By Kei Emmanuel Duku
About 20 to 50 children living with HIV/AIDS have been abandoned by their parents or guardians in Juba City, National Empowerment of Positive Women United (NEPWU), estimates.
Margret Jokudu Corneliou, a mother mentor with NEPWU, who is also living with HIV/AIDS, said some parents abandoned their children due to lack of access to drugs, distance to health facilities, and the inability to meet daily needs.
Jokudu lamented that when she worked as a volunteer, the incentives paid by NEPWU helped her cover children’s educational needs and that of the family.
According to Jokudu, currently she is caring for three HIV-positive orphans at her home and anticipates challenges in meeting their daily needs due to the US government’s health funding cuts.
“These kids are HIV positive, they have been abounded, and have been separated from eating, sleeping, and drinking water with the rest of the family members. Some of them sleep in poultry houses. Seeing their suffering, I decided to take others in,” Jokudu said.
She explained that NEPWU used to distribute antiretroviral drugs and offer counseling services to HIV patients at the grassroots level. However, after the announcement of the US President’s Emergency Plan for AIDS Relief (PEPFAR) halt, they were laid off, affecting children and parents’ access to critical HIV/AIDS services.
Jokudu said that some children and parents of those living with HIV are located in remote areas.
“They cannot access drugs due to high transport costs and the absence of healthcare services in the villages,” she said.
Under PEPFAR programs, community health workers worked on schedules with affected people, providing refills and other health education services promptly.
Jokudu said the funding cut will likely increase the viral load among children due to the inaccessibility of antiretroviral drugs.
“We used to go to Nesitu and Mangalla distributing drugs, collecting blood samples for testing, offering volunteering counseling and testing services, and other educational services for mothers whose children are positive. But now, we cannot access these people living with HIV. They are missing schedules, and some children have become unruly to their parents,” she added.
The Community Outreach Worker suggested that to reduce the high rate of stigma and discrimination against people living with HIV/AIDS, the government should enact legislation that penalizes perpetrators of discrimination.
Although NEPWU did not specify the exact number of children affected by the halt on HIV/AIDS funds in Juba and other parts of the country, it is estimated that nearly 200,000 individuals are living with HIV in South Sudan.
It further stated that within the short period of the funding halt, about 1,500 people living with HIV/AIDS have missed appointments, and access to ARVs, and experienced interrupted treatment.
Abala Victor Stephen, 42, said he worked at Al Shaba Children’s Hospital-Juba in the Department of Country Operations Plan, remotely distributing drugs to other patients.
Victor argued that PEPFAR through the fund Community outreach health workers offered counseling and encouraged them to declare their status and enroll for treatment contributing to reducing self-stigma.
He added that the funding cut would not only affect their health but also have a ripple effect on their social and economic lives.
“I am a soldier. This funding helped pay my children’s school fees, feed my family, and pay rent. The biggest challenge remains with those children and parents at the grassroots who still experience stigma,” Victor said.
Angelina Ters Laku, a positive living mother and volunteer with NEPWU and the Antenatal Care Centre and Prevention of Mother-to-Child Transmission (PMTCT) unit at Juba Teaching Hospital, said there is a likelihood of reinfections among patients due to the absence of antiviral drugs.
She stated that she receives daily telephone calls from different people living with HIV requesting refills and testing services, while others seek antenatal care services. Since the executive order was issued, her scope of operation has stopped.
Ter Laku added that she spends about 20,000 South Sudanese Pounds daily on transport to meet the critical needs of people living with HIV.
“It’s because we have a heart for humanity that some of us are still working. Otherwise, by today, we wouldn’t be working because requests for HIV/AIDS services are coming from everywhere. I have left my family and mother, relocated, and now sleeping in the hospital so that positive pregnant mothers giving birth can deliver safely,” Ter Laku stated.
Meanwhile, Evelyn Letio Unzi Boki, the Executive Director of NEPWU, attributed the high rate of stigma among children to non-disclosure by their parents. She said that as infected children grow up, they question their parents about why they are the only ones taking medication at home.
Letio said this non-disclosure has caused trauma among children, with some becoming unruly while opting out of treatment plans, affecting their viral suppression.
Onek Benson, NEPWU Program Manager, estimated that about 150,000 South Sudanese people are living with HIV, and their status remains unknown.
He attributed the high rate of stigma among children to the communication gap between parents and children.
The NEPWU Program Manager said communication of HIV/AIDS messages to children should be easier than to adults or their parents.
“If you cannot disclose your HIV/AIDS status, how would your children know their status? It starts with parents.
They should be able to tell their children why they are taking this medication without causing any harm to their mental or emotional health,” Benson concluded.