HIV Management for At-Risk Individuals in South Sudan

As the world’s newest nation, South Sudan has faced numerous challenges, including a vicious civil war, famine, flooding and more. It is also one of the poorest countries in the world, where lack of access to food, safety, education, clean water and basic healthcare is a daily threat to millions.

These challenges – along with the Covid 19 pandemic – have many concerned about HIV/AIDS rates – particularly since only some 25% of those living with HIV actually know their HIV status and only 18% of those – the majority of whom are women – are on antiretroviral therapy (ART).

There is a clear and urgent need to expand access to HIV prevention, care and treatment services, including increased education, access to testing, identification, treatment services and follow up/treatment retention. One important way of getting there is by increasing the proportion of  people living with HIV (PLHIV) who: know their HIV status; begin antiretroviral therapy (ART) prior to developing any symptoms; and that they remain on treatment to achieve viral suppression. There is also a need to develop innovative approaches to increase access to HIV testing for men and children.

SOSUCCA – South Sudan Community Change Agency

SOSUCCA – the South Sudan Community Change Agency is a progressive indigenous development organization. It was founded in 2009 by committed and dedicated youth volunteers with the aim of involving youth in overcoming challenges to their home communities, such as HIV/AIDS, sexual and gender-based violence (SGBV), unemployment, conflict and poverty.

SOSUCCA uses an integrated approach in its work with local communities to build their capacities to provide sustainable health and HIV/AIDS services; peace building; civic education; gender mainstreaming; child protection and more.

Testing school girls

Working with Myriad Canada

As part of Myriad Canada’s partnership with Madiro, in collaboration with the Gillian and Adrian Schauer Foundation to support innovation to improve the health of vulnerable communities, Myriad Canada is working with SOSUCCA to increase the number of people who both know their HIV status and are enrolled and retained in HIV treatment services in Mundri West County, South Sudan.

This is being done by through outreach/awareness campaigns and community referrals; increased access to testing; the creation, maintenance and ongoing strengthening of support systems for people on ART to improve adherence and retention rates.

Lillian’s Story

Like so many, Eunice Dokolo has suffered the consequences of the many challenges her country has faced these past decades, including the loss of her daughter who left behind orphans, including 7 year-old Lillian, who came to live with her. It was soon clear to Eunice that Lillian was very sick and losing weight. But due to regional conflict and their very limited finances, Eunice could not access any health facilities.

Lilian and her grandmother, Euninice

Eunice eventually heard about SOSUCCA from a neighbour. Although the possibility of Lillian having HIV never entered her mind, Lillian was tested at a SOSUCCA facility. To Eunice’s great surprise, Lillian was indeed HIV positive.

“Even if Lillian’s mother had known her status,” continues Festo, “she would not have had access to treatment. The lack of information, the long distances to access treatment and the financial constraints all cost her life”.

Following the discovery of her positive status, Lillian was hospitalized and began treatment. Although Eunice was elated at Lillian’s progress, she was very worried about how she could continue to provide for her ‘Little Lillian’. “I’m glad that Lillian is now on HIV drugs and hopeful she will get better and live a better positive life.  She needs to go school but it’s not possible because I don’t have a work and I can’t pay school fees. Even feeding sometimes is hard for us.”

Indeed, Eunice quickly realized that she could not continue to care for Lillian, causing her situation to deteriorate and number of infections to develop. The SOSUCCA project coordinator for this area realized the urgency of the situation and that an urgent intervention was needed – however there were no viable options. Unwilling to give up on Lillian and leave her in that situation, the project coordinator took her home in order to provide her with the care she needs.

Youth displaying their test cards

Hope for the Future

Sadly, these situations are all too common in South Sudan. “Already at her young age, Lillian feels lonely, empty, hopeless and not wanted. She has no one to call mum, no father, doesn’t go to school, has no friends to play with. She has no smile on her face,” Festo sadly shares.

The team at SOSUSSA

But Festo and the team at SOSUCCA do not give up hope. They know that with trauma counseling and ongoing support to accompany her out of the situation she is in, Lillian – and others like her – can find a way forward. With the needs so great and the resources so few, they realize that this is still an upwards climb. Still, Festo insists “I can see hope in Lillian – and I feel there is hope for her.”

For more information or to support this project, please contact Ronit Yarosky at ronit@myriadcanada.org