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“A lack of information keeps us from medicine, well-being, harmony ...”: A mixed method study with plaintiffs requesting medicines in administrative cases

Amanda Queiroz Soares1* - Soares, Amanda Queiroz
Miriam Amaral Melo2 - Melo, Miriam Amaral
Pedro Ivo da Silva3 - Silva, Pedro Ivo da
Virgínia Oliveira Chagas4 - Chagas, Virgínia Oliveira
Mércia Pandolfo Provin5 - Provin, Mércia Pandolfo
Maisa Miralva da Silva6 - Silva, Maisa Miralva da
Vanessa da Silva Carvalho Vila7 - Vila, Vanessa da Silva Carvalho
Rita Goreti Amaral8 - Amaral, Rita Goreti

1 Farmacêutica do Hospital das Clínicas, Universidade Federal de Goiás. E-mail: amandaqueirozsoares2@gmail.com. ORCID: https://orcid.org/0000-0003-4416-1108
2 Farmacêutica do Hospital do Coração. E-mail: mirian-amaral@hotmail.com.
3 Farmacêutico do Hospital Municipal de Aparecida, Secretaria Municipal de Aparecida de Goiânia. E-mail: ivopedro07@gmail.com. ORCID: https://orcid.org/0000-0002-7441-1852
4 Farmacêutica, Universidade Federal de Goiás. E-mail: virginiafarm@gmail.com. ORCID: https://orcid.org/0000-0003-3470-7234
5 Professora da Faculdade de Farmácia, Universidade Federal de Goiás. E-mail: merciap@gmail.com. ORCID: https://orcid.org/0000-0001-7529-585X
6 Professora, Pontifícia Universidade Católica de Goiás. E-mail: maisasilva@uol.com.br. ORCID: https://orcid.org/0000-0003-3072-3560
7 Professora, Pontifícia Universidade Católica de Goiás. E-mail: vscvila@uol.com.br. ORCID: https://orcid.org/0000-0002-1785-8682
8 Professora da Faculdade de Farmácia, Universidade Federal de Goiás. E-mail: ritagoreti26@gmail.com. ORCID: https://orcid.org/0000-0001-8890-0852

*Correspondência: Setor de Farmácia Hospitalar, Hospital das Clínicas, Universidade Federal de Goiás, 1ª Avenida, s/n, Setor Leste Universitário, Goiânia, Goiás, Brasil. 74605-020. Fone: 55-062-99397-3701.

ABSTRACT
The need to request public health managers to ensure the right of access to medicines characterizes an administrative case and the method to do so is called the administrative route. This mixed method study aimed to analyze the perceptions of plaintiffs requesting medications by the administrative route about barriers to access medicines in the Brazilian public health sector. Data were gathered through focus groups and questionnaires. The results point to the interdependence of pharmaceutical services with the interfacing areas to ensure access. The barriers related to individuals reflect the commitment to develop citizenship, justifying the cost of the medicine to motivate the demand. Barriers to service provision include irregular availability of medicines, insufficient resources, and unsatisfactory quality of services. The difficulty in obtaining medical consultations and prescriptions originating in the public sector are barriers to the health sector. The barriers above the health sector are compliance with administrative procedures, corruption, and clientelism. The administrative route intensifies inequities in access to healthcare in Brazil.
Key words: Pharmaceutical Services. Health Services Accessibility. Health Status Disparities. Brazil.

