Living a Full Life with HIV
Looking at Ratna is like looking at the proof that PLHIV still can lead a normal life.
“Good morning, students!” Ratna greeted her students from the front of the class.
The 36 year-old teacher looked energetic on that bright, sunny morning in one of the schools in Sorong City, Papua. Looking at her, you would have never guessed that not only had she just given birth less than six month ago, but that she was also living with HIV.
“I found out that I have HIV in 2009. That was after my first husband had gotten sick, and the doctor suggested to me to take the test too,” explained Ratna.
Her husband didn’t survive the illness and passed away after two months. “I wasn’t really surprised with my result, because after I found out about my husband, I already suspected that I would be positive too,” she added.
Ratna’s case is not unique to West Papua, or even to Indonesia. According to Ministry of Health Data in 2016, only 58,7% of People Living with HIV (PLHIV) know their status. While 2018 data indicated that the estimated number of PLHIV in Indonesia is 640,443, only 17% of them are on ARV (antiretroviral) treatment. This is an alarming fact, especially for pregnant women. Without treatment, close to a third of pregnant women will transmit the virus to the baby. ARV treatment helps to reduce the chances to less than 1%.
The PMTCT program started in West Papua in 2009, and UNICEF started supporting us then too. In 2018 we started a new program, also with UNICEF support, EID (Early Infant HIV Diagnosis) for babies from HIV positive mothers. The program was piloted in three locations, and Sorong City is one of them.” Said Rita Apalem, Officer in Charge for Maternal and Child Health (MCH) at West Papua Provincial Health Office, “In 2019, we found 11 HIV+ mothers during their ANC visits in Sorong City and assisted them to receive ARV treatment. All 11 mothers gave birth to beautiful, healthy babies. We did the EID test on them, and all came back negative,” she added proudly; as she should, this is the result of their hard work.
The early diagnosis of HIV is very important for initiation of care, treatment, support and to prevent further transmission of HIV. UNICEF is supporting the West Papua Provincial Health Office to ensure no child is born with HIV. Elimination of new HIV infections among children can be achieved through the scale up of Prevention of Mother-to-Child Transmission (PMTCT) programs.
Ratna was one of the 11 HIV+ mothers, but this wasn’t her first pregnancy. Ratna got married when she was just 22, still a university student in Sorong in 2006, and the next year she gave birth to a baby boy. Back then, she didn’t know her status, and it wasn’t the norm to test pregnant women for HIV during ANC. The boy passed away when he was 4 months old. They never tested the boy, all she knew was that he died from diarrhoea.
In 2008, she got pregnant again, this time with a baby girl. She gave birth to a healthy baby, and when the baby was 8 months old, she lost her husband. She also started her ARV treatment that year. Not long after she started, she got Stevens-Johnson Syndrome or SJS. SJS is a rare but serious skin disorder, often due to reactions to medication. SJS causes skin to blister and peel off, and in Ratna’s case it was all over her body and face, and she had to stay in the hospital for two months.
Despite all of that, Ratna didn’t lose hope. She joined Sorong Sehati, an organization that supports PLHIV in West Papua. She’s also active in the peer support group for PLHIV, and in 2017 she joined IPPI (Ikatan Perempuan Positif Indonesia – Indonesian Positive Women Group) in Sorong. IPPI is a national network initiated by and for women who are living with and affected by HIV established in 2006 in Jakarta, Indonesia. In IPPI Ratna met other PLHIV women, built friendships with them, and makes sure everyone keeps taking their ARV medication.
Starting ARV treatment is not always easy. Once you do, you must take it every day for the rest of your life. Most ARV medication now should be taken once a day at the same time, every day. In West Papua, you can get your dose of ARV in hospital or in some selected health centres. The number of refillssgiven is based on medication adherence. If it is good, a person can come to the Hospital or Health Centre, get checked, and can take home a 3-month supply of ARV medication. ARV treatment is free of charge in Indonesia.
Ratna also found love again. In 2018, after a 4-years courtship, she got re-married. She told him about her status early in the relationship. “I don’t want to hide anything from anyone. I’m open about my status to everyone, our neighbours, my colleagues, everyone,” she said. “At first, he hesitated, he asked for some time to learn about what HIV is. So, he learned, he read up about it, he googled it. Then he told me he wanted to continue our relationship.” Explained Ratna with a big smile on her face.
Her husband asked her about her activities with IPPI and the peer support group, as he was afraid it was taking a lot of her time. But when she was in labour, her husband was out of town, and her friends were there with her, literally holding her hand. “I told him, it’s a good thing I have all these friends, they are there for me when I need them,” she said. “He understands now, and he’s thankful that my friends looked after me while I was in labour.”
Looking at Ratna is like looking at the proof that PLHIV still can lead a normal life. She still has to deal with the stigma every now and then, but most of the time she finds her life to be good. She still teaches her students, mingle with her colleagues, hangs out with her friends, raises her two children, has a husband, and supports other PLHIV around her.
When asked about her hope and wishes for other PLHIV, she said “I wish for no more new infections. And no more discrimination against PLHIV anywhere.”
*All the names were changed to respect the rights of children and protect their privacy