Less Alone: How Peer Supporter Helps

Peer support is really important for PLHIV (People Living with HIV), who still face a lot of stigma and shame.

Adinda Silitonga and Rustini Floranita
Siti Maryam Rumkakir
UNICEF/2019/Fauzan

28 November 2019

“If only back then I received even just a little bit of information about HIV, and the test was suggested to pregnant women, maybe Haikal would still be alive today,” said Siti with teary eyes.

Haikal was her first child, he died when he was 8 months old. “He was never tested, because no one was thinking it, but I suspect it might be that,” she added.

Siti Maryam Rumkakir is one of the HIV activists in Sorong City, West Papua. She is currently the West Papua Provincial Coordinator of Ikatan Perempuan Positif Indonesia (IPPI). IPPI is an organization build by and for women with HIV in Indonesia. Since 2018, IPPI supported the Sorong City Health Office for the PMTCT program. UNICEF has also been partnering with Sorong City Health Office since 2008, and since 2018 has been supporting the PMTCT program, especially for EID.

The 32 years old, Siti, is really passionate and active in supporting PLHIV in Sorong, especially pregnant women. This is because she understands how they feel and where they’re coming from, as she has experienced it all. This kind of support is really important for PLHIV, who still face a lot of stigma and shame.

“A lot of the pregnant women we diagnosed with HIV are reluctant to come back for the treatment, but with peer support from IPPI, it makes them feel less alone,” explained Sulce Siwabessy, the Head of Community Health Division at Sorong City Health Office. “We feel the partnership with IPPI has helped to increase the number of pregnant women receiving ART (Antiretroviral Treatment),” she added.

Like a lot of PLHIV (People Living with HIV), Siti had a hard time accepting her status in the beginning. The first time she found out about it, it was at the Sele Be Solu hospital in Sorong. She went there while pregnant for the third time, and after having a hard time keeping her food down for four days. During her visit, the midwife suggested she take the HIV test, as it was the norm. A few days later, they invited her to open her result, and it was positive. She rejected the result, “I told them it’s impossible, I never felt sick before, I didn’t think I have the symptoms. I told them, they must’ve made a mistake somewhere, it must be someone else’s result. I demanded they do another test,” said the mother of three.

 

Siti in Puskesmas
UNICEF/2019/Fauzan
Siti in Puskesmas, sharing information about HIV to pregnant mothers
Siti with doctor
UNICEF/2019/Fauzan
Consultation with the Doctor at Mawar Clinic at Sele Be Solu Hospital

The hospital agreed to do another test, but they asked her to bring her husband and her daughter to the hospital, so they can also get tested. So, she did, and they all got tested together. Her daughter’s and her husband’s result were negative, but hers was again, positive. She then started to take the antiretroviral (ARV) after she got medical check up and a two weeks trial.

It wasn’t really smooth sailing after that. The ARV caused some blisters and made her hate to see her reflections. She felt angry all the time too. She suspected she contracted it from her first partner. Siti was 19 when she got pregnant the first time, and unmarried too, which is still a taboo in Indonesia. She got pregnant by a man who turned out to be married to someone else. He then passed away a week before their baby was born.

 

At one point her anger got the best of her and she break the mirror in her house. Her husband then went away to his parents’ house with their daughter because he thought it was unsafe in the house. Siti went deeper into depression and tried suicide. She drank a bottle of insecticide and woke up in the hospital. As she was lying in the hospital bed, she thought she had to do something. “I prayed to God, I said, if there’s a reason for You to keep me alive, let it be for me to help others, and not just for me to go through tests after tests, I am not that strong,” she said with a little crack in her voice.

Siti consulting
UNICEF/2019/Fauzan
ARV is free in Indonesia

Not long after she gave birth to a healthy baby boy. They tested him when he was 6 weeks old, with EID (Early Infant HIV Diagnosis), and he was negative. Early diagnosis of HIV is very important for initiation of care, treatment, support and to prevent further transmission of HIV. Because of the high risk of death before the age of 2 years among HIV-infected infants, and given the increasing availability of pediatric antiretroviral treatment in many resource-limited settings, UNICEF supported West Papua Province in building the capacity of health providers to provide early virological testing of infants for HIV, since 2018.

After she’s back on her feet, she visited the clinic at the hospital and asked if there’s any group she can join to meet other PLHIV (People Living with HIV) and to learn more about HIV. That was in 2013, and since then she has supported over than 50 people, mostly women, as a peer supporter, and also as a friend. From talking to her, this is not surprising. She shared her story in a very open and straightforward way, not hiding or feeling embarrassed about any of it, but with a warmth that just get you.

“At the very beginning, the biggest challenge was with the health services. They didn’t really accept us as partners. But slowly, especially with our work with the PMTCT program, they have accepted us now,” explained Siti. “The challenge now is in funding, most of us are volunteers, and it cost money to go visit other PLHIV. I used to sell Pia cookies to make some money while doing the visits,” added her.

All those didn’t stop her from doing her work. She even appeared on a couple of videos talking about being a PLHIV in West Papua. She doesn’t hide her status from anyone, and not ashamed of it.

Siti at her house
UNICEF/2019/Fauzan
Writing report for IPPI from her own house in Sorong

“I just hope that there will be no new infection, be it from mothers to babies, or from couples, or from anything. And for people to understand better about HIV, so they won’t discriminate people with HIV.” She told me as we ended the conversation.

*All the names were changed to respect the rights of children and protect their privacy