Out Of The HIV Closet

Tahitian-born Maire Bopp, who came out publicly in 1998, and subsequently established the Pacific Islands AIDS Foundation in the Cook Islands, was the first islander to use her infection to benefit countless others. But she's now being following by others who are tired of whispers behind their backs and who want more aggressive action on treatment needs of people who are positive.

As more people who are HIV-positive come out publicly, it is helping to break down so-called taboos against talking about safe sex, condom use and a dozen other topics related to preventing HIV spread. In some islands, the "taboo" has been convenient for lackluster health workers inclined to focus on other not necessarily less critical but less complex health problems. Sadly, supposed cultural barriers in most islands to talking openly about sex allowed an early spread in the region. But today the reluctance to talk openly is being overtaken by events.

With the exception of Papua New Guinea, the numbers of confirmed cases of HIV in most islands remain modest by global levels-for example, 182 in Fiji, 46 in Kiribati, 14 in the Federated States of Micronesia. But they are anything but miniscule by island population standards.

"People in Kiribati are concerned about HIV," says Batiri Bataua, who chairs the country's national HIV/AIDS task force and is a correspondent for Pacific Magazine. "It's not like before." The discovery of the very first HIV-positive I-Kiribati energized people to action, Bataua says. "We started organizing outreach education after the first case," he says. "If we hadn't done anything, there'd be a lot more than 46 confirmed cases now." Do customary taboos on talking openly about sex inhibit education efforts? "Not any more. We talk openly about sex in churches and elsewhere."

Tuberi Cati and Emosi Ratini of Fiji, and Peati Malaki of Samoa. Photo: Giff Johnson

The decision by more islanders to go public about their HIV status has lifted huge burdens from their shoulders, allowing them to get on with their lives. But it's also broken through the cultural barriers against talking about HIV. In fact, says Fiji HIV-Positive Network co-founder Tuberi Cati, it was traditional leaders who backed them up, helping to push through stalled-plans for providing drugs to HIV-positive people last year.

Many people who know they have the HIV virus are scared to openly acknowledge their situation because of the stigma attached to HIV and AIDS. But the experience of Cati and Emosi Ratini, of the HIV Positive Network in Fiji, and Peati Malaki, a co-founder of the Samoa AIDS Foundation, is quite the opposite. They gained strength and purpose from their decisions to go public.

"I was asked to speak to the Great Council of Chiefs (in Fiji) and tell my story," Cati told Pacific Magazine. "The whole room was silent; they were shocked." Both Cati and Malaki were happily married, until they found they'd been infected by their husbands. "We think HIV will never affect us," Cati told a group of Roman Catholic high students during a recent outreach education trip to the Marshall Islands. "We think it's for prostitutes or people on the street, not for people in church and in school. Before I was diagnosed, I attended two HIV awareness workshops, and I was just like you. I sat in the back and I thought, 'I'm not a prostitute, so how can I get infected?'"

"I never thought that HIV will infect and affect our family," Malaki, whose husband and one son died of AIDS, told Pacific Magazine. "It was so sad and there was so much suffering when I was infected." Their stories underline the fact that it's not just "high-risk" sexual behaviors, so often discussed by health officials, but a lack of awareness and knowledge that are leading factors in exposure to HIV in the region.

Cati, who's been living with HIV since 1998, says she decided she could do something about HIV, so after the outreach to the chiefs, she started going to school and community groups to "share my story." When her husband died of AIDS in 2003, "I was even more encouraged to keep on doing awareness work." This led to the formation of the network for people positive with HIV. Ratini was the first person with HIV to go on TV in Fiji to talk about treatment and other needs of people with HIV. "It was a big risk," he told Pacific Magazine. "I expected people not to understand and to reject me. But no, they really cared, and visited me (after)." Malaki says "going public releases the burden." After that, she could "live as a normal, happy person."

A major concern for people with HIV in Fiji was that anti-retroviral drugs-used to slow the growth of the HIV virus that ultimately causes AIDS-were not being made available to HIV positive people. Cati said the Ministry of Health had a plan for the HIV drugs, but it was not happening quickly enough for people with HIV. After she spoke to the traditional chiefs in Fiji, they "pushed it. When we spoke with influential people, things changed quickly." Fiji's HIV Network got into action in early 2004. By March, drugs were flowing to people with HIV, Ratini says, adding that their outreach was successful. "HIV had been in Fiji since the 1990s, but nothing was happening and people were dying," Ratini says. "That's why I spoke out. We wanted to be treated like others, such as people with TB."

Although education efforts are often aimed at the community, Cati, Ratini and Malaki say it is their experience that health professionals in the region are frequently ill-prepared to provide services to people with HIV and AIDS, so a major focus of their AIDS education efforts have been on health workers. Cati says that one of the reasons she came forward about her HIV status is that she wanted people to hear it directly from her, not through whispered rumors generated by health people seeing her medical record or being aware of her hospital visits for HIV screening and treatment.

"I was advised that no one at the hospital knew about my status," Ratini says of his experience in Fiji. But when he was referred to the Colonial War Memorial Hospital for follow up after being diagnosed HIV-positive, "when I took my medical record folder for an x-ray, I saw other hospital staff looking at the file. I'm tired of that kind of reaction. Health staff were perpetuating a negative attitude."

Ratini believes that the Fiji HIV Positive Network outreach and lobbying with doctors and nurses in Fiji has improved the situation for people with the virus. With many people not ready to publicize their status, the systems used by health officials needed to change. Ratini says that the Red Cross provides very helpful home visits, but staff arrivals in Suva neighborhoods on regular visits in a vehicle emblazoned with large "Red Cross" lettering wasn't promoting confidentiality for those who wanted it. "When the Red Cross came every two weeks in their official vehicle to visit a person with HIV, neighbors began asking why they were coming," Ratini says. When Red Cross officials indicated they needed to use official vehicles for this outreach work, "We said it was better to stop the visits," Ratini says. "They don't know how it feels."

Overall, HIV Positive Network lobbying has paid off: "Doctors wear civilian clothes for home visits," Ratini says, and there's greater confidentiality in hospitals when dealing with people with HIV.

Still, no one yet believes they're winning the race against time on HIV spread. Ratini says that HIV infection has spread quickly in Fiji. "In our small islands, we need to do something to stop its spread," he adds.