RESEARCH ARTICLES

AIDS and early responses to the epidemic: contributions from health professionals

Isabel Cristina Alves Maliska^I; Maria Itayra Padilha^II; Selma Regina Andrade^III

^I Care Nurse of University Hospital, Federal University of Santa Catarina. PhD in Nursing from the Graduate Nursing Program of the Federal University of Santa Catarina. Member of the History of Knowledge of Nursing and Health Research Group. Florianópolis, Santa Catarina, Brazil. E-mail: isabel.alves07@yahoo.com.br
^II Nurse, Associate Professor at the Nursing Department of the Federal University of Santa Catarina. PhD in Nursing from Anna Nery School of the Federal University of Rio de Janeiro. Leader of the History of Knowledge of Nursing and Health Research Group. Rio de Janeiro, Brazil. E-mail: padilha@ccs.ufsc.br
^III Nurse, Associate Professor, Department of Nursing of the Federal University of Santa Catarina, PhD in Nursing from the Graduate Nursing Program of the Federal University of Santa Catarina, Florianópolis, Santa Catarina, Brazil. E-mail: selma@ccs.ufsc.br

DOI: http://dx.doi.org/10.12957/reuerj.2015.4295

ABSTRACT

This socio-historical, descriptive, qualitative study describes the context in which early action arose in response to the AIDS epidemic in Florianópolis. The study timeframe is from 1986, when the first AIDS case was reported, to 1993, when the Municipal Program on Sexually Transmitted Diseases (STDs)/AIDS was officially launched in the city. The theoretical and methodological frame of reference given by ‘new history’ informed documentary research and thematic oral history. The study subjects were six health professionals engaged in STD/AIDS-related care and/or management activities during the study period. Data were processed using content analysis. The study highlighted the inadequate structure of the health system at the time and personal initiatives by health professionals who understood the emergency nature of the epidemic and began to organize care and preventive measures, despite the sparse resources available at the time.

Keywords: Acquired Immunodeficiency Syndrome, Unified Health System, local health systems, history.

INTRODUCTION

The epidemic of Acquired Immunodeficiency Syndrome, widely recognized by the acronym AIDS, due to its complexity and influence in various aspects of social life, has special contours in each context in which it spreads. In this sense, to grasp the dynamics of the disease, it is necessary to understand the history and development of the epidemic in different contexts¹.

In Brazil, the emergence of AIDS coincided with the face of a serious social, political and economic crisis. The historical moment that AIDS entered the country was also characterized by the progressive introduction of Brazilian democracy and the emergence and reorganization of various social movements ^2,3.

Since the first cases of AIDS in the country, the first policy responses were articulated against the epidemic. For example, an initial mobilization program was established in São Paulo, in 1983. The decentralization of the State apparatus in Brazil was crucial for a relatively early and effective response to combat the epidemic, as the first government responses occurred in the very states affected by the epidemic⁴.

In Santa Catarina, the first AIDS notification occurred in 1984, in Chapeco. Although no cases were notified in 1985, in 1986 nine cases were reported in the state and among these, three cases in the municipality of Florianopolis⁵. Since then, the gradual spread of AIDS cases in some cities of Santa Catarina state began to stand out on the national scene, drawing the attention of health authorities⁶.

In the late 1980s, some actions aimed at controlling AIDS started to be structured, with the implementation of educational campaigns linked in the media, especially television, the beginning of cooperation between federal, state and local agencies in relation to AIDS, as well the implementation of blood control policies in Brazil. From the 1990s, a period of deep recession took place in the country, marked by a neoliberal policy and the deterioration of social services. In this context, the National AIDS Program had its personnel and budget reduced, harming epidemiological surveillance and prevention actions, resulting in a crisis that lasted until the end of 1992. Thus, in 1993, 37 039 cases of AIDS were recorded in the country, the largest number of cases in Latin America, and Brazil was one of the countries with the highest number of cases reported worldwide⁷.

With this brief history, we sought to approach in this study the first phase of the AIDS epidemic in Brazil, prior to the agreement signed with the World Bank in 1993, which went on to encourage much of the policies to combat the epidemic in the country. It is a period marked by the increasing number of cases of the disease with high morbidity and mortality, linked to high prejudice and stigma. From this context, we chose as the focus of this study the city of Florianopolis - Santa Catarina, which had notified the first case of AIDS in 1986, and by the year 1993 had 488 cases of AIDS reported in the city, and primary mode of transmission was the use of injectable drugs (56.3%), followed by heterosexual (22%), homosexual (14.5%), bisexual (6%) and vertical transmission (4.1%)⁸.

