Living with HIV in Bolivia

By Mattia Cabitza
BBC News, La Paz

image captionThe number of people testing HIV-positive in Bolivia has been rising in recent years

In the waiting room at the HIV and Aids clinic in La Paz, Bolivia's main city, a morning soap opera plays on TV.

This is the only place in La Paz to get tested for the virus and where people living with HIV can see a doctor and receive medication.

By law, people who are HIV-positive are entitled to free antiretroviral drugs. This includes Lily, 49, who was diagnosed eight years ago.

"Today I am alive and feel better, thanks to the medication," she says.

"I can enjoy again being with my children and - more than anything - I have regained my self-esteem as a person and as a woman."

Lily is one of the 5,000 people (0.05% of the population) who, according to official figures, are HIV-positive in Bolivia, although some estimates put the number at double that.

The virus was first diagnosed here in 1984. None of the initial group to test positive is still alive. The longest survivor in Bolivia is Daniel Ruiz Diaz, who tested positive 20 years ago.

Scared to tell

Originally from Argentina, Mr Ruiz now works as an Aids activist and is the secretary of Bolivia's National Network of People Living with HIV and Aids.

image captionDaniel Ruiz says being HIV-positive spurred him to help others

"I remember that 18 November very well," he says. "It was raining a lot. I opened the test results on the street, and I started crying, crying, crying - but not because I was afraid of death. My biggest fear was the pain I would cause to my mother."

Mr Ruiz told his brothers about his HIV status after a few months. They were supportive but he decided to wait to tell his mother.

"I made a kind of pact with myself, that if God gave me 10 more years I would tell her," he remembers.

Ten years went by, but just as he was going to tell her, his sister found out she was HIV-positive.

"My mother suffered and cried a lot," he says. "And when I saw that pain, I decided never to tell her."

Tears begin streaming down his face. "Ten more years have passed. The only family member who still does not know is my mother, because I do not want to hurt her."

Mother accused

The anguish of telling your parents you are HIV-positive can be hard to bear, but imagine being a teenager and hearing that from your mother.

Juan Jose Hurtado Dipp, 17, thought the virus could be spread through saliva, so he argued with his mother because she was giving him food on her plate.

"I told her: 'How can you do that? You have Aids! Give me another plate,'" recalls Juan Jose. Raging against the situation, he ran away from home.

He returned when his money ran out, and his mother took him to a forum for teenagers affected by HIV and Aids. His relationship with her soon changed after he met some of his peers in a similar situation.

"I started helping people more and not upsetting my mother. I changed because of what happened."

Mr Ruiz says it is still hard to live with HIV in Bolivia. "People with HIV are still dying very lonely deaths.

"It's those bad looks that hurt you, those doors that close in your face.

"A young person who finds out they are HIV-positive often faces rejection. And it's worse if that person is from the countryside, or poor, and even worse if they are homosexual or transgender.

"You die first of all socially, and then your body dies very slowly in a horrible way."

Andres Vargas, a doctor at the Institute of Human Development in the city of Cochabamba, is worried about the infection rate in Bolivia.

"It has been going up since the year 2000. In the last few years, there have been about 1,000 new cases every year, and this year it could reach more than 1,300."

Why me?

Medical experts say efforts to tackle HIV infection in Bolivia are poor because most resources are targeted at what are seen as more immediate threats to health such as malaria and dengue fever.

image captionMore prevention work is needed, health campaigners say

Bolivia receives donations from the Global Fund and Brazil to buy antiretroviral drugs. But Dr Vargas says the government should do more work on HIV prevention, and more to encourage people to get tested.

"Many people who have the virus don't know about it," he says. "They think they are healthy because they don't have any symptoms, but they're spreading it.

"If we do not do prevention, in the long term we are going to continue accumulating new infections, and the help is not going to be enough."

When Daniel Ruiz was diagnosed 20 years ago, little was known about HIV in Bolivia. It was common for people to think they were going to die.

And Mr Ruiz, like many other people who find out they are HIV-positive, asked himself: "Why me?"

He says he now asks a different question: "What for?"

"What was the reason I was diagnosed?" he asks. "It was to be more supportive, to talk about Aids, to do something for Bolivians, to work in schools, to give other people the strength to live."

Mr Ruiz also says that, since he found about his HIV status, he has worked to feel more complete in his own life and he is not afraid of death.

"I am sure that God, when I die, is not going to ask me if I am homosexual or heterosexual. He is going to ask me: 'Hey, Daniel, were you happy?' And I am going to reply: 'Yes, I was happy!' And I was true to myself."

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