In Timor-Leste just before Christmas, there was a Christmas party with a difference. More than 40 people living with HIV celebrated life, and remembered loved ones, at a party held by Estrela+ - a support group set up for and by people living with HIV, writes Tibor van Staveren, Progressio's country representative in Timor-Leste.
The existence of Estrela+ is itself a remarkable achievement in a country where stigma and discrimination is still the norm - and where people living with HIV are still fighting for recognition. The Estrela+ group has made great strides, holding a seat on the National AIDS Commission and the Country Coordination Mechanism for the Global Fund, and having strong ties with other local and regional networks.
But it still faces an uphill battle to be legally registered as an NGO (non-governmental organisation). There are individuals who believe that HIV-positive people cannot have the responsibility for managing and running their own affairs, which of course undermines the group's recognition. As group member Millie (not her real name) comments, “Having the virus does impact on our health, but it does not mean we are stupid or dangerous.”
They are also working to change the commonly held view that sees people with HIV only as victims or patients, or public enemy number one. An example of how widespread misconceptions are is that at a recent consultation for Global Fund Round Ten proposals in Timor-Leste, when Estrela+ wishes were being discussed and the concept of a drop-in centre for people living with HIV was explained, a health professional in the group thought this was a good idea so that “we can catch them and keep them under control.” Another participant at the same meeting suggested that the way to halt the transmission of the virus is to isolate the people living with HIV on a remote island.
Yet the Timorese Ministry of Health has an excellent medical programme which provides ARV treatment free to Timorese citizens. It's just that people don't know about it. As one member of Estrela+, Lia (not her real name) put it, "Many people think there is no cure for HIV, but they forget that drugs are available to help us live longer, stronger lives."
Since March 2010, Progressio has been supporting Estrela+ through development worker Fi Oakes, who helps them with building their organisational capacity and supports them in developing advocacy strategies to reduce stigma and discrimination.
Let's hope 2011 is the year when the message of the Ministry of Health and Estrela+ finally reaches the hearts and minds of the Timorese people: "The one who has HIV, he or she is my friend!" - or in the local language, “maluk ne’ebé iha HIV/AIDS ona, nia mós ita nia kolega!”
Photo: A display of candles at the Christmas party held by Estrela+. Photo: Tibor van Staveren/Progressio