Brazil Team, São Paulo & Santos

AIDS Data
1) In September 2003 Brazil had 277,141 known cases of AIDS since the beginning of the epidemic in 1980
2) General incidence is 15/100.000 inhabitants
3) Incidence among women is stable, with a slight trend to decline (11/100.000 women). The exception is women aged 13 and 19 years old, among whom incidence rates are increasing.
4) 21% of HIV positive males 46,5% of positive female are aged 13 to 19
5) Sexual transmission is the most prevalent mode of infection, both between men (58% of the cases) and women (86,7%)
6) Though declining since the 90’s, the incidence rate in São Paulo State in 2002 was the 2nd highest in Brazil (20/100.00)

Source: Ministry of Health December 2003
In Brazil, the concept of a multidisciplinary AIDS Care Team was defined by experts from diverse fields of knowledge who worked together to build a shared effort for enhancing care. The Brazilian Team includes experts in the fields of health programming, epidemiology, infectious diseases, pediatrics, psychology, and the social sciences, with collaborations in the areas of philosophy/epistemology, law sciences and human rights. Several of the members of the Team are also professors at the University of São Paulo schools of Medicine and Public Health. One Team member works at a Public Hospital and another is a member of the São Paulo State STD/AIDS Program, and AIDS Care Team’s psychologists are affiliated with the University’s Social Psychology department, the São Paulo State STD/AIDS AIDS Program and the Santos City STD/AIDS Program. Several members are also affiliated with AIDS service and advocacy NGOs. In this way, universities, state and municipal health programs, non-governmental organizations (NGOs) and PLWHA groups all play an important role in shaping the ECI comprehensive approach to health needs and disease management in Brazil.

Phase I - Situation Analysis
The initial goal of the Brazilian AIDS Care Team’s activities was to develop responses from health services that addressed the specific needs of women living with HIV/AIDS. An epidemiological analysis conducted by the Team in 1998 showed that the São Paulo and Santos AIDS epidemics were growing faster among women than among men, and that mortality rates decreased more slowly among women, despite the universal availability of antiretrovirals in Brazil. In addition, mother-to-child transmission of HIV was higher than expected. Based on these results, practical experience, and empirical evidence of the central role that Brazilian women play in managing illness and health care, the team targeted a strategy to effectively reduce women’s morbidity and mortality. Quality of health care provided to women living with HIV/AIDS became the main focus of ECI Brazil.

The situation analysis also indicated that São Paulo State had well-structured public health services and programs. The AIDS Care Team’s objective was to identify gaps and problems in the ongoing HIV and AIDS initiatives within these existing health systems. Team activities focused on the collection of empirical evidence regarding deficiencies in the care provided to women with HIV in order to help explain the small reductions in mortality and morbidity achieved within existing health programs among women as compared to men. Research objectives were developed in the context of the ECI Framework, integrating clinical care, epidemiology, and human rights perspectives.

The focus on services available to women was intended to identify both social and program-related vulnerabilities in HIV and AIDS care.

Phase II and III – Research and Implementation

Enhanced Care for Women
Photo by Loel Poor, Loel Poor Exhibit
In order to assess the barriers to HIV/AIDS care for women living with HIV/AIDS in the region, the Team designed a cross-sectional study, combining a structured questionnaire with open qualitative questions. Between August 1999 and February 2000, 1068 women living with HIV/AIDS including 116 recent mothers were surveyed in 7 different AIDS Reference Centers in São Paulo, Santos, and São José do Rio Preto. The questionnaires addressed a range of issues including socio-demographics, risk perception for HIV, knowledge and sexual practices, reproductive rights, adherence to treatment, and perceived quality of counseling and care .

The study found that women identified poor access to psychological support, dental, and nutritional care as major problems. In spite of high access to prenatal care, most women were not offered HIV testing while pregnant. Participants demonstrated a low perception of their own risk for contracting HIV, as well as a lack of understanding of HIV testing and counseling, and prevention of mother-to-child transmission. 47% did not receive appropriate contraceptive advice, and a quarter of women were not informed about the risk of HIV transmission during childbirth or breastfeeding, and less than 50% of women had access to structured counseling.

Through this analysis, researchers identified several opportunities for improving voluntary access to HIV counseling and testing for women which existing health services had not yet exploited. The Team’s analysis of the survey results also highlighted important failures in prevention of mother-to-child transmission of HIV in antenatal care and delivery assistance facilities and programs. Specialized infectious disease services required improvements in educating female patients regarding the benefits of follow-up tests, advice and access to contraceptive methods, and a better appreciation of their reproductive rights. The study findings and recommendations were presented to health professionals, activists, government officials and members of the media at an ECI-sponsored forum in São Paulo, and related papers were published in scientific journals.

The ECI team’s study of HIV/AIDS care for women was more than an academic exercise. Several health and social services used ECI findings to enhance their programs, including an improved health care service for women living with HIV/AIDS and their children in Santos. The clinic has moved towards providing for mothers’ and children’s needs within a continuum of care, and to deliver assistance to both in the same space and at similar times using a comprehensive approach.

