25 November 2009
Words by Annie Kelly
Gabriela's life is no different from any of the other 16 year olds from her favela neighbourhood in Rio de Janiero, Brazil. She goes to school, takes the bus to the beach, last year she was crowned teenage samba queen. All this would change, she says, if people found out she was HIV Positive.
“At school we have a teacher who says that people with HIV have a knife hanging over their heads that could drop at any time,” she says, shaking her head. “He tells people that they can become infected just by touching a person who has HIV. My mum is so scared that people will find out she makes me promise not to tell anyone because she says my life will not be worth living.”
Like the majority of the children and teenagers who congregate at Pela Vidda, a project for young people living with HIV tucked away down a side-street in the city of Niteroi on the outskirts of Rio, Gabriela is among Brazil’s first generation of people who have always lived with HIV.
Photogallery: Helping HIV positive children in Brazil to face stigma
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After the first known case of AIDS was recorded in Brazil in 1982, the country’s rapid and aggressive response to the virus is considered a global success story. In 1982 the World Bank predicted that 1.2 million people would be living with HIV by 2000. Yet by 2007 the number of HIV positive Brazilians had stabilised at around 600,000, an achievement widely attributed to the government’s early decision to break the patents of the pharmaceutical companies who control the worldwide distribution and pricing of Anti-retroviral drugs (ARVs) and promise free treatment to all those who needed it.
But despite the country’s success in curbing HIV infection rates and securing almost universal access to treatment and prevention services, the battle to end the stigma, discrimination and fear that still swirls around the virus is far from won.
“The stigma and social isolation of being HIV Positive hits young people and teenagers particularly hard,” says Leila Chagas, resident psychotherapist at Pela Vidda.
“We know of people discovered to be HIV Positive being excluded from their communities, in some cases threatened or abused. Some of the narco-traffickers in the worst neighbourhoods will chase HIV positive people out of town or even kill them. Because of this many of the children we see here are under orders from their parents to keep their HIV status secret.”
16-year old Lucas travels almost an hour by bus to reach Pela Vidda twice a week. Unlike the majority of the children here who have known their HIV status since childhood, he only discovered he was positive two years ago when at 14 his continual ill-health started raising alarms.
“There is no way I could tell people, no way,” he says. “I don’t want to cause problems for myself at school so nobody can know. If anyone asked me I’d deny it. It’s only when I’m here I can talk about it.”
Pela Vidda was founded in 1991 to campaign for improved access and quality of treatment services for people living with HIV.
Supported by UKaid from the Department for International Development and Save the Children UK, the project now works with around 150 children aged between 6-18 years old from mainly poor neighbourhoods around Niteroi.
“In the neighbourhoods where these children are from there is no support structures in place, many of them have lost a parent and are living in very poor conditions and so are facing this alone,” says Ignacio Queinoz, Pela Vidda director.
“What we’re doing here is intervening, making sure these young people are getting the treatment they need but also helping build confidence, creating a fellowship amongst them to try and beat this isolation.”
As well as providing a place of refuge and safety for it’s young people and providing counselling and social care services, music workshops, art therapy and regular meals, the project works hand-in-hand with paediatricians at Niteroi hospital.
Dr Silvia Guasti, the paediatrician and supervisor in charge of services to young people affected by HIV and AIDS says that together with Pela Vidda her team fought hard for the establishment of a specialised unit that provided not only treatment but also support services for HIV positive children.
“When we first started this service for children and adolescents we would be treating them in the corridor, there was no recognition of the needs of children affected by HIV,” she says.
“We brought in a huge red football and let the kids go crazy with it to make as much noise as we could until they finally gave us room to see them all.”
Guasti says one of her team’s biggest achievements is ensuring that the children they treat are spending less time at the hospital and more time getting on with their lives.
“We know that continual hospital visits can be very upsetting to children, especially as they get older and spending less time seeing doctors is fundamentally important if we are to get them to believe that they can live normal healthy lives,” she says.
“Now we have this service and the quality of the HIV treatment has improved, someone will come in, do some group work, see a counsellor, visit the doctor and then not come back for another month.”
But the staff at Pela Vidda say that there is still a long way to go before many of the young people who find refuge, security and companionship within their walls are willing to live openly as HIV positive people within their communities.
“The differences we see in the children who come to us is amazing, just having this kind of support network transforms their view of themselves and what they are able to achieve,” says Chagas.
“But we won’t push them to tell people about being HIV positive. We have a duty to protect them as well. It is a decision they will come to themselves, but hopefully what we are doing is help create a new generation of Brazilians who are not ashamed of being HIV Positive.”
Pela Vidda’s teenagers are making the first steps themselves. They have set up peer mentoring schemes to support younger members and this month (November) are running a HIV awareness seminar where they will talk to other young people in hospitals and HIV projects around Rio about issues such as safe sex, building friendship and health and nutrition.
“Lots of people live with illness and have to take medicine. People need to realise that those with HIV are normal just like them,” says Gabriela as she shows off the samba routine she is taking to the seminar. “My mum won’t understand but when I’m 18 I’m going to try and start telling people that I am HIV positive. I don’t want to live my life always hiding away because that is not who I am. I like being me.”