INTRODUCTION
Insufficient availability and equity of access to essential medicines (1) has contributed to increasing drug expenditures and hindering the progress of health systems with universal coverage (2). Brazil is inserted in this context (3), has instituted a system (Unified Health System - SUS) which guarantees the population universal, equitable, and comprehensive access to health actions and services (4).
Although the country has instituted and periodically revised the list of essential medicines, the principle of comprehensiveness is peremptory for the right of access to medicines, even if they are not included in this list. Seeking to make this right effective, many citizens turn directly to the public health service manager to access medicine through administrative cases (from here on referred to as the administrative route) (5). This practice has become common in Brazil, often seen to alleviate externalities related to judicialization (5-7).
A look at the literature on administrative cases or the administrative route against SUS principles enables a better understanding of the subject. This way gives the executive power better management and control of what is being requested, providing opportunities for implementing the public policy of universal access. The principle of universality is infringed by restricting these demands to users with prescriptions issued by the public health sector (5), since it is legitimate for citizens to claim medicines from the State, regardless of the legal nature of the healthcare provider (4).
The administrative route has been considered equitable because it meets the demands of lower-income individuals (5, 8). However, access only occurs to the minority who claim this right. In addition, some situations point to the lack of equity in this route. In general, it is related to personal favoring in granting these requests (9) and the fluidity of the applicants between public and private care in a complementary way (5, 10).
By comparing the medications supplied through the administrative route with the lists of essential medicines, studies have shown greater rationality in granting these demands and promoting the principle of comprehensiveness. Thus, a reduction in the deferral of medications with therapeutic alternatives has been reported, as well as an increase in those not included in these lists. In addition, the supply of medications on these lists is observed, portraying the failures in the implementation of public health policy (5, 8, 9, 11).
Researches describe the plaintiffs\' characteristics and the content of the demands for medicines through the administrative route (5-11). However, it is still scarce and insufficient to understand the perception of citizens about this route: What motivates an individual to demand medication through the administrative way? Is the executive way capable of breaking down barriers to access medicines in the public health sector?
Most studies on access to medicines are dedicated to evaluating the availability of medicines in health services, not only ignoring the other dimensions of access but mainly the interdependence of pharmaceutical care actions with the components of the different levels of the healthcare system. There is also a lack of a theoretical framework that sustainably guides qualitative studies on access to medicines. Thus, this study aimed to analyze users\' perceptions who used the administrative route on barriers to access medicines in the Brazilian public health sector.

THEORETICAL-METHODOLOGICAL FRAMEWORK
Study design and location
This is a mixed-method study involving a focus group to explore the perception of medicine applicants about barriers to accessing medicines through the administrative route, a questionnaire to outline the profile of the focus group participants, and a description of the medications required.
The study was carried out in a state capital city in the central-west region of Brazil. According to the National Survey on the Access, Use and Promotion of the Rational Use of Medicines (Pesquisa Nacional de Acesso, Utilização e Promoção do Uso Racional de Medicamentos - PNAUM) conducted in health services in 2014, the Midwest region had the worst performance at the national level in terms of user satisfaction with pharmaceutical assistance in primary care (12), as well as for the perception of users about total access to medicines in the SUS (46.3%) (13). In the population-based PNAUM, only 44.8% of adults and older adults in the Midwest region reported full free access to treatment of chronic diseases (14).
The studied municipality has approximately 1.4 million inhabitants and has 79 drug distribution services among 119 basic health units. Of these, only one was destined to meet administrative demands, growing since 2010 after a technical cooperation agreement was signed between the State Public Ministry and the Municipal Health Department to prioritize medicine demands through the administrative route over the judicial (15). Thus, taking advantage of the window of opportunity created by this event, the study was conducted after the municipality consolidated the administrative route.

Participant selection
The selection of participants was based on a survey of all administrative processes filed at the Municipal Health Department from October 2012 to March 2013, totaling 713 processes. Those granted for the supply of medicines and available in the physical collection of the Pharmacy to meet these demands were selected.
Users of the 119 selected processes were contacted by telephone and invited to participate in the study. For users under 18 years of age, a companion aged 18 years or over with knowledge of the therapeutic itinerary was identified.
The representatives of 105 processes were effectively approached for the research, of which 36 accepted the invitation, totaling 41 participants, including users and companions. Representatives of 69 processes who refused the invitation alleging lack of time and interest, impediment due to illness, or change of residence in the municipality were excluded. In addition, representatives of 14 processes not contacted after six attempts on different days and times were excluded.

