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Born : 1981
Country : Indonesia
Organisations : Asia Pacific Network of People Living with HIV and AIDS (APN+),
Indonesian PLWHA National Network, Global Network of People Living with HIV and AIDS (GNP+), International Treatment Preparedness, South East Asia Treatment Preparedness
Campaigns for : support for PLWHA and their families, and an end to discrimination faced by HIV positive injecting drug users
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Mostly due to peer pressure, at the age of 16, I started sharing heroin using hypodermic needles with drug users who thought it was ‘cool’. When I was 18 years old, I went into rehabilitation at the Harapan Permata Hati Kita Foundation in the Bogor region of Indonesia, which provides detoxification, counselling, and therapy for young drug users.

Before I went into rehabilitation, I was treated in one of the private hospitals in Jakarta. While unconscious and undergoing detoxification in the hospital, the doctor tested me for HIV and Hepatitis C. I was co-infected. It was a horrible experience, as I did not receive any information about HIV. All I felt was fear, uselessness and anger.

Not long after that I was lucky to find a place that accepts drug users who are HIV positive for rehabilitation, many centres in Indonesia do not. It is here that I became active in the peer self support group and learnt a lot about HIV, Hepatitis C and drug use.

Before going into rehabilitation I didn’t know anything about HIV. All I felt was shame, but now I’m here to save lives. Now I feel that I can be somebody and be useful to other people. I believe that by helping other people, I am helping myself too.

Shortly after my rehabilitation, I joined the Indonesia PLWHA (people living with HIV and AIDS) Network and worked at the Spiritia Foundation, the secretariat of the network, as a field manager until the beginning of 2005. Spiritia is a non-governmental organisation that has been working with and for people living with HIV and AIDS since 1995. It pioneered the creation the network in Indonesia, and its vision is to provide quality care and support, while respecting the human rights of PLWHA in Indonesia.

When I begun to talk about my HIV status, I initially experienced discrimination from my family. I soon came to understand that it was out of fear and lack of information that they freaked out and decimated against me. I believe that parents will always accept their children no matter what the situation. There is no such thing as an ex-child or former child. In 2003, together with some of my colleagues, we started PITA, a support group for parents who have HIV positive children. This is a peer approach that I find really helpful. Parents need to share their feelings and experiences.

HIV positive people should not live alone, as we need support and love from our family and friends, and they need support too. Using the peer prevention approach, PITA also involves student volunteers from universities who develop information, educational material and write newspaper articles to promote the foundation.

Drug use is the driving factor behind the increasing HIV prevalence in Indonesia. This makes our work at the PITA Foundation challenging as families stop coming to the support group when children relapse into drug use. Until their children recover, families are ashamed to come back to the group. The other problem is that elders do not want to listen to youth because they believe they have more experience. The greater involvement of PLWHA is therefore about involving the affected community as well. This is why we have to focus on developing the knowledge of parents about HIV and AIDS and the challenges facing young people.

I do not live with my family anymore as I am now married and we have our own home, but we live in the same city. I got married in February 2005 to a man I love and who is willing to accept me as I am. He is HIV negative and we have been through a lot of challenges. I’m grateful that he is always with me when I face difficult situations. He is a great supporter of my work on drug use, HIV and AIDS, and helped me register the PITA foundation.

I am here today doing this work thanks to the support I get from everyone around me. I started with the support group, and have been developing skills and founding organisations along the way. In March 2002, I was appointed as the Indonesian representative and co-chair for APN+ (Asia Pacific Network of PLWHA), for three years. I am also a board member of the Global Network of PLWHA representing the Asia Pacific region, and have become an advocate for PLWHA, especially for women in the region.

I find it easier to be outspoken when I am outside my country. My parents are not yet ready for me to take an active role in campaigning for HIV related issues, as they are afraid that it will affect their business. Despite this, they are very supportive of my work at home and abroad. At first, it was not easy for me to speak out in public because of my lack of confidence, but with the training I have received at conferences and other platforms, I am now a good public speaker.

With funds from the Asia Pacific Leadership Foundation, PITA and Spiritia held a national workshop for 35 HIV positive women from 10 provinces in September 2005. This was the first workshop, which fully involved women. It was initiated by four women and we agreed to start a national network for women living with HIV and AIDS in Indonesia. We are planning to call it Ikatan Perempuan Positif Indonesia (IPPI), and are hoping that it will soon be officially registered. I represented young women of reproductive age at the launch.

Occasionally I have been denied medical care and faced discrimination at home once I disclose my status. But I am still standing here. I am the new face of HIV in Asia.

Toolbox: Speak Out

• Being strategic will assist you to get your point across and have an impact. You need to be heard in a significant way and reach as large an audience as possible, mobilizing your community with a specific message that will encourage people to continue to advocate for a particular cause.

For steps to maximize your message and more profiles on young women:
>> download 'If I Kept it to Myself' (pdf 4.2MB)
>> or order a printed copy by emailing worldoffice@worldywca.org