The Team’s findings also helped to enhance HIV/AIDS care for women in Santos by facilitating better integration of traditional women’s health services with HIV/AIDS care and encouraging special attention to reproductive health. The Team also worked to link these services to social support from government and NGOs, including food supplies, clothing, housing, and juridical support against discrimination at work, in the community, and in health services. In some cases, the Government and NGOs were already addressing areas of ECI activities; in these situations the Brazilian ECI Team’s findings provided extra impetus for improvement, as in the case of initiatives to enhance voluntary HIV testing and counseling during antenatal care in the State of São Paulo. The Team has just finished a first process evaluation study on this service. The results suggest that integrated care programs enhance women’s adherence to care and enhances the quality of assistance.

Securing a Future for Adolescents
In 2002, the work with women brought attention to the gaps in services, care and support for HIV-positive adolescents. While antiretroviral therapy has been free and available to PLWHA in Brazil since 1996, a generation of Brazilian children who were born with HIV and provided with ARV therapy is now entering adolescence. The team decided to focus its efforts on support for this population and their caretakers, including issues of sexuality, discrimination and disclosure. Consultations with policy makers and personnel from national STD/AIDS programs helped to sharpen their approach.

In Brazil, the ECI AIDS Care Team recently completed rigorous qualitative research to determine the care and support needs of adolescents living with HIV/AIDS. Their data and recommendations are being used by state and municipal government officials to support campaigns for increased health services.

9 Recommendations for Improving Health Services for Adolescents
- Increase adolescents’ and caregivers’ awareness of the rights of young people
- Increase local dialogue concerning stigma and discrimination
- Provide adolescents with current, clear and accurate information
- Incorporate disclosure into the continuum of care
- Define the process of disclosure according to an individual’s context
- Include close friends and family in the disclosure process
- Emphasize team and caregiver support for disclosure decisions
- Increase health services targeted at the needs of adolescents
- Promote multisectoral collaboration to respond to adolescents’ needs for social and other forms of support.
With the objective of developing a comprehensive health care proposal, the Team designed a study protocol to identify and understand the psychosocial needs of adolescents living with HIV/AIDS. The qualitative study included interviews with adolescents who were already aware of their serostatus through AIDS services in São Paulo and Santos. Participants were selected from 248 potential candidates. Adolescents and their caregivers responded to questions regarding clinical and care needs, as well as questions about their schooling, work, social life, and sexual and reproductive health. Issues such as perceived vulnerability, awareness, effectiveness of counseling, social support, and human rights were also addressed.

Analysis of the qualitative research revealed several areas in which health services could improve their programs for adolescents, even as stigmatization, discrimination and this issues surrounding disclosure emerged as the main areas in which adolescents and their caregivers felt that improved services are needed. For many HIV-infected adolescents, fear of stigmatization or discrimination creates a barrier to seeking care or counseling, and inhibits their ability to interact freely with family and friends. Adolescents and their caregivers often expressed uncertainty and concern about who to disclose to and how to disclose, feelings that often lead them to avoid disclosure altogether. The resulting lack of social support and feelings of isolation made it difficult for many to live a ‘normal’ adolescent life following diagnosis. Too often, the plans for future professions or relationships that occupy the imaginations of most teenagers seemed too improbable to consider.

Based on these findings, the Team has determined that increased attention to the challenges surrounding disclosure to and by adolescents must be a main component of improved health services in São Paolo. Disclosure, though a major turning point in the life of an adolescent, can often be handled poorly both by caregivers and healthcare providers. For example, doctors, counselors and families may postpone disclosing to adolescents their status in order to avoid difficult situations for which they fear the adolescents are not adequately prepared. Similarly, adolescents may postpone their own disclosure to friends, family, or significant others for fear of stigma or rejection. In order to avoid these situations, disclosure should be a process that is defined by multisectoral support structures that promote acceptance and health of HIV-positive adolescents in all steps of the process. With proper care, attention to normal life progression, and proper handling, adolescents can be identified and cared for so that they believe they have a future worth planning for.

Impact of ECI in Brazil
The Team’s ongoing work has created new HIV/AIDS care services for women and adolescents. The State of São Paulo and the cities of São Paulo and Santos have expressed interest in the recommendations provided by ECI Brazil, and the Team’s leader was member of a government task force on mother-to-child transmission prevention in 2002. The empirical evidence and recommendations developed by the ECI team are currently being used by municipal government officials to support campaigns for increased health services in Brazil. In addition, Brazilian NGOs have used ECI’s data and comprehensive approach to obtain funding and support for advocacy and other initiatives. The results of the data analysis relating to women and adolescents could also benefit efforts in other countries, especially those that have established or are pursuing universal access to antiretroviral therapy.

Plans for the Future
In the future, the international network established through the ECI will strengthen the programs built on the Brazil Team’s work. The team plans to develop a monitoring and evaluation tool to ensure that programs to improve care for women and adolescents will continue after the formal ECI project has ended. The ECI Team is currently seeking funding to extend their collaboration and approach to focus on adolescents, AIDS orphans, stigma and discrimination.

The Team’s plans for the future also use the ECI structure to extend beyond Brazil. Initial arrangements have been put in place for a South-South cooperation between the South African and Brazilian ECI teams. The purpose of this collaboration will be to transfer Brazilian expertise on care planning and evaluation as the South Africa Team begins to implement and monitor its program on access to anti-retroviral treatment.