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Inter Press Service
HEALTH-BRAZIL: Children Look to Future Despite HIV/AIDS
Mario Osava
December 18, 2003
RIO DE JANEIRO, Dec 18 (IPS) - "My mother cried a lot and I didn't know why. I was sad, but not upset. I got the news and I took at as something bad, but something normal. I didn't really understand what it meant."

This is how Ana (not her real name) remembers her reaction to being told at age 13 that she had AIDS. "Later, I understood it, I became more aware of the problem, and sometimes I would get depressed," she says.

A rash on her abdomen was the first symptom, and led to a test that proved she had the human immunodeficiency virus (HIV), the precursor to AIDS, she said in a telephone interview with IPS from her home in Brasilia.

Now 19, Ana represents one of the oldest cases of vertical HIV transmission, in other words, when a mother passes the virus on to her newborn. It was 20 years ago when the first Brazilians were diagnosed with AIDS.

She had a normal childhood, not knowing she was infected with the virus, and even today the illness is a family secret.

"I don't like to talk about this," she said, explaining that she fears discrimination if others find out about her condition.

Today, Ana is bringing up a daughter, a year and three months old, who she says is "a great deal of work and joy," and who has so far tested negative for HIV.

"It gives me strength, because I know I have to be strong so my daughter doesn't end up alone," said Ana, and described the "nightmare" of having to take so many medications every day. She has to take a "cocktail" of antiretroviral drugs, which have proven effective in halting the advance of AIDS in the human body, but which often cause dizziness and nausea.

There was a time when she quit taking the medications and her immune system immediately suffered a decline, she admits.

It is Ana's dream to return to her studies. Her secondary school education was interrupted two years ago by the pregnancy, which she says was unwanted "because it was too soon," and she was dealing with other health problems.

"I like science, to discover things. I like to study the heavens, the planets," she said.

Fortunately for her, Ana's AIDS symptoms appeared after Brazil had already launched its free HIV/AIDS medication programme.

Brazilians who test positive for HIV are provided with antiretrovirals, free of charge, and are monitored by medical professionals, through a system that international health organisations cite an example that other countries should follow.

The programme, which began in 1996, has extended the lives of children and adolescents, and their parents, preventing the phenomenon of "AIDS orphans" that is common in Sub-Saharan Africa, where HIV/AIDS prevalence can be as high as 25 percent among adults.

The government-run system is also credited for reducing mother-to-infant infections, which until 1997 had been on the rise, reaching 964 cases that year. The trend has been reversed, with just 372 cases reported in 2002.

Mother-to-child HIV transmission rates plummeted from 16 percent to 3.7 percent as a result of antiretroviral therapy, says Alexandre Grangeiro, the Brazilian Health Ministry's coordinator for AIDS and sexually transmitted diseases.

The challenge now is to create conditions for the effective social insertion of HIV-positive children and adolescents, taking into account their specific needs, how they get along in school, and, as they become adults, the beginning of their sexual activity, Grangeiro told IPS.

Over the past 20 years, 9,775 children under 13 have been reported to have HIV/AIDS, and an estimated 7,000 continue to survive the disease.

The University of Brasilia set up a service this year specifically to treat children and adolescents, as part of its Con-Vivencia project, a psychosocial initiative for people with HIV and their families.

Project coordinator and psychologist Eliane Seidl told IPS that one of the main difficulties that parents and caregivers face is how to tell a child that he or she has the disease.

If this revelation is put off, the child may become distrustful, "imagine irrational things, silence his or her doubts," and may even find out the truth in a more traumatic way, she said.

One such example involves a 10-year-old girl who saw the name of an antiretroviral drug in the newspaper. It was the same as a medication she was taking but had never understood what it was for. She cut out the newspaper story and kept it for a year before finally taking it to her paediatrician and demanding the truth.

"It's easy to manage the drug therapy with younger children," but as they grow up they begin to question everything and they want to know why they take the medication and how long they will have to continue.

Children learn about HIV/AIDS on television and relate that information to their own situations, said the psychologist.

The project helps caregivers identify when is the best time to tell the child about the disease, and often uses play therapy to establish dialogue and explain what it means to live with HIV/AIDS.

At Casa Vida, a home for children with HIV founded 12 years ago by Roman Catholic priest Julio Lancelotti in Sao Paulo, there is no question about "revealing" the disease, because everyone there knows about it and is dealing with his or her own situation.

"We always state the truth and act with greatest transparency," Lancelotti told IPS. "Affection, the feeling of belonging, identity and the hope for a future" are key in living with HIV, he said.

The children provide support for each other, and the schools they attend generally are accepting of them, although there were some cases in which court orders were necessary in order to deal with prejudices, said the priest.

Of the 35 children who currently live in Casa Vida, half are orphans and the rest are not able to live with their families for one reason or another.

The institution has provided a home to 120 children in its 12-year history. Fifty were adopted by families in Brazil or abroad. But AIDS has claimed the lives of 12 of the home's former residents.