Since the first case of AIDS reported in the city, some actions were put in place to contain the epidemic, relying especially with efforts from health professionals and civil society, and also government spheres of the state and county. Thus, this study aimed to describe the context in which the first actions in response to the AIDS epidemic arose in Florianopolis, in order to enhance the contribution of nursing in the construction of policy for epidemic control on the local reality.

THEORETICAL-METHODOLOGICAL REFERENTIAL

This is a socio-historical study, which used the philosophical basis of the new history. The new history is part of a movement opposed to the traditional and positivist history of the nineteenth century. The new history is a problematic, explanatory history, which deals with developments and transformations, which seeks to understand the present through the past and the past through the present⁹. This historical perspective has valued the qualitative analysis and the importance of individual experiences, making room for the study of the present, the politics, the culture, and reincorporating the individual's role in the social process, encouraging the use of oral sources.

The context of the study was the Municipal Health Secretariat of Florianopolis, and the study participants were professionals who worked directly or indirectly in the STD/AIDS Municipal Program and/or its care units.

For data collection, primary and secondary documentary sources were used and oral sources. As for the oral sources, we conducted interviews with the thematic oral history technique. The thematic oral history is a research method that focuses on interviews with people who had participated or witnessed events, and this is a way to approach the object of study¹⁰. We interviewed six health professionals, namely the first three nurses and the first three doctors who exercised care and/or management activities related to STD/AIDS in Florianopolis during the study period. In the statements, participants are identified as N1, N2 and N3 for the nurse category and as D1, D2 and D3 for the doctor category. To process the data, we used content analysis¹¹, in which we classified units of analysis previously selected (keywords), by grouping similarities, constitution of subcategories and reunification of thereof to identify the categories. The analysis of oral reports was also supported by information obtained in primary and secondary documents, with the National Health Policy as the analysis reference, especially of the concepts the universality, comprehensives and decentralization, known as doctrinal and organizational principles of the Unified Health System (SUS). This study was approved by the Ethics Committee on Human Research of the Federal University of Santa Catarina, under No. 592-315996/2010. We observed all the ethical principles of research in all phases of the study.

The historical period occurred from 1986, when the first case of AIDS was reported in Florianopolis, until 1993, when the STD/AIDS Program started to be structured in the city. To process the data, we used content analysis¹¹, reaching two categories: The first cases treated at the Nereus Ramos Hospital (HNR); Structuring the municipal health service for the care of AIDS cases.

RESULTS AND DISCUSSION

The first cases treated at the Nereus Ramos Hospital

The first actions toward AIDS were institutionally focused on HNR, reference hospital in the State of Santa Catarina on infectious diseases, linked to the state health service, located in Florianopolis. The first case of AIDS attended in this institution occurred in 1985, causing great impact:

Actually I do not know if this case appeared in the statistics [in 1985], he was a well-known person here, and he was an influential person in the society, he was admitted to the Charity [Hospital], a pneumonia that would not be solved, and he came to the Nereus and at that time the case was very veiled, and he soon died, and he would be notified by the death criterion and probably was not. (N1)

It was very complicated because each case of AIDS notified was a newspaper headline, it was all hidden. [...] At that time it was very complicated, imagine you caring for an authority with AIDS, or a religious person with AIDS. (D2)

In the presented testimonies, these professionals highlighted issues related to prejudice and stigma to AIDS patient, which directly affected the assistance, since they had to deal with the media pressure, prevent exposure of the individuals and their lives, especially because some patients have notorious position in local society. Since the first case of AIDS in the state this institution began to be structured for assistance, setting apart, in 1985, four beds for isolation and treatment of these patients. These became insufficient due to the demand which started to be referred from across the state¹². In 1987, outpatient care started to be performed in HNR dedicated to AIDS patients, composed at that time by a multidisciplinary team with social worker, nurse, doctor, dentist and psychologist¹³:

We met and created the first clinic and the [...] nurse was the one who would be responsible for the admission, for the pre-consultation, post-consultation and it started to grow and we used to come here every morning, the whole morning [...] people would come here mad. So everyone who was suspicious, who had anxiety, risks, would come here, there was no way, all about HIV [Human Immunodeficiency Virus] was in the Nereus Ramos Hospital, there used to be huge queues. (D3)

The clinic of this hospital has become an important reference for the population that, frightened by the arrival of the epidemic, used to look for this institution for guidance, diagnosis and care of the confirmed cases, which required a better structuring of the service to meet this demand. During the 1990s other services aimed at AIDS were implanted in the HNR, such as the day hospital service, created in 1992 and accredited by the Ministry of Health in 1995 by Ordinance No. 70/95^12,14,15.

