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Gracias a la Vida

Latin American women learn to live with the Aids virus spread by a macho culture

The night sweats. The heat sticks to the sheets. The useless roof fan repeats once more its suffocated squeak. In the dark the children sleep. Not Ana. She didn’t manage to kill all of the mosquitoes in her room. There is always one left, which is hiding. And if you don’t take care and if it was the same insect that previously bit you and was to bite your son? And if the little one was to fall ill? The fear overcomes you. You cannot manage to kill all the mosquitoes in the world. You cannot manage to kill off your anger.

In November of 1999 Ana’s world collapsed. At half past ten in the morning a young person in a white apron informed her that the exam was positive: she was infected with HIV, the Aids virus. “Why me? Was the first think that I thought.” She had been married for fifteen years to a highly successful businessman, she was a housewife, a mother of three children, two small boys and an adolescent. “Why me?”

Ana’s story is not unique. Hundreds of similar cases occur each year in Paraguay. In this country, as throughout the whole of Latin America, Aids is more and more feminine, younger and poorer. The syndrome affects more and more women who have acquired the virus in their own houses from their own husbands. The numbers in Paraguay have caused an impact. At the start of the epidemic there were twenty men infected for every woman. Almost two decades later, in 2002, the proportion registered is practically one man for every one woman.

The feminization of the illness is a phenomenon relatively new in the Southern Cone. Initially HIV affected homosexuals and those dependent on drugs, who shared syringes. But with the passing of the years the transmission began to be a problem common to young women and to the poorest segments. Aids stopped being a question for men who had sex with other men and also became part of the daily situation of bisexuals and heterosexuals. Many married men have sexual relationships with other men or women and then arrive home at night to sleep with their wives – promiscuity during the day, fidelity during the night. Thus, without knowing about the situation, many women have been sharing their bed not only with their partner, but also with his occasional lover, and all of the lovers of each of those lovers, and so on successively.

Paloma Cuchi, a doctor and the regional assessor of the Joint United Nations Programme on HIV/AIDS (UNAIDS), speaking by telephone from her office in Washington D.C., recognizes this tendency. She stated that susceptible populations – homosexuals and those dependent on drugs – have reached a point of such saturation that now they are pushing the illness to women and low-income populations. More serious than this is the fact that social pressure upon women is slowing down her liberty to demand a preservative when maintaining sexual relations. The macho culture that still permeates the region is added to a lack of education. -Sexual inequality between men and women, when proposing the use of a condom, continues to exist. Because it’s considered that she’s betraying her husband, or simply he refuses to use one. There are also sexually working women to whom the request to not use a condom is continually made. This imbalance between men and women continues and follows an economic imbalance. When women have a higher level of education, they have greater economic possibilities and are also more capable of demanding equality in sexual relations, and not just in the use of a condom, but also within their sexual life as a whole-, she explains.

Nevertheless, families continue to educate women to turn them into housewives. The young men go off to college and university. The young women take care of their little brothers. The young men go off to parties and enjoy themselves. The young women prepare the food. The young men know how to take care of themselves in sex and how to convince a non-educated woman to have unprotected sex.

This phenomenon can be confirmed by the numbers in Latin America. In Chile, for example, within a few years the trend from one woman infected by HIV for every twenty men to one woman for every five men, at present. In Brazil the situation is even more serious. Data from 2002 has established that among adolescents between 13 and 19 years of age, the number of contaminated women already represents the double of contaminated men. Both in the age group of 19 to 30 years and in the age group above this, the proportion is roughly one woman for every one man. In Costa Rica, in only four years, the trend went from one woman for every twelve men to one woman for every seven men. And in Paraguay, as previously stated, the proportion is now one to one.

Stolen life
Right from that morning of November 1999 Ana’s life changed. She had not understood what had happened. “My life simply revolved exclusively around my family, my sons, for me the rest was nothing” From night to day she had been infected by a mortal illness of which she knew nothing. And nobody gave her any information. “That first year was terrible”, she recalls.

“At the beginning I couldn’t sleep at night, hunting the mosquitoes that I had to kill so that they would not bite my children, since they could have bitten me first. I didn’t want to take my children to the dentist. I didn’t even want to go to the bathroom so as not to contaminate them.” She cried and ate the whole day. In eight months she had put on 40 kilograms.

Even though it has been scientifically proven that the Aids virus cannot be transmitted through the air, by insects or by saliva, the biased fears still continues in place, including among the health professionals themselves. Ana suffered them on her very own skin. “The doctors wouldn’t examine me, wouldn’t touch me.” Until 1999 the patients who died of Aids in the Paraguayan public hospitals were pushed directly into a plastic bag and from there placed in sealed coffins, without giving the opportunity of family members to wash them or giving them a final kiss.

Even today discrimination imposes itself as an impediment of access to health care. “We don’t treat people with Aids”, can be heard in the hospital corridors or the medical consulting rooms. Poor treatment, contempt, looking down upon the patient still persists, and with a powerful force, in the health services. For fear of losing the right to medications or for fear that they are known to be positive cases, many women suffer in silence. They cry at their impotence on arriving home, but attempt to be strong in the face of a medical assistance service that does not even honor its name. Dr. Cuchi confirmed that “the woman in general is discriminated against as far as access to the health services. Some illnesses exist, such as uterus colon cancer, which are not included in the coverage for Aids cases. In Paraguay, a positive diagnosis of Aids represents the difference between being attended to and being excluded from private medical services. And the woman, given the manner in which she was educated, looks less and less towards medical attention. They look for it when their children are ill or when they themselves are seriously ill, but this has cost them a lot, because they have no time, are always occupied, or because they must perform the role of pillars of their families. One can still see a very large stigma in many sectors, including that of health. But this is a theme that has a lot to do with development”.

