Nearly half of people living with HIV in Uganda report that they have suffered verbal abuse, harassment and threats as a result of their status.
That is one of the shocking findings of a report compiled by the National Forum of People Living with HIV/AIDS Network, based on a survey of 1,110 adults conducted between December 2012 and January 2013 in 18 districts in Uganda.
Grace,* 28, was a healthy woman with a job in one of the community-based organisations in Lira district in northern Uganda. She was recently diagnosed with HIV. She and her boyfriend decided to have a baby and she is now eight months pregnant. She is on antiretroviral treatment to protect herself and her baby. However, she has also started showing AIDS-related symptoms.
Her colleagues, including close friends, began staying away from her when she needed them most. "Life began becoming unbearable when my supervisor told me that I cannot sit close to him because I could infect him with HIV," Grace said. "I thought of quitting the job, but I continued working because I needed the salary to access treatment and to prepare for my baby's arrival."
Eddie,* 18, lives in central Uganda. Eddie lost his mother to AIDS when he was two years old and was taken to live with his grandmother, who was already looking after five other orphans. According to Eddie, his father did not want anything to do with him because he knew that his days on earth were numbered. "I used to fall sick, but my grandmother only gave me herbs," said Eddie. "My father never cared at all."
"One day a volunteer working with Baylor Uganda came to our home and gave my grandmother information about HIV tests," he said. "I tested HIV positive and I was taken for treatment. Although I am doing fine emotionally and physically, my father wants me taken to the police so that I am killed."
These are testimonies from just a couple of the people living with HIV who are suffering stigma and discrimination from their families, friends and members of the public, upon revealing that they are HIV positive.
Stigma and discrimination
Stigma and discrimination devalue people living with HIV and AIDS. The Uganda National HIV Prevention strategy (2011-2015) identifies stigma as a key driver of the epidemic and says that all efforts should be made to eliminate stigma and discrimination by 2015.
However, the National Forum of People Living with HIV/AIDS Network's new report on stigma revealed that people living with HIV still face gossip, verbal insults, harassment and threats.
According to the research findings, gossip is the most prevalent form of stigma in Uganda, with 58 per cent of respondents saying that they have experienced it.
According to the respondents, gossip leads to other forms of stigma, like blame and questioning of an individual's behaviour.
Challenges for people with HIV
The respondents also said that they don't feel free to seek treatment because they are always subjected to numerous questions, the majority of which they do not have answers for. Over 46 per cent of people experience verbal insults, harassment and threats, as in Eddie's case.
Around 41 per cent of respondents have been excluded from family activities and 34.1 per cent from social gatherings.
Nearly 21 per cent of people living with HIV have been physically assaulted and 20.2 per cent have been excluded from religious activities.
One of the worst forms of stigma was narrated by Magarita*, who lives in Kamuli district in eastern Uganda. Magarita lost her husband in 1999 due to AIDS and was left with five children aged two to 14. She now lives in a two-room house with her mother.
She said: "My family liked me before I fell sick, but now they are discriminating against me to the extent of ringing a bell in the morning for me to pass so that I do not infect them with HIV. I have even contemplated suicide, as I have no one to come and support me."
According to the director general of the Uganda AIDS Commission, Dr David Kihumuuro Apuuli, such findings reveal that stigma and discrimination still hinder access and use of the available HIV services.
Dr Apuuli added: "Sensitisation of the general public on the dangers of stigma and discrimination will help HIV patients embrace quality services in a stigma-free environment."
The executive director of the National Forum for People living with HIV/AIDS Network Uganda, Stella Kentusi, said that if the public's biased attitude towards people with HIV is not addressed, then stigma and discrimination will never end.
*not real names