resort to legal action (Oliveira et al., 2021). Amid so many adversities, users find themselves lost within the health network and, when faced with the aggravation of the disease and the lack of resources, they opt to seek other means to guarantee their valuable right to health, among which the Judiciary becomes one of them (Oliveira, 2014; Cordeiro, 2018).
In the context of the legal system, the principle of human dignity emerges as the main guiding element of Brazilian law (Vieira, 2020). By reinforcing the human being as the main reference in the understanding of legal actions, the protection of rights, especially the right to health, is highlighted (Lima, 2020; Freitas; Fonseca; Queluz, 2020).
In most cases, resorting to legal action is seen as a last resort, a way to break the cycle of waiting and the endless multiple visits between public agencies, departments, and services in order to obtain the much-desired access to health care. Before reaching the Judiciary, the user has visited various locations and services at different levels of the UHS, in a complex and contradictory itinerary of flows, without success in obtaining the desired outcome. On the other hand, in some situations, this may still be an alternative to mitigate the wait for standard administrative process (Oliveira et al., 2015).
One consequence of this judicialization is that it forces judges to face new situations in trials and provides a means for such situations to be reviewed by the same judges or by other members of the judiciary, all of whom are subject to social pressure channeled by the large number of lawsuits, prompting the implementation of health care (Silva, 2015; Vieira, 2020).
A study conducted in the state of Bahia, with the aim of analyzing the reasons that led people to resort to the Judiciary to obtain access to analog insulins, found that the main motivation was the plaintiff's financial insufficiency (Lisboa; Souza, 2017). Regarding this debate, there is a consensus on the use of the Judiciary to provide medicines, seen as a legitimate way to guarantee the full exercise of the right to therapeutic care (Batistella et al., 2019; Oliveira et al., 2021).
The statements also pointed to difficulties after entering the judicial process related to the socioeconomic conditions of the interviewees, including: difficulty and financial costs in traveling between agencies and public services (searching for documents to formalize the process, among others), and waiting time for the lawsuit to be processed. Bureaucracy has its advantages for maintaining the efficiency of a democratic state; however, it has dysfunctions such as the depersonalization of relationships (Vieira, 2023). Furthermore, the same bureaucracy causes feelings such as suffering, dissatisfaction, and discouragement among users, due to the bureaucracy involved in acquiring medications (Guerin, Rossoni, Bueno, 2012).
There is an awareness that the judicial route could be the main alternative to solve their problem; however, aspects such as the delay after filing a claim until obtaining a response emerge, which would not be expected, since the issue raised was a right related to maintaining their health. In Brazil, the Judiciary is of fundamental importance to users, since, in most cases, society is not fully supported by the State (Sant'ana, 2017). When filing a lawsuit, users see this possibility as a way of guaranteeing a right that has not yet been enforced, and the pursuit of fundamental rights is legitimate, regardless of whether it conflicts with a collective demand (Leite; Mafra, 2010; Silva, 2015; Batistela, 2019).
The delay reproduces a distressing dynamic with obstacles that can harm the user and everyone who deals with the system daily (Silva; Nicoletti, 2020). Delayed treatment of an acute illness can lead to the user's death. It is recognized that procedural delays can cause the worsening of diseases and even the death of the claimant, representing a threat to the right to life (Lima, 2010; Cordeiro, 2018).
UHS users tend to seek access to health care, recognizing it as a right. It is understood that the adoption of public policies has the objectives of preventing and providing assistance, in order to provide comprehensive care through community participation and the encouragement of the construction of a regionalized and decentralized network (Lima, 2020; Vieira, 2023).
In recent years, Brazil has experienced major challenges in the health sector due to increased social inequality, economic recession, and new modes of organization and exploitation of labor in society (Lisboa; Souza, 2017; Ferraz, 2020). As a result, users suffer the direct impacts of this situation, whether through underfunding and privatization initiatives by irresponsible governments or through increasing levels of poverty and illness among the population (Vieira, 2020; Leão; Ianni, 2020).
Within the UHS, the problems involve the precariousness of the physical structure of services, the scarcity of material and human resources, and the reduction of care units, which creates a barrier to the population's access to diagnostic and therapeutic methods (Oliveira, 2014; Lima, 2020). It is known that such obstacles have negative impacts on the production and provision of health services, with direct repercussions on users' opinions, leading to feelings of dissatisfaction and discredit regarding the care provided.
It is noteworthy that, although the UHS has resources that assist in the definition and distribution of technologies and inputs in the network, many diseases do not have adequate treatment options in the system. Thus, given the lack of expectations for major changes arising from the current institutionalized mechanisms of social participation or political mobilization, it is reasonable to assert that the movement toward intense judicialization of health will continue to be used as an instrument for realizing the right to health.
Conclusion
The study revealed that the use of legal action was associated with the high cost of treatment and insufficient resources to be treated in the private sector, the unavailability of health services in the UHS, delays in care, and the urgent desire to undergo treatment and minimize the impact of the disease. Disbelief in the public health system was also a motivating factor for legal action.
The narratives raise important reflections in the debate on legal action in the context of the right to health, through the therapeutic itineraries and experiences of users. Along this path, we identified journeys marked by suffering and long “multiple visits” between public agencies and services, as well as feelings such as fear and anguish. In some situations, this journey brought the study participants a form of personal empowerment in terms of engaging in the fight for their rights. It is known that such obstacles have negative impacts on the production and provision of health services, with direct repercussions on the opinion of users, leading to feelings of dissatisfaction and discredit in relation to the care provided.
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Reviewers: Leila Maia and Suely Tavares
All research data are available in this article
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Editor: Paula Nunes
