The theme for the 2023 World AIDS Day – Let Communities Lead, underscores the need for organisations of communities living with, at risk of, or affected by HIV to be at the frontline of progress in the HIV response. It is a call to action to support communities in their leadership roles. We spoke to two leaders in South Sudan working in close collaboration with UNDP. Here are excerpts.
Leaders of PLHIV Welcome World AIDS Day Theme as Empowering
November 30, 2023
Evelyn Letio Unzi Boki, Program Coordinator, National Empowerment of Positive Women United (NEPWU)
NEPWU is a women-led organization founded by women and girls, living with and affected by HIV/AIDS.
The theme for this year’s World AIDS Day is the best since we started commemorating the day and I hope that it can be maintained in the coming years. It is the best to us because it gives us power. It empowers us; it encourages us to even do more. Community leadership and engagement is very key to the HIV response. Communities give HIV a face so that many who still fear also come out, get tested and enroll on treatment.
The communities support each other and work on a voluntary basis which other people cannot. For instance, at NEPWU, we have mentor mothers and fathers and community outreach volunteers supporting and caring for the bedridden in their communities. We have, without even gloves, washed wounds of those who are bedridden; the little we have, we share, and we became a family. They have helped people stigmatized and discriminated against by family members and friends, and encouraged people who test positive to enroll for and adhere to treatment.
South Sudan doesn’t have a national HIV policy yet there are many issues of discrimination, divorce, GBV and SGBV related to HIV, which it could address. Stigma and discrimination are rampant and, to make it worse, programmes are drifting away from general awareness to targeted awareness focusing on the most at-risk groups. Persons living with HIV have very unique abilities, including powerful testimonies that can inspire others to accept their HIV-positive status, start medication and live positively.
Increasing government funding
The Government has left persons living with HIV in the hands of the donors! If the donors leave tomorrow, our hospitals will have no medicine. I urge our government to take care of its people by investing in health.
HIV infections take place in the community and it’s in the community that we need to address the root causes of HIV and AIDS. In the communities, we have different categories of key population groups such as sex workers and truck drivers.
Community groups have supported the response in South Sudan through their networks. For instance, by engaging and working with sex workers and community counsellors, we have reduced infections and mortalities, strengthened awareness about HIV and AIDS and supported many to enroll for and adhere to treatment. At the national level, we are encouraging all community-based organizations (CBOs) to have a component on HIV and AIDS in their interventions because AIDS is a problem to the whole country, and not just individuals.
As a result of these interventions, people are living healthy, long and happy lives. Some are living positively for 30 to 40 years! This is because they know the disease and how to live with it. They take drugs, avoid stress, alcohol and substance abuse and have declared their HIV status which has helped them overcome the stigma and discrimination.
The main challenge is poverty, meaning that many people cannot afford to have good nutrition, which is necessary to support the treatment that they take. The donors now fund targeted awareness focusing on key populations which has its limitations compared to the general population awareness.
Call to action
I urge the Government to offer a good operating environment and contribute funds to the HIV response for increased local ownership of the response.
The population should stop looking at people living with HIV as people waiting to die. HIV is a disease like any other; with medication, one can live for a long time.