SAO TOME AND PRINCIPE: Stigma hobbles HIV/AIDS fight

Photo: IRIN

Awareness campaigns have done little to change negative attitudes

SAO TOME, 26 October 2006 (IRIN) - When Maria (not her real name) took the brave step of speaking to the media in Sao Tome about her HIV-positive status, she had no idea what she was letting herself in for.

Although she had her back turned to the cameras, her voice was not disguised and it did not take long for people in her community to identify her. "After that, everyone knew it was me - at least, they thought it was me," she told IRIN/PlusNews.

The stigma attached to being HIV positive in the tiny twin-island state of Sao Tome and Principe is huge. No one living with the virus has so far gone public about his or her status, and health workers say that discrimination presents the biggest challenge to curbing the spread of the epidemic.

"This is our biggest problem at the moment. If we don't start accepting that AIDS is a normal disease like others, we are going to make things even harder," said Dr Alzira do Rosario, coordinator of Sao Tome's national AIDS programme.

Do Rosario has to deliver antiretrovirals (ARVs) to some of her patients, who refuse to fetch them from the hospital for fear of being identified and marginalised.

"People who are infected don't want to show their face, not even to visit a doctor. But if they don't, they can get to the terminal phase of the illness, and by then it's too late. It also makes it harder to educate people and get people to change their behaviour," she said.

Television and radio spots about HIV/AIDS are broadcast daily in Sao Tome, where the rate of HIV infection is an estimated 1.5 percent, but the campaign has so far done little to change attitudes towards people living with the virus.

"The government should arrange an area for them [HIV-positive people], where they can live apart from the rest of society," said a 27-year-old man from Sao Tome, the capital. "If they are not going to be apart, their faces should be shown on television so that everyone else knows not to get involved with them. Lots of people who are HIV positive are contaminating others intentionally."
Others say people living with HIV should have their faces stamped so they can be easily identified, and should not be allowed to work.

Maria lost her job as a domestic worker when her boss heard rumours that she was HIV positive; she is struggling to bring up her two children, one of whom is also infected.

"Someone told my boss that I had AIDS, and that I could make him sick by infecting his razor or something," she said. "He went on holiday to Portugal and when he came back he told me he didn't need a maid anymore. He didn't say anything else or mention HIV."

Medicos do Mundo, a nongovernmental organisation providing medical relief in Sao Tome, offers free, anonymous testing and disseminates information about the disease. Its coordinator for the two islands, Manuela Castro, told IRIN/PlusNews that anti-AIDS messages had been slow in getting through to the population of about 170,000.

"There is a lack of information and a lot of misinformation going around," she said. "People still believe that you can catch HIV by touching a person, being stung by a mosquito or using the same toilet as someone who is HIV positive."

There is no organisation to support people living with the disease. Do Rosario has tried repeatedly to bring her HIV-positive patients together but, with the exception of Maria, no one ever turns up.

Maria and the father of her child split up after she and her son tested positive for HIV. She told her mother about her test results, but they have not discussed it since. Today, her only support comes from a friend who lives on the other side of the island, whom she visits occasionally, and Do Rosario.

"I go to discos, I have a normal life, I have friends. I don't feel sad; I am very strong, very concentrated. But I do feel very lonely," Maria said. "When I feel down, I go and speak to my best friend. She lives very far away, but from time to time I go and talk to her to get it off my chest. She gives me strength."

Maria's HIV-positive son is almost ten and has been on ARVs for several years, but he does not go to school and suffers verbal abuse in the area where he lives - neighbours shout that he has AIDS and tell him to stay out of their yards.

Maria feels trapped by her situation and wants to leave Sao Tome for Angola, where she thinks life will be easier.

"I have family in Luanda. They don't know anything about me and I have heard that there, if you are HIV positive, there is no problem," she said. "Here, I'm never going to be able to do anything, I can't take a single step."

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