'Positive' Networks Open Doors in Latin America

By Gustavo González*

SANTIAGO, Dec 1 (IPS) - Discrimination continues to plague those who are HIV-positive in Latin America, but women and men with the human immunodeficiency virus (HIV) are opening social spaces for themselves by creating their own organisations in which solidarity, activism and education all play a role.

AIDS, the result of HIV infection, was practically synonymous with death until the mid-1990s, when antiretroviral treatment became available to fight the advance of HIV in the human body, allowing those with the virus to prolong and improve the quality of their lives.

But it is not just a matter of medical survival. The social insertion of people with HIV or AIDS (acquired immunodeficiency syndrome) is also important, and entails fighting the prejudices that in many Latin American countries translate into discrimination in employment, education and even health services, according to the testimonies IPS gathered.

"It isn't the virus that is killing me. What is killing me is the society around me," says Verónica, a 25-year-old mother who is HIV-positive and member of Vivo Positivo (Living Positive), a network of 36 organisations for people with HIV/AIDS in Chile.

"It is just liking tossing a grenade. Everyone takes off and I'm left alone," she said, describing the reactions of people once they find out that she has been infected with the virus.

On World AIDS Day, Dec 1, there are approximately 9,500 people with HIV/AIDS in Chile, according to figures from the national public health system. But activists estimate the total between 30,000 and 50,000 people in a population just over 15 million.

Vivo Positivo, among Chile's leading groups acting on behalf of the rights of those affected by the pandemic, has 1,912 members, 75 percent of whom are infected with HIV. The rest are their family members and friends, as well as activists.

The organisation is part of the Latin American Network of Persons Living with HIV/AIDS, a movement that has been gathering force throughout the region.

In December 1990, the first Latin American meeting of people with HIV/AIDS was held in Bogotá, organised by the Colombian League for the Fight against AIDS and the Latin American Studies department of the University of California (United States), with backing from the Pan-American Health Organisation (PAHO).

The management of the hotel where the conference was to take place refused to provide its services once it found that HIV-positive individuals would be staying there. It took heated negotiations to win the hotel's agreement to host the event.

Thirty people with HIV took part in that first meeting. All have died since, but several of them, like Mexican journalist Francisco Galván, planted the seeds for the future movements for HIV/AIDS rights.

Miriam Cossio, resident of a small Colombian town, was notified at age 19, in 1996, that she was HIV-positive. Infected by her husband, she shortly became a widow with a young son.

In 1999, on the advice of a doctor, she travelled to Bogotá to participate in a meeting of women convened by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Colombian League for the Fight against AIDS.

"Arriving at the meeting was like opening an enormous door," Cossio told IPS. In listening to other women tell their stories, she realised that she was not the only, the first nor the last woman to be infected with HIV.

"I made the first step towards knowing myself and taking out all the pain I felt inside," she added.

Today Cossio is studying psychology and is one of the seven leaders of Proyecto Girasol (Sunflower Project), part of the National Network of Positive Women, one of Colombia's main HIV/AIDS organisations, alongside the aforementioned League, Fundamor (which works with children) and the Eudes Foundation.

As of June of this year, 27,965 cases of HIV had been reported in Colombia since 1983, with a greater than five-to-one ratio of infection of men and women, respectively. But experts in epidemiology estimate the true total of infected individuals at 173,000 in this country of 43 million people.

In Colombia, as in neighbouring Venezuela and most other Latin American countries, employment discrimination related to HIV/AIDS is rampant.

Alberto Nieves, director of the Venezuelan organisation Citizen Action against AIDS (ACCSI), says "the 1999 Constitution prohibits medical examinations of applicants without consent or for discriminatory purposes, like those performed by companies in order to avoid hiring HIV infected people. But many employers and insurance companies continue to carry out these tests."

ACCSI is one of the 17 non-governmental organisations based in Caracas that form part of the Venezuelan Network of Positive People. Fourteen other groups from the rest of the country round out the network.

Venezuela's Ministry of Health reports that 10,325 people are registered as having developed full-blown AIDS, though specialists estimate that some 60,000 have AIDS and another 250,000 -- out of a national population of 24 million -- are infected with the virus.

In Argentina, meanwhile, the number of groups working with people with HIV/AIDS has mushroomed.

Some of the Argentine organisations were founded by sexual minorities, such as homosexual men, others by attorneys who defend the rights of those infected, others focus on the reproductive rights of HIV-positive women, and there are groups dedicated to disseminating self-help techniques to people affected by the disease.

Among the 37 million inhabitants of Argentina, some 140,000 people are HIV-positive, while those ill with AIDS number 25,500, according to Ministry of Health figures.

Alejandro Freire, head of Buenos Aires AIDS, told IPS that the groups suffering most discrimination as a result of their HIV/AIDS status are young people in general, poor women, gays and transvestites.

Transvestites, for example, are kicked out of the health centres, said Freire. And while gay men make up 40 percent of all cases, the percentage of official assistance they receive is far below that.

And the hospitals are refusing to give young people free condoms "because they don't have permission from their parents," he added.

"Discrimination is basically ignorance. It is due to lack of information. HIV tests are ordered as part of pre-surgery tests, even when it makes no sense to do so because the doctors should be as careful when working with any patient as they are with those they know to have AIDS," said the Argentine activist.

One exception within the panorama of HIV/AIDS discrimination in Latin America is Cuba, a country of 11.2 million inhabitants with a 0.03 percent HIV infection rate, the lowest of the region, according to UNAIDS.

People with HIV in Cuba receive special food from the state and are guaranteed free medical attention and free antiretroviral treatment.

But the history of this socialist-run island includes repressive policies against HIV-positive individuals. Until the early 1990s, all such people were forced to live in isolation. In reaction to the repression, the AIDS Prevention Group was founded at the Santiago de las Vegas hospice, near Havana.

The group's members took to the streets carrying signs bearing their names and the words "I am HIV positive". Their actions contributed towards convincing the government to change its policies and paved the way for ending segregation of those infected.

Although a system of hospitals dedicated to HIV/AIDS patients is still in existence, a medical commission gives the vast majority the go-ahead to live at home with their families. A small number of HIV-positive people remain confined in the specialised sanatoriums.

* Article produced by IPS with the support of the Pan-American Health Organisation (PAHO) on the occasion of World AIDS Day, observed on Dec 1, 2002, and with contributions from the following IPS correspondents: Marcela Valente (Argentina), Yadira Ferrer and María Isabel García (Colombia), Dalia Acosta (Cuba) and Humberto Márquez (Venezuela). (END/IPS)