Doing the small things with a big heart

PAPUA, Indonesia – Every week, Everdina Wanggai invites people living with HIV (PLHIV) in Manokwari to gather at her home and meet others. She likens the group to her collection of seashells, which are arranged based on their common shapes just as the PLHIV are brought together by their shared diagnosis and experiences.

“Something that has patterns is interesting,” she said as she pointed to the shells. “These shells are grouped based on their patterns, meaning everyone who comes must have the same way of thinking so they can be together in this Rumah Inspirasi (Inspiration House).”

Everdina, or Evi as people call her, works as a laboratory coordinator at the Wosi Health Centre in Manokwari, West Papua, where she runs the HIV programme. In 2018, the Wosi Health Centre was chosen to receive support from UNICEF and the Global Fund for training and mentoring for the Prevention of Mother to Child Transmission – Early Infant Diagnostic (PMTCT-EID) programme.

As part of the support, Evi took part in a national level training of trainers programme. During the training, she and other health workers on the front lines of the EID programme were trained to detect HIV, syphilis and hepatitis in newborn children.

EID is an early detection process for newborn children of HIV positive mothers. It is the first step to detecting HIV, providing medication and treatment, and further prevention to ensure that children stay HIV-free. EID ensures that all babies who are exposed to HIV can get tested and, if infected, can get immediate medication and treatment. EID is a vital effort to support the survival of a child.

Evi is a mother of three, and her love for Papua pushes her to continue during the pandemic. “Even though there is COVID now, I still do my work,” she said. “I’m a mother so I feel that those babies born during COVID or who are already under our care, are the responsibility of us mothers.”

In 2019, Evi tested 30 babies born to HIV positive mothers in Manokwari. This year, she has tested 14 samples, with 10 more to go. Evi often has to travel long distances to do her work, like when she needed to go to Teluk Wondana from Manokwari, which took 12 hours of driving. Evi never complains and is happy that the trouble provides results. “My motto is to do the small things with a big heart,” she said.

Working in the HIV programme is not easy and there are many challenges that she faces every day. “There are more downs than ups in the HIV programme,” explained Evi. “But since we have committed to this, we keep fighting.”

For Evi, the ups are when she and her team see a newborn from a PLHIV, and the mother didn’t transmit the virus to the baby. “If HIV is diagnosed during the first trimester, it can be treated with antiretroviral treatment for 6 months.  Then if the EID is negative, I’m very thankful. I am one of the mothers with the privilege to join this programme and help cut transmission from early on.”

Other challenges that she faces are usually cultural, social and related to stigma. Moreover, there are people in remote areas who are illiterate and cannot tell time. This makes it difficult for them to take the HIV medications properly as they need to be taken at the same time every day. They also have a limited understanding of healthcare, especially HIV and the PMTCT programme. To address this, Evi partners with local communities to develop education materials that are available in local dialects.

These challenges do not dampen Evi’s fighting spirit. “I’m so happy to see that the children I tested for EID can grow up healthy and become the next generation, wherever they are,” she said.

“These days in West Papua, and especially in Manokwari, we need education on the HIV programme and health,” she continued. “And we need committed people to help Papua in the fight against HIV. Let’s keep training ourselves to be humble in our work and not let our heart get taller than our head.”