When Ana became aware that she had been infected, she allowed an immense anger to invade her mind. She blamed her husband, who had cheated on her, blamed herself for not having  taken care. Blamed her friends, because they continued healthy. “At the beginning, through anger, through despair, I wanted to tell the world that I had been infected”, she recalls. “By luck I didn’t do that”, she now evaluates. “Because afterwards you can’t rub out what you’ve done and everyone will turn their backs to you, and it’s there that it hurts.”

Red-headed, fat and happy, Ana arrived for the interview sweaty and carrying the bags of clothes that she sells to support three children. She has no car, she goes by bus. Since her husband died as a consequence of Aids, she has taken the reins of the house. She works at anything: “Sometimes I work as a hairdresser, at other times I sell panties, sell cosmetics, if I had to wash someone else’s clothes, I’d wash them, if I had to clean someone else’s house, I’d clean it. Work for me is not degrading”, she says, and then added “now”. Before, yes, it was.

She guarantees that she was reborn two years ago. Her life changed since she learned to live with Aids. This began when she started to participate in self-esteem meetings promoted by the Win Foundation, founded by people who live with the virus.

As yet the symptoms of the infection cannot be noted in her. She has no marks on her face, she has not lost weight, although her defenses had lowered more than a year ago and her viral level rose to the point where she had to start taking anti-retroviral medicines. Nobody, bar a select group of family and friends from the Win Foundation, know that she carries the HIV virus in her body. “My parents and my brothers? They say they support me, but nobody ever comes to my house”, she comments. For this reason it is better to keep the secret.

State disinterest
Another of the dramas that those infected with HIV in Paraguay must confront is the shortage of medicines. The annual budget of US$ 500,000 destined to the Program of the Fight Against Aids does not allow for guaranteeing the annual medication needed by the four hundred and fifty (450) patients under treatment. A further seven hundred (700) sick people exist who should be receiving medication, but they have not even begun because there treatment cannot be continued.
Things are different in Chile, where the State has an annual budget of US$ 15 million for the coverage of 90% of the patients who require therapy. In Brazil, one of the most advanced countries in the treatment of Aids, between 2000 and 2002 the government spent US$ 180 million on the coverage of the 140,000 people infected and in treatment.

Like the majority of those with the virus in Paraguay and in the rest of the Southern Cone, Ana is very poor. Since her husband died, she has been merely existing. For this reason, when she arrived at the program office and was told that this month there would be no medicine she felt unwell. She knows that this is stealing days from her life. Each interruption in the treatment has clinically irreversible consequences. The virus gets stronger and each time more difficult to control.

“And what do you do when they don’t give you the medicine?”, we asked. “Nothing”, she replied with a nervous smile that she showed throughout the interview, “I look after myself with popular medicines, like ‘olho-de-gato’ (a variety of bonduc), which they say raises your defenses, I take anything”. The Aids victims do not have any choice under these circumstances, because locally they cannot obtain the medicines and abroad their price is inaccessible to the vast majority. Thanks to negotiations with pharmaceutical laboratories, the monthly cost of treatment has lowered from US$ 1,300 in 1996 to today’s price of US$ 180. Even at that, the Paraguayan government does not guarantee their supply.

Thankful for life
Currently nobody speaks of “risk groups”, but of all of us, men and women, being exposed to acquiring the virus. According to estimates made by the Fight Against Aids Program in Paraguay, around 12,000 people are infected. It is known that seven of every ten infections occurs by sexual means and that the majority of cases are with heterosexuals. Of the remainder, 13.2% correspond to intravenous drug users and to some cases of errors in blood transfusions noted at the start of the epidemic. The transmission from mother to newly born child contributes to some 3.5% of the cases and around 11% of the cases have an unknown method of infection transfer.

Now, after two years of conversation and education, Ana no longer fears that a mosquito will infect her sons with the HIV virus. She no longer has any fear of harming them. “Every time I lie down in bed I thank God for one more day of life and for all of the things that previously I gave little importance to.” She does not know for how many years she might live, as nobody really knows. She only hopes to keep up with her medication and to remain as healthy as possible, and hopes that a treatment comes forward capable of curing her. This is the same hope that some 42 million people have who currently live as carriers of the HIV virus and are suffering from Aids throughout the world. “Whilst a person doesn’t accept that the HIV exists in his or her body, they suffer a lot, but starting from the moment that they accept that they can live with the virus, everything becomes easier.” These are the words of a mother, of a fighter, of a woman like so many others.

*Patricia Lima is a journalist with the Paraguayan daily newspaper Ultima Hora and  Victor Hugo Durán with the newspaper El Mercurio, in Chile. This article was originally published in the Magazine Revista Acción, of the Antonio Guasch Paraguayan Studies Center, and is being reproduced with authorization.
Translation: Mariluce Moura.