Before many government health agencies and mainstream research institutions recognized the growing threat of HIV/AIDS to women, grassroots nongovernmental organizations (NGOs) began to create women-oriented prevention, education and care projects, and to lobby for new national health and treatment policies supporting women.
In Brazil, GAPA (Grupo de Apoio á Prevençáo á AIDS, or Support Group for the Prevention of AIDS), has long been at the forefront of grassroots HIV prevention and care efforts for women. A volunteer-based organization, GAPA works in both rural and urban settings, reaching across the social, political and racial spectrum.
Telma Regina Cavalheiro, who has worked with GAPA in São Paulo since 1991, has unusually broad skills and experience, but defines herself first and foremost as an activist. She received a degree in social medicine and public health from the School of Medical Sciences of Santa Catarina in southern Brazil, and has taught at the Catholic University of Campinas in São Paulo.
Before she came to GAPA, Cavalheiro worked as a health educator in England at the London Lighthouse and as a safe sex coordinator for the Brazilian NGO, Pela Vidda (For Life).
Cavalheiro now serves as coordinator for GAPA's SOS Women and AIDS Project.
What is GAPA's mission?
GAPA was the first nongovernmental organization (NGO) in Brazil to address HIV and AIDS. The organization was founded ten years ago by a group of citizens who saw the growing need to promote HIV prevention measures and lobby for adequate health services for those living with HIV. There are now 18 affiliate offices throughout Brazil.
How is GAPA accomplishing these goals?
Today GAPA is primarily a political organization lobbying and networking for effective public health policies related to HIV/AIDS in Brazil and improved medical, psychological and social services for people with AIDS, as well as combatting discrimination against people living with HIV and AIDS. GAPA also provides HIV counseling, peer and outreach education about HIV/AIDS, and social, material and legal support to people living with HIV/AIDS and their families. It has one of the most complete libraries in the country, with books, magazines, educational materials and videos, and it disseminates information on the epidemic to the general public.
When did GAPA begin its work with women?
When I joined GAPA in 1991, it was to help develop a project to address the increasing incidence of HIV/AIDS in women in São Paulo. At that time few NGOs working with AIDS programming were aware of the specific needs of women, so this project was one of the first to target women. With a multidisciplinary team of women working as volunteers, the SOS Women and AIDS Project (SOS) promotes STD/AIDS education for women of reproductive age and offers support in the areas of legal and social assistance, counseling and medical referrals for HIV-positive women.
What issues does the AIDS epidemic raise for women globally?
AIDS has not really raised any new issues for women but instead aggravated old ones. We continue to address women's dependence on men, their lack of access to power and resources, and their vulnerability to poverty and discrimination. Globally, there is a lack of research on women and HIV/AIDS, and women tend to be excluded from vaccine and antiretroviral protocols, so medical interventions for women have yet to catch up with treatment for men.
What do you see as particularly pressing HIV/AIDS issues for women in Brazil?
The needs of HIV-positive women in Brazil vary enormously, depending on social, economic, religious and cultural factors. Urban poverty and other conditions of urban life help determine the course of the epidemic in Brazil's cities. In São Paulo, the ratio of male to female HIV infection has risen from 42:1 in 1985 to 2:1 in 1995, and AIDS is now the main cause of death among women in the child-bearing years from ages 15 to 45. For our women clients, HIV prevention is the issue our project deals with most frequently, and pregnancy and parenting decisions for HIV-positive women are also at the center of attention. Other issues are access to health care and protection from domestic violence. Unfortunately, national health care policies are not responsive to the complexities of women's lives; they still tend to characterize HIV-positive women primarily as vectors of pediatric transmission, sex workers or drug users.
Is integration of AIDS prevention into family planning and maternal and child health programs a priority?
Some maternal and child health programs deliver HIV/AIDS education and counseling and perform prenatal HIV tests, and some offer educational activities targeting HIV-positive women. But most family planning agencies in Brazil don't seem to have HIV prevention on their agendas, although women complain about having to go to different places for services and about the endless wait at each facility. Health professionals are aware that these services should be integrated, but before family and HIV prevention are integrated, a lot must be changed.
How do contraceptive methods in Brazil affect condom promotion and the epidemic?
Sterilization and the IUD are the methods that doctors and family planning services tend to offer. Poor women are sometimes sterilized without their consent. The problem for a sterilized woman is how to justify or negotiate condom use with her partner without jeopardizing her relationship, because it forces discussion of the sensitive issues of trust and fidelity. Condoms are neither affordable for nor acceptable to most Brazilian men. A woman who insists on condom use is considered "unclean" or promiscuous. Sexism in Brazil makes negotiation of condom use and HIV prevention more difficult.
What's being done about STD infection?
The incidence of STDs--syphilis, genital warts and vaginosis--seems to be increasing for Brazilian women. Given the links between STDs and HIV transmission, it's likely that this trend contributes to the increase in the levels of HIV infection. Unfortunately, STD/AIDS services reflect the same shortages of resources confronting all other health services in Brazil. They are not fully staffed, fully equipped or easily accessible. GAPA can only offer counseling on how to avoid becoming infected and referral to public sector STD services.
What behavior change messages are Brazilian health agencies promoting for HIV prevention?
