There is a lot of stigma and discrimination all over the world against people living with HIV/AIDS. A study conducted by UNAIDS in 2017 shows that one in five people living with HIV avoid going to a clinic or hospital because they fear stigma or discrimination related to their HIV status.
Stigma is a set of negative beliefs about a group of people. Often it manifests through labeling a person or a certain group of people as unacceptable in society. Usually it’s in two forms: self or internalized stigma and externally inflicted stigma. Self-Stigma is thoughts and behaviors stemming from the person’s own negative perceptions about him/herself based on the HIV status.
This is when a person living with HIV takes negative comments or stereotypes and applies them to himself. For example, one starts to feel worthless, ashamed to associate with people, and lacks the confidence to seek medical help (due to fear of stigma from others and fear of disclosure of one’s HIV status) leading to depression.
Externally inflicted stigma occurs when a society labels people living with HIV as unacceptable people in the community. For instance, believing that people deserve to get HIV because of their choices, laws which criminalize HIV transmission in countries like Australia also stigmatize people and scare them from revealing their HIV status through regular HIV tests among other forms.
With stigmatization, comes discrimination
Discrimination is the unjust treatment of a category of people based on their race, age, and sex or in this case based on disease. This exists in various forms, domestic discrimination where one refuses to stay or live with an HIV positive person, healthcare discrimination where health care providers refuse to treat a person living with HIV, or charge higher fees to treat a person living with HIV.
It could also exist in form of employment discrimination where people living with HIV face social isolation, termination or refusal of employment all together. Before we stigmatize people living HIV/AIDS, they also stigmatize themselves far too much that any additional external stigma worsens the whole conundrum. When a person tests positive or feels like they are at risk of getting HIV/AIDS, adrenaline rush takes precedence and all the perceptions they had about living with an illness for life start to become a near reality.
Statements like, if I find myself infected, I will commit suicide, how will I tell my family about my illness? Will they accept me? How will my workmates treat me? How will they judge me? How will I live life swallowing tablets on a daily basis? “I cannot live like this.” One would conclude and probably give up on life. So even before society begins stigmatization; more often than desired, patients have already fought through a million battles with the demons inside their own minds. For instance, I know of someone who didn’t disclose their status to the people they were living with and didn’t take ARVs, they had a pile of drugs stocked up from over six months back. This way of life led to many illnesses like heavy and frequent coughs, fevers, diarrhea, skin changes (discoloration) and many other effects.
The patient had probably given up on life, they didn’t eat, or make an effort to ensure that they live to see the next day. Many people have lived through the horror of finding out that they are HIV positive and have gone on to live normal, productive and healthy lives until old age. With so much sexual immorality in today’s generation, the youth ought to know that getting a positive HIV test is not the end of the world. Hospitals in Uganda offer counselling services to patients just after discovery of an infection but stigma affects HIV/AIDS patients months or year into living with the illness.
What needs to be done about stigma?
The Government of Uganda should adopt a human rights-based approach to combat stigma and discrimination. Setting up specific programmes that protect the rights of people living with HIV/AIDS and empower them on how, when and where to take action once their rights are abused. For example, Malawi through the National Association of People Living with and Affected by AIDS has implemented an SMS reporting system to provide real time monitoring and tracking of experiences of stigma and discrimination faced by people living with HIV.
Government should also set up an organization specialized to deal with stigma and discrimination or expand the mandate of Uganda AIDS Commission (UAC) to follow up on people living with HIV/AIDS to ensure that they get empowered with the necessary tools to live healthy and happy lives. Above all, if we want to end HIV/AIDS by 2030 not only in Uganda but the world at large, we should be able to talk openly about HIV to help normalize the subject and correct misconceptions in people’s minds. HIV/AIDS is real and exists!
The writer is a Communication Assistant at Government Citizen Interaction Centre (GCIC), Ministry of ICT & National Guidance.