At that time, there was great demand of patients with HIV/AIDS and family members, as AIDS had indeed arrived in the city, but the health service was still in the structuring process and the HNR professionals also perceived the need to be technically equipped for the treatment of these cases, because the disease, for its high mortality, required urgent responses. In this sense, despite all the efforts of health professionals who were committed to the epidemic, it was also necessary to involve civil society so that the fight against the epidemic would have more strength and greater social visibility, meeting the needs of people affected by this disease:

At that time, basically, there were two doctors from Nereus Ramos Hospital and I, on the institutional issue. At the same time, some volunteers and we started meetings in 1987, within the Nereus Ramos Hospital, along with Social Workers, Nurses. I remember some people from Nereus Ramos Hospital that were very important in the creation of GAPA [Support Group for AIDS Prevention] and who used to act like me, they worked in an NGO [nongovernmental organization] GAPA, and within the Nereus Ramos Hospital. So it was in 1987 that we created the GAPA. (D1)

That is how it was articulated the first non-governmental organization focused on AIDS in Florianopolis, on August 6, 1987, created on the facilities of Nereus Ramos Hospital, formed by health professionals (doctors, nurses, other nursing professionals, social workers) and volunteers¹⁶. The initiative to create the GAPA, in Florianopolis, was influenced by a movement that spread across the country, whose goal was to support the AIDS patient in face of social rejection to which they were subjected, and require from the health authorities a better care structure to these patients, such as hospital beds and treatments that were available at that time:

There were a lot of people, a lot of trouble and NGOs were being already created worldwide, in the United States, Brazil, in Rio, Sao Paulo, then we decided to create the GAPA [...] to support those people who had nowhere to seek support, because it was very difficult to be HIV positive. [...] It was even paradoxical, because we were in the hospital, but the very NGO that we created was to fight with the hospital itself, to provide better conditions for patients, but that did not depend on us, we did what we could. (D2)

In virtually every country in the world non-governmental organizations devoted to the epidemic were created. The first to be created were dedicated to specific issues of care, support, information and education about the disease, leading to a worldwide movement, which in many ways sought to de-stigmatize AIDS¹⁷.

In addition to the creation of the GAPA, it was created in December 1, 1991, the Azorean Foundation for the Control of AIDS (FACA), the second non-governmental organization focused on AIDS in Florianópolis, which was also born in Nereus Ramos Hospital with the participation of health professionals and volunteers, but with a line of action dedicated to the development of actions for preventing HIV and AIDS, in order to strengthen the political role of men and women in the exercise of citizenship¹⁷.

Structuring the municipal health service for the care of AIDS cases

In the municipal health service of Florianopolis, the first demonstrations about the AIDS epidemic started from personal and specific initiatives, like a doctor who had been following the movement of the epidemic and began to perform preventive work in the media and in schools, seeking to clarify what this disease was about:

In the 80s, there were not dozens of people working and, [...] people who knew something were doing it or what was suitable to be done [...] because in the beginning the objective was to prevent the epidemic to become very strong and have instruments to control the epidemic [...] Then, after a few years it was seen that the disease had actually arrived and that there was need to keep doing preventive work in the media, in schools, using all instruments we had and also begin to practice medicine. (D1)

This professional turned out to be a reference in AIDS in the city, at a time that there was no service or structured program in Florianopolis Health Department facing this epidemic. Until the formation of the STD clinic, in 1989, the activities carried out under the Florianopolis Health Department were specific, aimed at prevention and awareness of the population, since during the 1980s the reports in the media were little enlightening, bringing contradictions and reflecting the disruption caused by the epidemic in its own scientific field¹⁸:

We had to clarify, inform the population and inform realistically, because there was a lot of mystification, much that we had to fight against. [...] In the first year, 1987, I registered: 63 lectures, we called them lectures, but in reality it was information, at the request of municipal and state schools in the city. [...] I remember there was a case of AIDS in a neighborhood, and the community requested a meeting with us and we did the meeting in a school, which did not fit everybody; people were outside and by the windows listening to what we had to say. (D1)

AIDS has been widely recognized for its ability to produce discussions that involved more than pathological aspects, contributing to enlarge the look of many health professionals about the health-disease process. This initial period of the epidemic was determined by a moral panic, which mostly during the 1980s, all attention was directed to individual behavior, both to expand and to control the infection of the Human Immunodeficiency Virus (HIV). In this context, the disease was treated as more contagious than infectious¹⁹.

