HIV continues to be a public health priority in the Republic of South Sudan with an estimated 2.2 percent prevalence among adults and only 23 percent of people living with HIV on treatment. The COVID-19 pandemic and the resulting socio-economic shocks have created new challenges. Even in the face of these difficulties, work is on-going to ensure continuity of HIV and health services.

The world can end HIV, COVID-19 and other pandemics by addressing health inequalities. People, and especially affected communities, must be at the centre of pandemic preparedness and response. The UNDP-Global Fund partnership is providing critical support to people living with HIV and the communities that support them in the face of the COVID-19 pandemic.

To commemorate World AIDS Day, we documented stories of change by interviewing people living with HIV in South Sudan about how HIV services have transformed their lives, becoming living examples of hope.

Queen Lezzera and Julia — sisterhood

4 November 2021- Juba, South Sudan. Queen Lezzera and her HIV negative child. Photo: UNDP South Sudan/ Peter Kongmalavong

“I was diagnosed in August 2013 and I thought I was going to die. What was worse is that the community started gossiping, and that made my journey accepting my status depressing and difficult. Eight years later, I am still alive and with my baby girl, who is HIV negative. With corona, I didn’t fear. I followed the public health guidelines by washing my hands, social distancing and wearing a mask. I could go on about my life freely and without fear. Treatment was always readily available even during lockdown” — Queen Lezzera

4 November 2021- Juba, South Sudan. Julia poses with her HIV negative child.

“My freedom was more important and that is why I came out proudly as HIV positive.” — Julia

The UNDP-Global Fund partnership worked with the National Empowerment of Positive Women United (NEPWU), the only network of women and girls living with HIV in South Sudan, through Mother to Mother (M2M) support groups that are linked to 39 prevention of mother-to-child transmission (PMTCT) sites. Through follow up of members, 1,500 pregnant women were referred for ante-natal care (ANC), 540 for maternity services, 84 for post-natal services and 123 for ART in 2020. Group members were trained to support women seeking HIV services at the facilities, undertake community sensitization and provide adherence support for those on treatment.

Simon and Lucia — fighting stigma and discrimination

4 November 2021- Juba, South Sudan. Lucia is a community leader for those living with HIV.

Simon and Lucia are well known leaders in the community of people living with HIV. Lucia has been living with HIV for 13 years. Through the support of NEPWU, she developed her leadership and facilitation skills to be an agent of change to fight HIV-related stigma in the community.

“Stigma and fear of disclosing is preventing people from getting early treatment for HIV. Now when I see someone coughing or sick, I will take them to get tested. And if they turn out to be positive, I share my testimony until they accept that they will take their drugs. I will even visit them daily and then weekly to check up on them. It’s my duty to help them integrate back into society and take their drugs.” — Lucia

4 November 2021- Juba, South Sudan. Simon counts the support of friends as vital to the success of his treatment.

Simon who was diagnosed in 2019, believed that he contracted HIV much earlier. His health condition was deteriorating, and his circle of friends started to disappear. He knew that taking his medication was the light at the end of the tunnel.

“It really is to the individual to take it upon themselves to treat their HIV status. The encouragement I can give, is that someone must be there for you when you have tested positive. Friends have to be there, and people have to be there to encourage someone to take the drugs to live longer. If they don’t take the drugs it means their life with be cut short. It is that simple to live longer.” — Simon

Both Simon and Lucia were not afraid of COVID-19 despite themselves both being vulnerable. They responded to COVID-19 with the same urgency as HIV. Simon continues to lead support groups for men living with HIV and Lucia is still one of the most vocal advocates for HIV and human rights. In their late 50s, both know that more has to be done. Especially with the colliding epidemics of HIV and COVID-19.

Ending pandemics

UNDP worked with the government, networks of people living with HIV and others, including PEPFAR, WHO, UNICEF, IOM, Cordaid, and the Arkangelo Ali Association to ensure continuity of integrated HIV and health services. Despite the COVID-19 lockdowns, people that received a positive HIV test were immediately started on antiretroviral treatment.

In 2020, 457,500 people received HIV testing and 42,500 people living with HIV are receiving antiretroviral treatment. The UNDP-Global Fund partnership contributed to a 32 per cent reduction in AIDS-related deaths from 2017 to 2020.

Through the HIV and COVID-19 pandemics — from fighting back despair to triumphing against the odds by leading vibrant and successful lives — communities have been at the forefront of providing protection and basic services to marginalized communities and key populations.

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