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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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