In Ecuador, there is practically no political will to fight the advancement or impact of HIV/AIDS, as is evidenced by the National AIDS Programme's annual budget of only US$ 5000. Policy-makers continue to believe that AIDS concerns only homosexuals and sex workers. Malaria and dengue fever are the health system's priorities because the number of reported AIDS cases is low. Ecuadorians believe the threat of an HIV epidemic in their country is minimal, because their sexual behaviour is different from people in high HIV-prevalence areas in the Caribbean or southern Africa. In this context, Kimirina Corporation has been mobilising a community response to HIV/AIDS since 1995, by supporting 91 prevention and care projects throughout the country, which are working with people living with HIV/AIDS (PLWHAs), people in prisons, sex workers, men who have sex with men, women, youth, health personnel and the general population.

HIV/AIDS in Ecuador

Up to December 2000, Ecuador reported 3120 cases of HIV/AIDS. According to the Ministry of Health (MOH), the HIV rate increased from 0.42/100,000 inhabitants in 1990, to 2.5/100,000 in 2000. HIV rates among women and adolescents increased considerably in the last years. In 2000, more than 97% of the reported HIV infections had been transmitted sexually, of which more than 67% through heterosexual relations. Men represented 65% of the new infections in 2000, although the male-female ratio has decreased from 4:1 between 1984 and 1998, to 2:1 in 2000. Geographically, the epidemic is centred in Guayas Province, with 74% of the reported HIV infections in 2000.

Misinformation on AIDS is widespread. For instance, more than 40% of women 15-49 years of age believe that mosquito bites can transmit HIV. Also, virtually no one uses condoms for HIV prevention, according to a 1999 Demographic and Maternal and Child Health Survey. Meanwhile, national prevention campaigns are few and far between.
Although these figures are alarming, the MOH's surveillance system is weak and provides unreliable data, also due to underreporting. Some movement took place following the UN General Assembly Special Session on HIV/AIDS in June 2001, when the MOH adopted official guidelines for HIV/AIDS work and declared the epidemic a priority.

Barriers to an effective response

The attitudes of NGOs and community-based organisations (CBOs) toward the HIV/AIDS epidemic, including fear, ignorance and denial, are real barriers toward mobilising them to work in HIV/AIDS. Some NGOs and CBOs believe that HIV is not a problem for the groups they work with and that there is no need to get involved. Others believe those with the virus are responsible for their infection, so they are concerned only with prevention. A few believe that investing in care and support for PLWHAs is a waste, because they will die anyway.

Health professionals have been a particularly difficult group to work with, because they tend to see HIV/AIDS as a purely medical/health problem, and do not see all the implications in the lives of individuals and in communities. They continue to refuse services to PLWHAs and although they emphasise Universal Precautions (UP) as infection control procedures, they do not implement them properly.

Some NGOs are afraid that if they start providing HIV/AIDS care services, it will harm their institutional image and they will thus lose or chase away the people they now serve. They ignore the fact that by including HIV/AIDS services, they will improve the quality and comprehensiveness of their services, which may even increase their demand.

Mobilising organisations to start HIV prevention activities is much easier, even when NGOs initially only see HIV/AIDS as a theoretical threat. Most organisations new to HIV want to work with young people to protect the "innocent", or with sex workers because they hold them responsible for the spread of HIV. This attitude is a problem because youth and sex workers are not the only groups that need to be targeted. Also, many organisations that start working with new populations are often ineffective because they do not understand the context and do not have the experience to create appropriate methodology.

PLWHAs are unwilling to disclose their HIV status because of the associated stigma and discrimination. Nation-wide, only three people have gone public with their status. Consequently, PLWHAs have difficulty organising themselves. Those who are organised, focus on support to other PLWHAs or responding to specific crises; they are not a movement in civil society.

Supporting organisations to work in HIV/AIDS

Kimirina focuses on strengthening local NGOs' and CBOs' institutional capacity to work on sexuality and HIV/AIDS prevention and care. In addition, Kimirina advocates for a better quality of life for PLWHAs. Before initiating their work, these organisations make participatory community assessments regarding HIV/AIDS, which are used to set up prevention and care projects that respond to the interests and needs of the communities they serve. Throughout these projects, regular mutual feedback between Kimirina and the NGOs/CBOs allows them to adapt their strategies to better respond to needs.

For example, Grupo de Mujeres Despertando, is a CBO that started as a women's group working in women's health. When they became involved in HIV prevention, they started working with women in Guayaquil, a city with Ecuador's highest HIV rate. Although the women were aware of their risk of contracting HIV and knew how to protect themselves, their husbands or partners usually made the sex-related decisions. Recognising this, they then trained a group of men as HIV prevention trainers, who replicated the workshops with other men. As a result, couples reported better communication on sexual issues, including HIV prevention options.

COMEDECU is an NGO working in youth education. Once they got involved with HIV/AIDS, they set up a prevention project for inter-provincial bus drivers, using the same methodology for adult male bus drivers as they used for young people. Problems arose because the NGO failed to develop a participatory relationship with the bus drivers, resulting in a little meaningful interaction. Some bus drivers only received basic HIV/AIDS information, but they did not change their attitudes or behaviour. These mistakes showed the importance of a participatory process at the community level.

The way forward

The HIV/AIDS epidemic in Ecuador is silently growing, but until reliable epidemiological data is available, levels of infection will be difficult to predict. HIV/AIDS has started to reach women and young people in larger proportions than before and health officials are becoming concerned that the epidemic might be starting to reach the general population, no longer limited to certain geographical areas.

NGOs need to influence public policy and public opinion. New advocacy activities are being planned and those results will be seen in the next few years. The adoption of official MOH guidelines for HIV/AIDS is a positive sign that might result in more collaborative efforts between civil society organisations and the state. In spite of the many difficulties NGOs are facing, they are also doing solid prevention and care work with very positive results at the community level. However, more resources need to be mobilised at the international level: while funding is only one of the limitations in HIV/AIDS work, it is a determinant one.