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What It’s Like To Live With HIV In Brazil, The World’s Greatest HIV/AIDS Success Story

Brazil is a case study in how a nation successfully deals with an epidemic. But vigilance is slipping as a new generation grows up that isn’t familiar with the realities of the disease.

What It’s Like To Live With HIV In Brazil, The World’s Greatest HIV/AIDS Success Story
[Photo: Ariel Schwartz]

Everything could have gone downhill, fast. When HIV first emerged in the 1980s, Brazil’s infection rates quickly climbed. By the early 1990s, the country had similar infection rates to South Africa, which now has one of the highest rates of the disease in the world (including children, 18% of the population is infected).

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But then something incredible happened: Brazil cut off the epidemic at its knees. A series of measures, including safe-sex drives, free condom access, and free treatment (thanks in part to cheap drugs obtained through some savvy negotiations with pharmaceutical companies), kept HIV at bay. Today, up to 660,000 Brazilians have HIV. In South Africa, over 6 million people have the virus.

But Brazil’s HIV cases are starting to rise again, especially as international funding for HIV/AIDS programs dries up and a generation of young people emerges that didn’t experience the horror of HIV before widespread treatment was available.

While visiting Recife, Brazil, this past spring, I met with a group of young HIV survivors to talk about what it means to live in a country that’s still considered to be an HIV success story, even as its grip on the virus slips.

Caio’s Story

Caio Cesar, a Recife native, works as a promoter for Claro, a local mobile phone service provider. That’s his day job. In his off hours, the short, stocky activist organizes meetings for young people living with the disease in Northeastern Brazil and offering guidance to the newly-diagnosed. The group of us–myself, another journalist, a handful of young HIV activists who all lead branches of a network for young people with HIV/AIDS in their home states–were gathered in Cesar’s tiny, low-slung house to celebrate his birthday, and to plan an upcoming regional meeting of the network.

While we sat in a circle on the rug in the entryway to Cesar’s home, the group told their stories.

Cesar was diagnosed with HIV five years ago when he went to donate blood. A gay man, like almost everyone else in the room, Cesar had been living with a boyfriend who hid his HIV diagnosis for a year. When Cesar went to donate blood, he gave his boyfriend’s parents’ address as his own. A letter eventually arrived at their home, diagnosing Cesar with HIV–but his boyfriend got to it first. He knew he finally had to tell Cesar the truth. “We were fighting. That’s when he told me, ‘You are sick,'” says Cesar.

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When Cesar was dumped soon after, he set his ex-boyfriend’s favorite, most expensive pair of shoes on fire. The young activist buried himself in denial, waiting two years before finally seeking treatment.

On one hand, Cesar is a success story for Brazil’s HIV safety net. Once he accepted his diagnosis, he quickly received treatment at the local hospital and was put in touch with a representative from the youth HIV network. “If a teenager finds out that he or she has the HIV/AIDS virus, we’ll get called,” he explains.

But his experience is also indicative of Brazil’s issues in dealing with the virus. When Cesar came out as gay at age 18, his family kicked him out of the house. Before becoming infected, he had never met anyone with HIV, and it never crossed his mind that he could get infected. His vision of someone with HIV was really that of an end-stage AIDS patient–thin, sick, close to death. Perhaps Brazil’s campaign against the virus had worked a little too well–young people didn’t even know what it looked like anymore.

Infected From Birth

As the only female, Cinthia (she declined to give her last name) was unlike everyone else in the circle. She was born with HIV, having been infected by her mother. Her mother, however, didn’t find out they had the disease until Cinthia was seven–and didn’t tell her daughter that she was infected until she turned 14.

The mother resisted treatment, assuming she would be dead in a few years anyway, and focused her energies on getting Cinthia treated. “She’s a strong woman, and I was weak, sick,” she says.

But Cinthia was treated like a leper. When her mother became severely ill, she went to live with her aunt and cousins, who wouldn’t talk to her. She was given separate sheets, towels, and silverware. She slit her wrists multiple times.

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Today, Cinthia is at peace with her diagnosis, and her mother is still alive. But the stereotypes persist, she says. “Everyone has this idea that you die quickly with HIV or AIDS. When I tell people that I’m living with HIV, they say ‘No, you’re joking.'”

A Crisis of “Who Cares?”

In Brazil–at least in the Northeastern part of the country, where everyone in the group is from–a combination of misinformation and lack of awareness about the seriousness of HIV/AIDS threaten to keep cases on the rise (In the South, North, and Northeast of Brazil, AIDS mortality has grown over the past decade. It has dropped precipitously in the Southeast, which is home to major cities like São Paulo, Rio de Janeiro, and Belo Horizonte).

Across the country, HIV cases are rising young adults between 18 and 24. The activists in our circle all had different ideas as to why. “In my region, even though we have so much access to information, people have unprotected sex and use drugs because they feel like their families are falling apart,” says Rafael, who comes from an especially poor part of the region. “Nowadays, most families are led by the mother, and fathers are just there to knock them up. The kids rebel.”

In Pernambuco, where Recife is located, the situation is different. Cesar believes a lack of information is to blame. “People say the government is promoting safe sex, but they forget there are other ways of transmission. There’s this new idea that it’s better to get HIV than to have high blood pressure.”

Weaverton, another member of the group, concurs that the government is partially to blame. In his opinion, the government focused on HIV prevention when there weren’t effective drugs available, essentially running a fear-based campaign. Then, when drugs became accessible, the focus stopped being on prevention.

“People around us see us healthy, and they don’t see the bad side–the collateral effects, the discrimination. They see us living this healthy life, and they don’t think it’s a big deal,” says Rafael. The government is promoting the idea that you can be healthy with HIV, and it’s forgetting the stigma.”

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Where’s the international community?

I first learned about Cesar and his network of young activists while visiting a cafe in Recife run by GTP (Grupo de Trabalho Em Prevenção Posithivo), a local HIV/ AIDS nonprofit. The cafe, called the Solidarity Kitchen, was built in the early 2000s with support from American foundations. They left in 2010.

The space once had a cooking school for local residents with HIV/AIDS, but that disappeared along with the funding. The restaurant still acts as a shelter for the LGBT population, drug users, and sex workers. Most of GTP’s 40-person team is made up of volunteers; the only paid employees work in the kitchen.

“There’s this idea now that because Brazil is developed, it doesn’t need international aid. HIV/AIDS just isn’t seen as a priority anymore,” says Andre Guedes, an activist with GTP. If the number of cases keeps increasing, it may just become a priority once again.

Ariel Schwartz reported from Brazil as a fellow with the International Reporting Project.

About the author

Ariel Schwartz is a Senior Editor at Co.Exist. She has contributed to SF Weekly, Popular Science, Inhabitat, Greenbiz, NBC Bay Area, GOOD Magazine and more.

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