Data collection
All data were collected in April 2013 at the Pharmacy designed to meet administrative demands. The choice and preparation of the environment were based on guaranteeing the participants\' privacy and accommodating those with mobility difficulties, using a room with restricted access to participants and researchers, and without any contact with Pharmacy collaborators and users before or during data collection.
Two groups were constituted as analysis units: Public-G, consisting of open processes with prescriptions originating in the public health sector; Private-G, comprised of representatives from available processes with prescriptions originating in the private sector. Data collection then took place in five focus group sessions, three for the Public-G, with 14 users and 12 companions, requiring 22 processes, and two sessions for the Private-G, with eight users and seven companions, requiring 14 processes.
The following questions guided the sessions: How was the experience for you to get the medication? What were the factors which led you to seek this medicine in the public sector? How do you assess access to medication in the public sector? In addition to public services, what are the other factors that can interfere with access to medication? The same researcher moderator conducted the sessions of approximately 90 minutes and two observers taking notes, who had no prior contact with the participants. All sessions were digitally recorded and stored in a file with restricted access to researchers and transcribed by observers. The moderator made a summary of each session, allowing the participants to add, clarify, or change any information. In the end, the researchers made the relevant entries in the field diary to support the analysis.
The questionnaire to outline the profile of the participants was provided at the beginning and collected at the end of the focus group session, including age, gender, marital status, education, occupation, and family income. The data on the 36 processes included: the prescription origin and the presence on the essential medicines lists (16, 17).

Data analysis
The focus group analysis was performed in an electronic spreadsheet and based on the theoretical perspectives of the conceptual framework proposed by Bigdeli et al. (18), which classifies the barriers to accessing medicines into five levels: individuals, families, and community; provision of health services; health sector; above the health sector/national context; above the health sector/international context.
The interpretive analysis was carried out by the team researchers in a continuous and simultaneous process to data collection, following the steps proposed by Braun & Clarke (19): familiarization with the data, identifying codes, searching for themes, reviewing themes, and defining and naming themes, and producing the report. The definition and naming of thematic nuclei considered the aspects that emerged from the participants’ statements within the five levels of the health system described in the adopted conceptual framework (18).
The profile data of the participants and the medicines required were analyzed using descriptive statistics and presented in absolute and relative numbers.

Ethical aspects
The Research Ethics Committee approved the institution\'s study, where the study was conducted under protocol number 021/12. All participants formally consented to participate in the research through the Free and Informed Consent Form.

RESULTS
The narratives presented throughout the text demonstrate the heterogeneity of the participants’ experiences to break down barriers to access medicines required by the administrative route and the complexity and interdependence of this access between the different health system levels.
The results are presented in four thematic areas: barriers related to the individual, the family, and the community; barriers related to the provision of health services; barriers related to the health sector; barriers above the health sector/national and international contexts. Figure 1 illustrates the barriers to access medication through the administrative route perceived by the plaintiffs using the structure proposed by the adopted conceptual framework (18).

Barriers related to the individual, the family, and the community
It was observed that even though some therapeutic itineraries are more frequent among applicants for medication through the administrative route, the barriers to this access are not perceived in the same way and magnitude by the participants. This fact is attributed to each participant\'s physical, natural, human, and social capital, directly influencing the context of vulnerability to which an individual is inserted and in their interactions with service providers when searching for the medication (Table 1).
The profile of users and companions contributes to understanding this vulnerability. It was observed that there is a difference between the analyzed groups, with a predominance among users of the Public-G of older adults aged 60 years or more (12; 54.5%), female (14; 63.6%), eight to 11 years of formal education (11; 57.8%), retired/pensioner (10; 52.6%), living with a partner (12; 54.5%), and a mean family income of USD 1,030.26 ± 547.62. In the Private-G, children and adolescents from 0 to 19 years old predominated (7; 50.0%), male (9; 64.3%), 12 or more years of formal education (5; 41.7%), without paid activity (6; 54.5%), living without a partner (12; 85.7%), and a mean family income of USD 1,921.46 ± 1,813.96. Among the companions in the Public-G, adults aged 20 to 59 years predominated (8; 80.0%), female (7; 58.3%), 4 to 7 years of formal education (6; 54.5%), performing a paid activity (6; 50.0%), and a mean family income of USD 1,005.50 ± 514.56. Among the companions in the Private-G, adults aged 20 to 59 years predominated (6; 85.7%), female (5; 71.4%), 12 or more years of formal education (5; 71.4%), performing a paid activity (4; 57.1%), and a mean family income of USD 2,907.33 ± 3,043.81.
The analysis of physical capital showed that despite the higher mean income among participants in the Private-G, the cost of medicines was the main barrier to access on the demand side for both groups. Thus, the main measures taken by the participants to minimize the commitment of family income with the purchase of medicines until they can obtain them through the SUS were: receiving a donation from the family and the community, replacing the medicine of choice with a cheaper alternative, reducing the dose and treatment interruption.
High expenses on medications can interfere with the natural capital of the applicants, especially concerning compromising access to basic needs, such as food.
The heterogeneity between the participants’ perceptions about recognizing the right to health is highlighted regarding human and social capital, despite living in a country that adopts a health system based on the principles of universality, comprehensiveness, and equality of access. Difficult access can lead citizens to disregard the system’s principles and to defend focalization (their perspective).
Physicians are configured as the primary informants of the administrative route to the participants of this study. Lack of knowledge of this route as an alternative to obtaining medicines is a significant barrier that, when overcome, makes the claimants active agents in disseminating information to health professionals and the community in general.