Until 1992, few of the government's educational initiatives reached their intended audience effectively, and those that did used a "terrorist" approach to HIV prevention education. For example, the message, "If you are not careful, AIDS will catch you!" created panic rather than providing meaningful information. Fortunately, these messages have improved since the Ministry of Health and other agencies began to work closely with NGOs and other community organizations.
How do you compare the national response to the epidemic in Brazil to the response in other countries?
Historically, the response in Brazil progressed pretty much the same way as in England or the United States. At first the epidemic predominantly affected gay men, commercial sex workers and drug users, and their specialized support groups were the first to respond. As HIV infection spread into the general population, government and health professionals were forced to formulate broader health policies. However, in Brazil both government and civil responses were slower and less effective than in the U.K. or U.S. Now, NGOs and government are cooperating to provide comprehensive HIV/AIDS prevention information to the public and services to those living with HIV/AIDS.
What other services does SOS offer?
SOS started a call-in help line in September 1993. The help line was developed to provide women with a means of access to all kinds of information about HIV/AIDS.
Who calls the help line and what are the most frequently asked questions?
Sixty-five percent of our callers are women. More than half the questions are about modes of transmission and symptoms of HIV/AIDS. Thirty-four percent of callers are looking for information about HIV and STD prevention services available in the community. But many callers who ask simple, straightforward questions also have more complex and frightening issues to talk about. Our phones are staffed by five advanced psychology students, who are supervised by a professor and a psychologist equipped to deal with the deeper psychological needs of our callers.
What are some of these deeper needs?
How to disclose one's HIV status and how to introduce safer sex into an existing relationship without putting that relationship at risk are very sensitive topics. Some callers express real panic when they discuss their fears about the possibility that they're infected.
What educational services does SOS offer?
We sponsor two courses. The HIV/AIDS awareness-raising course called "AIDS in the Community" gives general information about HIV and AIDS and sensitizes participants to AIDS issues. The other gives women detailed information about HIV/AIDS and trains them to be multipliers or peer educators in prevention. We also publish educational materials to support these courses. The MacArthur Foundation funds our basic operations, the training courses and the help line, but most of our educational materials development is supported by the Ministry of Health and, more recently, by the Samuel and Levi Strauss Foundation.
Who are the primary target audiences for your publications?
The booklets, designed primarily as reference materials for our training course, are often handed out by participants in their communities as part of the multiplier effort. Our magazine, MAIS [the Portuguese acronym for Women, AIDS, Information and Sexuality], encourages communication between the women's movement and NGOs involved in AIDS programming. We reach approximately 5,000 people with each edition. It provides both a channel for debating women's health issues and a source of updated information on the epidemic.
Does GAPA offer any care services?
Much of the care giving in Brazil is done within the public sector. But in Brazil, as in many other developing countries, care services are often limited by scarce resources and very high demand. GAPA offers legal, psychological and social assistance, and distributes food and clothes to people living with HIV/AIDS and their families. The level of care services offered at any of the GAPA offices varies according to level of need and local economic, social, religious and cultural factors.
Do any of your services target commercial sex workers?
Commercial sex workers (CSWs) in Brazil are very well organized, and projects have been set up to address their issues exclusively. But in Brazil many women engaged in prostitution do not identify themselves as CSWs. They sell their bodies to subsidize their incomes. Many of them are desperately hungry and need money for food and sometimes drugs. These women normally charge less and are easily convinced to have sex without a condom. SOS has more contact with this population.
Does your project distribute condoms, or do you refer your clients to any of the social marketing condom distribution points?
GAPA regularly distributes condoms to HIV-positive people, sex workers and prisoners. We distribute condoms to the general public only during Carnival and on December 1, World AIDS Day. Condoms are easily found in pharmacies and supermarkets, but they're expensive: 80 cents each. We are not really involved with any of the condom social marketing programs. Instead, we refer people to our workshops, where all their concerns about sexuality and protection can be discussed, and then let them make up their own minds about whether condoms can fulfill their needs. In my opinion, it's not enough to simply promote and distribute condoms. Because of my background in safe sex education, the framework in which I prefer to work is to discuss sexuality, not just the sex act.
Have the media in Brazil helped raise public awareness and knowledge of the epidemic?
Newspapers have been talking about the epidemic since 1983, but Brazilian television networks do not give it a lot of coverage. This may explain why, while public awareness is growing, it's still lower than it should be. Given that Brazil has the second highest number of HIV infections in the world, I would have expected the media to give the epidemic more coverage than they have. But we also should remember that awareness of HIV that's achieved through the media and other passive means is not the same as acceptance of the need to change sexual practices. We need more effective interventions and community participation if we want to see a change in unsafe sexual behavior.
What do you see as the biggest challenge in the SOS Project's effort to target women with HIV prevention education?
It is extremely difficult to reach married and monogamous women because they seldom perceive themselves as being at risk. Even when they do come to us or call, it is difficult to say directly to a woman complaining about vaginal discharge that her husband might have other women or might be sleeping with men and is putting her at risk of contracting HIV. We tend to address it indirectly and give her support and suggest ways that she could deal with him.
What does the future hold for the SOS Project?
I hope the MacArthur Foundation will continue to finance the project's infrastructure and the help line. Funding for MAIS is guaranteed until April 1996. But even without funding, SOS will continue its lobbying and networking among HIV/AIDS NGOs and women's organizations. SOS has a vital role to play in providing São Paulo's women with HIV/AIDS prevention information and in bringing women and AIDS to the forefront of the national agenda.
