HEALTH-LATIN AMERICA:
Participation
the Best Anti-AIDS Weapon
Mario Osava
RIO DE JANEIRO, (IPS) - Jacqueline Rocha Cortes symbolises the
fight against AIDS in many regards, particularly the important role
played by civil society in controlling the epidemic in Brazil and in
other Latin American countries.
At age 44, she has been HIV-positive for ten years and is active in many
different ways in the anti-AIDS struggle.
Locally she works for the government programme to fight HIV/AIDS in Rio
Preto, a city of 390,000 people in Sao Paulo state with a high rate of
HIV infection, blamed on the fact that it is a cocaine trafficking hub.
Rocha Cortes'
job is to convince the decentralised health centres to follow
routine efforts to prevent and control AIDS, but ''under the watch
of civil society,'' she says.
She is not representing the Rio Preto city government, but rather
the non-governmental organisation GADA, which is dedicated to
assisting people with HIV/AIDS. Her work is an example of the joint
efforts of government and civil society that characterises the fight
against the disease in Brazil.
In the international arena, at the Joint United Nations Programme on
HIV/AIDS (UNAIDS), she has a seat in the programmes coordination
council as a member of the Latin American Network of People Living
with HIV/AIDS (REDLA+) and its Brazilian affiliate RNP+.
Her personal story is also noteworthy. She was infected with the
virus through sexual contact, as are most women who are HIV-positive
in Brazil. They trusted their partners and didn't demand the
protection of a condom.
The infection did not stand in the way of cardiac surgery in 2000,
following a heart attack caused in part by the antiretroviral
medications, whose side effects tend to affect women more than men.
Later she had an operation to ''readjust'' her sex organs. She is a
transsexual, but does not define her case as a ''sex change''
because, she says, ''I was born female.'' Her condition was legally
recognised by the courts, which assures her all the necessary
documentation as a married woman.
The fact that she is an English language teacher was a factor in
choosing her to represent REDLA+ at UNAIDS and in the international
community.
In her assessment, the strong influence of civil society in AIDS
policies in Latin America is the result of organisation and ''fluid
communications'' amongst the movements of people with HIV/AIDS and
the NGOs.
Regionally this sector is organised as ''seven sisters'', which
encompass REDLA+, two networks of women with HIV/AIDS, and other
groups of sex workers, homosexuals, NGOs dedicated to fighting the
disease, and to mitigating the side effects of the antiretroviral (ARV)
drugs.
The mobilisation of these groups has achieved free or discounted
ARVs for all who have HIV/AIDS in certain countries.
A network of NGOs in Argentina used publicity campaigns and street
demonstrations to win the inclusion in 1996 of ARVs on the list of
medications that trade union medical plans and private medical
companies had to supply at discounted prices.
Free ARVs have been distributed through the public health system
since 1996.
In Venezuela, it was civil society groups that won a ruling from the
Supreme Court of Justice in 2000 that the Health Ministry and the
governmental Social Security Institute had to provide ARVs free of
cost to all people with HIV/AIDS. Twelve thousand people benefit
from that court victory.
Free distribution of ARVs has been in place in Uruguay, home to 3.4
million people, since 1996. It was a court decision in a lawsuit
filed by ASEPO, an assistance group for HIV/AIDS patients, that
reinstated and ensured the continuity of the Health Ministry's
distribution of AIDS drugs, which had been suspended for a time.
But people with AIDS continue to suffer discrimination everywhere,
''treated as addicts or as promiscuous'' because the epidemic began
among gay men and among prostitutes, but the greatest prejudice
comes from the officials and doctors at health centres, said Liset
Collazo, an ASEPO activist.
The relatively small number of Uruguayans receiving ARV assistance
-- 1,000 poor who are covered by the state and 400 through private
health centres -- limits their ability to exert pressure on policy
makers.
There are some 27,000 people receiving ARVs in Argentina, 80 percent
through state-aided hospitals. The government estimates there are
120,000 Argentines who are HIV-positive, but the NGOs believe the
figure could be double that number in this country of 37 million.
It took many lawsuits before ARV distribution was normalised 18
months ago, but ''there are no supplies, not enough stock to cover
an eventual shortage,'' says Hernán Aguilar, president of FAPVIHP, a
group of people with HIV/AIDS, their families and friends.
ARV treatment has sharply reduced the mortality rate, but infection
rates have increased in Argentina ''because there are no massive
campaigns focused on prevention,'' according to Noemí Perelman, head
of the Fundación Desida, which provides medical, psychological,
legal and other assistance to the vulnerable segments of the
population.
Argentina has the most children with HIV/AIDS in Latin America, the
result of scant follow-up of pregnancies of HIV-positive women, and
due to ''the sex abuse of minors, given that many of these mothers
are children themselves,'' said Perelman.
It is in Brazil that the policy of free ARV distribution has
achieved model status, because it is massive, currently reaching
140,000 people, and because of the crucial role that NGOs played in
its design.
Worldwide, only 400,000 people have access to ARVs, according to
UNAIDS. Brazil is home to 35 percent of them.
There are some 1,400 NGOs dedicated to AIDS-related issues in
Brazil, and 750 are ''partners'' with the sexually transmitted
disease and HIV/AIDS department of the Health Ministry, explains
Julio Pacca, head of the programme's civil society and human rights
division.
In addition to the NGOs, Brazilian trade unions and other social
movements, churches, universities and businesses participate in all
stages of the programme, from planning to prevention campaigns to
monitoring distribution of the medications, Pacca told IPS.
Pressure from civil society ''is an ongoing tension, which is
positive and necessary,'' and at one point forced the government to
overcome its budget limitations to ensure ARVs for everyone, he
said.
The NGOs also compelled the government to suspend campaigns that
linked AIDS with death, or which in some way promoted discrimination
and fear of the disease.
The Brazilian programme has cut AIDS mortality in half, and its
practices are being integrated into other areas of the national
health system.
But civil society participation is still necessary ''to ensure
continuity of treatment,'' which is sometimes threatened by
''bureaucratic problems or by interference with policy or from the
pharmaceutical industry,'' said activist Rocha Cortes.
(* Viviana Alonso in Argentina, Raúl Pierri in Uruguay and Humberto
Márquez in Venezuela contributed to this report.)
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