Barriers related to the provision of health services
Barriers to access medicines related to the provision of health services represent one of the levels on the supply side. Regarding the medicines themselves, the participants pointed out irregular availability, geographic inaccessibility, and low quality of generic medicines (Table 2).
The irregular availability of medicines was perceived in different care points between the two analyzed groups, predominantly referring to medicines from the primary health units by the Public-G participants and to medicines granted administratively by the Private-G participants. The high number of medicines present on the essential medicines lists administratively demanded in this study [Private-G: 18 (72.0%); Public-G: 17 (47.2%)] corroborates this perceived availability.
In addition to medications, barriers related to the resources needed to provide the healthcare service were also pointed out, portraying the interdependence between them so that the quality of the service provided is achieved. These perceptions included poor management of health financing, the precarious physical infrastructure of the health units, the lack of quality and quantity of professionals to meet the demand, and communication with health professionals. In addition, the participants pointed out the team’s lack of knowledge and interest in guiding users about access to medication. Thus, failures related to information were unanimous among the analyzed groups, comprising both the absence and errors in the content about the administrative route and other services.
By perceiving access to medicines as a measure of the quality of health service provision, the participants\' itinerary to make this access effective was considered complex and time-consuming and an experience that hurt their dignity principles.

Barriers related to the health sector
Continuing on the supply side, the barriers to access medicines related to the health sector included those associated with the governance of both pharmaceutical care and the health sector in general (Table 3).
The main barrier related to the governance of pharmaceutical care perceived by the participants was the requirement for prescriptions originating in the public sector to guarantee access to medication. This finding demonstrates a lack of coherence and clarification to citizens of the specific regulations for the different access routes to medicines since the origin of the prescription used to open the administrative process was adopted for forming the groups analyzed in this study. However, it is noteworthy that although most users of this study had opened administrative proceedings with prescriptions originating in the public sector, many of these demands initially emerged in the private sector and were later formalized in SUS prescriptions to meet the sector’s requirement.
Another inconsistency perceived by the participants was the requirement to adopt the common Brazilian name in the prescription presented for opening the administrative process, as this rule did not apply to all cases.
A need to improve planning to ensure availability on the date scheduled for supply was perceived for the effectiveness of access to the medication granted through the administrative route. In addition, it was observed that many claimants also use essential medicines provided in primary health units. Thus, a need for all of them to be provided in a single location and a decentralized manner was addressed to rationalize access to medicines, reducing the displacement of users.
The barrier with the most significant impact regarding the governance of the health sector on access to medicines was the difficulty in getting a medical appointment through the SUS promptly, especially in a specialized one. Barriers related to the impossibility of the user to choose the health unit and professional to provide care were also perceived, the precarious management of the resources necessary for the provision of health services and the need for health financing which meets the demand of the increasing number of medicines through the administrative route. In addition, the low quality of medical care in the SUS, the lack of standardization of services provided, and interventions after formal complaints from users about the quality of service were pointed out.
Thus, participants reported using the public and private health sectors according to their convenience and financial conditions in an attempt to circumvent these barriers. In this public-private mix, the participants preferred to carry out medical consultations in the private sector and obtain medicines from the public.

