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
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
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
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
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
"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