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In Juba, Women Are on the Front Lines Fighting HIV—and the Stigma Still Attached to It

HIV peer group leaders and members dedicate their time and energy so children, women, and families around the world can get the HIV care they need.

"If not for Rita*, I would've been dead and buried years ago."

That’s what Grace* announced to me and eight women from her HIV peer support group. We sat in the dim light of Rita’s thatch-roofed home, each woman hip-to-hip in a circle.

Grace has been "living positively" (her own words) for close to a decade. She first met Rita, the group’s leader, through a home-based care initiative initially funded by the South Sudan Red Cross Societies.

Her family called her a "walking corpse" and wouldn't take her in.

Grace credits Rita for keeping her alive in the worst of times. Times when she couldn't raise her arms to boil a pot of water for breakfast. And when her family called her a "walking corpse" and wouldn’t take her in. Now with the help of Rita and other members of the group, Grace is on treatment and, with an earnest grin, eager to share her story.

But as of last year, only 8% of people living with HIV (PLHIV) in South Sudan were on treatment. Compared to neighboring countries such as the Democratic Republic of the Congo, Ethiopia, Kenya, and Uganda—which range from 24-57% PLHIV on treatment—South Sudan is far behind.

Persistent conflict in the country—including the civil war in 2013 and the recent fighting in July—has forced millions of people from their homes and cut off access to many clinics that previously provided HIV care and treatment. Stigma related to HIV is also staggeringly high, to the point where women like Grace often avoid getting tested or seeking treatment for fear that disclosing a positive status could lead to violence or abandonment by their husbands, families, and communities. And this stigmatization of people living with HIV has even resulted in parents keeping their status a secret from their children or treating their children who are HIV-positive without telling them what the medication is for.

Last year only 8% of people living with HIV were on treatment in South Sudan.

So today, with a crumbling health system and too few health workers and facilities within reach, it’s women like Grace and Rita who are on the front lines of the fight against HIV in South Sudan. Every day they fight to keep themselves healthy, their partners and children tested and treated, and their communities aware and accepting.

As part of the former Red Cross initiative, Rita worked as a volunteer home-based care provider, visiting adults diagnosed with HIV in her community and providing basic nursing care, nutritional counseling, psychosocial support, treatment adherence follow up, and help with household upkeep. She formed a National Empowerment of Positive Women United (NEPWU) support group in her Kator neighborhood of Juba in 2010. And since the Red Cross program ended in 2015, Rita has continued her home visits and managed to maintain the group’s 30 members—mostly HIV-positive women like Grace whose husbands have died.

The entire group meets twice a month. And Rita still follows up on group members when they fall sick, collects their antiretroviral medication from the hospital if they can’t pick it up themselves, and encourages her group members and people in the community to share their experiences, get tested, and, if positive, get treatment.

Soon Rita’s group and others will become an integral part of the Coordinating Comprehensive Care for Children project (known as 4Children) in South Sudan. 4Children is a global program implemented by a consortium of organizations led by Catholic Relief Services with partners IntraHealth International, Maestral, Pact, Plan International, and Westat. The four-year project in South Sudan will identify and strengthen health and social service networks for children affected by HIV and AIDS and their caregivers in targeted communities in Juba, strengthen their caregivers’ abilities to provide a nurturing and protective environment, and improve their financial stability so children and caregivers are enrolled and maintained in the treatment and social services they need.

4Children will engage HIV peer group leaders like Rita and other community members as case care workers at the area council level to ensure that its interventions succeed in building vulnerable households’ ability to weather and withstand shocks and provide a healthy environment for children. Many case care workers have already received training in positive parenting, which will be followed by further training in HIV-sensitive case management and how to effectively link families to HIV testing, treatment, and other health services; savings and internal lending groups; and other community services.

As a program officer on the 4Children project and a social worker by training, I’ve had the privilege to work alongside my colleagues in South Sudan in launching these activities. I traveled to Juba to develop a plan for implementing the proposed interventions with the new team; as part of that planning process we met with HIV support group leaders and members like Rita and Grace, as well as ministry representatives, hospital social workers, and other NGOs. As the project takes off, with enrollment of households and trainings underway, I look forward to sharing the successes of the team in facilitating access for vulnerable children and families to health and social services.

Today on World AIDS Day, join me in recognizing the important work of women like Rita and Grace who dedicate their time and energy so vulnerable children, women, and families around the world get tested and receive the HIV care and other health and social services they need.

*Names have been changed to protect the privacy of the individuals featured in this blog post.

Learn more about IntraHealth’s HIV/AIDS work.