Regarding the health care activities, the municipal health service at that time was going through a period of restructuring, due to changes in the Brazilian health service occurred in the late 1980, to SUS implementation. In this process, gradually, some health services were no longer state's responsibility to be assumed by the municipality, such as the health units of the well-known Public Health Department:

The State Health Department was the owner and manager of the Public Health Department. It has always been a state institution, there was a lot of services [...] there was also a sexually transmitted disease service [...] So it was an environment where we knew that many prostitutes used to go [...]so there was a venereal diseases service that was a precursor of sexually transmitted diseases. (D3)

The Public Health Department, known as DSP or DASP, was a state structure that offered various health services, and was a reference to all municipalities in the region, then in 1990 it started to be a municipal responsibility. Although this service would historically meet STD cases, it has not an official denomination of STD clinic. This denomination arose from 1989, when a doctor and a nurse were appointed for the exclusive care of this demand, which was significant. People gradually started to look for this service, seeking for guidance diagnosis or treatment for HIV, because since that AIDS is a sexually transmitted disease, it would be natural that the care was added to this service:

So when AIDS cases began to appear, we had to be structured to meet something that we did not even know exactly how it was, it was all very new. So it was a gradual thing, it started to be integrated to the service and the people were learning from infection, with the disease, with cases appearing every day [...] those people who felt more vulnerable were those who most came, homosexuals, drug users, prostitutes. (N2)

Besides all stigmatization suffered by individuals with the syndrome, the lack of perspective of the disease was evident especially at the time to reveal the diagnosis of HIV seropositivity, because the feeling of impotence was inevitable front of awareness of inability to treat the disease, as there was no treatment in the public health system that could restore the immune system of the individual infected by HIV ¹⁸:

By the time I started, when we delivered a positive test for AIDS for someone, we did not have much to offer. We had to deal a lot more with the emotional aspect of people because we did not have what we have today, such a range of medicines, all examinations, monitoring the infection to know the right time to start the drug treatment. (N3)

The 1980s was marked by a high mortality due to AIDS, due to lack of treatment that could control the disease. Zidovudine (AZT) started to be used in the United States in 1987, with good results as blocking viral replication²⁰, being available in Brazil in the public health system from the year 1991²¹. Before AZT, survival was only six months and one could only ensure the treatment of opportunistic diseases, resulting from HIV infection ²². Within this framework, the positive diagnosis for HIV started to be the representation of announced death, unwieldy for both health professionals, as bearer of bad news, and for those who received it, deeply marking the history of the epidemic in its initial period.

Currently, the AIDS epidemic has had profound changes in its epidemiological profile, generating changes in the care given to the different groups affected by the syndrome ^23,24, influenced both by the availability of antiretroviral treatment, as the recognition that vulnerability to this disease is not restricted to only specific groups, but to the general population²⁵. However, we see the need for integrated actions with the public policies in an attempt to obtain greater responsibility and commitment to preventive actions and of control of HIV infection^26,27. In this scenario, the nurse is a professional who has much to contribute, both in their charitable role, as in the design of policies that can respond to the epidemic more effectively.

CONCLUSION

In describing the context in which the first actions in response to the AIDS epidemic arose in Florianopolis we observe that, from the occurrence of the first cases in the city, the structure of care on AIDS was assumed by Nereus Ramos Hospital, which supplied the low capacity of response of the municipality in health services and policies. The political context of that time contributed not only to care for patients with HIV/AIDS, since its institutional space was the locus of the first two non-governmental organizations in the district and the state of Santa Catarina.

The participation of the municipality in actions toward AIDS during the 1980s was marked by the initiative of some health professionals, in a non-systematic way, who bothered to inform the population about the new epidemic, using the information as the main resource. This picture begins to undergo changes since 1990, when the SUS began to be gradually implemented and the health services began to be a municipal responsibility.

Given this initial scenario, we highlight the performance of the first health professionals involved with the AIDS epidemic in Florianopolis, who understood that in addition to adapt and structure the services to shelter the population, they had to develop strategies to deal with very complex issues, which was the chaotic situation caused by the disease, for its stigma and its intimate relationship with death.

It was noticed the relevant work of health professionals, including nurses in particular that, with their entrepreneurial activities, acted in several scenarios in that district, such as in the care of the population, in the structuring of the first services or in the participation of the creation of the first non-governmental organizations, aiming to contribute to the defense of the rights of people living with HIV/AIDS.

Among the limitations of this study are the few historical documents identified in relation to the theme, which indicates that both professionals, as the institutions themselves need greater spirit of preservation of their own history and significant events, risking of falling in oblivion, as the distance of time itself.

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