Two advocates and mothers living with HIV had powerful messages to share at a meeting in China – messages everyone could learn from.
Ayu, 28 from Indonesia, found out six years ago that she was HIV positive. Five days later, her husband passed away due to an AIDS-related illness.
“My 8-year-old daughter is also living with HIV,” says Ayu, wearing large black-rimmed glasses and picking at some fruit. “My brother and sister were mad at me at first – angry that she had contracted HIV. But now they understand that I didn’t know and that there were a lack of programmes and support to help mothers like me.”
After she first discovered she was living with HIV, she found it had complicated her family relationships. “In the beginning it was hard, I only got support from my mum and dad. My brother and sister couldn’t deal with it. My sister didn’t even want to share my pants anymore! My brother found it hard to talk to me.”
Ayu soon found however that it was their lack of knowledge about HIV that was the problem. “They didn’t have the information and I always tried to give it to them. They learned and they now offer greater support.”
“My daughter is on treatment and she’s very healthy,” she says as she begins to talk enthusiastically about her child. “She’s just a normal child. She’s recently started swimming courses and she’s decided she wants to become an athlete.”
Adapting to local contexts
Ayu is now board member for the Indonesia Positive Women Network. It is the only network supporting women living with HIV in Indonesia, with 581 individual members in 23 provinces.
Ayu had much to share at the meeting attended by government representatives from 19 Asia-Pacific countries. “We have coordinators working in each province and they all work slightly differently,” says Ayu. “What works in one place does not always work in another – you have to have different ways of working depending on the local context.”
Ayu’s expression turned more serious. “We’ve also found that violence is a big problem for women with HIV. It’s not always about gender, sexual orientation or work – we’ve seen many cases when it’s about a woman with HIV. Violence towards these women can come from partners, family and the society at large.”
‘Living proof that it works’
Marama’s presentation to the delegation drew wide applause, and her opening could hardly have been more powerful. “I am a woman living with HIV. My husband also has HIV and, before we were met, lost two children to AIDS related illnesses. Now, we have two children living without HIV and are living proof that treatment and support can stop the transmission of HIV from parent to child.”
Marama, representing ICWAP, an international community of women living with HIV in Asia Pacific, lives with her family in Tirau, a small town in New Zealand.
Not only has she witnessed the challenges people face around the world, her family have also felt the impacts of stigma in their home town as well.
“We had people in our own town asking us to leave – we were known as ‘the AIDS family’,” says Marama, shaking her head slightly. “Our children were told they must have AIDS, even though they don’t… but we use this to educate people and face the issue head on. We educate people by living around them.”
Like Ayu, she also faced stigma from her own family. “They thought I was irresponsible having children because I’d die soon and that I’d pass it onto my children. They didn’t know that there was treatment to protect ourselves and ways to stop the transmission of HIV to our children.”
Her work, she says, is very focused on testing, counseling and human rights. “Women might not always understand what doctors are telling them, and can be forced or coerced into having treatment. It’s a big, life-long commitment and they need to understand what they are entering into.”
Support at community level
Peer support networks, Marama says, are key to helping mothers. Barriers such as geography or language can make it difficult to make information spread.
For this reason, both Marama and Ayu’s organisations work closely with communities.
Indonesia, a country of over 17,000 islands, is a case in point. “Indonesia is an island country. If you need to meet people or get support, you might have to cross many mountains and seas to reach help,” says Ayu. “Some women are also scared. That’s why we need to work differently in each province.”
UNICEF also works at community level throughout East-Asia Pacific to educate people about HIV. Peer-to-peer support programmes supported by UNICEF in countries like Indonesia and China have demonstrated how, with the right knowledge and skills, communities themselves are key in efforts towards preventing HIV.
Getting all the different support networks together is also a challenge. Maternal and child health services, HIV services, counselling and other care and support services all need to come into play when a person finds out they are HIV positive.
For Ayu, it’s all about the next move. “Once you have the test results, we need to think about everything that comes next – support groups, protection and care services and so on. We need to keep working with the government to address this because right now it’s a huge issue.”
This meeting demonstrated to both Marama and Ayu that there was hope that HIV can be eliminated, but there was still a lot of work ahead. “There’s a real opportunity to work together,” says Marama. “I hope this meeting shows that we all have a part to play to help women and children, and in eliminating HIV.”
With dedicated people like Ayu and Marama working with communities affected by HIV, and with UNICEF’s efforts throughout the region, there’s real hope that we will soon be able to celebrate the elimination of parent-to-child transmission of HIV.