World AIDS Day 2011, what has it got to do with me?

Fi Oakes, a Progressio development worker in Timor-Leste, explains why HIV is everybody's business.

You’ve probably already seen the red ribbon symbol this week. It’s used all over the world to promote HIV awareness. But, you might be wondering ‘what has that got to do with me?’

My work here in Timor-Leste, as an HIV Advisor with Progressio, means I spend a lot of time with people who are at risk from HIV. Before I got into this line of work, 16 years ago, I thought HIV was something that only affected gay guys, or was to do with something I read about in the paper called factor 8 for hemophiliac patients - definitely nothing to do with me, right? Wrong!

Everybody's business

HIV is everybody’s business and it’s yours too, because we are all at risk from HIV. It is not possible - simply by looking at a person - to see if they are HIV positive or not. HIV positive people can look gorgeous and healthy for many years before they begin to get sick. If we ever have unprotected sex we are playing Russian Roulette with our health.

In the UK we have lots of ways to get information about HIV: through the media, the internet, health promotion units, and services especially designed to reach sex workers or drug users and for men who have sex with men. We are a fairly liberal nation and generally have open and frank discussions with young people about sexual and reproductive health. But, the people I meet in my work in Timor-Leste do not have this level of access to information and this makes them even more vulnerable.

I work with ‘high risk groups’ with two local Timorese NGOs. Fundasuan Timor Hari'i, who focus on prevention of HIV among sex workers and men who have sex with men, and Estrela+, who focus on promoting the needs and rights of people living with HIV.

Where in the world is Timor-Leste?

Timor-Leste is a tiny island at the very tip of the Indonesian archipelago, only 400 miles from the Australian coast of Darwin. It has a long history of occupation, first by the Portuguese for some 400 years and then from 1975 to 1999 by the Indonesians. Timor-Leste won independence from Indonesia in 1999 but there had been a long and bloody process and much of the infrastructure was destroyed in the process.

The country is classed as ‘low to middle income’ but poverty is high among the general population with high youth unemployment and low literacy, especially in the rural communities. The population is currently 1.2 million, of whom more than half are under 24. The birth rate is one of the highest in the world and infant and maternal mortality is high.

The Catholic Church is strongly represented and teaches that sex before marriage and sex outside marriage is wrong. Family planning and condom use is not socially acceptable. But nevertheless, those lovely babies keep arriving, are joyfully welcomed, and weddings are hastily arranged. On the surface people are happy, cheerful and smiling. People here love ceremonies and an opportunity to party.

What HIV means in Timor-Leste

With such a young population enjoying regular parties, and with frequent power cuts and not much else to do, there is a high level of sexually transmitted infection and a high risk of HIV.  Although the prevalence of HIV is currently classified as ‘low’, less than 1%, the health infrastructure is beginning to scale up its HIV response and new cases are being discovered at an alarming rate.

I work with sex workers, men who have sex with men and people living with HIV to help them understand the virus and identify risky behaviour. These people suffer stigma from the general population at intolerable levels. If someone is working as a sex worker it is because of economic need, not moral turpitude. If someone is gay it is their make-up. But, it is not uncommon in Timor-Leste for sex workers, homosexuals and other people living with HIV to suffer stoning, verbal and physical abuse and ostracism. Many young HIV positive people are denied access to study and some families have been forced to move district to escape threats. Many people have been chased away from their livelihoods.

HIV treatment is not yet accessible to all

According to the Stop Aids Coalition, of which Progressio is a member, new scientific evidence shows that people living with HIV and taking antiretroviral therapy are 96% less likely to pass the virus to their partner. While this is encouraging, it doesn't mean my work is done.

The government of Timor-Leste gives free health care to its citizens, including HIV medications, but the poor road systems, a lack of knowledge about HIV, and reliance on traditional healing among the population means that this essential HIV treatment is a long way from reaching everyone.

Promoting understanding

Together with Fundasuan Timor Hari'i and Estrela+, I promote understanding of HIV and encourage people to attend regular medical check-ups and adhere to prescribed medication. The groups I work with also link with national-level government policy makers to ensure that the national strategic plan for HIV is followed. And we lobby for better access to medical treatment, as well as better access to condoms and prevention knowledge.

Through the great efforts of our peer educators from the sex work and men who have sex with men community, these groups, usually considered ‘high risk’, have reduced their risk activities, and increased their condom use. Whilst new cases among these groups are fewer, increased testing among the wider population is finding increasing numbers of new cases among people not usually considered at risk, particularly women.

The group run by and for people living with HIV, Estrela+, are busy trying to secure funding to support HIV positive people to understand their condition, adhere to their medicine and to prevent transmission between couples or from mother to child.

Working together with the 'old woman'

My role is to support the team to get to a point where they can operate as an independent NGO, to ensure their technical knowledge is strong, and to build their confidence to speak out. It has been a tough posting. The group were initially shy of this ‘old woman’ coming along to help them. It took time to build trust, but the group are becoming more effective and powerful advocates for others in their situation.

Ines, the Manager of Estrela+ says: "The first thing I learned from Fi was self-confidence. We used to be asked to speak at meetings about our experience as positive people. I used to find this very upsetting and intimidating. Sometimes I would cry when I tried to speak as I remembered all the horrible things that have happened to me. Sometimes the people in the meeting would seem hostile; they were all older and high level people. I was scared of them."

Experts on their own experiences

"But Fi helped me to learn that I am an expert on my experience. The horrible things that have happened are things we want to change for the benefit of other people living with HIV. I have learned to separate the personal from the professional.

"I have learned to ask questions about the meetings’ aims, to work out what I want to say on behalf of the people I am representing, and how to focus on the needs and rights of people living with HIV. I plan ahead and practice with my colleagues. Sometimes Fi will role play difficult questions to give me a chance to plan my response."

I have worked for over 16 years with people at risk of HIV and other blood borne viruses, the last eight years in Asia and Pacific region, so you can imagine World Aids Day means a lot to me.  HIV is my business 365 days a year, 24 hours a day.

Three things you can do to help

And it's your business too. There are three things you can do to help. Firstly, please support the work of international charities like Progressio who are working with some of the most vulnerable people in challenging environments, secondly, wear a red ribbon on World AIDS Day, and thirdly, protect yourself and your kids from sexually transmitted infection and HIV by making sure you and they know how to use a condom.

Photo: Fi Oakes is pictured at an awareness-raising stand at an international conference on HIV in South Korea