In Uganda, Stigma Ends Where Community Begins
By Joseph Kalibbala
My aunt, my mom’s sister, was diagnosed with HIV in 2013 when she was staying in Butambala, a village in central Uganda. Her life was okay, she was still strong. But in late 2014, her health started to deteriorate. She started having rashes on her skin, and whenever she walked out to the shops and market, no one wanted to serve her. People would call her names and talk behind her back. She was embarrassed and afraid, so she stayed home.
Staying home had major consequences on her health. She developed opportunistic infections including diarrhea, which led to massive weight loss. And she didn’t go the hospital for medication refills because she didn’t want anyone to know. By the time my Mum and I found out, it seemed my aunt was on her deathbed. I was devastated and I knew she needed specialized care immediately, so I asked my parents to bring her to the capital city of Kampala.
I was working at the time with a community-based NGO that provides comprehensive HIV prevention, care, treatment, and social support to people affected by HIV/AIDS. My aunt started treatment, and she also received extensive counseling and social support. Within six months she was able to reduce viral load (the number of HIV virus particles per milliliter of blood) from over two million copies to just 2,000 copies.
After she stabilized, she joined a social support project at my organization where she started learning tailoring skills and making a steady income. Her hope returned and she finally realized that HIV isn’t a death sentence and that she can live a positive, fulfilling life.
HIV stigma and discrimination continue to hamper efforts to prevent new infections and engage people in HIV treatment, care, and support programs. Although the current data show that the global HIV/AIDS epidemic is stabilizing, statistics still report a high level of new infections. One of the reasons is due to stigma and discrimination, which lead to silence and denial of the disease. As a result, patients avoid testing, refuse to seek treatment, and do not disclose to partners. All of this has negative health consequences, essentially becoming a barrier to medication adherence.
Now my aunt is more energized and offers to tell people about her story. She goes out to various communities and refers clients who are in the same situation she was in. When she shares her experiences, people come up to her and tell her about relatives and people they know living with HIV and how her story has changed their attitude toward people living HIV/AIDS. My aunt has been able to reduce her viral load from 2,000 copies per mL to an undetectable viral load — a result of adherence to medication. Earlier this year, she gave birth to a baby boy through a prevention of mother-to-child program, and the child is HIV-negative.
I’m now working with Planned Parenthood Global here in Uganda. One of our key programs here is Closing the Gap, a project dedicated to increasing awareness of, access to, and use of quality family planning and abortion services in high-need communities within Central and Northern Uganda. Our work with partners encourages integration of HIV services within sexual and reproductive health services to offer a holistic approach to clients. This means all clients — whether they’re HIV-positive or HIV-negative — receive the same quality sexual and reproductive health care, which reduces stigma. Furthermore, most project partners’ health facilities provide HIV testing and counseling services at the very least. Those that don’t have antiretroviral therapy (ART) services refer clients to other health facilities with ART for enrollment. Integration of HIV care within sexual and reproductive health services ensures that ALL clients receive the same services, without stigma or bias, all on the same day.
In order to end stigma, we need to tell our stories. We need to open up social spaces and provide accurate information and counseling. Stories are one of the most powerful ways of communicating information to change people’s behavior and attitudes toward stigma and discrimination. Identifying more effective interventions to end stigma and discrimination that can be integrated into national responses is crucial to the success of the global AIDS response.
Joseph Kalibbala was a Global Health Corps Fellow with Planned Parenthood Global from 2017–2018. Prior to his fellowship, he worked on a variety of approaches to improve quality of care in the implementation of comprehensive HIV/AIDS prevention, care, and treatment in his home country of Uganda. Joseph holds a postgraduate diploma in monitoring and evaluation and a bachelor’s degree in nursing.