Barriers that are above the health sector
Barriers to access medicines above the health sector were perceived in this study only in the national context, considering the health market forces and the transparency of actions.
Participants addressed the possibility of the SUS establishing partnerships to use private sector resources to achieve public health goals about health market forces. In this context, health education services carried out in drugstores and medication supply via the “Aqui Tem Farmácia Popular” Program were exemplified. Despite the perception of the benefits of this partnership, the participants recognize failures in the provision of services and distrust the transparency of private sector actions. Another concern was about the quality of generic drugs predominantly being acquired due to their more affordable price.
This study also pointed out a perception that the State attributes low importance to the health sector when applying public resources, failing to meet the real health needs of citizens. Despite this, the importance of the SUS principles was recognized versus the commercial interests of the private sector, which fails to value the needs of individuals to the detriment of the payment power of each individual.
Barriers related to the transparency of actions were perceived as the irrationality of administrative procedures and corruption, demonstrating that the participants know how they are impeding their rights. In this context, the participants pointed out clear signs that there are clientelistic relationships of patronage and deception in the regular care flow, favoring some and delaying the rights of others. More than that, health is an excellent "electoral cable" for professional politicians who take advantage of the precariousness of life, health, and the system\'s deficiencies to perpetuate themselves in power.

DISCUSSION
The present study demonstrated that although ensuring safe and rational access to medicines is directly related to the actions and services of pharmaceutical care, it should be treated as a challenge to be overcome by the health system and included in the agenda of different areas of the SUS. These should, in turn, promote discussion and agreements with the interfacing areas.
Considering that the health concept is related to the absence of disease, access to medication by itself is also incapable of guaranteeing health to the population. However, given its complexity, it became an indicator of the quality and effectiveness of the health system. The United Nations recognizes it as one of the five indicators of progress in guaranteeing the right to health (20). Thus, the present study showed in a novel way that although the therapeutic itinerary and the barriers to accessing medicines through the administrative route have their particularities, they have very similar characteristics to those already reported in studies on the judicial way (10), of high-cost medications (21) and healthcare networks (22).
In the context of social policies, the direct relationship between barriers to accessing medicines and physical, natural, human, and social capital observed in this study reflects the commitment to the development of Brazilian citizenship. This is because access to medicines, as part of the right to health, is associated with other social rights: education, food, work, housing, leisure, security, social security, maternity and childhood protection, and care provided to the destitute (23). The historical failures in delivering these goods and services by the State have made the citizen assume the provision of their own needs. This scenario justifies the cost of medicines being the primary motivator of demands through the administrative route, evidencing the ingrained position in society of using the State as a last resort, failing to seek their rights as a praxis of Brazilian citizenship.
The legitimate desire to obtain quality medicine, available close to home, in an environment with an attractive design and empathetic employees, generates an expectation of experience with the service. When perceiving the barriers related to the provision of health services, the citizen tends to exclusively use the essential services to activate the administrative route, especially for those with private health insurance. As a result, the patient experience in the SUS is superficial, taking away the opportunity for the citizen to create a link with the services, recognize the importance of this system for society, and claim the integrality of their rights.
Private health insurance coverage and the financial system proved to be an alternative for users to overcome barriers related to the health sector, streamlining prescriptions to maintain a regular supply of medicines in the public sector. This type of arrangement distorts the SUS when used in a complementary way to private services, infringing the principle of comprehensive care and introducing ethical and equity implications. By privileging the private sector user through a double entrance to the system, often cutting a waiting list to which exclusive SUS users are submitted, this public-private mix intensifies inequalities in access to medicines. The use of the SUS in a complementary way to the private sector was addressed by Vargas-Pelaez (2019) (24) by judicial claims in Brazil and Argentina. In Brazil, Chagas et al. (2019) (5) observed that the public-private mix is more common among judicial than administrative claims. In this same study, the authors clarify that opening administrative proceedings with a prescription from the SUS is a requirement that does not prevent the demand from having been initially generated in the private sector, as observed in this study.
