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HEALTH-BRAZIL:
Children Look to Future Despite HIV/AIDS
Mario Osava
RIO DE JANEIRO, (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.
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