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HEALTH-LATAM: 'Positive' Networks Open Doors
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 Bogot 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, 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).
World AIDS Day Special Edition
http://www.ipsnews.net/aids2002/index.shtml
(END/2002)
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