The perception of the barriers above the health sector was a differential of the present study, demonstrating the existence of a fragile health system permeated by historical, structural, and endemic problems in a developing country. This situation contributes to the maintenance of a public sector which suffers from a distorted and negative image, discrediting the SUS and what is public in Brazil. In a study to identify why the middle class refuses to use the public services of primary healthcare, Reigada and Romano (2018) (25) pointed out the stigma of the population associated with the use of SUS and the lack of appropriation of it as a right. This perception was also identified in this study, despite the participants’ acknowledgment that the public sector is the only alternative for access to healthcare for most citizens. Therefore, it is paradoxically defended and attacked, although the importance of the SUS for its users is evident in all the statements.
In this context, it is clear that the administrative route is used to meet the needs not met by other means and not by claiming the right to health, as already shown for the judicial way by Leite et al. (2010) (10). It must be considered that the administrative route can be more empowering than the judicial one since users assume a more active role in this trajectory, which is the responsibility of lawyers and prosecutors in the judicial route (10). However, this situation is not effective enough for citizens to use and demand comprehensive quality care, abstaining from this right and perpetuating the financing and rise of the private health sector in Brazil.
The mismatch between what is expected from the SUS and how citizens use the system was evidenced in the criticisms and judgments of politicians and public administrators as corrupt, while scams are narrated to the recommended flows with the aim of personal favoritism.
The perception of a bloated, inefficient and bureaucratic health system pointed out in this study fosters proposals for the privatization of public health services, proposing easier access based on reduced bureaucracy in the system. This is the same justification used in the 1990s to subsidize the creation of social organizations, private companies supposedly capable of managing State financing more efficiently (26). However, this program has been responsible for the deregulation of health protocols and democratic processes essential to maintaining public policies, removing the role of the State in inspection, and guaranteeing its safety. Evidence (27-30) demonstrates that health publicity is a process of disguised privatization and questions the non-profit nature of these organizations, the efficiency in applying public resources, and the promotion of SUS principles and guidelines.
The interdependence between the different health system levels was demonstrated in this study using what is called system software (18). The empowerment of participants at the individual and community level regarding administrative procedures and their social role in disseminating information to the community can be highlighted. At the health service provision level, it is worth mentioning the importance of information about the different access routes to medicines and the clarity of the rules to avoid rework and delays in the administrative process. At the level of the health sector, it is evident that the requirement of a prescription every 90 days for a prescription originating in the SUS ignores the inability of the public sector to meet the demands for medical appointments, especially specialized ones, as already demonstrated by Rover et al. (2016) (21). In the national context above the health sector, the need to comply with administrative procedures and cases of corruption generates a negative image of the public sector, reduces the efficiency of the SUS, and marginalizes the most vulnerable groups of the population.
The legitimacy of flaws in the system’s software can be seen with the increase in the number of medical professionals in primary healthcare (31) and the flexibility in choosing the professional who provides care in primary healthcare (32). However, there are still many ways to go: the difficulties in using health services among the most vulnerable segments of the population (33); low prioritization of budget and supply logistics to avoid shortages of essential medicines (34); the lack of specialized medical consultations (35); and the expansion of family and community medicine (36).
The health team’s routine approach to patients is essential to break their barriers to access medicines and integrate the different health system levels, comprising at a minimum: the feasibility of using more accessible (and occasionally less efficient) therapeutic alternatives; the availability to pay for prescribed drugs with their resources (considering the commitment of family income and not just the cost of the drug); and the knowledge and interest in activating alternative ways of accessing medicines, such as administrative. The inefficiency of this dialogue, especially on the part of the physician, harms the patient’s health condition since access to medication is not immediate even if the administrative route is used.
The prospects for overcoming barriers to access to medicines in Brazil are becoming more and more intangible with the freezing of the federal budget for 20 years. The tendency is to overload the system due to the national situation of scarcity, intensifying the barriers to accessing health services (37, 38) and increasing the demand for medicines through the judicial (39) and administrative channels, as this is an alternative. Thus, the commitment of collective needs will be devastating for these individual demands to be fulfilled, putting the sustainability of the Brazilian public health policy to the test.
Therefore, it is concluded that the plaintiffs perceive the administrative route as a mechanism for the citizen to access medicines that considerably compromise the family income and are unavailable in public health services. However, this route is incapable of breaking through systemic barriers to access medicines and promotes meeting the demands of a minority who often uses the public sector in a complementary way to the private sector as a mere supplier of medications. Thus, given the current Brazilian scenario with the discrediting of the SUS and the overvaluation of the private sector, the new fiscal regime, and the freeze on health financing, the administrative route intensifies the inequities in health access in Brazil.

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